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    Quality of life among primary caregivers of Taiwanese children with brain tumor. Chien Li-Yin,Lo Li-Hua,Chen Chwen-Jen,Chen Yueh-Cheh,Chiang Chuen-Chu,Yu Chao Yu-Mei Cancer nursing This study evaluated the quality of life among primary caregivers of Taiwanese children with brain tumors and examined the factors associated with their quality of life. Data were obtained from the Impact of Childhood Cancer on the Chinese Family survey conducted by the Taiwan Childhood Cancer Foundation in 2001. This analysis included 30 families. Quality of life among primary caregivers was measured by the World Health Organization Questionnaire on Quality of Life: BREF-Taiwan version. Quality-of-life scores for various subgroups were compared using the Mann-Whitney U test or the Kruskal-Wallis test. The scores in the physical health and psychological domains for caregivers of children with brain tumors were lower than the norm scores for healthy adults. Caregivers of boys had higher scores in social relationships. Caregivers of children within 5 years of the brain tumor diagnosis had higher scores in the physical health domain. The child's treatment stage was associated with caregiver scores in the physical health and psychological domains. The caregiver's psychological domain was negatively affected by a low education level. The health status of caregivers was positively associated with their quality of life in physical health, psychological status, social relationships, and environment domains. The lower quality of life among caregivers indicates the need for promoting an awareness in healthcare providers of the impact that having a child with brain tumor has on the quality of life. Family-centered interventions are implicated. Healthcare providers should elicit information regarding the caregiver's perceived physical health and intervene early. This may help to improve the quality of life among caregivers of children with brain tumors. 10.1097/00002820-200308000-00009
    Terminal care of the child with cancer at home. Sirkiä K,Saarinen U M,Ahlgren B,Hovi L Acta paediatrica (Oslo, Norway : 1992) One hundred paediatric patients with either leukaemia (36%), solid tumours (34%) or brain tumours (30%), treated at the Children's Hospital, University of Helsinki, Finland, died during 1987-92; 70 of them died while in organized terminal care. They were treated at home (60%), in hospital (29%), and partly at both (11%). One or both parents stayed at home to take care of their child. Personnel of the oncologic ward coordinated home care. The purpose of this study was to evaluate the advantages and disadvantages of a terminal care program, with special reference to terminal care at home. Evaluation included retrospective analysis of patients' records, as well as a structured interview with the two parents separately. The quality of life of the children during the terminal period was greatly influenced by their happiness at being at home. Relief of symptoms, particularly pain, was in most instances adequate. Most parents had no complaints to make afterwards. Only some of them complained of having received too little information, too little supervision and support, and insufficient preparation for the death of the child. Thus, the system of terminal care at home proved satisfactory for the child and the whole family in many different respects. For successful home care, the parents need continuous supervision, help and support by well-trained personnel.
    Parents' accounts of obtaining a diagnosis of childhood cancer. Dixon-Woods M,Findlay M,Young B,Cox H,Heney D Lancet (London, England) BACKGROUND:Quick diagnosis and treatment of cancers is a UK government priority. However, the process of arriving at a diagnosis of childhood cancer has been neglected in comparison with the attention given to cancers in adults. We investigated parents' narratives about the period before their child's diagnosis. METHODS:We undertook semistructured interviews with 20 parents whose children (aged 4-18 years) had a confirmed diagnosis of cancer or brain tumour. All interviews were recorded and fully transcribed. Dates of consultations and investigations were noted from children's medical records. Data were analysed by the constant comparison method. FINDINGS:The time before diagnosis is very significant for parents and might affect their adaptation and reaction to their child's diagnosis. Parents were first alerted to their child's illness by a range of signs and symptoms, and by behavioural and affective changes. These early symptoms were often vague, non-specific, and common, and some older children were reluctant to disclose symptoms. Ten families' accounts of this period before diagnosis included a dispute with doctors. Disagreements between parents and doctors about the seriousness of children's symptoms and the need for investigations occurred in both primary and secondary care. Some parents felt that doctors discounted their special knowledge of their child. INTERPRETATION:Parents' accounts offer valuable insights into their experiences of obtaining a diagnosis of childhood cancer and into possible sources of delays in this complex process. If delays are to be avoided or reduced, attention must be given to the different roles of parents, children, general practitioners, hospital specialists, and type of cancer. Our findings have important implications for policy, practice, and research, and for the management of childhood illnesses. 10.1016/S0140-6736(00)04130-1
    Stressors in the daily life of parents after a child's successful cancer treatment. Norberg Annika Lindahl,Green Alexandra Journal of psychosocial oncology In previous studies, the report of distress has been documented in parents after successfully completing cancer treatment of a child. It is typically assumed that this distress represents lasting reactions to experiences during active treatment, in the form of post-traumatic stress or less severe crisis reactions. However, some researchers have suggested that parents may also perceive current stressors related to a child's cancer even after successful completion of the cancer treatment. Using two family cases as a framework, we discuss strain and new conditions requiring adaptation in various aspects of the everyday life of parents after treatment completion. In addition, we argue that an examination of psychological exhaustion and fatigue in these parents may be appropriate. Further examination is needed on the nature of parental stress after a child's cancer treatment. The distinction is important, since the appropriate methods for professional support may differ with regard to parents struggling to cope with current stressors and those showing signs of persistent post-traumatic stress or fatigue. 10.1300/J077v25n03_07
    Managing communication with young people who have a potentially life threatening chronic illness: qualitative study of patients and parents. Young Bridget,Dixon-Woods Mary,Windridge Kate C,Heney David BMJ (Clinical research ed.) OBJECTIVES:To examine young people's and parents' accounts of communication about cancer in childhood. DESIGN:Semistructured interviews analysed using the constant comparative method. SETTING:Paediatric oncology unit. PARTICIPANTS:13 families, comprising 19 parents (13 mothers, six fathers) and 13 patients aged 8-17 years, recruited from one paediatric oncology unit. The patients had cancer or brain tumour. RESULTS:Most parents described acting in an executive-like capacity, managing what and how their children were told about their illness, particularly at the time of diagnosis. Their accounts were shaped by concerns to manage their identity as strong and optimistic parents and to protect their child's wellbeing. The patients identified elements of their parents' role that both facilitated and constrained their communication, and while they welcomed their parents' involvement, some expressed unease with the constraining aspects of their parents' role. Some young people described feeling marginalised in consultations and pointed to difficulties they experienced in encounters with some doctors. CONCLUSIONS:There are difficulties in managing communication with young people who have a chronic, life threatening illness. Health professionals need to be aware of how the social positioning of young people (relative to adults) and the executive role of parents can contribute to the marginalisation of young people and hamper the development of successful relationships between themselves and young patients. 10.1136/bmj.326.7384.305
    The psychosocial impacts on families of low-incidence, complex conditions in children: the case of craniopharyngioma. Jackson Alun C,Tsantefski Menka,Goodman Helen,Johnson Belinda,Rosenfeld Jeffery Social work in health care This paper reports qualitative data from a multidisciplinary, multimethod Craniopharyngioma Child and Family Impact Study conducted at the Royal Children's Hospital, Melbourne. The study aimed to assess the psychosocial impact on children and their families of a childhood craniopharyngioma, a congenital non-hereditary brain tumour that is 'benign' by histology, but often locally invasive. The condition may result in significant morbidity and mortality due to location in the brain, which tends to precipitate multisystemic abnormalities either at the time of presentation, or in conjunction with treatment. The condition has a high survival rate with approximately 90 percent of children alive ten years after diagnosis and although the diagnosis and treatment of craniopharyngioma may result in severe physical and emotional burden for the child and family, there have been few studies to date on the psychosocial impact of this multifaceted condition. Interviews incorporating a purpose-designed Craniopharyngioma Symptom and Treatment Impact Scale were held with 13 families. Impacts on both the family and the children were identified as well as information about the child's coping capacity; parents' fear, uncertainty and trust; family managing and mastery; the experience of hospital; service use and illness specific support. Implications for social work practice are discussed. 10.1300/j010v38n01_05
    A School Passport as Part of a Protocol to Assist Educational Reintegration After Medulloblastoma Treatment in Childhood. Tresman Rachel,Brown Morven,Fraser Faye,Skinner Roderick,Bailey Simon Pediatric blood & cancer BACKGROUND:Medulloblastoma is the most common malignant brain tumour in children and is treated with a combination of surgery, radiotherapy and chemotherapy. These children frequently experience long-term cognitive, social and physical sequelae, which significantly affect school reintegration. AIM:This study aimed to explore school-return experiences to create a more structured school reintegration protocol for children postmedulloblastoma. METHODS:A cohort of nine patients who had completed treatment and for whom full neuropsychometric data were available was included in the study (median time since diagnosis 8 years). Data were collected using qualitative parental questionnaires, semistructured interviews with teachers (n = 12) and healthcare professionals (HCPs) (n = 6) involved in their school reintegration. Thematic analysis was employed. A focus group with five HCPs was then used for data validation. RESULTS:This study uncovered the following four main subjects: (1) Information sharing; (2) education and empowerment (of educational professionals (EP) and parents); (3) communication between parents, HCPs and EPs; and (4) long-term difficulties. DISCUSSION:Implementation of a standardised protocol delivered within the structure of a school passport document would aid uniform follow-up. The proposed multistage protocol includes early communication and reintegration planning followed by meetings at school re-entry. Follow-up meetings are suggested to reduce information loss and reassess the child's needs. Hospital support at school transitions, inclusion of school data in long-term clinical follow-up and long-term rehabilitation are also recommended. Each stage would be supported by school passport documentation and would facilitate school and parental empowerment, paramount to the long-term sustainability of successful schooling. 10.1002/pbc.26071
    "Now we have to cope with the rest of our lives". Existential issues related to parenting a child surviving a brain tumour. Forinder Ulla,Lindahl Norberg Annika Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer AIM:The aim of the paper was to explore the existential issues expressed by parents of children who had been treated for brain tumours. BACKGROUND:A brain tumour in childhood is an event that triggers acute traumatic stress and it has long-term consequences for the child as well as for the parents. Due to advanced treatment techniques, more children survive brain tumours today. However, for most survivors a brain tumour is associated with sequelae and uncertainty about the future. METHOD:Eleven parents of seven children successfully treated for brain tumours were interviewed in 2006. The semi-structured interviews were conducted by two licensed psychologists. The Inductive Thematic method was used to analyse the data. FINDINGS:Consequences of a perceived threat, uncertainty and loss were described in terms of grief and sadness, loneliness, changes in the conditions for parenting, and changed views regarding identity and meaning. A traumatic experience is typically followed by an existential crisis, i.e. a process of restoring the person's assumptive world. As summarized by one parent: "Now we have to cope with the rest of our lives". The statement can be seen as a metaphor for the reconstruction of everyday life - a new picture including the child's disease and its sequelae, as well as the uncertainty about what the future might be like. CONCLUSION:The findings underscore the importance of the social network, validating and supporting parents through this process. Moreover, in this social network the paediatric oncology and neurology care is a significant part. 10.1007/s00520-009-0678-3
    Stress-mediated quality of life outcomes in parents of childhood cancer and brain tumor survivors: a case-control study. Witt Whitney P,Litzelman Kristin,Wisk Lauren E,Spear Hilary A,Catrine Kris,Levin Nataliya,Gottlieb Carissa A Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation PURPOSE:To determine if caring for a child with cancer or a brain tumor affects parental health and mental health and if and to what extent stress mediates the relationship between case status and parental quality of life. METHODS:In person interviewer-assisted surveys were administered to 74 case dyads (children diagnosed with cancer or a brain tumor and their parents) and 129 control dyads (children without health problems and their parents from a community sample) to assess health-related quality of life and perceived levels of stress. RESULTS:Parents of children with cancer or a brain tumor had significantly worse health-related quality of life, including worse overall mental health. Overall physical health was no different between cases and controls. Staged multivariate analysis revealed that worse health-related quality of life is completely mediated by perceived stress in these parents. CONCLUSIONS:The experience of caring for a child with cancer is not in itself related to poor quality of life, but is related to an increased level of stress that may adversely impact parental mental health and quality of life. 10.1007/s11136-010-9666-9
    Expectations for function and independence by childhood brain tumors survivors and their mothers. Lucas Matthew S,Barakat Lamia P,Jones Nora L,Ulrich Connie M,Deatrick Janet A Narrative inquiry in bioethics Survivors of childhood brain tumors face many obstacles to living independently as adults. Causes for lack of independence are multifactorial and generally are investigated in terms of physical, cognitive, and psychosocial treatment-related sequelae. Little is known, however, about the role of expectation for survivors' function. From a mixed-methods study including qualitative interviews and quantitative measures from 40 caregiver-survivor dyads, we compared the data within and across dyads, identifying four distinct narrative profiles: (A) convergent expectations about an optimistic future, (B) convergent expectations about a less optimistic future, (C) non-convergent expectations about a less optimistic future, and (D) non-convergent expectations about an unclear future. Dyads both do well and/or struggle in systematically different manners in each profile. These profiles may inform the design of interventions to be tested in future research and help clinicians to assist families in defining, (re-)negotiating, and reaching their expectations of function and independence. 10.1353/nib.2014.0068
    "She Was a Little Social Butterfly": A Qualitative Analysis of Parent Perception of Social Functioning in Adolescent and Young Adult Brain Tumor Survivors. Wilford Justin,Buchbinder David,Fortier Michelle A,Osann Kathryn,Shen Violet,Torno Lilibeth,Sender Leonard S,Parsons Susan K,Wenzel Lari Journal of pediatric oncology nursing : official journal of the Association of Pediatric Oncology Nurses Psychosocial sequelae of diagnosis and treatment for childhood brain tumor survivors are significant, yet little is known about their impact on adolescent and young adult (AYA) brain tumor survivors. Interviews were conducted with parents of AYA brain tumor survivors with a focus on social functioning. Semistructured interviews were conducted with English- and Spanish-speaking parents of AYA brain tumor survivors ≥10 years of age who were >2 years postdiagnosis, and analyzed using emergent themes theoretically integrated with a social neuroscience model of social competence. Twenty parents representing 19 survivors with a survivor mean age 15.7 ± 3.3 years and 10.1 ± 4.8 years postdiagnosis were interviewed. Several themes relevant to the social neuroscience social competence model emerged. First, parents' perceptions of their children's impaired social functioning corroborated the model, particularly with regard to poor social adjustment, social withdrawal, impaired social information processing, and developmentally inappropriate peer communication. Second, ongoing physical and emotional sequelae of central nervous system insults were seen by parents as adversely affecting social functioning among survivors. Third, a disrupted family environment and ongoing parent psychosocial distress were experienced as salient features of daily life. We document that the aforementioned framework is useful for understanding the social impact of diagnosis and treatment on AYA brain tumor survivorship. Moreover, the framework highlights areas of intervention that may enhance social functioning for AYA brain tumor survivors. 10.1177/1043454216688660
    Issues in families of children with brain tumors. Freeman K,O'Dell C,Meola C Oncology nursing forum PURPOSE/OBJECTIVES:To determine the needs of children with brain tumors and their parents/guardians and siblings during the six stages of illness: diagnosis, hospitalization, posthospitalization, adjuvant treatment, recurrence, and terminal or reported cured. DESIGN:A cross-sectional, qualitative study of families using focus group methodology. SETTING/SAMPLE:Families with a child diagnosed with a brain tumor recruited from the practices and clinics of several major teaching hospitals in the New York metropolitan area. Families traveled as far as 70 miles for the group meeting. Varying ethnic groups and family structures were represented. METHODS:Groups were separated into parents/guardians, siblings, and affected children. The children's groups were divided further into age 10 and older and younger than age 10. During the focus group, moderators followed an outline of topics identified from family interviews, the literature, and content experts that were important to families in similar situations. An assistant moderator took detailed notes, and the entire group meeting was audiotaped. Information was transcribed and analyzed using qualitative analysis techniques. FINDINGS:11 focus groups met involving 7 affected children, 24 adults, and 19 siblings. Issues identified as important by the group members fell into four categories: Interaction With Healthcare Providers, Medical Information/Education, Healthcare Utilization and Treatment, and Psychosocial Issues. The needs of family members differed at various stages of the illness. CONCLUSIONS:The particular impact of the four major areas of concern differed by family role and stage of illness. IMPLICATIONS FOR NURSING PRACTICE:To provide optimal care, healthcare professionals must be aware of the family's composition and support systems and the impact that the illness has on individual family members at each stage of illness.
    Caregiver perspectives on the social competence of pediatric brain tumor survivors. Hocking Matthew C,Quast Lauren F,Brodsky Cole,Deatrick Janet A Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer ᅟ: Pediatric brain tumor survivors are at risk for significant difficulties related to social competence. Little research has examined factors that contribute to survivor social problems. PURPOSE:The current study is grounded in a model of social competence for youth with brain disorder and used qualitative and quantitative methods to obtain caregiver perspectives on survivor social competence and identify pertinent risk and resistance factors. METHODS:The study occurred in two phases, including focus groups with 36 caregivers of 24 survivors and confirmatory interviews with 12 caregivers of 12 survivors. RESULTS:Qualitative content analyses resulted in three themes that were illustrative of the model of social competence. Themes included (1) the impact of survivor sequelae on social function; (2) the role of family in evaluating and promoting survivor social development; and (3) the match between the survivor's social context and developmental needs. Quantitative data supported the associations between survivor social skills, survivor executive function, and family functioning. CONCLUSIONS:Overall, findings underscore the influence of risk and resistance factors across different systems on survivor social competence and suggest directions for future research and intervention efforts. 10.1007/s00520-017-3805-6
    Parent-child communication and psychological adjustment in children with a brain tumor. Adduci Annarita,Jankovic Momcilo,Strazzer Sandra,Massimino Maura,Clerici Carlo,Poggi Geraldina Pediatric blood & cancer BACKGROUND:Internalizing problems, anxiety, depression, withdrawal, and consequent social problems are frequently observed in children with brain tumors. The objective of this work is to describe the relationship between these psychological problems and the type of parent-child communication established about the disease. PROCEDURES:A group of 64 children surviving a brain tumor (aged 4-18 years) underwent psychological assessment by means of parent reports on the Child Behavior Checklist (CBCL) and the Vineland Adaptive Behavior Scales (VABS). A semi-structured interview with each child and their parents enabled us to classify the method of communication regarding the disease as "avoidance," "ineffective," and "effective." Demographic, clinical, and functional data relating to the disease were also collected. RESULTS:A significant relationship between the onset of Internalizing problems, withdrawal, anxiety-depression, and social problems and the presence of avoidance or ineffective communication about the disease was observed (P = 0.001, P = 0.001, P = 0.001, and P = 0.01, respectively). These psychological problems did not prove to be associated to demographic or clinical variables; however, they were found to be related to the children's residual functional problems. By contrast, the method of communication proved to be unrelated to clinical or functional variables, but it was associated to demographic variables such as sex and age at assessment. CONCLUSIONS:Effective (complete, truthful, consistent, comprehensible, gradual and continuous, and tailored) communication to the child about his/her condition proved to be associated with a better psychological outcome. 10.1002/pbc.24165
    Patterns of family management for adolescent and young adult brain tumor survivors. Deatrick Janet A,Barakat Lamia P,Knafl George J,Hobbie Wendy,Ogle Sue,Ginsberg Jill P,Fisher Michael J,Hardie Thomas,Reilly Maureen,Broden Elizabeth,Toth Jennifer,SanGiacomo Nicole,Knafl Kathleen A Journal of family psychology : JFP : journal of the Division of Family Psychology of the American Psychological Association (Division 43) Little is known about how families systemically incorporate the work of caring for adolescent and young adult (AYA) survivors of childhood brain tumors who often remain dependent on their families well into adulthood. The primary aim of this study was to develop a typology of family management (FM) patterns for AYA survivors. The secondary aims were to compare them with FM patterns previously described for children with chronic health conditions and to validate the patterns using quantitative and qualitative data. Guided by the Family Management Styles Framework, a sequential, mixed-methods design was used to gather quantitative data from 186 mothers (primary caregivers) and 134 AYA survivors. FM patterns (family focused; somewhat family focused; somewhat condition focused; and condition focused) were identified using cluster analysis of data from the Family Management Measure. FM patterns were found to be similar to those for children with chronic health physical conditions and were significantly related to maternal quality of life, survivor quality of life (health-related quality of life [self- and mother proxy report]), cancer-related variables (treatment intensity, medical late effects), and family functioning in theoretically meaningfully ways. Significant demographic characteristics included private insurance and AYA survivors' engagement in school or employment. Qualitative analysis of data from 45 interviews with mothers from the larger sample provided additional support for and elaborated descriptions of FM patterns. Identification of FM patterns moves the science of family caregiving forward by aggregating data into a conceptually based typology, thereby taking into account the complex intersection of the condition, the family, and condition management. (PsycINFO Database Record 10.1037/fam0000352
    Pediatric brain tumor patients: their parents' perceptions of the hospital experience. Jackson Alun C,Stewart Helen,O'Toole Maree,Tokatlian Nicole,Enderby Kate,Miller Jane,Ashley David Journal of pediatric oncology nursing : official journal of the Association of Pediatric Oncology Nurses Studies have shown that admission to the hospital of a child can induce feelings of fear and helplessness in parents, challenging usual patterns of coping and parenting competence. Stress has been associated with parents' need to establish effective communication with staff and their need for information, ready access to their children, and participation in decision making relating to their child's care. This study of coping and adjustment was undertaken with the parents, including mothers and fathers, of children under 18 years of age diagnosed with a brain tumor, presenting at Royal Children's Hospital, Melbourne, between 2001 and 2002 (N=53). It was a prospective study using repeated measures over time. Participants in the study were involved in a questionnaire interview at 4 different points: at the time of diagnosis, 6 months postdiagnosis, 1 year postdiagnosis, and 2 years postdiagnosis, in which they were asked, among other things, about their experience of the hospital. The point of diagnosis was marked by a high level of dependence, with parents coping with rapid decision making and shock, and the surrender of care of their child. Parents identified high levels of information need but noted that they were often too stressed to take in information early on, and that this information need persisted up to the 2-year postdiagnosis point. More parents expressed dissatisfaction with the hospital and particularly with their interactions with the health care team at the 6-month post-diagnosis period, reflecting a possible reduction in attention given to families once they had settled into the treatment routine and the crisis of diagnosis had passed. 10.1177/1043454206296030
    Towards a better quality of life (QoL) for patients with pituitary diseases: results from a focus group study exploring QoL. Andela Cornelie D,Niemeijer Nicolasine D,Scharloo Margreet,Tiemensma Jitske,Kanagasabapathy Shaaji,Pereira Alberto M,Kamminga Noëlle G A,Kaptein Ad A,Biermasz Nienke R Pituitary PURPOSE:Patients treated for pituitary adenomas generally report a reduced quality of life (QoL). At present, the patient's perspective of QoL has not been fully addressed and this, and further insight in potential determinants of QoL in pituitary diseases is required to design strategies to improve QoL. We aimed to define patients' perceived QoL and to identify potential factors they perceive to contribute to QoL. METHODS:We conducted four independent focus groups of six patients each, per specific pituitary disease (Cushing's disease, Non-functioning pituitary macroadenoma, acromegaly, prolactinoma). In two sessions these focus groups discussed aspects of QoL. Verbatim transcripts were analyzed using a grounded theory approach. RESULTS:The issues raised by the patient groups were compatible with statements and items of available QoL questionnaires. In addition, other QoL aspects emerged, such as visual limitations (physical problems); issues with a desire to have children/family planning, fear of collapsing, fear of recurrence, panic, persisting thoughts, problems with an altered personality, anger, jealousy, sadness, frustration (psychological problems); and difficulties communicating about the disease, lack of sympathy and understanding by others, and a reduced social network (social problems). Next, this study uncovered factors which might contribute to a decreased QoL (e.g. less effective coping strategies, negative illness perceptions, negative beliefs about medicines, unmet needs regarding care). CONCLUSIONS:This focus group study demonstrated that important disease-specific aspects of QoL are neglected in current pituitary disease-specific questionnaires and elucidated potential factors that contribute to a decreased QoL. Information provided in this study can (and will) be used for developing additional items for disease-specific QoL questionnaires and for the development of a self-management intervention aiming to improve QoL in patients treated for pituitary diseases. 10.1007/s11102-014-0561-1
    Evaluation of an online peer support network for fathers of a child with a brain tumor. Nicholas David B,Chahauver Anu,Brownstone David,Hetherington Ross,McNeill Ted,Bouffet Eric Social work in health care This study explored impacts of an online support network for fathers of a child with a brain tumor. Evaluation comprised pre/post-intervention questionnaires, content analysis of online network postings, and post-intervention qualitative interviews. Findings suggest that this intervention was beneficial to fathers. Positive effects on paternal coping were demonstrated, as were opportunities to grapple with difficult issues related to having a child with a brain tumor. Fathers recommended a combined resource of online and face-to-support, including the development of a support network with a larger participant base. Implications for practice are examined. 10.1080/00981389.2011.631696
    Evaluation of Physician and Nurse Dyad Training Procedures to Deliver a Palliative and End-of-Life Communication Intervention to Parents of Children with a Brain Tumor. Hendricks-Ferguson Verna L,Kane Javier R,Pradhan Kamnesh R,Shih Chie-Schin,Gauvain Karen M,Baker Justin N,Haase Joan E Journal of pediatric oncology nursing : official journal of the Association of Pediatric Oncology Nurses When a child's prognosis is poor, physicians and nurses (MDs/RNs) often struggle with initiating discussions about palliative and end-of-life care (PC/EOL) early in the course of illness trajectory. We describe evaluation of training procedures used to prepare MD/RN dyads to deliver an intervention entitled: Communication Plan: Early Through End of Life (COMPLETE) intervention. Our training was delivered to 5 pediatric neuro-oncologists and 8 pediatric nurses by a team of expert consultants (i.e., in medical ethics, communication, and PC/EOL) and parent advisors. Although half of the group received training in a 1-day program and half in a 2-day program, content for all participants included 4 modules: family assessment, goal-directed treatment planning, anticipatory guidance, and staff communication and follow-up. Evaluations included dichotomous ratings and qualitative comments on content, reflection, and skills practice for each module. Positive aspects of our training included parent advisers' insights, emphasis on hope and non-abandonment messages, written materials to facilitate PC/EOL communication, and an MD/RN dyad approach. Lessons learned and challenges related to our training procedures will be described. Overall, the MDs and RNs reported that our PC/EOL communication-training procedures were helpful and useful. Future investigators should carefully plan training procedures for PC/EOL communication interventions. 10.1177/1043454214563410
    Mother-caregiver expectations for function among survivors of childhood brain tumors. Lucas Matthew S,Barakat Lamia P,Ulrich Connie M,Jones Nora L,Deatrick Janet A Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer PURPOSE:Children diagnosed with brain tumors increasingly survive to adulthood, although they do so with needs often requiring continued parental caregiving. We sought to describe the nature of caregivers' expectations about survivors' function and how expectations connect to ongoing management and decision-making. METHODS:Forty-five qualitative interviews with mother-caregivers were conducted and coded for themes related to expectations for their adolescent/young adult children living post-childhood brain tumors. RESULTS:Five main themes emerged as integral to mother-caregiver expectations: realizing a difference in the survivor, noticing limitations to independence in the survivor, memories of learning about clinical prognoses as understood from consent meetings and education, managing these realizations, and acknowledging unresolved challenges. CONCLUSIONS:Caregiver expectations are influenced by both initial clinical interactions and contemporary family dynamics and require individual- and family-specific survivorship planning. As caregiver expectations can influence management behaviors that impact outcomes and possibly independence, implications for clinician-caregiver shared decision-making are substantial. 10.1007/s00520-015-3013-1
    The experience of mothers caring for a child with a brain tumour. Shortman R I,Beringer A,Penn A,Malson H,Lowis S P,Sharples P M Child: care, health and development BACKGROUND:Brain tumours are the second most common form of childhood cancer, accounting for over 20% of all cases in European children. Understanding the impact of diagnosis and treatment of a brain tumour on the family is an essential pre-requisite to identifying ways to provide effective support. AIM:(1) To explore the impact of having a child with a brain tumour on the main caregiver in the family; (2) to describe mothers' experiences of coping with their child's illness, including personal barriers and strengths; and (3) to identify causes of stress and sources of support to inform improvements in care delivery. METHOD:Participants were drawn from a group of caregivers enrolled in a longitudinal study of outcome following diagnosis of a childhood brain tumour. Six caregivers took part, two from each of the high-, medium- and low-impact groups based on their Impact on Families Scale scores. Semi-structured interviews were used, with questions covering: (1) impact of the diagnosis on main caregiver and family; (2) personal barriers and strengths; and (3) causes of stress and sources of support. Interviews were transcribed verbatim and coded manually into five themes, which comprised 19 subthemes. FINDINGS:Coping methods and provision of help and support were major preoccupations for main caregivers from all impact groups. Caregivers in the high-impact group reported less conflict. High- and medium-impact group caregivers had experienced less 'hindrance and heartache', than those with low impact scores, suggesting that the stress associated with diagnosis and treatment of the tumour may have increased cohesion and acceptance within these families. CONCLUSION:Families of children diagnosed with a brain tumour experience considerable negative impact and may perceive themselves as struggling to cope. Provision of help and support, within and outside the extended family, including from health, education and other services, is perceived as helpful. 10.1111/cch.12005
    A Retrospective Study of Mothers' Perspectives of the Lived Experience of Anticipatory Loss of a Child From a Terminal Brain Tumor. Lou Hsiao-Ling,Mu Pei-Fan,Wong Tai-Tong,Mao Hsin-Chun Cancer nursing BACKGROUND:The family of a child with an advanced brain tumor may undergo serious physical and psychological impacts as the child's conditions worsen. It is important for health professionals to understand the mother's experiences when facing a child with cancer recurrence or who is dying. OBJECTIVE:A retrospective study using Husserl's phenomenological approach was used to explore the essence of the maternal experiences related to the anticipatory loss of families of a child with advanced cancer. METHODS:Data were collected through in-depth face-to-face interviews. Colaizzi's method for analyzing phenomenological data was used to elicit an invariant description of the interviews' meaning. RESULTS:Ten mothers were enrolled in this study. Five themes emerged: (1) losing hope of a cure, (2) encountering death, (3) establishing a protective role toward the child, (4) the intertwining chaos and strengths of family life, and (5) contending against death. CONCLUSIONS:These findings represent the experiences of mothers when facing the impending loss of a child and involve the dynamic relationships between the parents' belief concerning death, the parent-child relationship, the empowerment of family resilience, and maintaining the child's dignity. IMPLICATIONS FOR PRACTICE:Nursing and medical staff need to develop a better understanding of each child's and each family's belief systems with respect to treatment, their relationship, and their experience of being on the divide between hope and death, while at the same time caring for the family who is facing the anticipatory loss of a child with advanced cancer. 10.1097/NCC.0000000000000178
    Palliative care of children with brain tumors: a parental perspective. Zelcer Shayna,Cataudella Danielle,Cairney A Elizabeth L,Bannister Susan L Archives of pediatrics & adolescent medicine OBJECTIVE:To explore the end-of-life experience of children with brain tumors and their families. DESIGN:Qualitative analysis of focus group interviews. SETTING:Children's Hospital, London Health Sciences Center. PARTICIPANTS:Twenty-five parents of 17 children who had died of brain tumors. INTERVENTION:Parents participated in 3 semistructured focus group interviews. MAIN OUTCOME MEASURES:Themes identified through thematic analysis of interview transcripts. RESULTS:Qualitative analysis identified 3 primary themes. (1) Parents described the dying trajectory of their child as characterized by progressive neurologic deterioration, with the loss of the ability to communicate as a turning point. Parental coping mechanisms included striving to maintain normality and finding spiritual strength through maintaining hope and in the resilience of their child. (2) Parental struggles during this phase included balancing competing responsibilities and speaking with their child about death. (3) Barriers to achieving a home death included suboptimal symptom management, financial and practical hardships, and inadequate community support. A fourth, secondary theme concerned the therapeutic benefits of the interview. CONCLUSION:The neurologic deterioration that characterizes the dying trajectory of children with brain tumors may create significant challenges for health care professionals and the children's parents, supporting the need for increased awareness of the distinct issues in the palliative care of children with brain tumors and for early anticipatory guidance provided for families. 10.1001/archpediatrics.2009.284
    Schooling in survivorship: Understanding caregiver challenges when survivors return to school. Paré-Blagoev E Juliana,Ruble Kathy,Bryant Camille,Jacobson Lisa Psycho-oncology OBJECTIVE:Schooling after treatment can hold challenges for survivors of childhood cancer and caregivers who may need to act as advocates on their behalf. This study seeks to understand caregiver experiences of survivor's school-related challenges. This understudied area is critical given the 85% survivor rate for those diagnosed with childhood cancer and the disproportionate risk of learning difficulties faced by those with brain tumor or who receive therapy that targets the central nervous system. METHODS:Affected caregivers participated in open-ended interviews addressing school experiences during survivorship. Following preliminary analysis using a grounded theory approach, interviewees and other stakeholders from education, medical, and foundation communities participated in focus groups. Member-check activities explored the validity of identified themes and a model derived from interview data describing schooling challenges during survivorship. RESULTS:Caregivers reported schooling-related experiences were often stressful and such stressors recurred during survivors' ongoing education. They reported a lack of appropriate knowledge among themselves, school staff, and clinicians about issues their survivor faced as well as concerns about communication and uncertainties about the processes required to attain appropriate services. These themes of knowledge, communication, and process issues were embedded within family approaches to coping with difficulties as well as the specific types of late effects each survivor faced. CONCLUSIONS:The proposed model and clinical implications provide a foundation for future research and intervention development. Such work is needed to more effectively support survivors and their caregivers with difficulties that arise during schooling following treatment for childhood cancer. 10.1002/pon.5026
    Parents' perception of their children's process of reintegration after childhood cancer treatment. Inhestern Laura,Peikert Mona L,Krauth Konstantin A,Escherich Gabriele,Rutkowski Stefan,Kandels Daniela,Bergelt Corinna PloS one Our objective was to further the understanding of the process of reintegration of childhood cancer patients after treatment and to identify factors influencing that process. Using a qualitative approach, we conducted 49 interviews with parents (n = 29 mothers, n = 20 fathers) from 31 families with a child (<18 years) with leukemia or CNS tumor. Interviews were conducted about 16 to 24 months after the end of the treatment. We used a semi-structured interview guideline and analyzed the data using content analysis. Average age of pediatric cancer patients was 5.5 years at the time of diagnosis; mean time since diagnosis was 3.5 years. Parents reported immediate impact of the disease on their children. Reintegration had gone along with delayed nursery/school enrollment or social challenges. In most cases reintegration was organized with a gradual increase of attendance. Due to exhaustion by obligatory activities, reintegration in leisure time activities was demanding and parents reported a gradual increase of activity level for their children. Parents described several barriers and facilitators influencing the reintegration process into nursery/school and leisure time activities (structural support, social support, health status, intrapersonal aspects). Although many children reintegrate well, the process takes lots of effort from parents and children. Childhood cancer survivors and their families should be supported after the end of intensive treatment to facilitate reintegration. 10.1371/journal.pone.0239967
    What are the experiences of the child with a brain tumour and their parents? Soanes Louise,Hargrave Darren,Smith Lauren,Gibson Faith European journal of oncology nursing : the official journal of European Oncology Nursing Society Brain tumours are one of the most common forms of childhood cancer, affecting approximately 350 children in the UK each year (CancerBackup, 2005). The complex and long treatment for such tumours is often delivered in more than one place of care, as a result children and their families meet a large number of healthcare professionals from a variety of disciplines. The study described in this paper was undertaken to explore the experiences of children/young people (C/YP) with a brain tumour (and their families) being treated at a NHS Trust. A longitudinal, exploratory and descriptive case study was undertaken, using multiple methods of data collection. Three age appropriate data collection techniques were used with children; a modified Mosaic Approach (Clark and Moss, 2001) for children 4-6 years; the 'draw and write technique' with children aged 6-12 year olds, children over 12 years old were interviewed. Semi-structured interviews were also undertaken with parents. Ten children aged 4-13 years, nine mothers and nine fathers took part in the study. Data were analysed using the process described by Ritchie and Spencer (1994). Four themes are identified, receiving and seeking information, finding your way through, how life is affected, who and what help? The process of receiving and seeking information was a challenge for both parents and children. Age appropriate environment and activities helped with adjustment and boredom during long waits and treatment. The need for support from one individual to help families find their way through the complexity of healthcare was a persistent theme. Insights into what children and their parents value from the services offered and areas that they as users find challenging were identified from this study and the findings have implications for future practice and service provision. 10.1016/j.ejon.2009.03.009
    Maternal sensitivity concerning aetiological research into childhood cancer: results of preliminary focus groups. Linet Martha S,Byrne Julianne,Willis Gordon B,Wacholder Sholom,Forman Michele R Paediatric and perinatal epidemiology We and others have postulated that modifications to epidemiological methods and tools could improve understanding of childhood cancer aetiology. We describe features of paediatric cancer that influence study design and data collection strategies, and examine determinants of the reproducibility and accuracy of mothers' responses to questionnaires, which are the primary source of risk factor information. Two focus group sessions with mothers of children with acute lymphoblastic leukaemia (ALL) and two with mothers of children with brain tumours were conducted to explore: the optimal time of day, method of administration, and location for the interview; the availability of alternative data sources; the interval between paediatric cancer diagnosis and epidemiological interview; and other features which may affect maternal interview responses. Mothers of children with both types of cancer preferred being interviewed at home during the evening and were willing to provide complete access to their offsprings' medical records. Emotional, socio-economic and perhaps cultural differences between the groups of mothers were exemplified by the willingness of mothers of children with ALL to participate in epidemiological interviews earlier in their child's treatment course and to provide greater access to maternal reproductive history records compared with mothers of children with brain tumours. Parental concerns about the difficult disease and treatment course of children with brain tumours were a key element in their decision to defer participating in epidemiological interviews for many months after their child's cancer diagnosis. We conclude that the focus group approach can contribute to a broad strategy for improving questionnaires and methods for conducting paediatric cancer epidemiological research. 10.1111/j.1365-3016.2007.00792.x
    The role of rehabilitation measures in reintegration of children with brain tumours or leukaemia and their families after completion of cancer treatment: a study protocol. Peikert Mona Leandra,Inhestern Laura,Bergelt Corinna BMJ open INTRODUCTION:For ill children as well as for their parents and siblings, childhood cancer poses a major challenge. Little is known about the reintegration into daily life of childhood cancer survivors and their families. The aim of this prospective observational study is to further the understanding of the role of rehabilitation measures in the reintegration process of childhood leukaemia or brain tumour survivors and their family members after the end of cancer treatment. METHODS AND ANALYSIS:This prospective observational study consists of three study arms: a quantitative study in cooperation with three German paediatric oncological study registries (study arm 1), a quantitative study in cooperation with a rehabilitation clinic that offers a family-oriented paediatric oncological rehabilitation programme (study arm 2) and a qualitative study at 12-month follow-up including families from the study arms 1 and 2 (study arm 3). In study arm 1, children, parents and siblings are surveyed after treatment (baseline), 4-6 months after baseline measurement and at 12-month follow-up. In study arm 2, data are collected at the beginning and at the end of the rehabilitation measure and at 12-month follow-up. Families are assessed with standardised questionnaires on quality of life, emotional and behavioural symptoms, depression, anxiety, fear of progression, coping and family functioning. Furthermore, self-developed items on rehabilitation aims and reintegration into daily life are used. Where applicable, users and non-users of rehabilitation measures will be compared regarding the outcome parameters. Longitudinal data will be analysed by means of multivariate analysis strategies. Reference values will be used for comparisons if applicable. Qualitative data will be analysed using thematic analysis. ETHICS AND DISSEMINATION:This study has been approved by the medical ethics committee of the Medical Chamber of Hamburg. Data will be published in peer-reviewed journals and presented at conferences. 10.1136/bmjopen-2016-014505
    Parental awareness of sibling adjustment: Perspectives of parents and siblings of children with cancer. Pariseau Emily M,Chevalier Lydia,Muriel Anna C,Long Kristin A Journal of family psychology : JFP : journal of the Division of Family Psychology of the American Psychological Association (Division 43) Childhood cancer is a significant psychosocial stressor, and sibling adjustment ranges from resilience to clinically significant psychopathology. Siblings and parents often describe siblings' psychosocial functioning differently, which may reflect parental unawareness of siblings' adjustment to cancer and increase the risk for negative sibling outcomes. The present study characterizes siblings' and parents' perceptions of parents' awareness of siblings' psychosocial functioning and describes how family functioning influences parental awareness. Parents ( = 13) and siblings ( = 17, ages 8-17) from 13 families completed in-depth qualitative interviews regarding siblings' psychosocial adjustment to cancer. Interviews were coded for dimensions of family functioning based on the McMaster Model and analyzed using applied thematic analysis. Families were stratified based on higher or lower levels of parental awareness (i.e., knowledge of the presence, severity, or content of siblings' cancer-related feelings). Themes related to communication, affective involvement, roles, problem-solving, and affective responsiveness influenced parental awareness. Parental awareness was hindered by siblings' reluctance to communicate their feelings to parents due to the messages they received about cancer (e.g., be positive/helpful), siblings' hesitancy to rely on parents for emotional support, and parents not consistently asking about siblings' emotions. Additionally, parents' cancer-related stress and family disruptions reduced parental focus on siblings and decreased parents' tolerance of siblings' negative emotions. Higher parental awareness was facilitated by closer relationships prediagnosis, consistent communication, and affective problem-solving in response to cancer-related changes. Findings provide a more comprehensive understanding of the family processes underlying parental awareness and inform best practices for sibling assessment and support. (PsycInfo Database Record (c) 2020 APA, all rights reserved). 10.1037/fam0000615
    Attending school after treatment for a brain tumor: Experiences of children and key figures. Vanclooster Stephanie,Bilsen Johan,Peremans Lieve,Van der Werff Ten Bosch Jutte,Laureys Geneviève,Willems Elsie,Genin Sophie,Van Bogaert Patrick,Paquier Philippe,Jansen Anna Journal of health psychology Reintegration into school is a milestone for childhood brain tumor survivors, as well as for their parents, teachers, and healthcare providers. We explored their experiences following the school re-entry by conducting semi-structured interviews. Thematic analysis resulted in four main themes: "school performance," "psychosocial well-being," "support and approach," and "communication and collaboration." Children were pleased to return to school despite confrontation with adverse outcomes. Parents, teachers, and healthcare providers identified current and future concerns and challenges, as well as opportunities for academic and personal development. Their experiences highlight the importance of coordinated and systematic follow-up in close collaboration with healthcare providers. 10.1177/1359105317733534
    Coping strategies used by caregivers of children with newly diagnosed brain tumors. Cutillo Alexandra,Zimmerman Kathrin,Davies Susan,Madan-Swain Avi,Landier Wendy,Arynchyna Anastasia,Rocque Brandon G Journal of neurosurgery. Pediatrics In BriefThe authors interviewed families whose children had recently been hospitalized with a new brain tumor. From these interviews, they identified parents' coping strategies for handling the stress of having a child with a newly diagnosed tumor. Some strategies are considered "adaptive" and help parents deal with the stress better. Others are "maladaptive," leading to worse outcomes. Parents of children with brain tumors are at risk for maladaptive coping. Efforts to teach parents how to cope effectively with the stress of a sick child have the potential to improve outcomes. 10.3171/2018.7.PEDS18296
    Childhood brain cancer and its psychosocial impact on survivors and their parents: A qualitative thematic synthesis. Woodgate Roberta L,Tailor Ketan,Yanofsky Rochelle,Vanan Magimairajan Issai European journal of oncology nursing : the official journal of European Oncology Nursing Society PURPOSE:The multiple late-effects experienced by survivors of childhood brain tumors, are not only a source of great distress for survivors, but also for their parents and siblings. The aim of this review is to systematically identify and synthesize qualitative evidence on how survivors of childhood brain tumors and their parents experience life after surviving childhood brain tumors. METHODS:Based on literature search in seven databases, 10 qualitative studies, published between 2004 and 2014 were included. RESULTS:Surviving a childhood brain tumor was experienced as paradox for survivors and their parents. While parents and survivors celebrated making it through the cancer experience, they nonetheless encountered a world with loss and new challenges. In short, the experience of survival was a bittersweet experience for survivors and their parents. Survivors and their parents experienced change that included living with uncertainty, intensification of the parenting role, a changing social world, a different way of being, and the need for additional help. CONCLUSION:Results from this synthesis reinforce that surviving a childhood brain tumor should be viewed as a point on a continuum of living with a brain tumor. Psychosocial effects of surviving brain cancer affect the entire family unit. A need for psychosocial support is evident, although development of such supports necessitates a more full understanding of challenges face by the child affected, their parents, and siblings. The limitations noted in this synthesis reinforce that more qualitative research is needed in this subject area. 10.1016/j.ejon.2015.07.004
    Children's and Parents' Conceptualization of Quality of Life in Children With Brain Tumors: A Meta-Ethnographic Exploration. Beecham Emma,Langner Richard,Hargrave Darren,Bluebond-Langner Myra Qualitative health research The concept of quality of life (QoL) is used in consultations to plan the care and treatment of children and young people (CYP) with brain tumors (BTs). The way in which CYP, their parents, and their health care professionals (HCP) each understand the term has not been adequately investigated. This study aimed to review the current qualitative research on CYP, parents' and clinicians' concepts of QoL for CYP with BTs using meta-ethnography. Six studies were found, which reflected on the concept of QoL in CYP with BTs; all explored the CYP's perspective and one study also touched upon parents' concept. A conceptual model is presented. Normalcy (a "new normal") was found to be the key element in the concept. This study calls for a conception of QoL, which foregrounds normalcy over the more common health-related quality of life (HRQoL) and the need to understand the concept from all perspectives and accommodate change over time. 10.1177/1049732318786484
    Adding a Parent to the Brain Tumor Team: Evaluating a Peer Support Intervention for Parents of Children With Brain Tumors. Baron Nelson Mary,Riley Kathy,Arellano Kimberly Journal of pediatric oncology nursing : official journal of the Association of Pediatric Oncology Nurses Childhood brain tumors often present profound challenges to patients and families. To address these challenges, the California Chapter of the Pediatric Brain Tumor Foundation provides hospital-based support services to parents of children with brain tumors from a Veteran Parent (VP). This mixed-methods, cross-sectional study was designed to evaluate the effectiveness of the intervention using validated tools to compare parental resilience and impact of illness on the family between parents who met with the VP and those who did not. Two-tailed t tests assessed significant differences in scores on the PedsQL Family Impact module and Connor-Davidson Resilience Scale (CD-RISC-25). Additional qualitative data gleaned from focus groups with stakeholders (health care providers and parents) were analyzed using key constructs of social support theory with Atlas.ti. Although there were no significant differences in overall scores on the PedsQL Family Impact module or CD-RISC-25 between groups, parents in the intervention group scored better on items related to handling difficult decisions and painful feelings. Overarching themes emerged from focus groups around participants' experiences with the program and included informational and emotional support, peer parent relatedness, changed outlook, and empowerment. Results reveal the impact of peer parent support and need for emotional and instrumental support. 10.1177/1043454218762797
    Balancing grief and survival: Experiences of children with brain tumors and their parents. Eaton Russell Ceilidh,Bouffet Eric,Beaton John,Lollis Susan Journal of psychosocial oncology Psychosocial research about childhood brain tumors is limited because of varied abilities and prognoses, with children's voices largely absent. Research has focused on the impacts on families and their reactions; this qualitative study used constructivist grounded theory methods to explore experiences of childhood brain tumors from the perspectives of 12 children and 12 parents using semistructured interviews. Their stories illustrated efforts to maintain positivity and normalcy as they faced grief and uncertainty. The substantive grounded theory of balancing grief and survival offers a lens through which to view children's and parents' complex experiences, struggles, and coping strategies as integrated, dynamic processes. 10.1080/07347332.2016.1212448