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Mechanisms of change in self-care in adults with heart failure receiving a tailored, motivational interviewing intervention. Riegel Barbara,Dickson Victoria Vaughan,Garcia Lydia Elena,Masterson Creber Ruth,Streur Megan Patient education and counseling Self-care is challenging but we previously demonstrated that motivational interviewing (MI) was effective in improving heart failure (HF) self-care. OBJECTIVE:To identify the mechanisms of intervention effectiveness by elucidating the MI techniques used and the relationship between the techniques and changes in self-care. METHODS:Audiotaped sessions (first and subsequent sessions) from 8 participants were transcribed verbatim and coded to evaluate changes in self-care. Using a sequential mixed method design, quantitative and qualitative self-care data were triangulated; congruence was 97%. The MI techniques used and mechanisms of intervention effectiveness were identified from the qualitative data. RESULTS:Three MI techniques used were related to improved self-care: 1) reflection and reframing, 2) genuine empathy, affirmation, and humor, and 2) individualized problem solving. These techniques stimulated openness to goal setting, positive self-talk, perceived ability to overcome barriers, and change talk. The mechanisms by which the techniques achieved the desired outcomes were the development of discrepancy and self-efficacy, which are consistent with the principles of MI. CONCLUSION:This study contributes to clarifying the mechanism by which MI facilitates behavioral change. PRACTICE IMPLICATIONS:Using MI to discuss self-care can help to overcome barriers and engage HF patients in goal setting for behavior change. 10.1016/j.pec.2016.08.030
Self-efficacy, Hope as Mediators Between Positive Coping and Resilience Among Patients With Gastric Cancer Before the First Chemotherapy. Wu Xiaoting,Xu Haibo,Zhang Xiaomin,Han Shiyu,Ge Liuna,Li Xiaohui,Zhang Xinqiong Cancer nursing BACKGROUND:Patients with gastric cancer experience severe psychological distress as a result of their cancer diagnosis and chemotherapy. Resilience is a defense mechanism that enables one to thrive amid distress. However, little research has been done to explore the formation and development mechanism of resilience among patients with gastric cancer before their first chemotherapy treatment. OBJECTIVE:The mediating roles of self-efficacy and hope on the relationship between positive coping and resilience among patients with gastric cancer before their first chemotherapy treatment were examined to inform the future resilience intervention. METHODS:A total of 253 patients with gastric cancer before their first chemotherapy treatment were investigated using the Simplified Coping Style Questionnaire, the General Self-efficacy Scale, the Herth Hope Index, and the 14-Item Resilience Scale. Structural equation modeling was conducted using Mplus version 7.03 to test the hypothesized mediational model. RESULTS:Structural equation modeling analysis showed self-efficacy and hope completely mediated the relationship between positive coping and resilience; the indirect effects were 0.242 (P < .01) and 0.258 (P < .01), respectively; indirect effects accounted for 81% of the total effect. CONCLUSIONS:Positive coping is not the independent predictor that may contribute to resilience among patients with gastric cancer before their first chemotherapy treatment, but it can indirectly affect resilience through self-efficacy and hope. IMPLICATIONS:Self-efficacy and hope may increase the positive influence of positive coping on resilience among patients with gastric cancer before their first chemotherapy treatment. Resilience intervention might be enhanced by addressing the impact of positive coping on self-efficacy and hope. 10.1097/NCC.0000000000000753
Associations among anxiety, self-efficacy, and self-care in rural adolescents with poorly controlled asthma. Annals of allergy, asthma & immunology : official publication of the American College of Allergy, Asthma, & Immunology BACKGROUND:Rural adolescents are vulnerable to asthma; good self-care can reduce morbidity. The subtypes of anxiety (eg, asthma-related, generalized) may have differential associations with asthma self-care. Low self-efficacy, a determinant of behavior, is associated with increased anxiety. Little is known regarding these relationships in rural adolescents. OBJECTIVE:To evaluate whether anxiety symptoms are associated with asthma symptom prevention and management among rural adolescents and whether self-efficacy mediates these relationships. METHODS:We used baseline data from 197 rural adolescents (mean age = 16 years; 69% girls; 62% Black) who were part of a trial that tested the effectiveness of a school-based asthma intervention. Adolescents completed the Youth Asthma-Related Anxiety Scale, Screen for Child Anxiety and Emotional Disorders, Asthma Management Self-efficacy Index, and Asthma Prevention and Management Indices. Linear regression was performed to test whether: (1) asthma-related and generalized anxiety had curvilinear relationships with self-care; (2) social and separation anxiety had linear relationships with self-care; and (3) self-efficacy mediated relationships. RESULTS:Asthma-related anxiety had a significant curvilinear relationship with prevention (P = 0.001) and a linear association with management (P = .01). Generalized anxiety had a significant curvilinear association with management (P = .03), whereas social anxiety had a significant linear relationship with prevention (P = .04). Self-efficacy partially or fully mediated these relationships. CONCLUSION:Anxiety symptoms were associated with asthma self-care among this sample of rural adolescents, with differing roles for prevention and management. Self-efficacy may be a mechanism to improve asthma self-care among rural adolescents with anxiety. With a lack of self-efficacy, asthma-related, generalized, or social anxiety may motivate adolescents to take steps to care for their asthma. 10.1016/j.anai.2021.09.010
Development and Preliminary Evaluation of Psychometric Properties of Symptom-Management Self-Efficacy Scale for Breast Cancer Related to Chemotherapy. Liang Shu-Yuan,Wu Wei-Wen,Kuo Chiu-Ya,Lu Yu-Ying Asian nursing research PURPOSE:The purpose of this study was to develop and preliminarily evaluate the reliability and validity of the Symptom-Management Self-Efficacy Scale-Breast Cancer (SMSES-BC) related to chemotherapy. METHODS:The study included three stages. This paper presents the results of stage 2 and stage 3. In total, 34 items in the SMSES-BC were found during stage 1 from qualitative findings, a literature review, and expert suggestions; the 34 items were used for the psychometric properties test. Test-retest reliability and Cronbach α were assessed in the first sample, which included 45 participants for the pilot test (stage 2). The second sample, which included 152 patients, was used to assess the construct validity and concurrent validity (stage 3). RESULTS:The pilot test results revealed a test-retest reliability of .73 (p < .001) and Cronbach α coefficient of .96 for the total scale. Three factors (managing chemotherapy-related symptoms, acquiring problem solving, and managing emotional and interpersonal disturbances) were identified from exploratory factor analysis. Correlation coefficient r was .40 (p < .001), which supported the association between SMSES-BC and the General Self-Efficacy Scale for concurrent validity. CONCLUSIONS:The study results demonstrate acceptable reliability and validity for the SMSES-BC that was developed for measuring symptom-management self-efficacy related to chemotherapy for patients with breast cancer. This study suggests further research to validate the construct of the SMSES-BC. 10.1016/j.anr.2015.09.001
The "PalliActive Caregivers" Intervention for Caregivers of Patients With Cancer in Palliative Care: A Feasibility Pilot Study. Arias-Rojas Mauricio,Carreño-Moreno Sonia,Arias-Quiroz Natalia Journal of hospice and palliative nursing : JHPN : the official journal of the Hospice and Palliative Nurses Association This pilot study aimed to assess the feasibility and possible effects of the "PalliActive Caregivers," nursing intervention, on the uncertainty in illness and quality of life of family caregivers of patients with cancer receiving palliative care. This pilot study used a randomized controlled design. The participants were 80 family caregivers. The experimental group received the novel "PalliActive Caregivers" intervention. Data were collected using a sociodemographic form, the Uncertainty in Illness Scale, the Quality of Life scale, and an Intervention satisfaction questionnaire. The caregivers who received the intervention "PalliActive Caregivers" reported a high degree of satisfaction (9.74 on a 10-point scale). The intervention showed a significant decrease in uncertainty regarding illness in the experimental group (P = .009), as well as a significant decrease in the psychological well-being of quality of life within the experimental and control groups, before and after the intervention (P = .013, P = .010). It is recommended that future studies using the "PalliActive Caregivers" intervention examine the effects on other variables such as the burden of patient's symptoms, caregiver burden and rewards, self-efficacy in symptom management, competence, unmet needs, and satisfaction with care. 10.1097/NJH.0000000000000696
Development and psychometric evaluation of the Caregiver Caregiving Self-Efficacy Scale for family members with oral cancer. International journal of nursing practice AIM:The aim of this study was to develop and initially assess the psychometric properties of the Caregiver Caregiving Self-Efficacy Scale-Oral Cancer (CSES-OC). METHODS:In total, 28 items in the Caregiver Caregiving Self-Efficacy Scale-Oral Cancer were originally employed for a reliability and validity test based on expert suggestions and qualitative findings. The Cronbach's alpha coefficient and test-retest reliability were evaluated with the pilot sample, which included 30 caregivers. The main test, which included 107 caregivers during May 2016 to 2018, was used to execute the exploratory factor analysis (EFA) and concurrent validity. RESULTS:The results of the main test showed a Cronbach's alpha coefficient of .95 for the revised 18-item total scale after EFA. Four factors (acquiring resources, managing sudden and uncertain patient conditions, managing patient-related nutritional issues and exploring and making decisions on patient care) were classified from EFA of the Caregiver Caregiving Self-Efficacy Scale-Oral Cancer. The r coefficient was .59 (P < .01), which supported the concurrent validity between CSES-OC and General Self-Efficacy Scale. CONCLUSION:The study results show appropriate psychometric properties for the Caregiver Caregiving Self-Efficacy Scale-Oral Cancer that was constructed for evaluating caregiver caregiving self-efficacy in caring for family members with oral cancer. 10.1111/ijn.12957
Development of an instrument to measure self-efficacy in caregivers of people with advanced cancer. Ugalde Anna,Krishnasamy Meinir,Schofield Penelope Psycho-oncology OBJECTIVE:Informal caregivers of people with advanced cancer experience many negative impacts as a result of their role. There is a lack of suitable measures specifically designed to assess their experience. This study aimed to develop a new measure to assess self-efficacy in caregivers of people with advanced cancer. METHODS:The development and testing of the new measure consisted of four separate, sequential phases: generation of issues, development of issues into items, pilot testing and field testing. In the generation of issues, 17 caregivers were interviewed to generate data. These data were analysed to generate codes, which were then systematically developed into items to construct the instrument. The instrument was pilot tested with 14 health professionals and five caregivers. It was then administered to a large sample for field testing to establish the psychometric properties, with established measures including the Brief Cope and the Family Appraisals for Caregiving Questionnaire for Palliative Care. RESULTS:Ninety-four caregivers completed the questionnaire booklet to establish the factor structure, reliability and validity. The factor analysis resulted in a 21-item, four-factor instrument, with the subscales being termed Resilience, Self-Maintenance, Emotional Connectivity and Instrumental Caregiving. The test-retest reliability and internal consistency were both excellent, ranging from 0.73 to 0.85 and 0.81 to 0.94, respectively. Six convergent and divergent hypotheses were made, and five were supported. CONCLUSIONS:This study has developed a new instrument to assess self-efficacy in caregivers of people with advanced cancer. The result is a four-factor, 21-item instrument with demonstrated reliability and validity. 10.1002/pon.3160
The influence of dyadic symptom distress on threat appraisals and self-efficacy in advanced cancer and caregiving. Ellis Katrina R,Janevic Mary R,Kershaw Trace,Caldwell Cleopatra H,Janz Nancy K,Northouse Laurel Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer PURPOSE:Physical and psychological symptoms experienced by patients with advanced cancer influence their well-being; how patient and family caregiver symptom distress influence each other's well-being is less understood. This study examined the influence of patient and caregiver symptom distress on their threat appraisals and self-efficacy to cope with cancer. METHODS:We conducted a secondary analysis of baseline data from an RCT that enrolled patients with advanced cancer and their family caregivers (N = 484 dyads). Structural equation modeling and the actor-partner interdependence mediation model (APIMeM) were used to examine two models: threat appraisals as a mediator of the relationship between symptom distress and individual and family-related self-efficacy; and, self-efficacy (individual and family dimensions) as mediators of the relationship between symptom distress and threat appraisals. RESULTS:Data suggest the self-efficacy mediation model was the preferred model. More patient and caregiver symptom distress was directly associated with their own lower self-efficacy and more threatening appraisals. Patient and caregiver individual self-efficacy also mediated the relationship between their own symptom distress and threat appraisals. There were also significant interdependent effects. More patient symptom distress was associated with less caregiver family-related self-efficacy, and more caregiver symptom distress was directly associated with more threatening patient appraisals. CONCLUSIONS:Patient and caregiver symptom distress influenced their own and in some cases each other's cognitive appraisals. Limitations of this study include the use of cross-sectional data and assessments of individually-focused (vs. family-focused) threat appraisals. These findings highlight the need to consider the management of patient and caregiver symptoms during advanced cancer. 10.1007/s00520-016-3385-x
The relationship between self-efficacy and anxiety and general distress in caregivers of people with advanced cancer. Ugalde Anna,Krishnasamy Meinir,Schofield Penelope Journal of palliative medicine BACKGROUND:Informal caregivers take on an important role in supporting people with advanced cancer but experience significant psychological distress. OBJECTIVE:This study aims to describe the prevalence of anxiety and distress in a sample of caregivers of people with advanced cancer and explore the relationship with self-efficacy. METHODS:A cross-sectional survey was used. Subjects were 94 caregivers of people with advanced cancer recruited from a specialist oncology setting. Questionnaires included the Caregiver Self-Efficacy Scale (CaSES), the State Trait Anxiety Inventory (STAI), and the Distress Thermometer. Demographic data were recorded. RESULTS:The sample consisted of 94 caregivers of people with advanced cancer. The majority were female (66; 70.2%) with a mean age of 55 years. The mean distress score for the sample was 4.87 (standard deviation [SD] 2.49). Fifty-five caregivers (59.1%) had a score of ≥5 on the Distress Thermometer indicating distress. The state anxiety mean was 45.21 (SD 12.32) and trait anxiety mean was 41.21 (SD 10.143). Females had more distress and state anxiety than males. Only one self-efficacy scale, self-maintenance, correlated with distress. All STAI scores correlated with self-efficacy and self-maintenance had the strongest relationship. CONCLUSIONS:Caregivers had high anxiety and distress. Caregivers with higher anxiety reported lower self-efficacy. The strongest correlation was with the self-maintenance subscale, indicating an association with psychological functioning and caregivers who are able to access respite and take care of themselves during care provision. 10.1089/jpm.2013.0338
The effect of routine training on the self-efficacy of informal caregivers of colorectal cancer patients. Havyer Rachel D,van Ryn Michelle,Wilson Patrick M,Griffin Joan M Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer PURPOSE:Little is known about the degree to which caregiver training as part of routine clinical care influences caregiver self-efficacy. The objective of this study was to examine the relationship between training during routine clinical cancer care and self-efficacy among caregivers of colorectal cancer patients. METHODS:Caregivers completed a self-administered questionnaire about their experiences with training for specific patient problems and about their task-specific and general caregiving self-efficacy. Associations between training and self-efficacy were examined for each problem using multivariate logistic regression adjusted for caregiver age, race, care burden, education, perception of patient's health, and patient stage of disease. RESULTS:Four hundred seventeen caregivers completed the survey (70% response rate), of whom 374 (90%) were female and 284 (68%) were the patient's spouse/partner. Overall, 77 (38%) reported inadequate training for pain, 80 (38%) for bowel, 121 (48%) for fatigue, 65 (26%) for medication administration, and 101 (40%) for other symptoms. The odds of having low self-efficacy were significantly higher among those with perceptions of inadequate training across the following cancer-related problems: pain 10.10 (3.36, 30.39), bowel 5.04 (1.98, 12.82), fatigue 8.45 (3.22, 22.15), managing medications 9.00 (3.30, 24.51), and other 3.87 (1.68, 8.93). CONCLUSIONS:Caregivers commonly report inadequate training in routine colorectal cancer care. Significant and consistent associations between training adequacy and self-efficacy were found. This study supports the value of training caregivers in common cancer symptoms. Further work on how and when to provide caregiver training to best impact self-efficacy is needed. 10.1007/s00520-016-3494-6
Enhanced coping and self-efficacy in caregivers of stem cell transplant recipients: Identifying mechanisms of a multimodal psychosocial intervention. Jacobs Jamie M,Nelson Ashley M,Traeger Lara,Waldman Lauren,Nicholson Showly,Jagielo Annemarie D,D'Alotto Jennifer,Greer Joseph A,Temel Jennifer S,El-Jawahri Areej Cancer BACKGROUND:In a recent trial, a 6-session intervention (BMT-CARE) integrating medical information with cognitive-behavioral strategies improved quality of life (QOL), mood, coping skills, and self-efficacy for family/friend caregivers of hematopoietic stem cell transplantation (HCT) recipients. This study examined whether improvements in coping and self-efficacy mediated the intervention effects on QOL and mood. METHODS:From December 2017 to April 2019, 100 caregivers of HCT recipients were enrolled into a randomized clinical trial of BMT-CARE versus usual care. Caregivers completed self-report measures of QOL (CareGiver Oncology Quality of Life questionnaire), depression and anxiety symptoms (Hospital Anxiety and Depression Scale), coping skills (Measure of Current Status), and self-efficacy (Cancer Self-Efficacy Scale-Transplant) at enrollment (before HCT) and 60 days after HCT. Causal mediation regression models were used to examine whether changes in coping and self-efficacy mediated intervention effects on QOL as well as depression and anxiety symptoms. RESULTS:Improvements in 60-day QOL in patients assigned to BMT-CARE were partially mediated by improved coping and self-efficacy (indirect effect, 6.93; SE, 1.85; 95% CI, 3.71-11.05). Similarly, reductions in 60-day depression and anxiety symptoms were partially mediated by improved coping and self-efficacy (indirect effect for depression, -1.19; SE, 0.42; 95% CI, -2.23 to -0.53; indirect effect for anxiety, -1.46; SE, 0.55; 95% CI, -2.52 to -0.43). Combined improvements in coping and self-efficacy accounted for 67%, 80%, and 39% of the total intervention effects on QOL and depression and anxiety symptoms, respectively. CONCLUSIONS:Coping and self-efficacy are essential components of a brief psychosocial intervention that improves QOL and mood for caregivers of HCT recipients during the acute recovery period. LAY SUMMARY:A 6-session program (BMT-CARE) focused on providing medical information, caregiving skills, and self-care and coping strategies has been previously reported to improve the quality of life and mood of caregivers of hematopoietic stem cell transplantation recipients in comparison with caregivers who receive care as usual. Using statistical models, this study suggests that learning coping skills and improving self-efficacy are the most essential components of this program that likely lead to better quality of life and mood for caregivers. 10.1002/cncr.33191
The relationship between family functioning and caregiving appraisal of dementia family caregivers: caregiving self-efficacy as a mediator. Liu Hsin-Yi,Huang Lian-Hua Aging & mental health OBJECTIVES:The aim of this study was to explore caregiving self-efficacy as a mediator for the association between family functioning and caregiving appraisal of dementia family caregivers in Taiwan. METHOD:This study adopted a cross-sectional correlational design. Purposive sampling was used to recruit 115 dyads of dementia patients and family caregivers from the outpatient neurological clinics of two hospitals in northern Taiwan. Data were gathered through interviews with a structured questionnaire, which included demographic characteristics for caregivers and patients, family functioning, caregiving self-efficacy, as well as positive and negative aspects of caregiving appraisal. RESULTS:Family functioning, patients' activities of daily living score, Neuropsychiatric Inventory caregiver distress, and three domains of self-efficacy were significantly associated with caregiver burden. Hierarchical multiple regression analyses indicated that self-efficacy for obtaining respite (SE-OR) significantly explained 20.5% of the variance in caregiver esteem. Caregiver perceived worsened health status, family functioning, and SE-OR significantly explained 59% of the variance in caregiver burden. The mediation test only supported the partially mediating role of SE-OR on the relationship between family functioning and caregiver burden, while the mediating effect of self-efficacy for responding to disruptive behaviours and controlling upsetting thoughts were insignificant. CONCLUSION:Our findings provided preliminary evidence for health professionals recommending that future studies should assess the family dynamic and health problems of caregivers, and develop appropriate family-centred interventions that focus on strengthening interfamily support and respite services to alleviate caregiver burden. 10.1080/13607863.2016.1269148
Symptom-Management Self-efficacy Mediates the Effects of Symptom Distress on the Quality of Life Among Taiwanese Oncology Outpatients With Breast Cancer. Liang Shu-Yuan,Chao Ta-Chung,Tseng Ling-Ming,Tsay Shiow-Luan,Lin Kuan-Chia,Tung Heng-Hsin Cancer nursing BACKGROUND:Theory has suggested that self-efficacy plays an important role in facilitating health behaviors and, in turn, promoting healthy outcomes. However, limited research has focused on the mechanisms through which symptom-management self-efficacy acts as a mediator between symptom distress and quality of life (QOL) for patients with breast cancer who have undergone chemotherapy. OBJECTIVE:The purpose of this study is to examine the association between symptom distress and QOL among Taiwanese oncology outpatients with breast cancer and proposed symptom-management self-efficacy as a mediator between symptom distress and QOL. METHODS:This cross-sectional study included 201 oncology outpatients in 1 teaching hospital in the Taipei area of Taiwan. The research instruments included the Symptom-Management Self-Efficacy Scale-Breast Cancer, the symptom distress scale, and the European Organization for Research and Treatment of Cancer Quality of Life Group Questionnaire. Bootstrapping was used to statistically assess the possible mediating effects of self-efficacy on QOL. RESULTS:Symptom-management self-efficacy mediated the association between symptom distress and global QOL (indirect effect, -6.33; 95% confidence interval [CI], -9.63 to -3.74), functional QOL (indirect effect, -4.47; 95% CI, -7.05 to -2.36), and symptom QOL (indirect effect, 2.59; 95% CI, 1.07-4.83). All of the 95% CIs were significant. The lower symptom distress that patients experienced was indirectly associated with better QOL through higher self-efficacy. CONCLUSIONS:Symptom management self-efficacy may be a crucial mechanism through which symptom distress influences patients' QOL. IMPLICATIONS:Clinicians may incorporate strategies focused on improving patients' self-efficacy in relation to managing their symptoms caused by chemotherapy to improve patients' QOL. 10.1097/NCC.0000000000000244
Cancer-Relevant Self-Efficacy Is Related to Better Health-Related Quality of Life and Lower Cancer-Specific Distress and Symptom Burden Among Latina Breast Cancer Survivors. Baik Sharon H,Oswald Laura B,Buitrago Diana,Buscemi Joanna,Iacobelli Francisco,Perez-Tamayo Alejandra,Guitelman Judy,Diaz Alma,Penedo Frank J,Yanez Betina International journal of behavioral medicine BACKGROUND:Latina breast cancer survivors (BCS) often report poorer health-related quality of life (HRQOL), higher symptom burden, and greater psychosocial needs compared to non-Latina BCS. However, Latinas are underrepresented in cancer survivorship research and more work is needed to examine the factors contributing to these psychosocial disparities. This study aimed to evaluate potentially modifiable patient characteristics associated with HRQOL, breast cancer concerns, and cancer-specific distress among Latina BCS. METHODS:Baseline data was evaluated in 95 Latina BCS who participated in a smartphone-based psychosocial intervention designed to improve HRQOL. Hierarchical linear regression analyses were conducted to evaluate the associations between modifiable factors that have been shown to favorably impact outcomes in cancer populations (i.e., cancer-relevant self-efficacy, breast cancer knowledge) with overall and domain-specific HRQOL, breast cancer symptom burden, and cancer-specific distress, after controlling for sociodemographic and cancer-related characteristics. RESULTS:Greater cancer-relevant self-efficacy was related to better overall HRQOL as well as better social, emotional, and functional well-being domains. Greater cancer-relevant self-efficacy was also related to less breast cancer symptom burden and less cancer-specific distress. Breast cancer knowledge was not associated with any of the study outcomes. CONCLUSIONS:Results demonstrate that cancer-relevant self-efficacy is a significant correlate of general and domain-specific HRQOL, breast cancer symptom burden, and cancer-specific distress among Latina BCS. Future interventions in this population should target cancer-relevant self-efficacy as a possible mechanism to improve HRQOL outcomes and survivorship experiences for Latina BCS. 10.1007/s12529-020-09890-9
Evaluation of an Online Home Caregiver Support Program for Non-Professional Caregivers of Patients With Palliative Care Needs. The American journal of hospice & palliative care BACKGROUND:Caring for loved ones with palliative needs can be very stressful for carers'. To address this growing issue, an online Home Caregiver Support Program course was created to provide information to non-professional home caregivers about end-of-life care. OBJECTIVES:To measure non-professional caregivers' perceived level of competence in addressing physical, psychological, social, and spiritual needs before and after completing online training modules. METHODS:Learners rated their competence before and after completing online modules addressing 4 key dimensions relevant to palliative caregivers. Self-ratings of competence were assessed through surveys, completed before and after the online modules. Scores from before and after each module were compared to determine if the online course had increased participant competence. The Wilcoxon signed rank test was used to analyze participant responses to the pre- and post-survey questions. RESULTS:A total of 176 participants who completed one or more of the online modules between July 2017-December 2018, 70 (40%) of the participants completed at least one pre- and post-module survey and did not declare themselves as a professional caregiver. Participating in the online Home Caregiver Support Program increased participants' ratings of perceived competence in all domains (p < .01). This significance was maintained when professional caregivers were added to our analysis. CONCLUSION:After the completing the modules, participants' self-ratings of perceived competence increased suggesting that participants completing the online program had improved knowledge in addressing the physical, psychological, social, and spiritual challenges faced by non-professional caregivers. 10.1177/1049909120968257
The Role of a Symptom Assessment Tool in Shaping Patient-Physician Communication in Palliative Care. Brooks Joanna Veazey,Poague Claire,Formagini Taynara,Sinclair Christian T,Nelson-Brantley Heather V Journal of pain and symptom management CONTEXT:Patients with cancer experience many symptoms that disrupt quality of life, and symptom communication and management can be challenging. The Edmonton Symptom Assessment System (ESAS) was developed to standardize assessment and documentation of symptoms, yet research is needed to understand patients' and caregivers' experiences using the tool and its ability to impact patient-provider aligned care. OBJECTIVES:The objective of this study was to understand how the ESAS shapes communication between patients and providers by exploring patients' and caregivers' experiences using the ESAS and assessing the level of agreement in symptom assessment between patients and palliative care physicians. METHODS:This study used a mixed-methods design. Thirty-one semistructured interviews were conducted and audio-recorded with patients (n = 18) and caregivers (n = 13). Data were analyzed following a social constructionist grounded theory approach. Patient and provider ESAS scores were obtained by medical chart review. Intraclass correlation coefficients were used to assess the level of agreement between patient-completed ESAS scores and provider-completed ESAS scores. RESULTS:Participants reported that the ESAS was a beneficial tool in establishing priorities for symptom control and guiding the appointment with the palliative care physician, despite challenges in completing the ESAS. Filling out the ESAS can also help patients more clearly identify their priorities before meeting with their physician. There was a good to excellent level of agreement between patients and physicians in all symptoms analyzed. CONCLUSION:The ESAS is beneficial in enhancing symptom communication when used as a guide to identify and understand patients' main concerns. 10.1016/j.jpainsymman.2019.08.024
Precision health: Advancing symptom and self-management science. Hickey Kathleen T,Bakken Suzanne,Byrne Mary W,Bailey Donald Chip E,Demiris George,Docherty Sharron L,Dorsey Susan G,Guthrie Barbara J,Heitkemper Margaret M,Jacelon Cynthia S,Kelechi Teresa J,Moore Shirley M,Redeker Nancy S,Renn Cynthia L,Resnick Barbara,Starkweather Angela,Thompson Hilaire,Ward Teresa M,McCloskey Donna Jo,Austin Joan K,Grady Patricia A Nursing outlook BACKGROUND:Precision health considers individual lifestyle, genetics, behaviors, and environment context and facilitates interventions aimed at helping individuals achieve well-being and optimal health. PURPOSE:To present the Nursing Science Precision Health (NSPH) Model and describe the integration of precision health concepts within the domains of symptom and self-management science as reflected in the National Institute of Nursing Research P30 Centers of Excellence and P20 Exploratory Centers. METHODS:Center members developed the NSPH Model and the manuscript based on presentations and discussions at the annual NINR Center Directors Meeting and in follow-up telephone meetings. DISCUSSION:The NSPH Model comprises four precision components (measurement; characterization of phenotype including lifestyle and environment; characterization of genotype and other biomarkers; and intervention target discovery, design, and delivery) that are underpinned by an information and data science infrastructure. CONCLUSION:Nurse scientist leadership is necessary to realize the vision of precision health as reflected in the NSPH Model. 10.1016/j.outlook.2019.01.003
Engagement in an Interactive App for Symptom Self-Management during Treatment in Patients With Breast or Prostate Cancer: Mixed Methods Study. Crafoord Marie-Therése,Fjell Maria,Sundberg Kay,Nilsson Marie,Langius-Eklöf Ann Journal of medical Internet research BACKGROUND:Using mobile technology for symptom management and self-care can improve patient-clinician communication and clinical outcomes in patients with cancer. The interactive app Interaktor has been shown to reduce symptom burden during cancer treatment. It includes symptom assessment, an alert system for contact with health care professionals, access to self-care advice, and visualization of symptom history. It is essential to understand how digital interventions operate; one approach is to examine engagement by assessing usage and exploring user experiences. Actual usage in relation to the intended use-adherence-is an essential factor of engagement. OBJECTIVE:This study aimed to describe engagement with the Interaktor app among patients with breast or prostate cancer during treatment. METHODS:Patients from the intervention groups of two separate randomized controlled trials were included: patients with breast cancer receiving neoadjuvant chemotherapy (n=74) and patients with locally advanced prostate cancer receiving treatment with radiotherapy (n=75). The patients reported their symptoms daily. Sociodemographic and clinical data were obtained from baseline questionnaires and medical records. Logged data usage was retrieved from the server and analyzed descriptively and with multiple regression analysis. Telephone interviews were conducted with patients about their perceptions of using the app and analyzed using content analysis. RESULTS:The median adherence percentage to daily symptom reporting was 83%. Most patients used the self-care advice and free text message component. Among the patients treated for breast cancer, higher age predicted a higher total number of free text messages sent (P=.04). Among the patients treated for prostate cancer, higher age (P=.01) and higher education level (P=.04), predicted an increase in total views on self-care advice, while higher comorbidity (P=.004) predicted a decrease in total views on self-care advice. Being married or living with a partner predicted a higher adherence to daily symptom reporting (P=.02). Daily symptom reporting created feelings of having continuous contact with health care professionals, being acknowledged, and safe. Being contacted by a nurse after a symptom alert was considered convenient and highly valued. Treatment and time-related aspects influenced engagement. Daily symptom reporting was perceived as particularly meaningful at the beginning of treatment. Requests were made for advice on diet and psychological symptoms, as well as for more comprehensive and detailed information as the patient progressed through treatment. CONCLUSIONS:Patient engagement in the interactive app Interaktor was high. The app promoted patient participation in their care through continuous and convenient contact with health care professionals. The predictive ability of demographic variables differed between patient groups, but higher age and a higher educational level predicted higher usage of specific app functions for both patient groups. Patients' experience of relevance and interactivity influenced their engagement positively. 10.2196/17058
Algorithm-based decision support for symptom self-management among adults with Cancer: results of usability testing. Cooley Mary E,Abrahm Janet L,Berry Donna L,Rabin Michael S,Braun Ilana M,Paladino Joanna,Nayak Manan M,Lobach David F BMC medical informatics and decision making BACKGROUND:It is essential that cancer patients understand anticipated symptoms, how to self-manage these symptoms, and when to call their clinicians. However, patients are often ill-prepared to manage symptoms at home. Clinical decision support (CDS) is a potentially innovative way to provide information to patients where and when they need it. The purpose of this project was to design and evaluate a simulated model of an algorithm-based CDS program for self-management of cancer symptoms. METHODS:This study consisted of three phases; development of computable algorithms for self-management of cancer symptoms using a modified ADAPTE process, evaluation of a simulated model of the CDS program, and identification of design objectives and lessons learned from the evaluation of patient-centered CDS. In phase 1, algorithms for pain, constipation and nausea/vomiting were developed by an expert panel. In phase 2, we conducted usability testing of a simulated symptom assessment and management intervention for self-care (SAMI-Self-Care) CDS program involving focus groups, interviews and surveys with cancer patients, their caregivers and clinicians. The Acceptability E-scale measured acceptability of the program. In phase 3, we developed design objectives and identified barriers to uptake of patient-centered CDS based on the data gathered from stakeholders. RESULTS:In phase 1, algorithms were reviewed and approved through a consensus meeting and majority vote. In phase 2, 24 patients & caregivers and 13 clinicians participated in the formative evaluation. Iterative changes were made in a simulated SAMI-Self-Care CDS program. Acceptability scores were high among patients, caregivers and clinicians. In phase 3, we formulated CDS design objectives, which included: 1) ensure patient safety, 2) communicate clinical concepts effectively, 3) promote communication with clinicians, 4) support patient activation, and 5) facilitate navigation and use. We identified patient barriers and clinician concerns to using CDS for symptom self-management, which were consistent with the chronic care model, a theoretical framework used to enhance patient-clinician communication and patient self-management. CONCLUSION:Patient safety and tool navigation were critical features of CDS for patient self-management. Insights gleaned from this study may be used to inform the development of CDS resources for symptom self-management in patients with other chronic conditions. 10.1186/s12911-018-0608-8
Symptom self-management strategies reported by adolescents and young adults with cancer receiving chemotherapy. Linder Lauri A,Erickson Jeanne M,Stegenga Kristin,Macpherson Catherine Fiona,Wawrzynski Sarah,Wilson Christina,Ameringer Suzanne Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer PURPOSE:Adolescents and young adults (AYAs) with cancer experience multiple symptoms related to their cancer and its treatment which can negatively impact their development and quality of life. An understanding of the strategies AYAs use to self-manage their symptoms is limited. This study described symptom self-management strategies reported by AYAs with cancer using an iPad-based symptom heuristics tool, the Computerized Symptom Capture Tool. METHODS:The study used a cross-sectional, descriptive design. AYAs' free text responses relating their symptom self-management strategies were explored using qualitative content analysis procedures. Strategies were examined overall and by individual symptoms. RESULTS:Seventy-two AYAs 13-29 years of age (mean 18.4 years) reported a total of 772 symptom self-management codes for 585 individual symptoms. These codes were organized into 119 distinct categories. These categories were further organized into 16 subthemes and 3 overarching themes: "Things I Take … or Not" (n = 209 codes), "Physical Care Things I Do" (n = 367 codes), and "Psychosocial Care Things I Do" (n = 132 codes). AYAs frequently reported strategies from all three of the symptom self-management themes to manage individual symptoms; however, "medications" was the most frequently reported strategy. CONCLUSION:AYAs receiving chemotherapy use multiple common, yet uniquely individual symptom self-management strategies. AYAs' reported strategies range from those that involve shared management with a healthcare provider to those that AYAs implement independently. The study provides a foundation for future research to empower AYAs to engage in symptom self-management and to guide healthcare providers as they discuss developmentally relevant and evidence-based symptom self-management strategies. 10.1007/s00520-017-3811-8
Development and Testing of a Measure of Caregiver Confidence in Medical Sign/Symptom Management. Piggott Cleveland A,Zimmerman Sheryl,Reed David,Sloane Philip D American journal of Alzheimer's disease and other dementias Evaluation of efforts to support family caregivers of people with dementia in their daily medical management responsibilities requires a measure of caregiver self-efficacy (confidence). This article describes the development and psychometric properties of the Caregiver Confidence in Sign/Symptom Management (CCSM) scale, the only available instrument in this area. Measurement development included literature and expert panel review, cognitive testing, and field testing. The CCSM is a 25-item measure (α = .92) composed of confidence in relation to 4 subscales: knowledge of signs/symptoms (α = .83), management of cognitive signs/symptoms (α = .85), management of medical signs/symptoms (α = .87), and general medication management/responsiveness (α = .85), all of which relate to caregiver role strain. The CCSM is a reliable and valid instrument to assess caregiver confidence in sign/symptom management and is useful to determine caregiver needs and outcomes of related interventions. Additionally, it furthers understanding of the role of self-efficacy in caregiver quality of life. 10.1177/1533317517711247
Fidelity scorecard: evaluation of a caregiver-delivered symptom management intervention. Frambes Dawn,Lehto Rebecca,Sikorskii Alla,Tesnjak Irena,Given Barbara,Wyatt Gwen Journal of advanced nursing AIM:To evaluate and quantify the intervention fidelity of a symptom management protocol through implementation of a scorecard, using an exemplar study of caregiver-delivered reflexology for people with breast cancer. BACKGROUND:Studies on caregiver-delivered symptom management interventions seldom include adequate information on protocol fidelity, contributing to potentially suboptimal provision of the therapeutic intervention, hindering reproducibility and generalizability of the results. DESIGN:Fidelity assessment of a 4-week intervention protocol in a randomized controlled trial (RCT) with data collection between 2012 - 2016. METHODS:The National Institutes of Health Behaviour Change Consortium (NIH-BCC) conceptual model for intervention fidelity guided the study. The five NIH-BCC fidelity elements are: (1) dose; (2) provider training; (3) intervention delivery; (4) intervention receipt; and (5) enactment. To illustrate the elements, an intervention protocol was deconstructed and each element quantified using a newly developed fidelity scorecard. RESULTS:Mean scores and frequency distributions were derived for the scorecard elements. For dose, the mean number of sessions was 4·4, 96% used the correct intervention duration and 29% had 4 weeks with at least one session. Provider training was achieved at 80% of the maximum score, intervention delivery was 96%, intervention receipt was 99% and enactment indicated moderate adoption at 3·8 sessions per patient. The sample mean score was 15·4 out of 16, indicating the high overall fidelity. CONCLUSION:Research findings that include description of how fidelity is both addressed and evaluated are necessary for clinical translation. Clinicians can confidently recommend symptom management strategies to patients and caregivers when fidelity standards are explicitly reported and measured. 10.1111/jan.13266
Prevalence and correlates of unmet palliative care needs in dyads of Chinese patients with advanced cancer and their informal caregivers: a cross-sectional survey. Wang Tao,Molassiotis Alex,Tan Jing-Yu,Chung Betty Pui Man,Huang Hou-Qiang Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer OBJECTIVES:To examine palliative care needs of advanced cancer patients and their informal caregivers and correlates of their needs within Chinese context. METHODS:This was a cross-sectional survey conducted in two study sites in Mainland China. Patients and caregivers were recruited in dyads. Patients completed the following questionnaires: Problems and Needs in Palliative Care-short version, Hospital Anxiety and Depression Scale (HADS), Edmonton Symptom Assessment Scale (ESAS), Medical Outcomes Study-Social Support Survey (MOS-SSS), Brief Coping Orientation to Problems Experienced Scale (Brief-COPE), and Quality-of-Life Questionnaire Core 15-Palliative Care Scale. Questionnaires for caregivers were as follows: Comprehensive Needs Assessment Tool in Cancer for Caregivers, HADS, ESAS, MOS-SSS, Brief-COPE, and Caregiver Quality of Life Index-Cancer. All of the outcome variables were selected based on a conceptual framework of palliative care needs assessment. RESULTS:Four hundred nineteen patient-caregiver dyads completed this survey. Patients' unmet palliative care needs were mainly related to financial (85.2%), informational (82.3%), physical (pain) (69.7%), and psychological (64.9%) domains. Caregivers' commonly reported unmet needs mainly focused on the domains of healthcare staff (95.0%), information (92.1%), and hospital facilities and services (90.5%). Patients' greater severity of symptom distress, presence of anxiety and/or depression, use of coping strategies particularly the less use of problem-focused coping, and caregivers' poorer quality of life were identified as key negative predictors of the needs of both patients and caregivers (p < 0.05). CONCLUSIONS:Both patients and caregivers had context-bounded palliative care needs. In addition to increasing the amount of external asistance, more emphasis should be placed on screening for physical and psychological distress, the use of coping strategies, and the well-being of caregivers to help identify those in need for more clinical attention and specific interventions. 10.1007/s00520-020-05657-w
A Prospective Mixed-Methods Study of Decision-Making on Surgery or Active Surveillance for Low-Risk Papillary Thyroid Cancer. Sawka Anna M,Ghai Sangeet,Yoannidis Tom,Rotstein Lorne,Gullane Patrick J,Gilbert Ralph W,Pasternak Jesse D,Brown Dale H,Eskander Antoine,Almeida John R de,Irish Jonathan C,Higgins Kevin,Enepekides Danny J,Monteiro Eric,Banerjee Avik,Shah Manish,Gooden Everton,Zahedi Afshan,Korman Mark,Ezzat Shereen,Jones Jennifer M,Rac Valeria E,Tomlinson George,Stanimirovic Aleksandra,Gafni Amiram,Baxter Nancy N,Goldstein David P Thyroid : official journal of the American Thyroid Association Active surveillance (AS) of small, low-risk papillary thyroid cancers (PTCs) is increasingly being considered. There is limited understanding of why individuals with low-risk PTC may choose AS over traditional surgical management. We present a mixed-methods analysis of a prospective observational real-life decision-making study regarding the choice of thyroidectomy or AS for management of localized, low-risk PTCs <2 cm in maximum diameter (NCT03271892). Patients were provided standardized medical information and were interviewed after making their decision (which dictated disease management). We evaluated patients' levels of decision-self efficacy (confidence in medical decision-making ability) at the time information was presented and their level of decision satisfaction after finalizing their decision (using standardized questionnaires). We asked patients to explain the reason for their choice and qualitatively analyzed the results. We enrolled 74 women and 26 men of mean age 52.4 years, with a mean PTC size of 11.0 mm (interquartile range 9.0, 14.0 mm). Seventy-one patients (71.0% [95% confidence interval 60.9-79.4%]) chose AS over surgery. Ninety-four percent (94/100) of participants independently made their own disease management choice; the rest shared the decision with their physician. Participants had a high baseline level of decision self-efficacy (mean 94.3, standard deviation 9.6 on a 100-point scale). Almost all (98%, 98/100) participants reported high decision satisfaction. Factors reported by patients as influencing their decision included the following: perceived risk of thyroidectomy or the cancer, family considerations, treatment timing in the context of life circumstances, and trust in health care providers. In this Canadian study, ∼7 out of 10 patients with small, low-risk PTC, who were offered the choice of AS or surgery, chose AS. Personal perceptions about cancer or thyroidectomy, contextual factors, family considerations, and trust in health care providers strongly influenced patients' disease management choices. 10.1089/thy.2019.0592
How do family-caregivers of patients with advanced cancer provide symptom self-management support? A qualitative study. Pethybridge Ruth,Teleni Laisa,Chan Raymond Javan European journal of oncology nursing : the official journal of European Oncology Nursing Society PURPOSE:The family-caregiver role is of critical importance to the success of symptom-related self-management of patients with advanced cancer. This study examined the perspectives of patients and family-caregivers regarding the role of the family-caregiver in symptom-related self-management support ( SMS). METHODS:Semi-structured interviews were conducted in patients with advanced cancer experiencing significant symptom burden and their family-caregivers. An inductive content analysis approach was used to analyse data. RESULTS:Eleven patients and ten family caregivers were included. Identified themes were 1) engaging in specific symptom-related SMS; 2) interacting with health care professionals; and 3) balancing patient need versus expectation. These themes were applicable to both the family-caregiver and patient cohorts, regardless of the individual symptom profile of each patient. CONCLUSIONS:The role of family-caregivers of patients with advanced cancer is complex and varied in providing symptom-related SMS at home; often requiring family-caregivers to have diverse knowledge and skills in the management of a range of cancer-related symptoms. Health care professionals can support family-caregivers by anticipating needs, tailoring evidence-based information to those needs, and ensuring family-caregivers have an appropriate contact point for advice or help. 10.1016/j.ejon.2020.101795
Symptom experience and self-management for multiple co-occurring symptoms in patients with gastric cancer: A qualitative study. Lin Yufen,Docherty Sharron L,Porter Laura S,Bailey Donald E European journal of oncology nursing : the official journal of European Oncology Nursing Society PURPOSE:Patients with gastric cancer experience an increased symptom burden with multiple co-occurring symptoms. Knowledge of patients' symptom experiences and self-management for these symptoms is limited. The purpose of this study was to describe multiple co-occurring symptoms, symptom experiences, and symptom self-management strategies in patients with gastric cancer. METHODS:A qualitative descriptive approach was used for this study. Semi-structured interviews were conducted with ten American participants (median age 52.5 years, 50% female, 70% African American). Content analysis was used to explore their symptoms, experiences, and self-management strategies. RESULTS:Four themes were identified: perceptions of multiple co-occurring symptoms, complex and dynamic nature of symptom experiences, living with multiple co-occurring symptoms, and symptom self-management strategies (i.e., medications for symptoms, information seeking from the clinician team, lifestyle modification, psychosocial and spiritual support). CONCLUSIONS:Our findings provide new insights into how patients with gastric cancer perceive and interpret their multiple co-occurring symptoms, contribute to our understanding of the role that inter-individual variability might play in symptom experiences, and highlight a range of self-management strategies for managing multiple co-occurring symptoms. Oncology nurses need to assess symptoms on an ongoing basis, educate patients about multiple co-occurring symptoms, and develop and test person-centered self-management interventions for these patients to enhance their symptom relief and quality of life. 10.1016/j.ejon.2020.101860
Cancer patients' experiences on self-management of chemotherapy treatment-related symptoms: A systematic review and thematic synthesis. Magalhães Bruno,Fernandes Carla,Lima Lígia,Martinez-Galiano Juan Miguel,Santos Célia European journal of oncology nursing : the official journal of European Oncology Nursing Society PURPOSE:This study aimed to synthesize evidence of cancer patients' experiences of self-management of chemotherapy treatment-related symptoms. METHOD:A systematic review of the literature was conducted to identify all qualitative or mixed studies published between January 2007 and December 2018, addressing the experiences of patients under 18 years submitted to chemotherapy treatments. A search in databases MEDLINE®, CINAHL®, and Psychology and Behavioural Sciences Collection was performed using specific key terms and Boolean operators. A thematic analysis was designed to synthesize the main findings of the included studies. RESULTS:From a total of 1.775 identified articles, 21 studies were included. Three main themes emerged and were grouped into different categories: Facilitators (e.g., "personality characteristics", "behavioural strategies", "emotional management") related to several aspects viewed globally as favourable to the self-management; Inhibitors (e.g. "symptoms-physical effects", "symptoms-emotional effect", "symptoms-change in self-care") related to several aspects that can globally make the experience of the self-management more difficult or painful; and Supports ("professionals care", "family or others" and "information/knowledge") including variables or factors which were identified by patients as supports to meet their needs perceived during the process of self-management of chemotherapy treatment-related symptoms. CONCLUSION:Patients' experiences of the disease and symptoms self-management are diversified and require tailored nursing care, personal motivation and constructive attitudes towards chemotherapy-related symptoms. To identify facilitators and inhibitors to the self-management process will provide substantial contributions to patient-centered nursing interventions, promoting a healthier transition process. 10.1016/j.ejon.2020.101837
Self-management in older people living with cancer and multi-morbidity: A systematic review and synthesis of qualitative studies. Corbett Teresa,Cummings Amanda,Calman Lynn,Farrington Naomi,Fenerty Vicky,Foster Claire,Richardson Alison,Wiseman Theresa,Bridges Jackie Psycho-oncology OBJECTIVE:Many older people with cancer live with multimorbidity. Little is understood about the cumulative impact of old age, cancer and multimorbidity on self-management. This qualitative systematic review and synthesis aimed to identify what influences self-management from the perspective of older adults living with cancer and multimorbidity. METHODS:Six databases were systematically searched for primary qualitative research reporting older adults' experiences of living with cancer and multimorbidity (eg, Medline, Embase, and CINAHL). A thematic synthesis was guided by Shippee's model of cumulative complexity. Text labelled as results in the included papers was treated as data. RESULTS:Twenty-eight studies were included. While the included studies varied in their focus, our analysis highlighted a number of important themes consistent across the studies. Health conditions with the greatest negative impact on independent living assumed the greatest importance, sometimes meaning their cancer was a low priority. Self-management practices seen as likely to interfere with quality of life were deprioritized unless viewed as necessary to maintain independence. When burden outweighed capacity, people were reluctant to ask for help from others in their social network. The contribution of formal healthcare services to supporting self-management was relatively peripheral. CONCLUSIONS:Old age and multimorbidity together may complicate self-management after cancer, threatening health and well-being, creating burden and diminishing capacity. Older adults prioritized self-management practices they considered most likely to enable them to continue to live independently. The protocol was registered with Prospero (CRD42018107272). 10.1002/pon.5453
The eHealth self-management application 'Oncokompas' that supports cancer survivors to improve health-related quality of life and reduce symptoms: which groups benefit most? van der Hout A,Holtmaat K,Jansen F,Lissenberg-Witte B I,van Uden-Kraan C F,Nieuwenhuijzen G A P,Hardillo J A,Baatenburg de Jong R J,Tiren-Verbeet N L,Sommeijer D W,de Heer K,Schaar C G,Sedee R J E,Bosscha K,van den Brekel M W M,Petersen J F,Westerman M,Honings J,Takes R P,Houtenbos I,van den Broek W T,de Bree R,Jansen P,Eerenstein S E J,Leemans C R,Zijlstra J M,Cuijpers P,van de Poll-Franse L V,Verdonck-de Leeuw I M Acta oncologica (Stockholm, Sweden) BACKGROUND:Oncokompas is a web-based self-management application that supports cancer survivors to monitor their health-related quality of life (HRQOL) and symptoms, and to obtain personalised feedback and tailored options for supportive care. In a large randomised controlled trial among survivors of head and neck cancer, colorectal cancer, and breast cancer and (non-)Hodgkin lymphoma, Oncokompas proved to improve HRQOL, and to reduce several tumour-specific symptoms. Effect sizes were however small, and no effect was observed on the primary outcome patient activation. Therefore, this study aims to explore which subgroups of cancer survivors may especially benefit from Oncokompas. MATERIALS AND METHODS:Cancer survivors ( = 625) were randomly assigned to the intervention group (access to Oncokompas,  = 320) or control group (6 months waiting list,  = 305). Outcome measures were HRQOL, tumour-specific symptoms, and patient activation. Potential moderators included socio-demographic (sex, age, marital status, education, employment), clinical (tumour type, stage, time since diagnosis, treatment modality, comorbidities), and personal factors (self-efficacy, personal control, health literacy, Internet use), and patient activation, mental adjustment to cancer, HRQOL, symptoms, and need for supportive care, measured at baseline. Linear mixed models were performed to investigate potential moderators. RESULTS:The intervention effect on HRQOL was the largest among cancer survivors with low to moderate self-efficacy, and among those with high personal control and those with high health literacy scores. Cancer survivors with higher baseline symptom scores benefitted more on head and neck (pain in the mouth, social eating, swallowing, coughing, trismus), and colorectal cancer (weight) specific symptoms. DISCUSSION:Oncokompas seems most effective in reducing symptoms in head and neck cancer and colorectal cancer survivors who report a higher burden of tumour-specific symptoms. Oncokompas seems most effective in improving HRQOL in cancer survivors with lower self-efficacy, and in cancer survivors with higher personal control, and higher health literacy. 10.1080/0284186X.2020.1851764
Exploring Cancer Pain Self-Management Needs and Preferences: A Meta-Ethnography. Anderson Alice,Starkweather Angela,Cong Xiaomei,Kyounghae Kim,Judge Michelle,Schulman-Green Dena Qualitative health research Self-management of chronic disease and related symptoms provides a framework for understanding the contextual factors that influence self-management knowledge and skills that patients and families require to manage their condition on a day-to-day basis. The management of cancer pain is a significant issue for patients and families, and their experience can provide insight on cancer pain self-management support needs and preferences. A meta-synthesis of 20 qualitative research articles on self-management of cancer pain was conducted to gain a deeper understanding of the self-management support needs of patients with cancer pain. Noblit and Hare's meta-ethnographic model was used. The meta-synthesis resulted in increased understanding of the needs and preferences for self-management support of cancer pain and the role of the health care practitioner. Practical implications are presented. 10.1177/1049732321998975
Living with cancer and multimorbidity: A qualitative study of self-management experiences of older adults with cancer. Haase Kristen R,Hall Steven,Sattar Schroder,Ahmed Shahid European journal of oncology nursing : the official journal of European Oncology Nursing Society PURPOSE:Older adults are most commonly diagnosed with cancer but needs related to managing multiple chronic conditions (multimorbidity) are often overlooked. Although self-management is a growing imperative in cancer care, the experiences of older adults managing multimorbidity alongside a cancer diagnosis have been less explored. In this study we interviewed older adults with cancer and multimorbidity to understand their experiences with cancer self-management while living with multimorbidity. METHODS AND SAMPLE:We used a descriptive qualitative approach and interviewed older adults (n = 14) about their experiences and had them complete the Multimorbidity Treatment Questionnaire; qualitative data were analyzed using thematic analysis. RESULTS:We identified three themes, including: Situating cancer and aging: personal, illness, and caregiving experiences; enacting and engaging in self-management; and challenges of living with cancer and navigating multimorbidity. Older adults demonstrated many strengths in engaging in self-management work but faced many challenges as they navigated the siloed healthcare system. CONCLUSION:Oncology nurses play a critical role in supporting self-management for older adults with cancer. We propose that more in-depth research is needed to explore older adults' experiences with cancer self-management to ensure that they are able to engage in the self-management that is required in our healthcare system. 10.1016/j.ejon.2021.101982
Virtual Reality Use for Symptom Management in Palliative Care: A Pilot Study to Assess User Perceptions. Johnson Tracy,Bauler Laura,Vos Duncan,Hifko Alan,Garg Paras,Ahmed Mohammad,Raphelson Michael Journal of palliative medicine In the past two decades, virtual reality (VR) technology has found use in a variety of clinical settings including pain management, physical medicine and rehabilitation, psychiatry, and neurology. However, little is known about the utility of VR in the palliative care setting. Moreover, previous investigations have not explored user perceptions of the VR experience in this population. Understanding user perceptions of the VR intervention will be critical for the development and delivery of effective VR therapies. To examine the utility of VR for palliative care patients, a pilot study of VR use was conducted with 12 adult patients diagnosed with life-limiting illness who were residents at a free-standing hospice facility. The intervention consisted of a one-time 30-minute VR experience. User perceptions were assessed through both quantitative and qualitative means, including participant responses to open-ended questions after the VR intervention. Acute changes in symptom burden were assessed using the revised Edmonton Symptom Assessment Scale. Participants found the VR experience to be both enjoyable and useful, and the intervention was well-tolerated overall. This study provides support for VR as a promising new therapeutic modality for patients undergoing palliative care. 10.1089/jpm.2019.0411
A brief, patient- and proxy-reported outcome measure in advanced illness: Validity, reliability and responsiveness of the Integrated Palliative care Outcome Scale (IPOS). Murtagh Fliss Em,Ramsenthaler Christina,Firth Alice,Groeneveld Esther I,Lovell Natasha,Simon Steffen T,Denzel Johannes,Guo Ping,Bernhardt Florian,Schildmann Eva,van Oorschot Birgitt,Hodiamont Farina,Streitwieser Sabine,Higginson Irene J,Bausewein Claudia Palliative medicine BACKGROUND:Few measures capture the complex symptoms and concerns of those receiving palliative care. AIM:To validate the Integrated Palliative care Outcome Scale, a measure underpinned by extensive psychometric development, by evaluating its validity, reliability and responsiveness to change. DESIGN:Concurrent, cross-cultural validation study of the Integrated Palliative care Outcome Scale - both (1) patient self-report and (2) staff proxy-report versions. We tested construct validity (factor analysis, known-group comparisons, and correlational analysis), reliability (internal consistency, agreement, and test-retest reliability), and responsiveness (through longitudinal evaluation of change). SETTING/PARTICIPANTS:In all, 376 adults receiving palliative care, and 161 clinicians, from a range of settings in the United Kingdom and Germany. RESULTS:We confirm a three-factor structure (Physical Symptoms, Emotional Symptoms and Communication/Practical Issues). Integrated Palliative care Outcome Scale shows strong ability to distinguish between clinically relevant groups; total Integrated Palliative care Outcome Scale and Integrated Palliative care Outcome Scale subscale scores were higher - reflecting more problems - in those patients with 'unstable' or 'deteriorating' versus 'stable' Phase of Illness (F = 15.1, p < 0.001). Good convergent and discriminant validity to hypothesised items and subscales of the Edmonton Symptom Assessment System and Functional Assessment of Cancer Therapy-General is demonstrated. The Integrated Palliative care Outcome Scale shows good internal consistency (α = 0.77) and acceptable to good test-retest reliability (60% of items k > 0.60). Longitudinal validity in form of responsiveness to change is good. CONCLUSION:The Integrated Palliative care Outcome Scale is a valid and reliable outcome measure, both in patient self-report and staff proxy-report versions. It can assess and monitor symptoms and concerns in advanced illness, determine the impact of healthcare interventions, and demonstrate quality of care. This represents a major step forward internationally for palliative care outcome measurement. 10.1177/0269216319854264
Self-efficacy for symptom management in the acute phase of hematopoietic stem cell transplant: A pilot study. White Lynn L,Kupzyk Kevin A,Berger Ann M,Cohen Marlene Z,Bierman Philip J European journal of oncology nursing : the official journal of European Oncology Nursing Society PURPOSE:Hematopoietic stem cell transplant (HSCT) is an intensive treatment associated with distressing treatment and disease-related symptoms that affect patient outcomes such as functional status and quality of life. Self-efficacy for symptom management (SESM) is a person's belief in their ability to perform behaviors to prevent and relieve symptoms. Presence of SESM can impact symptom distress and functional status. This study describes the changes over time and relationships among SESM, symptom distress, and physical functional status in adults during the acute phase of HSCT. METHODS:Patients (n = 40) completed measures of symptom distress, SESM, and physical function at time points prior to and at days 7, 15 and 30 post-transplant. Clinical outcomes were length of stay and number of readmissions. RESULTS:Symptom distress, physical function, and SESM changed significantly over time. There was a significant negative relationship between symptom distress and physical function and between symptom distress and SESM at all points. The lowest levels of SESM and physical function were at day 7 when symptom distress was highest. Symptom distress was a moderator for the relationship between physical function and SESM at day 15. CONCLUSION:This was the first study to examine SESM in the acute phase of HSCT. Higher SESM was associated with fewer symptoms and increased physical function. Less symptom distress was associated with higher physical function and confidence to manage symptoms. These findings provide the basis for development of patient-centered interventions to enhance SESM when symptoms are at their highest immediately after HSCT. 10.1016/j.ejon.2019.07.006
Perceptions of Need for Palliative Care in Recently Hospitalized Patients With Systolic Heart Failure. Journal of pain and symptom management CONTEXT:The symptom burden associated with heart failure (HF) remains high despite improvements in therapy and calls for the integration of palliative care into traditional HF care. Little is also known about how patients with HF perceive palliative care and patient-level characteristics associated with the need for palliative care, which could influence the utilization of palliative care in HF management. OBJECTIVES:To identify characteristics of HF patients associated with perceived need for palliative care. METHODS:We analyzed data from the Hopeful Heart Trial, which studied the efficacy of a collaborative care intervention for treating both systolic HF and depression. Palliative care preferences were collected during routine study follow-up. We assessed the association of perceived need for palliative care during study follow-up and baseline data on sociodemographics, clinical measures, and patient-centered outcomes. We then used descriptive statistics and logistic regression to analyze our data. RESULTS:Participants were on average 64 years old, male, and reported severe HF symptoms and poor to below average quality of life (. Most had unfavorable impressions of palliative care, but many still perceived a need for palliative care. Factors associated with perceived need for palliative care included depression, non-white race, more severe HF symptoms, and lower mental & physical health-related quality of life. CONCLUSION:HF patients' beliefs about palliative care may affect utilization of palliative care. Specific characteristics can help identify patients with HF who may benefit from palliative care involvement. Education targeted towards patients with selected attributes may help incorporate palliative care into HF management. 10.1016/j.jpainsymman.2021.06.001
Symptom management strategies used by older community-dwelling people with multimorbidity and a high symptom burden - a qualitative study. Eckerblad Jeanette,Waldréus Nana,Stark Åsa Johansson,Jacobsson Lisa Ring BMC geriatrics BACKGROUND:Older community-dwelling people with multimorbidity are often not only vulnerable, but also suffer from several conditions that could produce a multiplicity of symptoms. This results in a high symptom burden and a reduced health-related quality of life. Even though these individuals often have frequent contact with healthcare providers they are expected to manage both appropriate disease control and symptoms by themselves or with the support of caregivers. The aim of this study was therefore to describe the symptom management strategies used by older community-dwelling people with multimorbidity and a high symptom burden. METHOD:A qualitative descriptive design using face-to-face interviews with 20 community-dwelling older people with multimorbidity, a high healthcare consumption and a high symptom burden. People ≥75 years, who had been hospitalized ≥3 times during the previous year, ≥ 3 diagnoses in their medical records and lived at home were included. The participants were between 79 and 89 years old. Data were analysed using content analyses. RESULT:Two main strategy categories were found: active symptom management and passive symptom management. The active strategies include the subcategories; to plan, to distract, to get assistance and to use facilitating techniques. An active strategy meant that participants took matters in their own hands, they could often describe the source of the symptoms and they felt that they had the power to do something to ease their symptoms. A passive symptom management strategy includes the subcategories to give in and to endure. These subcategories often reflected an inability to describe the source of the symptoms as well as the experience of having no alternative other than passively waiting it out. CONCLUSIONS:These findings show that older people with multimorbidity and a high symptom burden employ various symptom management strategies on daily basis. They had adopted appropriate strategies based on their own experience and knowledge. Healthcare professionals might facilitate daily life for older people with multimorbidity by providing guidance on active management strategies with focus on patient's own experience and preferences. 10.1186/s12877-020-01602-y
Comparing the physical, psychological, social, and spiritual needs of patients with non-cancer and cancer diagnoses in a tertiary palliative care setting. Bandeali Suhair,des Ordons Amanda Roze,Sinnarajah Aynharan Palliative & supportive care OBJECTIVE:The purpose was to describe the physical, psychological, social, and spiritual needs of patients with non-cancer serious illness diagnoses compared to those of patients with cancer. METHOD:We conducted a retrospective chart review of all patients with a non-cancer diagnosis admitted to a tertiary palliative care unit between January 2008 and December 2017 and compared their needs to those of a matched cohort of patients with cancer diagnoses. The prevalence of needs within the following four main concerns was recorded and the data analyzed using descriptive statistics and content analysis: •Physical: pain, dyspnea, fatigue, anorexia, edema, and delirium•Psychological: depression, anxiety, prognosis, and dignity•Social: caregiver burden, isolation, and financial•Spiritual: spiritual distress. RESULTS:The prevalence of the four main concerns was similar among patients with non-cancer and cancer diagnoses. Pain, nausea/vomiting, fatigue, and anorexia were more prevalent among patients with cancer. Dyspnea was more commonly the primary concern in patients with non-cancer diagnoses (39%), who also had a higher prevalence of anxiety and concerns about dignity. Spirituality was addressed more often in patients with cancer. SIGNIFICANCE OF RESULTS:The majority of patients admitted to tertiary palliative care settings have historically been those with cancer. The tertiary palliative care needs of patients with non-cancer diagnoses have not been well described, despite the increasing prevalence of this population. Our description of the palliative care needs of patients with non-cancer diagnoses will help guide future palliative care for the increasing population of patients with non-cancer serious illness diagnoses. 10.1017/S1478951519001020
The dyadic communication intervention is feasible and acceptable among advanced cancer patients and their family caregivers. Ketcher Dana,Thompson Casidee,Otto Amy K,Reblin Maija,Cloyes Kristin G,Clayton Margaret F,Baucom Brian R W,Ellington Lee Palliative medicine BACKGROUND:Advanced cancer affects the emotional and physical well-being of both patients and family caregivers in profound ways and is experienced both dyadically and individually. Dyadic interventions address the concerns of both members of the dyad. A critical gap exists in advanced cancer research, which is a failure of goals research and dyadic research to fully account for the reciprocal and synergistic effects of patients' and caregivers' individual perspectives, and those they share. AIM:We describe the feasibility and acceptability of the dyadic intervention, which is aimed at facilitating communication and goals-sharing among caregiver and patient dyads while integrating family context and individual/shared perspectives. DESIGN:Pilot study of a participant-generated goals communication intervention, guided by multiple goals theory, with 13 patient-caregiver dyads over two sessions. SETTING/PARTICIPANTS:Patients with advanced cancer and their self-identified family caregivers were recruited from an academic cancer center. Dyads did not have to live together, but both had to consent to participate and all participants had to speak and read English and be at least 18 years or age. RESULTS:Of those approached, 54.8% dyads agreed to participate and completed both sessions. Participants generated and openly discussed their personal and shared goals and experienced positive emotions during the sessions. CONCLUSIONS:This intervention showed feasibility and acceptability using participant-generated goals as personalized points of communication for advanced cancer dyads. This model shows promise as a communication intervention for dyads in discussing and working towards individual and shared goals when facing life-limiting or end-of-life cancer. 10.1177/0269216320972043
Assessing and Addressing Family Caregivers' Needs and Risks in Primary Care. Riffin Catherine,Wolff Jennifer L,Pillemer Karl A Journal of the American Geriatrics Society OBJECTIVES:To characterize current practices, barriers, and facilitators to assessing and addressing family caregivers' needs and risks in primary care. DESIGN:Cross-sectional, national mail-based survey. SETTING:American Medical Association Masterfile database. PARTICIPANTS:U.S. primary care physicians (N = 106), including general internists (n = 44) and geriatricians (n = 62). MEASUREMENTS:Approaches to assessing and addressing family caregivers' needs and risks; barriers and facilitators to conducting caregiver assessments. RESULTS:Few respondents reported conducting a formal caregiver assessment using a standardized instrument in the past year (10.5%). Informal, unstructured discussions about caregivers' needs and risks were common and encompassed a range of issues, most frequently caregivers' management of patients' safety (41.0%), ability to provide assistance (40.0%), and need for support (40.0%). To address caregiver needs, most respondents endorsed referring patients to services (e.g., adult day care, home care) (69.8%), assessing the appropriateness of the patient's living situation (67.9%), and referring caregivers to community agencies (63.2%). Lack of time was the most frequently cited barrier to assessing caregivers' needs (81.1%). The most commonly endorsed facilitators were access to better referral options (67.0%) and easier referral mechanisms (65.1%). Practice patterns, barriers, and facilitators to caregiver assessment did not differ by physician type. CONCLUSIONS:Primary care physicians use informal, unstructured discussions rather than standardized instruments to assess caregivers' needs and risks. There is heterogeneity in the topics discussed and types of referrals made. Findings indicate the lack of translation of caregiver assessment tools from research to practice. 10.1111/jgs.16945
Fatigue and Vigilance-Related Factors in Family Caregivers of Patients With Advanced Cancer: A Cross-sectional Study. Yiin Jia-Jean,Chen Ya-Yun,Lee Kwo-Chen Cancer nursing BACKGROUND:Family caregivers (FCs) commonly experience fatigue during caregiving. The factors of fatigue in the FCs of patients with advanced cancer have not yet been investigated in Taiwan. OBJECTIVE:This study investigated potential predictors of fatigue in the FCs of patients with advanced cancer. METHODS:A descriptive, cross-sectional study was conducted on 184 FCs. Data were collected using the Checklist Individual Strength and the palm-based psychomotor vigilance test. A linear regression model was the main statistical method for identifying the factors predictive of fatigue in FCs. RESULTS:Subjective and objective measurements revealed that 95% of the FCs had fatigue and poor vigilance. Those who spent more time each day on caregiving tasks, had no religious beliefs, had a full- or part-time job, and had a greater caregiver burden experienced greater fatigue. CONCLUSIONS:Fatigue and poor vigilance were common in the Taiwanese FCs of patients with advanced cancer. Family caregivers with risk factors for fatigue must be identified and given access to resources for assistance. IMPLICATION FOR PRACTICE:Healthcare providers must proactively assess FCs for fatigue and vigilance status and provide interventions appropriate for individual needs. 10.1097/NCC.0000000000000944
Impact of family caregivers' awareness of the prognosis on their quality of life/depression and those of patients with advanced cancer: a prospective cohort study. Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer PURPOSE:A caregiver's prognostic awareness can affect clinical decisions for the patient. The purpose of this study was to examine the impact of family caregivers' prognostic awareness on the quality of life (QOL) and emotional state of both patients with advanced cancer and their caregivers. METHODS:This prospective cohort study was conducted from December of 2016 to January of 2018. A total of 159 patients with advanced cancer and an equal number of caregivers participated. The investigation tools used include the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire-C15-Palliative, the McGill Quality of Life Questionnaire, and the Patient Health Questionnaire-9, and evaluation was performed at baseline, 3 months, and 6 months. Covariance analysis with a general linear modeling was used to compare changes in quality of life scores according to the caregivers' awareness of the prognosis. RESULTS:Mean patient overall QOL score increased in the group of caregivers who were aware of prognosis and decreased in the caregivers who were not aware of the prognosis (p = 0.018). The changes over time in the patients' QOL scores associated with symptoms improved with caregiver awareness (pain, p = 0.017; dyspnea, p = 0.048; appetite loss, p = 0.045). The percentage of depressed patients was smaller after 3 months in the group with caregivers aware of the prognosis (baseline to 3 months p = 0.028). Caregivers who did not understand their patients' prognosis exhibited better existential well-being (p = 0.036), and the incidence of depression was lower in this group at 3 months (p = 0.024). CONCLUSION:Caregivers' prognostic awareness may improve the quality of life and mood in patients with advanced cancer; however, this awareness may harm the quality of life and mood of the caregivers. These results may aid in developing in-depth interventions regarding prognosis for both patients and their caregivers. 10.1007/s00520-020-05489-8
The role of socioeconomic status in the relationship between social support and burden among cancer caregivers. European journal of cancer prevention : the official journal of the European Cancer Prevention Organisation (ECP) While much research has focused on the direct impact of socioeconomic status on cancer patients, what is not clear is the impact of socioeconomic status on social support and the burden of care for caregivers. In this study, a cross-sectional method, using a convenience sampling approach, was adopted to collect the data of 191 caregivers of cancer patients who were referred to the oncology clinic and cancer institute of hospitals affiliated with Tehran University of Medical Sciences, Iran. The participants completed a questionnaire on basic demographics, the short version of the Burden Scale for Family Caregivers, and Zimet Multidimensional Perceived Social Support. A maximum likelihood exploratory factor analysis with oblique rotation to assess the factor structure of the constructs and the measurement model was conducted. The two-factor model consisting of 22 items explained 65.116% of the variance. There was a significant negative relationship between social support and burden (b = -0.771, P < 0.001) and also between economic status and burden (b = -0.308, P < 0.01). Moreover, there was a significant positive association between the interaction of social support and economic status and burden (b = 0.138, P < 0.05). More specifically, the negative relationship between social support and burden was statistically stronger for participants with weak economic status (b = -0.663, P < 0.001) than those with good economic status (b = -0.356, P < 0.01). Social support and an individual's economic status are essential determinants of caregiver burden. Further studies are recommended to better inform the precise support needed by caregivers to enhance their quality of life, and ultimately, that of the patients under their care. 10.1097/CEJ.0000000000000683
Passages of cancer caregivers' unmet needs across 8 years. Kim Youngmee,Carver Charles S,Ting Amanda,Cannady Rachel S Cancer BACKGROUND:Identifying and addressing caregivers' unmet needs have been suggested as a way of reducing their distress and improving their quality of life. However, the needs of family cancer caregivers are complex in the period of long-term survivorship in particular because they may diverge as the patients' survivorship trajectory does, and that is what this study investigated. METHODS:Family cancer caregivers completed prospective, longitudinal surveys 2, 5, and 8 years after diagnosis (n = 633). Early caregiving characteristics and demographics were measured at 2 years. Caregiver status (former caregivers-remission, current caregivers, and bereaved caregivers) and unmet needs were measured at 3 assessments. RESULTS:Caregivers' unmet needs at 8 years were attributable to the passages of the caregiving status as their patients' illness trajectory diverged from the initial state of receiving care. Specifically, either prolonged caregiving or having a break from caregiving followed by bereavement during long-term survivorship was related to various domains of unmet needs at 8 years (t > 2.35, P < .02). Early perceived caregiving stress also predicted all domains of unmet needs at 8 years (t > 2.50, P < .02). Unmet needs at 8 years were the highest across the 3 assessment time points (F > 37.51, P < .001). CONCLUSIONS:The caregiving status trajectory over 8 years was a substantial predictor of family caregivers' unmet needs at the 8-year mark. Findings provide guidance for the development of evidence-based programs and patient/caregiver-centered care policies to reduce the unmet needs of family caregivers, which reflect the diverse trajectories of cancer caregivership, many years after the diagnosis of their patients. 10.1002/cncr.33053
Patient-reported functional executive challenges and caregiver confirmation in adult brain tumor survivors. Cantisano Nicole,Menei Philippe,Roualdes Vincent,Seizeur Romuald,Allain Philippe,Le Gall Didier,Roy Arnaud,Dinomais Mickaël,Besnard Jérémy Journal of cancer survivorship : research and practice PURPOSE:The main objective of this study was to provide further information concerning the validity of patient-reported executive function (EF) in survivors of primary brain tumor (PBT) compared with a report provided by each patient's caregiver. METHODS:Forty survivors of PBT, 40 non-cancer controls and their proxies completed an assessment of functional executive disorders (e.g., planning, inhibition, shifting, action initiation). Comparisons of self and informant EF reports were examined, for both patients and non-cancer controls. The extent of the concordance between patients' reports and their caregivers' reports was also determined. RESULTS:PBT survivors and their caregivers reported more problems related to EF in contrast with the non-cancer comparison group (significant differences). There was a high level of agreement between patients' and caregivers' ratings within the patient group. CONCLUSIONS:This study provides evidence suggesting that at an average of 3.67 (SD = 2.31) years following treatment for a PBT, EF difficulties are reported by patients and their caregivers. This study establishes a consistency between what is reported by survivors and what is reported by those who frequently interact with them. Further research investigating the link between these ratings and quality of life as well as other functions is encouraged. IMPLICATIONS FOR CANCER SURVIVORS:This study's results demonstrate the importance of listening to PBT survivors' perception of EF difficulties. While not confirmed by neuropsychological evaluations, the functional executive challenges reported by these survivors' close relatives reflect what PBT survivors themselves report. Specialists should pay close attention to these difficulties to guarantee optimal post-cancer care. 10.1007/s11764-020-00961-0
Caregiving burden and sleep quality amongst family caregivers of Chinese male patients with advanced cancer: A cross-sectional study. Lee Wong Cho,Choi Kai Chow,Mei Nok Lau ,Lam Ka Ling,Wei So Winnie Kwok European journal of oncology nursing : the official journal of European Oncology Nursing Society PURPOSE:To examine the level of caregiving burden and sleep quality as well as their interrelationship amongst family caregivers of Chinese male patients with advanced cancer. METHOD:A cross-sectional study was conducted in Hong Kong. The Caregiver Reaction Assessment (CRA) and the Pittsburgh Sleep Quality Index (PSQI) were used to measure caregiving burden and sleep quality of the family caregivers. RESULTS:A total of 96 family caregivers were recruited. Disrupted schedule (3.8; SD = 0.8) was rated as the most affected consequence of caregiving burden. Around 78.1% of the caregivers suffered from sleep problems. Hierarchical multiple regression revealed that health problems due to caregiving burden was independently associated with poor sleep quality after controlling for socio-demographic characteristics of both patients and caregivers (regression coefficient, B = 2.09, P = 0.012). CONCLUSIONS:Caregiving burden amongst family caregivers of male patients with advanced cancer was remarkably high and associated with poor sleep quality. Strategies aiming to alleviate caregiving burden of caregivers may help break this vicious cycle to enhance the sleep quality of caregivers. Results also underscore the need to assess and develop intervention to relieve caregiving burden for family caregivers of cancer patients. 10.1016/j.ejon.2020.101774
Patient and Caregiver Considerations and Priorities When Selecting Hospitals for Complex Cancer Care. Annals of surgical oncology BACKGROUND:Healthcare policies have focused on centralizing care to high-volume centers in an effort to optimize patient outcomes; however, little is known about patients' and caregivers' considerations and selection process when selecting hospitals for care. We aim to explore how patients and caregivers select hospitals for complex cancer care and to develop a taxonomy for their selection considerations. METHODS:This was a qualitative study in which data were gathered from in-depth interviews conducted from March to November 2019 among patients with hepatopancreatobiliary cancers who were scheduled to undergo a pancreatectomy (n = 20) at a metropolitan, urban regional, or suburban medical center and their caregivers (n = 10). RESULTS:The interviews revealed six broad domains that characterized hospital selection considerations: hospital factors, team characteristics, travel distance to hospital, referral or recommendation, continuity of care, and insurance considerations. The identified domains were similar between participants seen at the metropolitan center and urban/suburban medical centers, with the following exceptions: participants receiving care specifically at the metropolitan center noted operative volume and access to specific services such as clinical trials in their hospital selection; participants receiving care at urban/suburban centers noted health insurance considerations and having access to existing medical records in their hospital selection. CONCLUSIONS:This study delineates the many considerations of patients and caregivers when selecting hospitals for complex cancer care. These identified domains should be incorporated into the development and implementation of centralization policies to help increase patient access to high-quality cancer care that is consistent with their priorities and needs. 10.1245/s10434-020-09506-2
Feasibility of ecological momentary assessment to study depressive symptoms among cancer caregivers. Psycho-oncology OBJECTIVE:Ecological momentary assessment (EMA) may help with the development of more targeted interventions for caregivers' depression, yet the use of this method has been limited among cancer caregivers. This study aimed to demonstrate the feasibility of EMA among cancer caregivers and the use of EMA data to understand affective correlates of caregiver depressive symptoms. METHODS:Caregivers (N = 25) completed a depressive symptom assessment (Patient Health Questionnaire-8) and then received eight EMA survey prompts per day for 7 days. EMA surveys assessed affect on the orthogonal dimensions of valence and arousal. Participants completed feedback surveys regarding the EMA protocol at the conclusion of the week-long study. RESULTS:Of 32 caregivers approached, 25 enrolled and participated (78%), which exceeded the a priori feasibility cutoff of 55%. The prompt completion rate (59%, or 762 of 1,286 issued) did not exceed the a priori cutoff of 65%, although completion was not related to caregivers' age, employment status, physical health quality of life, caregiving stress, or depressive symptoms or the patients' care needs (ps > 0.22). Caregivers' feedback about their study experience was generally positive. Mixed-effects location scale modeling showed caregivers' higher depressive symptoms were related to overall higher reported negative affect and lower positive affect, but not to affective variability. CONCLUSIONS:Findings from this feasibility study refute potential concerns that an EMA design is too burdensome for distressed caregivers. Clinically, findings suggest the potential importance of not only strategies to reduce overall levels of negative affect, but also to increase opportunities for positive affect. 10.1002/pon.5627
The role of family confidants and caregivers in the care of older cancer patients: Extending the concept of "shared decision-making". Gieseler Frank,Heidenreich Andreas,Schubert Jacqueline,Frielitz Fabian,Rehmann-Sutter Christoph,Wörler Frank,Schües Christina,Hübner Joachim,Elsner Susanne,Block Katarina,Rody Achim,von Bubnoff Nikolas,Keck Tobias,Steimann Monika,Endsin Gero,Katalinic Alexander Health science reports Background and aims:Family caregivers play an important role in assisting their family members with cancer, but their influence on the treatment decision-making process has not yet been adequately investigated. This exploratory study approached this topic via reconstructive methodology, focusing on assessing patient-caregiver relationships. Methods:We conducted semi-structured interviews with 37 mostly elderly cancer patients (median age: 74 years) about the context of their diagnosis, treatment decision, and family support. Additionally, we interviewed 34 caregivers of cancer patients. Of these, 25 were related to patients interviewed. We analyzed the interviews via a multi-step coding method informed by Grounded Theory methodology toward characterizing patient-caregiver relationships, the treatment decision-making process, and the caregivers' role therein. Results:In the majority of cases (86%), patients were being supported by caregivers. We categorized patient-caregiver relationships in regards to the caregivers' involvement in the therapy decision-making process. We found patient-caregiver interaction patterns that indicate the potential of caregivers to decidedly influence the therapy decision-making process. Yet, only in 38% of cases, a caregiver attended relevant patient-physician-consultations. Conclusion:Depending on the nature of the patient-caregiver relationship, the traditional concept of shared decision-making, which assumes a dyadic relationship, needs to be extended toward a more dynamic concept in which caregivers should be involved more frequently. This could enable physicians to better understand a patient's reasons for or against a therapy proposal and ensure that the patient's wishes are communicated and considered. On the other hand, strong caregiver-involvement bears risks of over-stepping elderly patients' wishes, thus violating patient autonomy. 10.1002/hsr2.281
Cancer-related cognitive impairment in patients with non-central nervous system malignancies: an overview for oncology providers from the MASCC Neurological Complications Study Group. Mayo Samantha J,Lustberg Maryam,M Dhillon Haryana,Nakamura Zev M,Allen Deborah H,Von Ah Diane,C Janelsins Michelle,Chan Alexandre,Olson Karin,Tan Chia Jie,Toh Yi Long,Oh Jeong,Grech Lisa,Cheung Yin Ting,Subbiah Ishwaria Mohan,Petranovic Duska,D'Olimpio James,Gobbo Margherita,Koeppen Susanne,Loprinzi Charles L,Pang Linda,Shinde Shivani,Ntukidem Olanipekun,Peters Katherine B Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer Cancer-related cognitive impairment (CRCI) is commonly experienced by individuals with non-central nervous system cancers throughout the disease and treatment trajectory. CRCI can have a substantial impact on the functional ability and quality of life of patients and their families. To mitigate the impact, oncology providers must know how to identify, assess, and educate patients and caregivers. The objective of this review is to provide oncology clinicians with an overview of CRCI in the context of adults with non-central nervous system cancers, with a particular focus on current approaches in its identification, assessment, and management. 10.1007/s00520-020-05860-9
Understanding of Health-related Decision-making Terminology Among Cancer Caregivers. Western journal of nursing research Research on understanding health-related decision-making terminology among family caregivers of adults living with advanced cancer is lacking. The purpose of this study was to examine interpretations of the meaning of health-related decision-making terminology such as quality-of-life and end-of-life among caregivers of adults living with advanced cancer as a basis for improved understanding of caregiver decision support needs. Interviews were conducted with a purposive sub-sample of 10 caregivers of adults diagnosed with advanced cancer who completed a longitudinal, descriptive study (NRO14856) of factors influencing cancer care decisions. Audio transcripts were analyzed using qualitative descriptive methods. Caregivers described interpretations of the meaning and process of decision-making and decision-related distress. Caregivers were uncertain about the meaning of end-of-life-related terminology, and a placed high value on quality-of-life and faith/spirituality in the decision-making process. Improvements in information and decision support interventions are needed to better support caregivers and subsequently patients towards informed cancer care decisions. 10.1177/0193945920965238
Experiences with health care practitioners among advanced cancer patients and their family caregivers: A longitudinal dyadic study. Malhotra Chetna,Chaudhry Isha,Ozdemir Semra,Teo Irene,Kanesvaran Ravindran, Cancer BACKGROUND:Assessing patient and caregiver experiences with care is central to improving care quality. The authors assessed variations in the experiences of advanced cancer patients and their caregivers with physician communication and care coordination by patient and caregiver factors. METHODS:The authors surveyed 600 patients with a stage IV solid malignancy and 346 caregivers every 3 months for more than 2 years. Patients entered the cohort any time during their stage IV trajectory. The analytic sample was restricted to patient-caregiver dyads (n = 299). Each survey assessed patients' experiences with physician communication and care coordination; patients' symptom burden; caregivers' quality of life; and patients' and caregivers' anxiety, financial difficulties, and perceptions of treatment goals. An actor-partner interdependence framework was used for analysis. RESULTS:Patients reported better physician communication (average marginal effect [AME], 6.04; 95% confidence interval [CI], 3.82 to 8.26) and care coordination (AME, 8.96; 95% CI, 6.94 to 10.97) than their caregivers. Patients reported worse care coordination when they (AME, -0.56; 95% CI, -1.07 to -0.05) or their caregivers (AME, -0.58; 95% CI, -0.97 to -0.19) were more anxious. Caregivers reported worse care coordination when they were anxious (AME, -1.62; 95% CI, -2.02 to -1.23) and experienced financial difficulties (AME, -2.31; 95% CI, -3.77 to -0.86). Correct understanding of the treatment goal (vs being uncertain) was associated with caregivers reporting physician communication as better (AME, 3.67; 95% CI, 0.49 to 6.86) but with patients reporting it as worse (AME, -3.29; 95% CI, -6.45 to -0.14). CONCLUSIONS:Patients' and caregivers' reports of physician communication and care coordination vary with aspects of their own and each other's well-being and with their perceptions of treatment goals. These findings may have implications for improving patients' and caregivers' reported experiences with health care practitioners. 10.1002/cncr.33592
Coping as a Mediator of the Relationship between Stress and Anxiety in Caregivers of Patients with Acute Stroke. Lee Yoonmi,Song Yeoungsuk Clinical nursing research According to Lazarus and Folkman's theory, stress and coping affect an individual's anxiety, which is an adaptive outcome. This study examined the mediation effects of stress-coping strategies on the relationship between stress and anxiety in caregivers of patients with acute stroke. A cross-sectional descriptive design was used to analyze a total of 131 caregivers caring for patients with acute stroke at a university hospital. The Caregivers Stress Scale, Ways of Coping Questionnaire, and Korean Beck Anxiety Inventory were used to quantify the participants' responses. Our results revealed that emotion-focused coping (β = .56,   .001) partially mediated the relationship between stress and anxiety ( = 3.30,  < .001), suggesting its ability to exacerbate anxiety in the short term by acting as a mediator between stress and anxiety. Developing appropriate coping strategies for caregivers of patients with acute stroke is therefore critical for reducing their anxiety. 10.1177/10547738211021223
Dyadic effects of family-functioning and resilience on quality of life in advanced lung cancer patients and caregivers: An actor-partner interdependence mediation model. Wang Hui,Yue Haorun,Ren Minmin,Feng Danjun European journal of oncology nursing : the official journal of European Oncology Nursing Society PURPOSE:Lung cancer as a stressful event profoundly impacts the entire family, especially patients and their family caregivers. This study uses a dyadic analysis approach to explore the dyadic effects of family functioning on the quality of life (QoL), and whether resilience acts as a mediator in advanced lung cancer patient-caregiver dyads. METHODS:This was a cross-sectional study, and 287 dyads of advanced lung cancer patients and their caregivers were enrolled. Family-functioning, resilience, and QoL were assessed by the General Functioning subscale of the Family Assessment Device (FAD), the 10-item Connor-Davidson Resilience Scale, and the Short Form-8 (SF-8) Health Survey, respectively. Data were analyzed using the actor-partner interdependence mediation model. RESULTS:This study found that, for patients and caregivers, resilience mediates the actor effects of family-functioning on QoL. That is, family-functioning was positively related to their resilience, which improved QoL. Another important finding is that caregivers' family-functioning had significant indirect effects on patients' QoL through their resilience. CONCLUSIONS:Positive family functioning perceived by patients and caregivers can improve their QoL by developing their own resilience. Furthermore, family-functioning perceived by caregivers can also improve patients' QoL through their resilience. Medical staff should identify vulnerable patients and caregivers with poorer family-functioning and resilience, and make focused intervention to improve the QoL of both lung cancer patients and their family caregivers. 10.1016/j.ejon.2021.101963
Congruence of cancer pain experience between patients and family caregivers and associated factors: a multicenter cross-sectional study in China. Ma Xiaoxiao,Yu Wenhua,Lu Yuhan,Yang Hong,Li Xin,Kang Dongqin Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer PURPOSE:The purposes of this study were to determine whether there were differences in the cancer pain experience between patients and family caregivers (FCGs) and to explore the associated factors that influence cancer pain experience congruence. METHODS:A multicenter cross-sectional study was conducted. A total of 410 patient-family caregiver dyads completed face-to-face surveys, including information about basic characteristics, the Patient Pain Questionnaire (PPQ), and the Family Pain Questionnaire (FPQ). The difference in cancer pain experience between patients and family caregivers was analyzed using a paired t test. Indicators for the congruence of cancer pain experience were analyzed using the chi-square test and two independent-sample t tests for bivariate analysis and multivariate binary logistic regression analysis. RESULTS:Of the patients, 57.1% were men, and 60.7% perceived moderate performance status. The majority of the family caregivers was female (54.9%). The mean (SD) score on the pain experience subscale was 4.82 (1.66) for 410 patients and 5.02 (1.66) for 410 family caregivers. The difference was significant (P < 0.01). Additionally, 87 (21.2%) dyads were in the congruent group, and 323 (78.8%) dyads were in the incongruent group. Patients' self-perceived moderate performance status (OR = 2.983, P < 0.01) and family caregivers' pain knowledge (OR = 1.171, P < 0.05) were the main factors influencing the congruence of cancer pain experience. CONCLUSION:The findings of this study indicate that family caregivers reported significantly worse cancer pain experiences than patients. Family caregivers' pain knowledge was a primary influencing factor. It is suggested that educational interventions aimed at teaching family caregivers and patients how to communicate their pain experience and improving the knowledge of family members regarding pain and its management may help in aligning their perceptions and thereby contribute to better quality of life and pain management outcomes. 10.1007/s00520-021-06156-2
Resilience, preparedness, and distress among family caregivers of patients with advanced cancer. Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer OBJECTIVE:Resilience has been proposed as a primary factor in how many family caregivers of patients with advanced cancer are able to resist psychological strain and perform effectively in the role while bearing a high load of caregiving tasks. To evaluate this hypothesis, we examined whether self-perceived resilience is associated with distress (anxiety and depressive symptoms), caregiver preparedness, and readiness for surrogate decision-making among a racially diverse sample of family caregivers of patients with newly diagnosed advanced cancer. METHODS:Secondary analysis of baseline data from two small-scale, pilot clinical trials that both recruited family caregivers of patients with newly diagnosed advanced cancer. Using multivariable linear regression, we analyzed relationships of resilience as a predictor of mood, caregiving preparedness, and readiness for surrogate decision-making, controlling for sociodemographics. RESULTS:Caregiver participants (N = 112) were mean 56 years of age and mostly female (76%), the patient's spouse/partner (52%), and White (56%) or African-American/Black (43%). After controlling for demographics, standardized results indicated that higher resilience was relevantly associated with higher caregiver preparedness (beta = .46, p < .001), higher readiness for surrogate decision-making (beta = .20, p < .05) and lower anxiety (beta =  - .19, p < .05), and depressive symptoms (beta =  - .20, p < .05). CONCLUSIONS:These results suggest that resilience may be critical to caregivers' abilities to manage stress, be effective sources of support to patients, and feel ready to make future medical decisions on behalf of patients. Future work should explore and clinicians should consider whether resilience can be enhanced in cancer caregivers to optimize their well-being and ability to perform in the caregiving and surrogate decision-making roles. 10.1007/s00520-021-06265-y
Association between Family Caregivers' Satisfaction with Care for Terminal Cancer Patients and Quality of Life of the Bereaved Family: A Prospective Pre- and Postloss Study. Morishita-Kawahara Miki,Tsumura Akemi,Aiki Sayo,Sei Yoshie,Iwamoto Yumiko,Matsui Haruki,Kawahara Takuya Journal of palliative medicine The quality of life (QOL) of family caregivers often deteriorates after the death of patients with terminal cancer. Although previous retrospective cross-sectional studies of the bereaved family caregivers of cancer patients have suggested that lower satisfaction with care given to terminal cancer patients was related to lower QOL of the bereaved family caregivers, the retrospective cross-sectional study design has limitations. To clarify family caregivers' satisfaction with the care of terminal cancer patients and bereaved family caregivers' QOL. A prospective pre- and postloss study. Family caregivers of terminal cancer patients were recruited from three inpatient hospice/palliative care units in Japan. Family caregivers completed questionnaires, including the Family Satisfaction with Advanced Cancer Care (FAMCARE) scale before loss and the 36-item Short-Form Health Survey (SF-36) questionnaire before loss and six months after the patient's death. A total of 114 family caregivers were included in each analysis. After the patient's death, bereaved family caregivers' mental component summary score of SF-36 significantly differed between low- and high-satisfaction caregiver groups ( = 47 in both groups, mean difference = 3.50,  = 0.048). The proportion of family caregivers with depressive symptoms (moderate or worse) at preloss was 41% (25/61) in the low-satisfaction group and 22% (11/51) in the high-satisfaction group. Family caregivers' satisfaction with the care provided to terminal cancer patients at the end of their lives was associated with the bereaved family caregivers' QOL six months postloss. Enhancing family caregivers' satisfaction with care has the potential to improve their postloss QOL. 10.1089/jpm.2021.0043
Relationships between caregiving stress, mental health and physical health in family caregivers of adult patients with cancer: implications for nursing practice. Saimaldaher Zahra'a H,Wazqar Dhuha Y Scandinavian journal of caring sciences AIM:This study was conducted to investigate the relationships between caregiving stress, mental health and physical health in family caregivers of adult patients with cancer at a University Teaching Hospital in Jeddah city, Saudi Arabia. METHODS:A cross-sectional correlational study was carried out with a convenience sample of 160 family caregivers of adult patients with cancer. Data were collected using a self-administered questionnaire including the Modified Caregiver Strain Index, the DUKE Health Profile and sociodemographic items. The data were analysed using the Statistical Package for the Social Sciences (SPSS). Descriptive and inferential statistics and correlations were performed. RESULTS:Participants experienced a certain level of caregiving stress (M = 9.01, SD = 5.645). Many factors were found to be correlated to higher caregiving stress in this study. Caregiving stress showed significant moderate negative correlations with mental and physical health (p < 0.01). Statistically significant differences were found between age, gender, nationality, education, monthly income, and caregiving stress or DUKE Health Profile scores (p < 0.05). CONCLUSIONS:Caregiving stress affects family caregivers' mental and physical health. Such stress can disrupt the caregiving performance of family caregivers. Discovering the causes of caregiving stress among the family caregivers of adult patients with cancer may help to determine the main elements affecting patient care and can assist oncology nurses in providing support and services to caregivers. Educational strategies/intervention programs in the hospitals may be required to reduce caregiving stress levels and improve the health and well-being of family caregivers of adult patients with cancer. 10.1111/scs.12795
Psychometric Testing of the Chinese Version of Supportive Care Needs Survey for Partners and Caregivers of Cancer Patients. Liu Jing-Jing,Liu Qun-Hui,He Hong-Ye,Zhang Tian,Song Yong-Xia,Wang Wenru,Hong Jing-Fang Journal of cancer education : the official journal of the American Association for Cancer Education The objective of this study was to test the psychometric properties of the Chinese version of the Supportive Care Needs Survey for Partners and Caregivers (SCNS-P&C-C) among the caregivers of Chinese patients with cancer. The original English version of SCNS-P&C was translated into Chinese using a forward and backward translation approach. The psychometric properties of the SCNS-P&C-C including factor structure, convergent, and discriminative validities and internal consistency were then tested. A convenience sample of 498 caregivers of hospitalized patients with cancer was recruited from oncology units in three tertiary public hospitals in Hefei city, mainland China. Exploratory factor analysis revealed four domains of the SCNS-P&C-C, which resemble the original English version scale. The convergent validity of the SCNS-P&C-C has established with statistically significant correlations between the SCNS-P&C-C and the Chinese version of Kessler Psychological Distress Scale (r = 0.327, P < 0.01). The SCNS-P&C-C has also good internal consistency with Cronbach's alpha coefficients ranging from 0.79 to 0.89 for the four subscales and 0.94 for the total scale. The Chinese version of the SCNS-P&C was found to be reliable and valid to assess the supportive care needs for partners and caregivers of Chinese patients with cancer. The SCNS-P&C-C can be used to assess and understand the supportive care needs of Chinese caregivers of patients with cancer. Such information will help the healthcare professionals to formulate tailored supportive care services for the caregivers of Chinese patients with cancer. 10.1007/s13187-018-1442-5
Reliability and validity of the Chinese version of the Head and Neck Information Needs Questionnaire for patients with head and neck cancer and their caregivers. International journal of nursing sciences OBJECTIVES:This study aimed to assess the reliability and validity of the Chinese version of the Head and Neck Information Needs Questionnaire (HaNiQ). METHODS:The HaNiQ was translated into a Chinese version using internationally recognized forward- and back-translation procedures. The reliability and validity of the HaNiQ were measured using Cronbach's α coefficient, split-half reliability, exploratory factor analysis, and Pearson correlation analysis. RESULTS:A total of 207 patients in different head and neck cancer (HNC) stages and 174 caregivers completed the Chinese version of the HaNiQ. Internal consistencies varied between good and very well (Cronbach's α coefficient 0.74-0.90); the split-half coefficient and the content validity index (CVI) of the questionnaire were 83.5% and 83.33%, respectively. The cumulative contribution rates of the 5 subscales in patients with HNCand their caregivers were 62.41% and 61.19%, respectively. However, there are some differences between the Chinese questionnaire for caregiver and the original questionnaire regarding the attribution of items. Items 22, 23, and 27 in the Psychosocial subscale of the English version were assigned to the Survivorship subscale in the Chinese version for caregivers. CONCLUSIONS:The results demonstrated that the Chinese version of the HaNiQ is a reliable and valid instrument for measuring the information needs of patients with HNC and that of their caregivers. Though the structure of the Chinese version was different from the English version for caregivers of HNC patients, the Chinese version of the HaNiQ appears to be reliable and would benefit from further testing. 10.1016/j.ijnss.2021.06.004
Health literacy, social support, and care ability for caregivers of dementia patients: Structural equation modeling. Li Yongnan,Hu Lanying,Mao Xin'e,Shen Yijing,Xue Huiping,Hou Ping,Liu Yongbing Geriatric nursing (New York, N.Y.) At present, the level of health literacy, social support, and care ability of dementia caregivers is not very high. Therefore, the purpose of this study was to construct a structural equation model to explore the relationship between health literacy, social support, and the care ability of dementia caregivers. It is hoped that the study will provide a theoretical basis for future intervention. We recruited 225 dementia patients and their caregivers from August 2018 to June 2019 at the Department of Geriatrics and Neurology. We issued a health literacy questionnaire, social support scale, and a care ability questionnaire. Statistical analyses were performed using SPSS 19.0 and SPSS Amos 23.0. The mean scores for health literacy, social support, and care ability were 13.93±4.18, 34.64±6.42, and 44.44±9.31, respectively. Health literacy was directly related to social support (path coefficient = 0.454). Social support was directly related to care ability (path coefficient = 0.293). Furthermore, health literacy was directly related to care ability (path coefficient = 0.561), while health literacy had indirect associations with care ability via social support (path coefficient = 0.133). This study showed that improving the health literacy of caregivers effectively improved their care ability, and that social support was important for the link between health literacy and care ability. Medical staff and family members can provide appropriate health education and social support according to the characteristics of caregivers to improve the care ability of caregivers, improve the quality of life of patients, and delay the disease process. 10.1016/j.gerinurse.2020.03.014
Development and validation of 'caring ability of family caregivers of patients with cancer scale (CAFCPCS)'. Nemati Shahnaz,Rassouli Maryam,Ilkhani Mahnaz,Baghestani Ahmad Reza,Nemati Maryam Scandinavian journal of caring sciences AIM:Family caregivers have limited abilities that make them vulnerable to the care needs of patients. Therefore, it seems necessary to evaluate their caring ability. The aim of this study was to design an instrument for assessing the caring ability of family caregivers of cancer patients. METHODS:This was a sequential exploratory mixed-method study, carried out in two qualitative and quantitative phases. The concept of caring ability and its dimensions were explained using conventional content analysis in the qualitative phase. The research participants included 41 family caregivers of cancer patients and professional caregivers who were selected using purposeful sampling method until reaching data saturation. The scale items were designed using the results of the qualitative phase of the study, as well as the review of relevant literature. In the quantitative phase, the scale was validated using content and face validity, construct validity, as well as internal consistency and stability. RESULTS:The primary item pool was prepared in 108 items. Content validity was determined using CVR with a cut-off point (0.62), CVI with a cut-off point (0.8) and kappa coefficient (κ) (>0.75). The validity of 72 items was confirmed. Then, the overlapping items were merged and eventually the 45-item scale entered the face validity stage and five items with an impact factor < 1.5 were omitted. Results of KMO = 0.904 and Bartlett = 6184.012 (p < 0.001) justified the need for factor analysis. Scree plot indicates five factors with eigenvalues above 1 and 67.7% of the total variance, including 'Effective role play, Fatigue and Surrender, Trust, Uncertainty, and Caring ignorance'. Reliability of the 31-item instrument indicated a Cronbach's alpha coefficient of 0.93 and ICC of 0.94. CONCLUSIONS:Caring abilities scale (CAI) of family caregivers of patients with cancer is a valid and reliable instrument that can assess caregivers' caring ability. 10.1111/scs.12797
Enhancing the cancer caregiving experience: Building resilience through role adjustment and mutuality. Gibbons Susanne W,Ross Alyson,Wehrlen Leslie,Klagholz Stephen,Bevans Margaret European journal of oncology nursing : the official journal of European Oncology Nursing Society PURPOSE:The purpose of this study was to explore the dyadic experience of caring for a family member with cancer. Particular attention was given to examine the relationship between dyadic perceptions of role adjustment and mutuality as facilitators in resilience for posttreatment cancer patients and family caregivers. METHOD:For this convergent parallel, mixed-methods study using grounded theory methodologies, 12 dyads were recruited from the National Institutes of Health Clinical Center in Bethesda, Maryland, USA. Qualitative data collection focused on social interactions between cancer patients and their family caregivers to better understand and describe how post-treatment patients and caregivers create mutuality in their relationships, how they describe the processes of role-adjustment, and how these processes facilitate dyadic resiliency. Quantitative data collected through electronic survey included the Family Caregiving Inventory (FCI) for Mutuality Scale, Neuro QoL Ability to Participate in Social Roles and Activities, and Satisfaction with Social Roles and Activities-Short Forms, and Mental Health Continuum-Short Form (MHC). RESULTS:Eleven participants were spouses. Twenty-two self-reported as Caucasian. The sample ranged from 35 to 71 years of age (Caregiver M = 53.7, Patient M = 54.3). Most of the caregivers were female (n = 8; 66.7%) and most of the patients were male (n = 9; 75%). Qualitative interview data illuminated two primary psychosocial processes relating to resilience, role adjustment and mutuality, as key facilitators for transformation and growth within dyadic partnerships coping with the challenges of cancer treatment and cancer caregiving. The FCI-mutuality score for patients (M = 3.65 ± 0.47) and caregivers (M = 3.45 ± 0.42) reflected an average level of relationship quality. Relative to participation in, and satisfaction with social roles and activities, patients (M = 50.66 ± 7.70, M = 48.81 ± 6.64, respectively) and caregivers (M = 50.69 ± 8.6, M = 51.9 ± 8.75, respectively) reported scores that were similar to the US General Population (M = 50 ± 10). CONCLUSIONS:New patterns of role adjustment and mutuality can assist with making meaning and finding benefit, and these patterns contribute to dyadic resilience when moving through a cancer experience. There are few interventions that target the function of the dyad, yet the emergent model identified in this paper provides a direction for future dyadic research. By developing interventions at a dyadic level, providers have the potential to encourage dyadic resilience and sustain partnerships from cancer treatment into survivorship. 10.1016/j.ejon.2019.09.004
Family caregivers' level of mastery predicts survival of patients with glioblastoma: A preliminary report. Boele Florien W,Given Charles W,Given Barbara A,Donovan Heidi S,Schulz Richard,Weimer Jason M,Drappatz Jan,Lieberman Frank S,Sherwood Paula R Cancer BACKGROUND:Glioblastoma multiforme (GBM) is associated with a poor prognosis, and patients rely heavily on family caregivers for physical and emotional support. The capability and mental health of family caregivers may influence their ability to provide care and affect patient outcomes. The objective of the current study was to investigate whether caregivers' anxiety, depressive symptoms, burden, and mastery influenced survival in a sample of patients newly diagnosed with GBM. METHODS:Baseline data from caregiver-patient dyads participating in a longitudinal study funded by the National Institutes of Health were used. Cox regression analyses were performed to determine whether caregiver anxiety (Profile of Mood States-Anxiety), depressive symptoms (Center for Epidemiologic Studies-Depression Scale), burden (Caregiver Reaction Assessment), and feelings of mastery (Mastery Scale) predicted the survival time of patients with GBM after controlling for known covariates (patient age, Karnofsky performance status, type of surgery, and postsurgical treatment). RESULTS:A total of 88 caregiver-patient dyads were included. The median overall survival for the sample was 14.5 months (range, 0-88 months). After controlling for covariates, caregiver mastery was found to be predictive of patient survival. With each unit increase in mastery, there was a 16.1% risk reduction in patient death (95% confidence interval, 0.771-0.913; P<.001). CONCLUSIONS:To the authors' knowledge, the results of the current study are among the first to explore the impact of family caregiving on the outcomes of patients with GBM. If these results are supported in other studies, providing neuro-oncology caregivers with more structured support and guidance in clinical practice has the potential to improve caregivers' feelings of mastery, thereby influencing patients' well-being for the better. Cancer 2017;123:832-40. © 2016 American Cancer Society. 10.1002/cncr.30428
Understanding Caregiver Quality of Life in Caregivers of Hospitalized Older Adults With Cancer. Hsu Tina,Nathwani Nitya,Loscalzo Matthew,Chung Vincent,Chao Joseph,Karanes Chatchada,Koczywas Marianna,Forman Stephen,Lim Dean,Siddiqi Tanya,Stein Anthony,Twardowski Przemyslaw,Nademanee Auayporn,Pal Sumanta,Siccion Eduardo,Hein Marjorie,Akiba Chie,Goldstein Leanne,Smith David,Ma Huiyan,Feng Tao,Hurria Arti Journal of the American Geriatrics Society BACKGROUND/OBJECTIVES:Caregivers of older adults with cancer assist both with cancer care and other health issues, which may make them vulnerable to consequences of caregiving. Hospitalization may represent a time when a caregiver's ability to provide care at home is exceeded. We sought to characterize caregivers of hospitalized older adults with cancer, determine their quality of life (QOL), and identify factors associated with caregiver QOL. METHODS:Patients (n = 100), aged 65 years and older, with an unplanned hospitalization and their caregivers were included. Caregivers completed a questionnaire about their health, social support, caregiving relationship, QOL (Caregiver Quality of Life Index-Cancer [CQOLC] tool), and patient function. Patient medical history was obtained via chart review. The association between patient, caregiving, and caregiver factors and CQOLC was determined using multivariate linear regression. RESULTS:Most patients (73%) had metastatic/advanced disease, and 71% received treatment for their cancer within 30 days of hospitalization. Median Karnofsky Performance Status (KPS) was 60%, and 89% required help with instrumental activities of daily living, as reported by caregivers. Median caregiver age was 65 years (range = 29-84 years). The majority (60%) had no major comorbidities and rated their health as excellent/good (79%), though 22% reported worsening health due to caregiving. Caregivers had a median Mental Health Inventory-18 score of 70 (range = 0-97), a median Medical Outcomes Study (MOS)-social activity score of 56 (range = 0-87.5), and a median MOS-Social Support Survey score of 68 (range = 0-100). Caregivers provided a median of 35 hours of care per week (range = 0-168 hours of care per week). Mean CQOLC was 84.6 ± 23.5. Lower caregiver QOL was associated with poorer caregiver mental health, less social support, and poorer patient KPS (P < .05). CONCLUSION:Caregivers of hospitalized older adults with cancer are older but generally in good health. Those with poorer mental health, less social support, and caring for patients with poorer performance status are more likely to experience lower QOL. J Am Geriatr Soc 67:978-986, 2019. 10.1111/jgs.15841
Family caregivers of advanced cancer patients: self-perceived competency and meaning-making. Teo Irene,Baid Drishti,Ozdemir Semra,Malhotra Chetna,Singh Ratna,Harding Richard,Malhotra Rahul,Yang Meijuan Grace,Neo Shirlyn Hui-Shan,Cheung Yin Bun,Neo Patricia Soek Hui,Kanesvaran Ravindran,Kumarakulasinghe Nesaretnam Barr,Lee Lai Heng,Koh Gerald Choon Huat,Finkelstein Eric A, BMJ supportive & palliative care BACKGROUND:Family caregivers of patients with advanced cancer have been reported to provide long hours of care and be at risk for poor psychological outcomes. Although research has focused on the nature of caregiving burden, little attention has been paid to identifying protective factors that improve caregiver psychological outcomes. AIM:We examined the relationship between caregivers' time spent caregiving and the following psychological outcomes: anxiety, depression and caregiving esteem. Subsequently, we explored the main and moderating effects of caregiver-perceived self-competency and sense of meaning on caregiver psychological outcomes. DESIGN/PARTICIPANTS:Cross-sectional analysis was conducted using the baseline data from an ongoing cohort study. Family caregivers of advanced cancer patients (n=287) were recruited from two tertiary hospitals in Singapore. RESULTS:Time spent caregiving was not significantly associated with caregiver anxiety, depression or caregiving esteem. However, significant main effects of self-competency on anxiety and caregiving esteem; and sense of meaning on anxiety, depression and caregiving esteem were observed. Moderator analyses further indicated that self-competency attenuated the positive relationship between time spent caregiving and anxiety, while sense of meaning attenuated the negative relationship between time spent caregiving and caregiving esteem. CONCLUSION:Greater perceived self-competency and sense of meaning are related to better caregiver psychological outcomes, and protect caregivers from worsening outcomes as caregiving hours increase. Our findings suggest that screening caregivers for distress is an important part of care, and that supportive interventions for caregivers should aim to enhance their perceived caregiving competencies and the ability to make meaning of their caregiving role. 10.1136/bmjspcare-2019-001979
The pervasive nature of uncertainty-a qualitative study of patients with advanced cancer and their informal caregivers. Shilling Valerie,Starkings Rachel,Jenkins Valerie,Fallowfield Lesley Journal of cancer survivorship : research and practice PURPOSE:The aim of this study was to explore the impact of extended cancer survival on broader aspects of life and wellbeing such as occupational, financial and family life for patients with advanced cancer and their nominated informal caregivers. METHODS:In-depth qualitative interviews were transcribed verbatim. A thematic framework was developed from an initial process of open coding and tested iteratively as new data were collected. RESULTS:Twenty-four patient-caregiver dyads with advanced ovarian (9), melanoma (9) or lung cancer (6). Patients were aged 39-84 (median 62 years) and caregivers 19-85 (median 54 years). Caregivers were the partners/spouses (15), children (5), siblings (2) and friends (2) of patients. One particular theme, 'uncertainty', encompassed many issues such as planning for the future, providing for one's family, employment and finances. Uncertainties were related to the timescale and trajectory of the disease and lack of control or ability to make plans. There were marked age effects. Accounts from within the same dyad often differed and patients and caregivers rarely discussed concerns with each other. CONCLUSIONS:Both patients and their informal caregivers were challenged by the uncertainties around living with advanced cancer and the lack of a defined trajectory. This impacted many diverse areas of life. Although distressing, dyads seldom discussed these concerns with each other. IMPLICATIONS FOR CANCER SURVIVORS:Uncertainty is a recurrent issue for cancer survivors and their families impacting broad aspects of their lives and their ability to move forward; however, patients and caregivers in this study rarely discussed these concerns together. Uncertainty should be discussed periodically, together, and healthcare professionals could facilitate these discussions. The use of one or more 'trigger questions' in clinic appointments may provide an opportunity to start these dialogues. 10.1007/s11764-017-0628-x
Caring ability of family caregivers of patients on cancer treatment: associated factors. Coppetti Larissa de Carli,Girardon-Perlini Nara Marilene Oliveira,Andolhe Rafaela,Gutiérrez Maria Gaby Rivero de,Dapper Steffani Nikoli,Siqueira Fernanda Duarte Revista latino-americana de enfermagem OBJECTIVE:To analyze the association between the caring ability of family caregivers of patients on cancer treatment with the demographic and clinical characteristics of the patients, as well as the sociodemographic characteristics of the caregivers and of the care provided. METHODS:A cross-sectional study was conducted with 132 family caregivers of patients on cancer treatment whose data were collected through the Brazilian version of the Caring Ability Inventory and questionnaires characterizing patients, caregivers and the care provided. Student's t, Mann-Whitney or Kruskal-Wallis tests were used at the significance level ≤5%. RESULTS:Patients' age was significantly associated with overall caring ability (p = 0.002) and the caregiver's dimensions courage (p = 0.006) and patience (p = 0.009). Caregivers' education was associated with overall caring ability (p = 0.028) and the dimensions courage (p = 0.008) and patience (p = 0.045). Marital status was associated with the overall caring ability (p = 0.020); and the patience dimension (p = 0.045) and the time providing care with the patience dimension (p = 0.027). CONCLUSION:Caregivers of elderly patients who have higher schooling and do not have a partner demonstrate greater caring ability. 10.1590/1518-8345.2824.3048
A cancer specific middle-range theory of symptom self-care management: A theory synthesis. Baydoun Mohamad,Barton Debra L,Arslanian-Engoren Cynthia Journal of advanced nursing AIM:This article describes the development of a middle-range theory of symptom self-care management for adults with cancer. BACKGROUND:Current evidence indicates that people with cancer may benefit from engagement in self-care management behaviours, one of which is symptom management. A middle-range theory that explains and guides symptom self-care management in people with cancer is lacking. DESIGN:This paper combines and expands prior work related to symptom management and self-care management to introduce a newly synthesized theory of symptom self-care management for adult people with cancer. Walker and Avant's methodological approach was used to guide this theory synthesis. DATA SOURCES:PubMed, CINAHL, and Cochrane Library databases of peer reviewed journal articles published before 15 March 2018. IMPLICATIONS FOR NURSING:The newly synthesized theory conceptualizes cancer as a chronic illness with related symptoms that persist beyond the acute phase of treatment. This theory sheds the light on self-care management as an essential approach to managing cancer-related symptoms and underscores the importance of empowering and enabling people with cancer to manage their symptoms in partnership with healthcare providers. CONCLUSION:The new theory offers a comprehensive conceptualization of symptom self-care management behaviours in adults with cancer. It clarifies potential determinants and effects of cancer-related symptoms and puts forth factors that may influence patient adherence to symptom self-care management behaviours. This new theory may influence the development of symptom management interventions across the phases of the cancer self-care continuum. Research to test the new theory is warranted. 10.1111/jan.13829