The Family Talk Intervention is a family-centered intervention in six sessions, which can be a tool to help health care social workers support families with dependent children when someone in the family has a severe illness. However, the influence of contextual factors on the implementation of Family Talk Intervention warrants further investigation. The purpose of this study was to examine the organizational context of social workers and its association with the implementation of Family Talk Intervention among families in which a parent or child is severely ill with identified palliative care needs. The study was part of a larger intervention project where Family Talk Intervention was implemented through a structured program in three different clinical care contexts: advanced palliative care, adult cancer care, and advanced pediatric care. Two validated instruments were used to measure social workers' ratings of their organizational context and the implementation of Family Talk Intervention. Results showed that higher ratings on certain organizational aspects were significantly associated with higher implementation ratings. These aspects, namely informal interactions, social capital and culture of the workplace, should be studied further. These may serve as facilitators for the implementation of family-centered interventions like Family Talk Intervention, by social workers and should be observed and promoted during the implementation of interventive processes.

BACKGROUND: Treatments in the phase of metastatic castration-resistant prostate cancer (mCRPC) aim to prolong survival and reduce the symptom burden. The fast development of life-prolonging therapies makes treatment decision-making (TDM) complex, weighting survival against possible side-effects and quality of life, especially in a real-world context. This study aimed to describe satisfaction with TDM at start of the first, second and third line of life-prolonging treatment and to describe and compare long-term treatment experiences when receiving one or several lines of treatment in patients with mCRPC.

METHODS: A longitudinal observational study. Participants completed a study-specific questionnaire every three months for up to two years from the start of any first line of life-prolonging treatment after mCRPC. Satisfaction with TDM was measured at the start of each new treatment line while treatment experiences were measured using the first and last completed questionnaire of each participant. Medical data was obtained from medical records. Descriptive statistics were used to present data while inferential statistics were used for analysis of group comparisons and over time changes.

RESULTS: A total of 122 participants (mean age 75.3 years) with an average follow-up time of 18.3 months were included. Satisfaction with TDM was generally high at the start of the first, second and third line of treatment, but lower regarding discussions on how treatment could affect their life situation. Treatment experiences were positive, yet there was a significant decrease from the first to the last follow-up in whether they would choose (p = 0.04) and recommend (p = 0.01) the same treatment to others. For participants who received one line of treatment, a significant decrease was found between the first and the last follow-up (p = 0.02), while no differences were found for those who received two or more lines.

CONCLUSIONS: Despite high satisfaction with aspects of TDM and the treatment given it is important to discuss how the treatment can impact the patient's life situation. The slightly decreased satisfaction over time on the treatment received could reflect a possible need to strengthen communication between patients and healthcare professionals, shifting from a disease-centered perspective towards a more person-centered and palliative care approach.

BACKGROUND: The psychosocial needs of families involving a child with a life-limiting or life-threatening condition are well recognized. However, evidence-based interventions that address the needs of the entire family remain scarce, even though family health can be maintained and supported if interventions encompass each individual family member, as well as the family as a unit. The aim was to evaluate the family talk intervention (FTI), regarding family communication, and psychosocial health, for families involving a child with a life-limiting or life-threatening condition.

METHODS: This pre-post study without a control group involved families of children with a life-limiting or life-threatening condition receiving FTI at a pediatric hospital and a hospice in Sweden. The study is registered at clinicaltrials.gov (ID NCT05020158, date of registration: 23 August 2021). FTI is a family-based intervention with the goal of facilitating family communication about illness-related topics, e.g., prognosis, support parenting, and making all children's needs visible. In total, 105 participants from 29 families were included. Surveys measuring self-assessed family communication and satisfaction, anxiety, resilience, parenting skills, and children's mental problems were answered at three time points: baseline (before intervention), at the end of the intervention, and six months later. Changes over time were analyzed using linear mixed-effects models.

RESULTS: Significant improvements were reported in family communication, family satisfaction, parenting skills, and levels of anxiety over time. Children's mental health problems were reduced over time regarding emotional symptoms, conduct problems, peer relationship difficulties, and hyperactivity. No changes were found regarding resilience.

CONCLUSION: The results suggest that FTI contributes to improved family communication and psychosocial health for families involving a child with a life-limiting or life-threatening condition. This highlights the value of a systemic approach that actively involves all family members.

BACKGROUND: The Family Talk Intervention (FTI) is a psychosocial intervention supporting families where a family member has palliative care needs. This study aimed to evaluate how the Family Talk Intervention (FTI) was implemented over time from the perspective of hospital social workers (HSWs) in their everyday clinical practice among families with a severely ill parent or child in need of palliative care.

METHODS: HSWs (n = 21) working in adult and children's care completed a 10-day education where they were trained to use FTI. The education was part of a multifaced implementation strategy involving educational outreach visits, facilitation, clinical implementation meetings, and audit and feedback. The HSWs were then expected to use FTI in their clinical practice to support families with dependent children. To assess if and how FTI was integrated into their daily practice, they were also asked to complete the Swedish version of the Normalization Process Theory Measure (S-NoMAD) on three occasions: on completion of the FTI-education, six months later, and one year later. For the longitudinal analysis of data, Friedman's test was used.

RESULTS: The HSWs rated the use of FTI high after completing the FTI-education, indicating a positive attitude towards FTI. In the longitudinal analysis, statistically significant changes were seen for two questions in S-NoMAD, where the HSWs' ratings showed that the FTI became more familiar and normalized over time. Generally, the HSWs' ratings of S-NoMAD's main constructs were high and stable over time, indicating a positive view of FTI and its implementation. However, for the single questions, the ratings were slightly more negative to some contextual aspects, such as managerial support and resources.

CONCLUSION: As results showed, HSW mainly rated different aspects of the implementation process as positive, both from the beginning, but also over time. Therefore, the intervention could be judged to have been implemented as a tool to support families when a parent or a child is severely ill. Contextual factors, involving managerial support and resources were rated lower, indicating the importance of those aspects when introducing interventions into healthcare. The result also indicates that the multifaced implementation strategy supported the HSW's everyday clinical practice.

CLINICAL TRIAL REGISTRATION: clinicaltrials, nr, identifier (NCT05365919; 2022-03-04 and; NCT05020158 2021-05-11).

BACKGROUND AND PURPOSE: The psychosocial needs of migrant families affected by a child's severe -illness are extensive. However, few family-centred interventions have been evaluated and even fewer have included families with migrant backgrounds. The aim of this study was, therefore, to explore migrant families' experiences of participating in a family-centred psychosocial intervention, the Family Talk Intervention (FTI), in a paediatric care setting.

MATERIAL AND METHODS: In this study, semi-structured interviews were performed with 14 family members (six parents, one ill child, and seven siblings) after participating in FTI. The interviews were transcribed and analysed using thematic network analysis.

RESULTS: After participating in FTI, the families experienced that, in their already exposed situation, their family stability had increased as they were supported in dealing with social and financial issues, encouraged to talk openly about difficulties, and thus became closer as a family. Both children and parents described the value of having someone professional, continuously available, to turn to for guidance and information.

INTERPRETATION: Migrant families dealing with a child's severe illness live in an exposed situation, with a double burden of distress related to the child's illness and socioeconomic factors. By acknowledging the importance of these families' psychosocial needs, it could be recognised that psychosocial support, such as FTI, not only aids family adjustment but also contributes to reducing this double burden, increasing family stability.

Background: Despite the significant psychosocial challenges faced by families in pediatric oncology, there is a notable lack of long-term scientific evaluations of family-based psychosocial interventions that address the needs of the entire family. This study examines parental retention 4-5 years after participating in a psychosocial family-based intervention family talk intervention (FTI). FTI consists of 6-11 manual-based meetings. The main goals of FTI are to facilitate family communication about illness-related topics, support parenting, and make the children's needs visible.

Method: This qualitative study included interviews from 30 parents from 18 families who had participated in FTI 4-5 years earlier. Data were analyzed using content analysis.

Results: Parents reported that they still used several of the strategies they had learned during FTI that helped them to continue to share their thoughts and emotions and maintain an open communication within the family, which reduced the family's stress. Parents also used strategies that helped them to put the spotlight on the children and to increase the democracy in the family. Their participation provided a springboard to participate in new contexts outside the hospital where they share their difficulties with other parents.

Discussion: Long-term evaluation is crucial for understanding an intervention's sustainability over time. The psychosocial intervention, FTI, remained beneficial for families even 4-5 years after their participation, with the strategies learned during FTI demonstrating long-term persistence and enhancing parents' resilience in coping with adverse life events.

BACKGROUND: The Support Needs Approach for Patients (SNAP) enables patients to reflect on, identify and prioritise their own support needs from a holistic perspective and enable tailored support. Therefore, the aim of this study was to examine the content validity and response processes for the Swedish version of the SNAP Tool among patients with life-threatening illness and palliative care needs, and registered nurses (RN) in specialized palliative home care services.

METHODS: This was a two-stage validation study: (I) translation of the original English version of the SNAP Tool into Swedish, and (II) examination of content validity for patients and RNs in specialized palliative home care, and response processes among the patients. Cognitive interviews were conducted with patients (n=11) and focus groups with RNs (n=10). Data were, in stage II, analysed for relevance, clarity, and sensitivity.

RESULTS: The translation process identified a few differences in wordings that were thoroughly debated to retain the meaning of the questions. Both patients and RNs considered the Swedish version of the SNAP Tool relevant to the palliative care context and its questions clear and easy to understand. Patients believed that their responses on the tool could be helpful in providing a clear structure for conversations and present a picture of their individual support needs. There were just a few considerations about sensitivity of questions from the patients' perspectives and the RNs felt that some of the questions may need to be handled with care.

CONCLUSIONS: This study demonstrates that the Swedish version of the SNAP Tool has good coverage of Swedish patients' support needs, and that the questions are perceived as intended. This indicates that the SNAP Tool effectively captures a wide range of support needs and aligns with its intended purpose. The tool is appropriate for specialized palliative home care and allows the SNAP intervention to be made available to this group of patients.

BACKGROUND: Web-based interventions targeted at family caregivers has become a quickly expanding research field, none the least since a growing number of patients with incurable illness are being cared for at home. Spouses, who are also family caregivers, constitute an especially vulnerable group in need of support when they are cohabitating with the ill patient and research shows that communication regarding the illness is important, yet challenging. This study therefore explored effects of a family caregiver-targeted web-based psycho-educational intervention on communication about incurable illness and remaining life between spouses and patients receiving specialized home care.

METHODS: The study had a pre-post-design. An intervention containing videos and texts about family caregiving was developed and made accessible via a website. Thirty-nine spouses (67% women, median age: 61) were recruited from specialised home care services. At baseline, and after 4 weeks of access to the website, spouses completed a questionnaire about communication with the patient regarding incurable illness and remaining life. Data was analyzed using the Wilcoxon signed-rank test.

RESULTS: No significant changes were found between baseline and follow-up. Most spouses did, however, report having talked with the patient about the illness being incurable (64%) and how the illness affected the patient physically (64%) and psychologically (77%) during the past month already at baseline. Regarding communication about the remaining life and how to manage once the patient had passed away, 46-59% instead reported not having had these conversations with the patient ever.

CONCLUSIONS: A majority of the spouses had talked about aspects of the illness and its consequences already at baseline, indicating that these matters are important to spousal caregivers of patients with incurable illness. However, a sizeable portion had not ever talked to the patient about how to manage once the patient had passed away, suggesting there are barriers to such conversations that need to be further explored. Future research on web-based psychoeducational interventions targeted at family caregivers need to address barriers and the diverse support needs regarding communication, especially about the remaining life, among spouses of patients with incurable illness.

TRIAL REGISTRATION: The study was first registered on clinicaltrials.gov(NCT03676283) on 2018.09.12.

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.