Quality of life in children and adolescents after treatment for acute lymphoblastic leukemia according to the NOPHO ALL2008 protocol.

BACKGROUND: The improved outcome of childhood acute lymphoblastic leukemia (ALL) over the last decades has increased the importance of assessing late effects and health-related quality of life (HRQoL), particularly when evaluating and comparing outcomes in clinical trials. This study aimed to assess HRQoL in children treated for ALL according to the NOPHO ALL2008 protocol. PROCEDURE: Children, aged 1 to less than 18 years at diagnosis, alive in first remission, and their parents, were asked to complete PedsQL 4.0 Generic Core Scales (self- and proxy-report) at ≥6 months after end of therapy. Data on socioeconomic factors and parent-reported toxicity were collected through a study-specific questionnaire, and the NOPHO ALL2008 database was used to identify eligible families and add additional disease- and treatment-related data. HRQoL data were collected during 2013-2019 in Sweden, Finland, and Denmark. RESULTS: A total of 299 children were included. The older children (8 years and older) reported similar HRQoL scores compared to Finnish reference data, except lower scores for School Functioning in high-risk patients. Scores from the parent-proxy and self-reports from 5-7-year olds were notably lower than reference. Parent-reported toxicity was associated with lower total and physical HRQoL scores in adjusted models for younger as well as older children in the self-report and parent-proxy versions, and also with lower psychosocial score in the parent-proxy. CONCLUSIONS: Self-reported HRQoL was similar to reference population. The most important determinant for HRQoL after end of ALL treatment was parent-reported toxicity during treatment. Thus, minimizing complications is an obvious focus for future treatment protocols.

Preparedness for caregiving and preparedness for death: Associations and modifiable thereafter factors among family caregivers of patients with advanced cancer in specialized home care.

The purpose of this study was to (1) explore associations between preparedness for caregiving and preparedness for death among family caregivers of patients with advanced cancer and (2) explore modifiable preparedness factors, such as communication and support. Data was derived from a baseline questionnaire collected in specialized home care. The questionnaire included socio-demographics, the Preparedness for Caregiving Scale, and single items addressing preparedness for death, received support and communication about incurable illness. Data was analyzed using descriptive statistics and Spearman correlations. Altogether 39 family caregivers participated. A significant association was found between preparedness for caregiving and preparedness for death. Received support and communication about the illness was associated with higher levels of preparedness for caregiving and death. This study contributes to evidence on the association between preparedness for caregiving and death, but also that communication and support employed by healthcare professionals could improve family caregiver preparedness and wellbeing.

Experiences of being a severely ill parent of dependent children receiving care at home: Hopes and challenges.

OBJECTIVES: Multiple studies have focused on severely ill patients in the role as parents of dependent children, yet few have explored the thoughts and feelings within this group during palliative home care. METHODS: This qualitative study derives from a pilot intervention study, the Family Talk Intervention (FTI), in specialized palliative home care. The FTI is a support program with the main goal to increase family communication about illness-related topics. The study is based on field notes from 104 sessions with 20 parents taken by an interventionist during intervention delivery. The field notes were analyzed using the principles of qualitative content analysis. RESULTS: The field notes revealed several challenging situations for parents with severe illness. A major issue was how to find ways to talk to their children about their illness and prognosis. The parents expressed guilt for being unable to fulfill their roles as parents and partners. Existing family conflicts had escalated with the illness, according to some parents. Despite being affected by illness, parents tried to have hope, if only for small things - such as a period of ordinary family life. SIGNIFICANCE OF RESULTS: Severely ill parents in specialized palliative home care seek support regarding how to communicate and stay connected to their roles in the family, which is a struggle when a parent is cared for at home, while it in contrast may promote normality and hope. Communication with children is vital and needs to be brought to the attention of health-care professionals. A family-centered focus, involving both parents and children, should be embraced.

Parental experiences of the informed consent process in randomized clinical trials-A Nordic study.

BACKGROUND: Randomized clinical trials (RCTs) are an essential part of improving acute lymphoblastic leukemia (ALL) treatment. This population-based questionnaire study investigated parents' experiences of the informed consent process in the RCTs within the Nordic NOPHO (Nordic Society of Paediatric Haematology and Oncology) ALL2008 trial. PROCEDURE: Parents in Sweden, Denmark, and Finland whose child was alive and in first remission after end of therapy and who were asked to participate in any RCT in the ALL2008 protocol, were asked to complete 15 questions/items regarding their experience of the RCT consent process. RESULTS: A total of 483 parents of 279 children met the inclusion criteria and answered the study questionnaire. Most (91%) agreed/strongly agreed to having received sufficient information to make a well-informed decision, felt confidence in the study design (86%), and thought that the process was satisfactory (86%). Those who did not consent reported a generally more negative experience of the process. More than a third of all parents and over half of parents who had refused participation felt that it was burdensome to decide. Most parents (66%) in general, and one-third of those with children 8 years or older, reported that their child was not involved in the process. CONCLUSIONS: Parents were in general satisfied with the informed consent process, although many parents, particularly those who refused participation, reported it as burdensome to make the decision concerning RCT. Fewer than expected of the school-aged children were involved in the decision process, which calls for attention on how children are included in the consent procedure in clinical trials.

Quality of life in mothers and fathers of children treated for acute lymphoblastic leukaemia in Sweden, Finland and Denmark.

Acute lymphoblastic leukaemia (ALL) has a high survival rate, but treatment is lengthy with risk of severe side-effects, which may also impact parents' health-related quality of life (HRQOL). We present data on 526 parents of 310 children treated for ALL according to the NOPHO ALL2008-protocol, in Sweden, Finland and Denmark. Parents were asked to complete the 36-Item Short Form Survey (SF-36) at least 6 months after end of treatment and data were compared with Norwegian reference data. Parental background factors were collected via a study-specific questionnaire. Participating parents scored significantly lower than the reference population on both physical and mental summary indexes, but only surpassed a minimal clinically important difference for the mental summary index (Mental Component Summary [MCS]). Mothers scored lower than fathers in the MCS and stopped working and took care of the affected child more often than the fathers. Higher mental HRQOL was associated with male gender and living in Finland or Denmark (compared to Sweden). Correlations within spouses in physical and mental scores were weak to moderate. In conclusion, ALL negatively affects parental HRQOL, especially the mental domains, even after treatment. Findings suggest that mothers are more affected than fathers and may require extra support.

Communication about diagnosis and prognosis-A population-based survey among bereaved parents in pediatric oncology.

INTRODUCTION: When a child is diagnosed with cancer, the whole family is affected, and parents struggle to grasp challenging information regarding diagnosis and prognosis. Most parents and children want honest communication and openness, yet this remains a complex and challenging task for healthcare professionals. OBJECTIVES: To describe bereaved mothers' and fathers' reports of communication of their child's cancer diagnosis and when the illness became incurable. METHODS: Data from a Swedish population-based survey conducted in 2016, including 135 mothers and 97 fathers who had lost a child to cancer 1-5 years earlier, were studied regarding the parents' reports of communication about their child's illness. RESULTS: A vast majority of parents wants information when their child's illness becomes incurable, and this need is generally met. However, fathers to a lesser extent than mothers, reported that they were informed about it. According to parents' reports 87% of children received diagnostic information and 44% of the children received prognostic information. CONCLUSION: A vast majority of both mothers and fathers would like to know when their child's illness becomes incurable, yet it remains unknown to what extent they want their child to be informed.

Family bonding as a result of the family talk intervention in pediatric oncology: Siblings' experiences.

BACKGROUND: Childhood cancer affects the whole family. Illness-related stressors increase the risk for poor family communication, affecting the family's well-being. Siblings describe worry and poor illness-related information. As there are few evaluated family interventions in pediatric oncology, this study aimed to pilot-test a family-centered intervention, the family talk intervention (FTI), in pediatric oncology. This paper examined the feasibility in terms of acceptability from the siblings' perspectives. METHODS: This study derives from a pilot study of 26 families including 37 siblings recruited from one pediatric oncology center. Standard FTI comprises six meetings with the family, led by two interventionists, with the main goal to facilitate family communication on illness-related topics (e.g., prognosis, the invisibility of healthy siblings). This paper focuses on interview and survey data from siblings after participation in FTI. The study is registered at ClinicalTrials.gov (Identifier NCT03650530). RESULTS: The siblings, aged 6 to 24 years, stated that the interventionists made the meetings feel like a safe environment and that it was a relief for the siblings to talk. They reported that FTI helped the family talk openly about illness-related topics, which they felt led to increased family understanding and improved relationships. The siblings described that FTI also helped them with their school situation. The majority of the siblings reported that FTI came at the right time and involved an appropriate number of meetings. CONCLUSION: According to the siblings, the timing, content, and structure of FTI were appropriate. FTI showed benefits for both the siblings and each family as a whole.

Referral of patients with cancer to palliative care: Attitudes, practices and work-related experiences among Swedish physicians.

OBJECTIVE: This study aimed to explore the attitudes, practices and work-related experiences among Swedish physicians regarding the referral process, integration and transition between oncology care and palliative care (PC). METHODS: A cross-sectional online survey was performed with a study-specific questionnaire in 2016-2017 in south-eastern Sweden. Physicians working with cancer patients within surgical specialties, medical specialties and paediatric oncology participated. RESULTS: The vast majority of the 130 participating physicians (99.2%) stated that PC was beneficial for the patient and were positive about early integration of PC (65.5%). Still, only 27.6% of the participants introduced PC at an early stage of non-curable disease. However, paediatric oncologists had a very early introduction of PC in comparison with medical specialties (p = 0.004). Almost 90% of the study population said they wanted to know that the patient had been taken care of by another care facility. CONCLUSIONS: Despite the physicians' positive attitude towards early integration and referral to PC, they often acted late in the disease trajectory. This late approach can reduce the patient's opportunity of improving quality of life during severe circumstances. There is a need for in-depth knowledge of the physicians' challenges in order to bridge the gap between intentions and actions.

Is the family talk intervention feasible in paediatric oncology? An evaluation of a family-based psychosocial intervention.

AIM: To examine the feasibility of a family-based psychosocial intervention, Family Talk Intervention (FTI), in paediatric oncology in terms of recruitment, retention, delivery, response rate and acceptability from the parents' perspective. METHODS: This study involved 26 families affected by childhood cancer. FTI encompasses six family meetings, with the main goal being to facilitate family communication about illness-related subjects. Meeting 5 is preferably moderated by the parents. Extra meetings (7-11) can be held if needed. This paper includes observational data and surveys, and interviews with parents. RESULTS: All families who started FTI underwent the full intervention and the survey response rate varied between 100% and 71% over time. Extra meetings were held with most families. The parents stated that FTI filled a gap of support to the family as a unit and described FTI as a map they could follow. Since FTI was conducted at home, this created a safe environment, which contributed to their participation. The parents valued the children's perspectives being considered, but some felt uncomfortable moderating 'the family talk' (meeting 5). CONCLUSION: Family talk intervention was valued by parents, but it would benefit from being slightly modified before a large trial can be developed.

Expert survey on coverage and characteristics of pediatric palliative care in Europe - a focus on home care.

BACKGROUND: For children with life-limiting conditions home care is a key component of pediatric palliative care. However, poor information is available on service coverage and in particular on country-specific pediatric palliative home care characteristics. The aim of the study was therefore to describe the association between pediatric palliative care coverage and national activities and obtain detailed information on the pediatric palliative home care structure in different European countries. METHODS: Online survey with in-country experts from N = 33 European countries. RESULTS: Pediatric palliative home care (65.6%) represented the most pediatric palliative care units (15.6%) and the least common services. National documents constituted the most widespread national pediatric palliative care activity (59.4%) and were associated with available services. Pediatric palliative home care could be mostly accessed as a service free of charge to families (95.2%) from the time of a child's diagnosis (85.7%). In most countries, oncological and non-oncological patients were cared for in pediatric palliative home care. Only a minority of home care teams covered home-ventilated children. Pediatric palliative home care usually comprised medical care (81.0%), care coordination (71.4%), nursing care (75.0%) and social support (57.1%). Most countries had at least two professional groups working in home care teams (81.0%), mostly physicians and nurses. In many countries, pediatric palliative home care was not available in all regions and did not offer a 24 h-outreach service. CONCLUSIONS: Pediatric palliative care provision in Europe is heterogeneous. Further work on country-specific structures is needed.

Outcomes of the grief and communication family support intervention on parent and child psychological health and communication.

Parents and children risk developing psychological health problems following the death of a partner/parent and may need professional support. This study used the reliable change criterion and clinically significant change to examine the outcomes of the Grief and Communication Family Support Intervention, comprising three family meetings with a family therapist, among 10 parents and 14 children, using pre-post outcome scores. The results provided preliminary evidence that the Grief and Communication Family Support Intervention may improve self-esteem and reduce anxiety in some parents and may improve communication and reduce internalizing and externalizing problems in some children.

Children's experiences of the family talk intervention when a parent is cared for in palliative home care-A feasibility study.

The aim of this study was to explore the feasibility of the family talk intervention (FTI) and its acceptability to dependent children when a parent is cared for in palliative home care. The main goal of FTI is to increase family communication about the illness. The present paper derives from a pilot study and is based on 25 children's reports, involving both questionnaires and interviews, after participation. A majority of the children appreciated the structure and content of FTI. They felt seen, heard, and acknowledged by the interventionists and recommended FTI to other children in similar situations.

The grief and communication family support intervention: Intervention fidelity, participant experiences, and potential outcomes.

This study aimed to evaluate intervention fidelity and explore participants' experiences and potential outcomes after participating in the intervention. Using a pretest post-test pilot study, 10 parentally bereaved families completed the three-session manual-based intervention with a family therapist. Sessions were audio-recorded. Therapists completed an adherence checklist to assess fidelity. Assessments via questionnaires and interviews occurred at one month post-intervention and via questionnaires at baseline and six months post-intervention. This study showed a high level of fidelity. The study shows preliminary evidence of the intervention's capacity to improve communication and relationships in parentally bereaved families.

Sources of social support and its importance for cancer-bereaved spouses and their minor children: A cross-sectional study.

The aim of this study was to evaluate the sources from which bereaved families with minor children reported receiving social support after the death of a parent/partner and which sources they perceived as important. Using an online platform, 23 adolescents, 42 parents, and 27 parent proxies for children aged 4-11 years, completed questionnaires. Family and friends were valued as the most important sources of social support, while social support from societal institutions, such as health care and school, was considered less important, and insufficient.

Talking about death when a parent with dependent children dies of cancer: A pilot study of the Family Talk Intervention in palliative care.

This study focused on families with dependent children who participated in the Family Talk Intervention (FTI) and lost a parent during the intervention or directly thereafter. The aim was to explore how they perceived information and communication about the imminent death during the illness trajectory and after the loss. Seven families from palliative homecare settings in Sweden participated. This study suggests that it is important to support family communication when a parent is dying, since communication in this situation is unlike everyday family communication, as they enter a complex and existentially unfamiliar area, hard to initiate on their own.

Breaking the silence about illness and death: Potential effects of a pilot study of the family talk intervention when a parent with dependent children receives specialized palliative home care.

OBJECTIVE: The entire family is affected when a parent is severely ill. Parents often need and appreciate professional support when talking to children about illness and death. The family talk intervention (FTI) is family-centered and intends to promote communication about the illness and its consequences, support parenting to enhance family coping and help family members share experiences with each other to create a shared family history. This study aimed to explore potential effects of FTI in specialized palliative home care, as reported by parents. METHOD: This pre-post test intervention pilot was conducted in specialized palliative home care. A convergent mixed-method design was used to analyze interview and questionnaire data. Twenty families with dependent children were recruited from two specialized palliative home care units in Stockholm, Sweden. RESULTS: Parents reported that family communication improved after participation in FTI as family members learned communication strategies that facilitated open sharing of thoughts and feelings. Increased open communication helped family members gain a better understanding of each other's perspectives. Parents reported that relationships with their partner and children had improved as they now shared several strategies for maintaining family relationships. Parents were also less worried following participation in FTI. The ill parents stated that they gained a sense of security and were less worried about the future. SIGNIFICANCE OF RESULTS: This study adds to the evidence that FTI may be a useful intervention for families with dependent children and an ill parent in a palliative care setting. This trial is registered at ClinicalTrials.gov Identifier NCT03119545.

Web-based support for spouses of patients with life-threatening illness cared for in specialized home care - A feasibility study.

OBJECTIVES: Psychoeducational interventions for family caregivers have shown to be effective but not possible for all caregivers to attend; thus, web-based interventions may be a complement. This study aimed to evaluate feasibility of a web-based intervention, "narstaende.se," from the perspective of spouses of patients receiving specialized home care. METHODS: A website was developed, containing videos with conversations between health-care professionals and family caregivers (actors), informative texts, links to further information, and a chat forum. The aim of the website is to provide support and promote preparedness for caregiving and death, and the content is theoretically and empirically grounded. The study had a descriptive cross-sectional design. Altogether, 26 spouses answered a questionnaire, before accessing the website, and 4 weeks after this, 12 spouses were interviewed. Descriptive statistics and qualitative content analysis were used. RESULTS: Spouses experienced the website as being easy to use, welcoming, and with relevant content. Participating spouses would recommend "narstaende.se" to others in similar situations, and the majority found the website introduced timely. Videos seemed easily accessible and were most used, contributing to a feeling of recognition and sharing the situation. The online format was perceived as flexible, but still not all spouses visited the website, stating the desire for support in real life. SIGNIFICANCE OF RESULTS: A web-based intervention can be feasible for spouses in specialized home care; however, the digital format is not suitable for everyone. Further research is needed to determine the website's potential to provide support and increase preparedness for family caregivers in general.

Children's Views Are Not Taken Into Account in Accordance With Article 12 of the United Nations Convention on the Rights of the Child in the Family Talk Intervention When a Parent Is Cared for in Palliative Care.

Having a parent with a life-threatening illness is challenging throughout the illness trajectory, and for some also in bereavement. Article 12 of the United Nations Convention on the Rights of the Child states a child's right to express their opinion and have it respected in processes that affect them. The aims of this paper were to explore the child's active participation in a family support programme, the Family Talk Intervention, in accordance with Article 12, when having a parent cared for in palliative care. Twenty families with 50 children participated. Fieldnotes were taken during the programme and later analysed with interpretive descriptions. The study shows that all children were listened to, but only a quarter reached the minimum point required in Article 12, where their views were taken into account. The Family Talk Intervention in palliative care would benefit from implementing a child-centred approach in order for all children to be active participants.

End-of-Life-Related Factors Associated with Posttraumatic Stress and Prolonged Grief in Parentally Bereaved Adolescents.

Posttraumatic stress disorder (PTSD) and prolonged grief disorder (PGD) are well-documented in parentally bereaved adolescents. Whether or not the parent's death is perceived as traumatic may be influenced by several end-of-life-related factors. This study aimed to examine the associations between end-of-life-related factors, symptoms of posttraumatic stress disorder (PTSD), symptoms of prolonged grief disorder and PGD, and the association between PTSD and PGD. Mann-Whitney U tests and Spearman correlation were used to analyze the relationships between end-of-life-related factors, PTSD, and PGD. Regretting one's decision to be present or not present at the time of death resulted in a significant difference in self-reported scores for PTSD, but not PGD.

Psychological symptoms in widowed parents with minor children, 2-4 years after the loss of a partner to cancer.

OBJECTIVES: This study aimed to explore psychological symptoms in widowed parents with minor children, 2-4 years after the death of their partner. A second aim was to examine the associations between psychological symptoms and nonmodifiable and modifiable illness and healthcare-related factors. METHODS: A cross-sectional survey study on widowed parents with minor children after the loss of a partner to cancer. In total, 42 parents completed an online questionnaire including instruments for assessing symptoms of anxiety, depression, grief rumination, prolonged grief, and posttraumatic stress. Descriptive statistics, Spearman's correlation coefficients, Mann-Whitney U tests and Kruskal-Wallis tests were used to analyze differences in symptomology based on modifiable and nonmodifiable factors. RESULTS: Parents reported moderate-severe symptoms of anxiety, posttraumatic stress, and depression. Reporting having received more information during the partner's illness regarding how the illness could affect the partner's somatic and psychological health and where to turn for support were associated with fewer psychological symptoms. CONCLUSIONS: A substantial proportion of widowed parents with minor children reported a moderate-severe symptom burden regarding depression, anxiety, and posttraumatic stress, and less so with prolonged grief symptoms. This study also highlighted the value of receiving information from healthcare personnel regarding the somatic and psychological effects of a partner's illness and where widowed parents can turn for support.