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 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.

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.

Bakgrund När ett barn eller förälder drabbas av svår sjukdom påverkas alla familjemedlemmar. Behovet av psykosocialt stöd är identifierat sedan länge, trots detta finns få vetenskapligt utvärderade psykosociala stödprogram för hela familjen. Än mindre forskning om faktorer som påverkar införandet av nya psykosociala stödprogram i klinisk praktik. Kunskap om detta skulle kunna underlätta framtida strategier för implementering av psykosociala insatser.

Syfte Att utforska hälso- och sjukvårdskuratorers erfarenheter av hinder och möjligheter vid införandet av ett psykosocialt familjebaserat stödprogram, the Family Talk Intervention (FTI), i klinisk praktik bland barnfamiljer med palliativa vårdbehov.

Metod Delstudien ingår i ett större effekt-implementeringsprojekt som utvärderar FTI inom cancervård och specialiserad hemsjukvård där en förälder är svårt sjuk, samt på barnsjukhus och barnhospice där ett barn är svårt sjuk. Studien baseras på 11 fokusgrupper med 43 kuratorer som genomgått utbildning i FTI. Utbildningen innehöll teori, rollspel samt att genomföra FTI under handledning. FTI är en manualbaserad familjeintervention med målet att underlätta kommunikationen i familjen, öka kunskapen om sjukdomsrelaterade frågor, stödja föräldraskapet, samt synliggöra barnens behov. Data analyserades med kvalitativ innehållsanalys.

Resultat Flera av hälso- och sjukvårdskuratorerna beskrev att FTI gav struktur till arbetet med barnfamiljer genom att barnens perspektiv synliggjordes (sjuka barn och barn som närstående) liksom familjens behov i stort. Teamet sågs av flera hälso- och sjukvårdskuratorer som en resurs vid rekrytering, men graden av deras involvering varierade. Vårdrelaterade faktorer som möjliggjorde eller hindrade implementeringen var relaterade till var i sjukdomsförloppet patienten befann sig, längden på vårdtiden samt vårdformen (slutenvård, öppenvård eller hemsjukvård). Vidare beskrevs bristande stöd från chef, hög arbetsbelastning, oklara förväntningar, hög personalomsättning samt ensamarbete som hindrande faktorer vid införandet av FTI.

Konklusion Studien visar vikten av att beakta kontextuella faktorer, arbetsmiljöns påverkan i stort, liksom betydelsen av chefens engagemang för att uppnå en framgångsrik implementering av nya metoder

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.

The aim with this study was to explore minor children’s experiences of the Family Talk Intervention (FTI) when a parent is cared for in palliative home care, with a focus on feasibility. The main goal of FTI is to increase family communication about the illness. This paper is based on 25 children’s reports, derived from a pilot study with a mixed method design, involving both questionnaires and interviews, performed after the children’s 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.

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 aim of this paper were to examine 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.

När barnfamiljer drabbas av svår sjukdom uppstår det stora utmaningar för alla i familjen. Vid Marie Cederschiöld högskola pågår forskning om stöd till dessa familjer. En intervention som involverar alla familjemedlemmar är stödprogrammet the Family Talk Intervention. Den utvärderas och implementeras inom specialiserad palliativ hemsjukvård och cancervård där en förälder är sjuk, men också inom pediatrisk vård och barnhospice där ett barn har palliativa vårdbehov.

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.

Att samtala om det som är svårt, exempelvis prognos, är utmanande för både barn, familj och vårdpersonal. Trots denna utmaning är det viktigt att hitta former för detta så att familjen får möjlighet att välja hur de vill leva sitt liv.