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Background. Cancer stage at diagnosis is the most important prognostic factor for lung cancer (LC), but most patients are diagnosed with advanced disease with many and intense symptoms. This study explores relationships between LC patients' first symptoms, symptoms triggering health care system (HCS) contact, demographic/clinical characteristics, and time spans in the care trajectory from first symptom(s) to treatment start. Materials and Methods. Medical records were examined from all 314 patients diagnosed with primary LC in 2003 at a Department of Respiratory Medicine, in Stockholm Sweden. Descriptive analysis was used to examine symptoms and time spans in the care trajectory. Cox regression analysis was conducted to explore the influence of symptoms and demographic/clinical characteristics on the time spans. Results. Tumor-specific symptoms led to HCS visits to a greater extent than did systemic symptoms, despite reports of weight loss, fatigue and appetite loss as common first symptoms. Minor differences between women and men were found regarding specific symptoms. The study confirms that the time spans from first symptoms reported to treatment start are extensive, exceeding Swedish national recommendations. A lump/resistance, neurological symptoms, appetite loss, hemoptysis and non-thoracic related pain were associated with significantly shorter time spans in the care trajectory. People >74 years old risked longer time span from first HCS visit to treatment start. Conclusion. This study indicates a need for a more efficient LC care trajectory. Elderly patients could be particularly vulnerable for longer time spans. [ABSTRACT FROM AUTHOR]

The purpose of this study was to develop a rehabilitation program wherein the stroke team, patient and family act as partners in the rehabilitation process initially at hospital and subsequently on discharge for 4 weeks in the stroke patient's home. The study attempted to address the stroke patient's functional ability and life satisfaction from a holistic viewpoint. A quasi-experimental design was used. Thirty-two stroke patients participated in the intervention group and nine in the control group. The intervention group improved in functional ability after 4 weeks at home. They also participated in activities and were generally more active than the control group. Ninety percent of the families in the intervention group experienced high life satisfaction levels after the training period. However this satisfaction decreased after 6 months, and one year post-stroke, the patient and family's life satisfaction levels increased once more. It is likely that being given the opportunity to make one's own decisions, to be more active and motivated led to improvements in patients' daily life functions as they were able to carry out their preferred activities in the comfort of their own home. The program shortened the admission time for the intervention group by one-third. [ABSTRACT FROM AUTHOR]

Background: The psychosocial needs of families in which a parent is affected by life-threatening illness and has dependent children are extensive. However, few family-based interventions have been scientifically evaluated and even fewer have been evaluated long term. Therefore, the specific objectives of this study were to describe the parents' perceptions of the timing and length of FTI in relation to the illness trajectory, to explore what activities learnt by the FTI still were practiced in the long-term and what content of FTI was perceived as most valuable to cope in the long-term., Methods: This qualitative study involved a follow-up with nine parents (ill parents, n = 3, coparents, n = 6) 4 to 5 years after participating in FTI, where one parent was cared for in specialised palliative homecare. FTI is a psychosocial family-based intervention that consists of 6-11 manual-based meetings with the families led by an educated interventionist. FTI focuses on facilitating family communication about illness-related subjects, supporting parenting, and making the children's needs visible. The data collection consisted of interviews and was analysed according to the phenomenographic method, focused on variations in perceptions., Results: The parents perceived FTI as a way to alleviate feelings of loneliness, and some families were still using the obtained communication tools at the time of the interview. They also perceived that FTI contributed to the children being more open about their own feelings and thoughts. However, the parents wanted extended support after FTI ended based on their individual needs, for example, during and after bereavement, deteriorated health or occasional challenges faced by children in crisis. The parents perceived the peer support gained in conjunction with FTI as important social and emotional support both during and after the intervention. The interventionists were perceived as professional persons who promoted open and honest communication during FTI., Conclusion: FTI is found to promote family communication both in a short- and long-term perspectives according to parents. They also found FTI useful in reducing their feelings of loneliness. Support over a longer period of time is desired and extra FTI meetings may strengthen the family as a whole in parallel with additional support for parents and children during the illness trajectory and in bereavement. They received support in dealing with strong and difficult emotions and learned conversational techniques that they still used at the time of the interview, indicating that the lessons learnt was integrated and valuable many years after the last FTI meeting., Competing Interests: Declarations. Ethics approval and consent to participate: The Regional Ethical Review Board in Stockholm and the Swedish Ethical Review Authority (Dnr. 2017/7–31/1 and 2021–05295) approved the study. The study took place in accordance with ethical guidelines for nursing research in the Nordic countries [62] and the Declaration of Helsinki—Ethical Principles for Medical Research [63]. This means that the participants were informed in writing and verbally about the study, participation was voluntary, and they had the opportunity to withdraw from the study at any time and that data was handled confidentially. All participants provided written informed consent. The participants were also given the opportunity to see a counsellor after the interview if the interview provoked negative reactions and emotions, but no one expressed a need for this. Consent for publication: Not applicable. Competing interests: The authors declare no competing interests., (© 2024. The Author(s).)

Background: The shift of treatment of paediatric cancer patients to include more care at home puts a lot of pressure on health care professionals (HCPs) to prepare and train parents on safe and correct drug handling at home. Parents must take in and understand the information presented to them while coping with their own fear related to their child's cancer diagnosis. In Sweden, parents are expected to handle and manipulate oral anticancer drugs (OADs) in the home setting. There is however a lack of a standardized method to inform and educate parents on how to handle OADs in a correct way at home., Aim: To describe parents' experiences of handling OADs at home after participating in an educational intervention., Method: Educational intervention in the present study aimed to improve parents' knowledge in key concepts that is, handling OADs at home by using information presented in different forms. Fifteen parents to 12 children with cancer were recruited from a paediatric oncology ward in Sweden to participate in an interview. The interviews were transcribed verbatim and subjected to qualitative content analysis., Results: Parents' experiences are presented in categories: Relieved stress, Awareness of own exposure, Facilitated my everyday life, Parents need continued support individually. The educational intervention resulted in both positive and negative feelings, increased awareness of drug exposure and correct drug handling at home. Practical training and information presented in different ways facilitated the process of drug handling. To handle the drug correctly at home parents requested to be trained and informed in the beginning of their child's oral drug treatment. In addition, parents requested to be individually approached by HCP to get answers to questions and concerns., Conclusions: This educational intervention study shows promising results for the method used by HCPs to inform and educate parents on complicated topics such as handling OADs at home., (© 2024 The Author(s). Journal of Evaluation in Clinical Practice published by John Wiley & Sons Ltd.)

Hospital social workers (HSW) play an important role in health care, providing psychosocial support to families affected by severe illness, and having palliative care needs involving dependent children. However, there are few evidence-based family interventions for HSWs to apply when supporting these families. The Family Talk intervention (FTI), a psychosocial family-based intervention, was therefore evaluated in an effectiveness-implementation study. Within the study, HSWs were educated and trained in the use of FTI in clinical practice. This study examined HSWs' experiences of barriers and facilitating factors during their initial use of FTI in clinical practice. Altogether, 10 semi-structured focus groups were held with HSWs (n = 38) employed in cancer care and specialized palliative home care for adults, pediatric hospital care, and a children's hospice. Data were analyzed using content analysis. HSWs considered FTI to be a suitable psychosocial intervention for families affected by severe illness with dependent children. However, the way in which the care was organized acted either as a barrier or facilitator to the use of FTI, such as the HSWs' integration in the team and their possibility to organize their own work. The HSWs' work environment also impacted the use of FTI, where time and support from managers was seen as a significant facilitating factor, but which varied between the healthcare contexts. In conclusion, HSWs believed that FTI was a suitable family intervention for families involving dependent children where one family member had a severe illness. For successful initial implementation, strategies should be multi-functional, targeting the care organization and the work environment.

Background: To strengthen palliative care for children in the Nordic countries, an updated status of current needs, resources, clinical services, education, and research is necessary to align and consolidate future research. A Nordic research collaboration initiative for children with palliative care needs was assembled in 2023. Building on this initiative, this paper presents an overview of pediatric palliative care (PPC) in the Nordic countries' (a) population characteristics, (b) care models and setting of care, (c) education and training, and (d) research., Methods: The Nordic initiative researchers collaboratively gathered and assessed available data on the characteristics of PPC within Denmark, Finland, Greenland, Iceland, Norway, the Faroe Islands, Sweden, and Åland. Data were compiled in a matrix with population characteristics, models- and setting of care, education and training, and areas of research in a Nordic context. The findings are narratively and descriptively presented, providing an overview of Nordic PPC., Results: In total, the Nordic child population comprises around six million children (0-19 years), of which about 41.200 are estimated to be living with a life-limiting and/or life-threatening condition. Healthcare services are provided through various care models, ranging from specialized care to homecare settings. Overall, there remain few opportunities for education and training with some exceptions. Also, Nordic research within PPC has been shown to be a growing field although much remains to be done., Conclusion: This overview is the first outline of the current PPC in Nordic countries. Although some differences remain important to acknowledge, overall, the strengths and challenges faced within PPC in the Nordic countries are comparable and call for joint action to increase evidence, services, and education to better serve the children, families, and healthcare personnel within PPC. Despite the varying structural premises for PPC, research endeavors aiming to provide evidence in this field seem increasing, timely and relevant for the Nordic countries, as well as the international context., (© 2024. The Author(s).)

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.

Background: Childhood cancer impacts the family system and has psychosocial consequences for all family members. For the parents, the ill child, and the siblings to be able to adjust to this challenging situation, the whole family needs access to psychosocial support. However, only a few such family interventions in pediatric oncology have been evaluated. The aim of this study was to explore the potential effects of a family-centered intervention, the Family Talk Intervention (FTI), in pediatric oncology from the parents' perspectives., Methods: A concurrent mixed methods design was used for this study. Data were derived from a pilot study of 26 families recruited from one pediatric oncology center in Sweden. This study focused on questionnaire and interview data from 52 parents., Results: After participation in FTI, the parents felt more satisfied with the conversations within the family about the illness. FTI also contributed to strengthened family togetherness, including more open communication and improved family relations, as described by the parents. Parents further expressed that they felt more empowered in their parenting role following FTI., Conclusions: The findings regarding FTI's ability to improve family communication and family relations, thus strengthening family togetherness in families with childhood cancer, are promising. This provides motivation for a large-scale study of FTIs in pediatric oncology.

Background: Despite the challenges that caring for a child with cancer brings for parents, little knowledge is available concerning the effects on the parents' couple relationship. Furthermore, few interventions have been designed to support parents in their couple relationship. The aim of this paper was, therefore, to explore parents' experiences of their couple relationship while having a dependent child with cancer and the support they received from a family-based intervention, the Family Talk Intervention (FTI)., Methods: Data for this paper were taken from semi-structured interviews performed in a pilot study of the FTI in the context of pediatric oncology. In total, 22 couples were interviewed after participating in the FTI. The interviews were transcribed and analyzed using qualitative content analysis., Results: Parents described how maintaining a couple relationship while living with childhood cancer could be very challenging and was not given the highest priority. The FTI was considered a way of providing important support to the couple and a chance for them to sit down together and listen to each other's perspectives on the situation. Parents described that the FTI had helped them gain an increased mutual understanding, sometimes also helping them to realize that they needed more extensive professional support in their relationship., Conclusions: Living with childhood cancer and upholding a healthy couple relationship is challenging for parents. The FTI has the potential to support couples, mainly by providing opportunities for parents to communicate with each other. However, some couples may be in need of a tailored clinical intervention., (© 2023 The Authors. Pediatric Blood & Cancer published by Wiley Periodicals LLC.)

The objective of this study was to estimate change over time in health-related quality of life (HRQoL) of children with spinal muscular atrophy (SMA) in Sweden. Children with SMA were identified via the National Patient Register by the National Board of Health and Welfare in Sweden. Patient HRQoL was caregiver proxy-assessed using the Pediatric Quality of Life Inventory 4.0 Generic Core Scales at baseline, as well as at 6, 12, and 18 months of follow-up. Results were stratified by SMA type. Mothers and fathers to 27 children with SMA (mean patient age: 9.17 years; 59% female) participated in the study. All patients received disease-modifying therapy. At baseline, across SMA types, the mean total score was estimated at between 52.68 and 59.19, Physical Functioning score at between 26.39 and 40.34, Emotional Functioning score at between 66.82 and 68.57, Social Functioning score at between 55.00 and 70.45, and School Functioning score at between 70.45 and 78.33. The mean annual total score change was estimated at -2.03 for SMA type I, 4.11 for SMA type II, and 1.12 for SMA type III. In conclusion, we show that SMA has a detrimental impact on HRQoL that extends above and beyond somatic disability. Children with SMA type II experienced a dramatic increase in HRQoL over time, predominantly related to improvement in physical and social functioning. Our data helps quantify the patient burden of disease and adds to the rapidly expanding body of evidence of the effectiveness of recently approved disease-modifying therapies for SMA., Competing Interests: Declaration of competing interest Thomas Sejersen reports receiving honoraria for lectures or consultancy from Biogen, Novartis, PTC Therapeutics, Sarepta Therapeutics, Roche, Hansa Biopharma, and Sanofi Genzyme, outside of the submitted work. The other authors have no conflicts of interest to declare., (© 2023 Published by Elsevier Ltd on behalf of European Paediatric Neurology Society.)

Aim: The aim of this study was to describe the experiences of parents handling oral anticancer drugs in a home setting., Methods: Parents of children with cancer were recruited from a paediatric oncology ward in Sweden to participate in an interview. The interviews were transcribed verbatim and subjected to qualitative content analysis., Results: We found the following categories and subcategories: parents' views on the provided information-lack of, too little or contradictory information, and parents' preferences for information delivery; safety over time; correct drug dose; and drug administration. As time passed, most parents adapted to their child's illness, felt safer and found it easier to take in and process any given information. Parents preferred information in different formats (written, movie clips and orally) and in their mother tongue. Many parents were aware of the importance of giving an accurate dose to their child and described the process of drug administration as overwhelming., Conclusion: Parents need to be provided with accurate, timely, nonconflicting and repeated information-in different forms and in their mother tongue-on how to handle oral anticancer drugs at home., (© 2022 The Authors. Journal of Evaluation in Clinical Practice published by John Wiley & Sons Ltd.)

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., (© 2022 The Authors. Psycho-Oncology published by John Wiley & Sons Ltd.)

Background: The aim was to investigate psychotropic medication use in parents of survivors of adolescent cancer from the acute post-diagnostic phase and up to 2 years following the cancer diagnosis., Methods: This study had a nationwide register-based cohort design comparing psychotropic medication use in parents of adolescent survivors of cancer (n = 2323) to use in parents of cancer-free controls (n = 20,868). Cox proportional hazards models, adjusted for cancer diagnostic group, parents' age, country of birth, education level, marital status and previous mental health problems estimated the risk of use from the time of the cancer diagnosis up to 2 years later., Results: During the first 6 months after the cancer diagnosis, both mothers and fathers had an increased risk of use of anxiolytics (mothers: HR adj 1.71, 95% CI 1.30-2.25; fathers: HR adj 1.57, 95% CI 1.10-2.45) and hypnotics/sedatives (mothers: HR adj 1.53, 95% CI 1.23-1.90; fathers: HR adj 1.32, 95% CI 1.00-1.75). For fathers with a prescription of psychotropic medication during the first 6 months after the cancer diagnosis, the risk remained increased after 6 months (HR adj 1.66, 95% CI 1.04-2.65). From 6 months after the cancer diagnosis, only the risk of antidepressant use among mothers was increased (HR adj 1.38, 95% CI 1.08-1.76). Risk factors included being divorced/widowed, born in a non-Nordic country, older age and having had previous mental health problems., Conclusion: Our study results show that during the immediate post-diagnostic phase, mothers and fathers of survivors of adolescent cancer are at increased risk of use of anxiolytics and sedatives, whereas only mothers are at increased risk of antidepressant use from 6 months until 2 years after the diagnosis. Further, previous mental health problems were shown to be the strongest risk factor for psychotropic medication use in both mothers and fathers, pointing to the particular vulnerability of these parents., (© 2022 The Authors. Cancer Medicine published by John Wiley & Sons Ltd.)

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., (© 2022. The Author(s).)

Background: Living with a parent facing life-threatening illness and losing a mom or dad at a young age can cause both short- and long-term health problems. Without satisfactory support, adolescents' and young people are at risk of developing low self-esteem, behavioural difficulties (e.g., anger and aggression), long-term illness or premature death caused by severe mental illness, substance abuse, self-harm and suicide attempts. The aim of this study was to explore adolescents' and young people's needs and preferences for support as they live with a parent with life-threatening cancer., Methods: Qualitative interviews were conducted with 10 respondents (17-24 years) in Norway and Sweden. Data were analysed through grounded theory according to Charmaz., Results: Adolescents' and young peoples' needs and preferences for support were described through the main category 'To feel safe and secure and to be prepared' and further broken down into five subcategories 'Relationships in the immediate family-balancing support and protection'; 'The social network-support and normalcy in a carefully selected group'; 'Maintaining everyday life-challenges in school and working life'; 'The right support at the right time-competence, trust and continuity in meeting health care professionals'; and 'Support outside the home-an opportunity for full transparency'., Conclusion: Adolescents' and young peoples' preferences for support when living with a parent facing life-threatening illness are individual and unique, but they share a common need to feel safe and secure and to be prepared. Adolescents and young people express that they primarily want support from parents and friends, but they also want support from health care professionals, especially in situations when the ill parent becomes worse. Therefore, it is of the utmost importance for health care professionals to identify the most vulnerable adolescents and young people by mapping their social networks and paying extra attention to their needs for support when there is deterioration in the parent's illness state. This study also highlights the importance for health care professionals to establish a good relationship with adolescents and young people to meet their needs and preferences for support. In addition, information and support are needed in a timely manner and adapted to the life-threatening ill parent's illness state and individual's needs and preferences to optimise preparedness., (© 2022. The Author(s).)

Being a parent of a child with spinal muscular atrophy (SMA), a disease that causes progressive muscle weakness, involves a range of challenges. The purpose of this study was to explore what advice parents of children with severe SMA, in absence of effective therapies, would like to give to other parents. This study derives from two nationwide parental surveys in Sweden and Denmark, where content analysis was used to analyse one open-ended question about parents' advice to other parents. Ninety-five parents (parents of children diagnosed with SMA type 1 or 2, for whom respiratory support was considered during first year of life) participated (response rate: 84%). Of these 95 parents, 81 gave written advice to other parents. Advice covered coping with everyday life with the ill child, existential issues of living with and losing a child with SMA and involvement in care of the child. Parents highlighted leading normal lives insofar as possible, for example, trying to see healthy aspects in their child, not only focusing on care and treatment. Shared advice can be related to resilience strategies to parents, which can help healthcare professionals and others to support parents in similar situations.

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.

Objective: The aim of the study was to explore the proportion of adult patients and next-of-kin who had end-of-life (EOL) discussions and associated factors., Method: A retrospective nationwide registry study was reported with data from the Swedish Register of Palliative Care. All patients in Sweden in hospitals, nursing homes, own homes, community, and palliative care units during 2015-2017 and their next-of-kin were included. Data were reported to the register by healthcare staff, based on diseased patients' records regarding their last days of life, and were voluntary. Descriptive statistics illustrated the proportion of patients/next-of-kin who had EOL discussions and logistic regressions were used to examine associated factors., Results: About half of the patients (46%) did have an EOL discussion, but a third (32%) did not. Associated factors of those who did not have an EOL discussion were dementia (48.5%) or stroke (47.5%), older age (38.4%), being female (33.6%), being cared for in a nursing home (41.3%), or hospital (40.3%), having lost decision-making ability months before death (58.9%), and not having a documented decision to shift to EOL care (82.7%). Younger patients diagnosed with cancer and cared for at a palliative unit were more likely to have EOL discussions. The regression analysis showed similar results for next-of-kin., Significance of Results: The result shows that not all patients with palliative care needs have equal access to EOL discussions, despite efforts at a national level and the recognized benefits of timely communication about the EOL care. Further efforts must be made to achieve EOL discussions for all patients.

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.

Background: There are few scientifically evaluated psychosocial interventions in pediatric oncology, despite the needs for families. The family-based psychosocial intervention "The Family Talk Intervention" (FTI) has shown promising results in other care contexts and was therefore pilot-tested in pediatric oncology. In this study, we examined the experiences of participating in FTI from ill children's perspectives regarding feasibility and potential effects. Methods: This pilot study involved 26 families in pediatric oncology that had participated in FTI. The paper is focused on those ill children who answered surveys (n = 19) and/or participated in interviews (n = 11) when FTI had ended. Data were analyzed with descriptive statistics and thematic analysis. Results: For most ill children, FTI came at the right time, included a reasonable number of meetings, and the length of the meetings was appropriate. The children felt listened to and understood by the interventionists and almost all children reported that FTI had helped them in some way. The children's perceptions indicated that FTI improved communication within the family and strengthened family relations. Children reported that the parents and their siblings seemed to feel better after participation and became more understanding. Discussion: The findings of this pilot study indicated that a full-scale study could be valuable from the ill children's perspective, as FTI was reported as feasible and had positive effects. The findings showed that FTI gave families an opportunity to open up communication about the illness, adjust their behaviors, and strengthen family relationships. Trial registration: ClinicalTrials.gov Identifier NCT03650530.

Siblings of children with palliative care needs often suffer feelings of being neglected, and their needs for information and involvement are frequently unmet. This study aims to explore the experiences and feelings of siblings of children with palliative care needs, and to determine what is important to them. Nine siblings, aged 6-14 years, were interviewed using four different communication tools: See-Hear-Do pictures, including the empty body as a separate element, Bear cards, and words originating from previous sibling research. Data were analyzed using conventional content analysis. Five categories emerged concerning aspects that the siblings described about their situation and things that they found important: being part of a special family; school-a place for leisure, friends, and learning; relentless feelings of guilt and self-blame; losses and separations; and awareness of death-not if, but when. Siblings of children with rare diseases expressed an awareness that their brother or sister would die, although still felt they were part of a special, happy family. Siblings of children with palliative care needs due to an accident described relentless feelings of self-blame and guilt. The needs of siblings may vary depending on the condition that resulted in the ill sibling's palliative care needs.

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., (© 2021 Wiley Periodicals LLC.)

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., (© 2021 Foundation Acta Paediatrica. Published by John Wiley & Sons Ltd.)

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.

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 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.

Purpose: This study aims to explore negotiations of hope in everyday life for families where a child with spinal muscular atrophy (SMA) has received a new drug treatment. Methods: A narrative design was used, drawing on interviews and participant observations in two families with children with SMA, types 1-2, to situate family experiences of hope in everyday life. Narrative analysis was used on the data. Results: Results are presented as stories, with details about situations and contexts, to illustrate how hope was used by families to reconstruct their own family narratives. Conclusions: Hope was negotiated and struggled with in different ways by different family members, but contributed to each person's own way of dealing with the disease and outlook for the future.

Objectives: The loss of a child is a devastating event, and bereaved parents often suffer intense and long-lasting grief reactions and are at risk for psychological symptoms. More knowledge about how parents cope with grief may improve the support to bereaved parents. This study, therefore, aimed to explore parents' views on what facilitated or complicated their grief coping after losing a child to cancer., Methods: This study was derived from a nationwide postal survey. Cancer-bereaved parents (n = 161) provided written responses to two open-ended questions: "Is there anything that has helped you cope with your grief after your child's death?" and "Is there anything that made it difficult for you to cope with your grief?" Content analysis was used to analyze the responses., Results: Parents reported that a supportive social network of family and friends, and having remaining children, facilitated their coping with grief. Meeting professional counselors and meeting other bereaved parents, connecting to memories of the deceased child in various contexts, including school and pediatric care settings, were also reported facilitating grief coping. Parents stated that the following experiences had complicated grief coping: additional losses in their family or social network; not being able to share emotions with their partner; when they perceived that friends, relatives, or colleagues lacked empathy or patience; when they felt challenging demands from employers at a too early stage., Significance of Results: This study contributes to the understanding of parents' grief experiences and what has facilitated or complicated their coping with grief, which can help health care professionals and others improve bereavement support services.

Background All healthcare professionals working with children should have a child-centred perspective, and should be responsive to children and adolescents who want to talk about their thoughts and feelings. The child's or adolescent's story is the starting point for mutual understanding between them and the healthcare professional, and is the basis for shared decision-making between patients and healthcare professionals in child-centred care. Aim To advance understanding of how Swedish children and adolescents with cancer perceived the effects of the disease and its treatment on their everyday life. Method Ten girls and five boys, aged between five and 18 years, with cancer were interviewed individually using four communication tools. The interviews lasted between 20 and 65 minutes and took place without their parents present. The data were analysed using content analysis. Findings Transition to an unpredictable everyday life was identified as a main theme, with five subthemes: struggling with side effects of the cancer and its treatment; treatment as an 'emotional rollercoaster'; changed self and being vulnerable; changed social life; and concerns about academic achievement. Conclusion To provide effective support and care for children and adolescents with cancer, healthcare professionals should strive to listen to them and focus on their perspectives., Competing Interests: None declared, (© 2020 RCN Publishing Company Ltd. All rights reserved. Not to be copied, transmitted or recorded in any way, in whole or part, without prior permission of the publishers.)

Objective: One of the main goals of the Family Talk Intervention (FTI) is to increase communication within families with dependent children about illness-related consequences and to support parenting. FTI is family-centered and includes six manual-based meetings led by two interventionists. This study aims to evaluate the feasibility of the FTI in terms of acceptability from the perspective of parents in families with dependent children where one parent receives specialized palliative home care., Method: A descriptive design employing mixed methods was used to evaluate the FTI in specialized palliative home care. In total, 29 parents participated in interviews and responded to a questionnaire following FTI. Qualitative content analysis and descriptive statistics were used for analyses., Results: FTI responded to both the ill parent's and the healthy co-parent's expectations, and they recommended FTI to other families. Parents found the design of FTI to be well-structured and flexible according to their families' needs. Many parents reported a wish for additional meetings and would have wanted FTI to start earlier in the disease trajectory. Parents also would have wished for a more thorough briefing with the interventionists to prepare before the start. The importance of the interventionists was acknowledged by the parents; their professional competence, engagement, and support were vital for finding ways to open communication within the family. The FTI meetings provided them with a setting to share thoughts and views. Parents clearly expressed that they would never have shared thoughts and feelings in a similar way without the meetings., Significance of Results: According to parents, FTI was found acceptable in a palliative home care context with the potential to add valuable support for families with minor children when a parent is suffering from a life-threatening illness.

Background: Communication about illness-related subjects is complex and difficult. To support entire families in pediatric oncology, health care professionals need to know what family members think, but leave unspoken. The aim of this study was to explore how families in pediatric oncology experienced illness-related information and communication with professionals and within the family., Procedure: A cross-sectional web survey was used. Families were recruited from one pediatric oncology center in Sweden, 2-3 months after diagnosis. One hundred eighteen family members (ill children, siblings, and parents) representing 27 families filled out age-adapted surveys., Results: Eighty-six percent of the parents and 71% of the siblings reported that they had not received enough or any information about how the cancer and its treatment could affect the child's psychological health. The families reported that they did not dare ask professionals questions about psychosocial issues and future-related subjects. Nor did they talk with one another, even though 55% of the parents and 24% of the children wanted to reveal more about how they felt to someone in the family. The parents reported the lowest family communication, and few families had all members reporting the same perception of family communication., Conclusions: Much is still left unspoken in pediatric oncology and the needs of the families are prominent. Assessments of each family member's needs might form a basis for professionals to give each person adequate information and family support. An increased awareness in families about family members' different needs might lead to mutual understanding., (© 2020 The Authors. Pediatric Blood & Cancer published by Wiley Periodicals LLC.)

Children's experiences of information and family communication when a parent has a life-threatening illness have been sparsely studied, though such information is important for the child's wellbeing. The aim of this study was to explore children's reports of illness-related information and family communication when living with a parent with a life-threatening illness. Forty-eight children, aged 7 to 19 years, were recruited from four specialized palliative home care units in Stockholm, Sweden. All but one child reported that someone had told them about the parent's life-threatening illness; however, two thirds wanted more information. A quarter of the teenagers reported that they had questions about the illness that they did not dare to ask. Half of the children, aged 8 to 12, reported that they felt partially or completely unable to talk about how they felt or show their feelings to someone in the family. Interventions are needed that promote greater family communication and family-professional communication.

Background: Children show long-term psychological distress if family communication and illness-related information are poor during and after a parent's illness and death. Few psychosocial interventions for families with minor children living with a parent who has a life-threatening illness have been evaluated rigorously. Even fewer interventions have been family-centered. One exception is the Family Talk Intervention (FTI), which has shown promising results regarding increased illness-related knowledge and improved family communication. However, FTI has not yet been evaluated in palliative care. This study therefore aimed to explore the potential effects of FTI from the perspectives of minor children whose parent is cared for in specialized palliative home care., Methods: This pilot intervention study involves questionnaire and interview data collected from children after participation in FTI. Families were recruited from two specialized palliative home care units. To be included, families must include one parent with life-threatening illness, at least one child aged 6-19 years, and understand and speak Swedish. Twenty families with a total of 34 children participated in FTI; 23 children answered the questionnaire, and 22 were interviewed after participation., Results: The children reported that FTI increased their knowledge about their parents' illness. They said the interventionist helped them to handle school-related problems, establish professional counselling, and find strength to maintain everyday life. Children aged 8-12 reported that talking with their parents became easier after FTI, whereas communication was unchanged for teenagers and between siblings. Children also reported having been helped to prepare for the future, and that they benefitted from advice about how to maintain everyday life and minimize conflicts within the family., Conclusions: Children who participated in FTI reported that it was helpful in many ways, providing illness-related information and improving family communication when a parent has a life-threatening illness. Other potential positive effects reported by the children were that FTI facilitated their preparation for the future, decreased family conflicts, and started to build up resilience., Trial Registration: ClinicalTrials.gov, Identifier NCT03119545, retrospectively registered 18 April 2017.

The aim of this nationwide survey was to explore, based on an open-ended question, cancer-bereaved siblings' advice to peers with a brother or sister with cancer. Half of the advice related to being with the ill sibling and cherishing the time together. Other advice related to the value of communicating about the situation, letting go of guilt, and living life as usual. The results highlight the importance of health care professionals, family, and others facilitating for siblings to spend time together and communicate openly.

Aim: We explored physicians' experiences of communicating with families when their child had cancer and a cure was no longer an option, by focusing on barriers and facilitating factors., Methods: Physicians from the six cancer centres in Sweden took part in focus group discussions between December 2017 and May 2018, and the data were analysed using qualitative content analysis. Focus groups enabled us to gather individual and shared perspectives., Results: The 35 physicians (20 male) had a mean age of 47 (range 31-74) and a mean of 11 years' experience in oncology, ranging from under one year to 43 years. They reported communication challenges when a cure was not possible, namely: emotional and mental drain, lack of mutual understanding and uncertainty about communication skills. They also reported facilitating factors: flexibility in complex conversations, the child's position in the conversations, continuity and trusting relationships, support from colleagues and having discussed the potentially life-threatening nature of cancer from the very start of treatment., Conclusion: Training to overcome communication issues could support the early integration of palliative care., (© 2019 The Authors. Acta Paediatrica published by John Wiley & Sons Ltd on behalf of Foundation Acta Paediatrica.)