BackgroundThe 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.MethodsThis 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.ResultsThe 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.ConclusionFTI 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.

This thesis explored the needs and preferences for support in families with children when one of the parents is affected by a life-threatening illness. In this thesis a variation of designs were used, from a literature review, to an interview study, a survey, and a long-term follow-up of an intervention. The results show that there are both individual and shared needs and preferences within a family when a parent has a life-threatening illness, and that HCP should adapt their approach to support accordingly. The children preferred practical and emotional involvement in their parent's illness, while at the same time needing respite and a sense of normality. Parents preferred more individualised illness-related information provided by the HCP, as well as more guidance on how to care for and support their children. Both children and parents who lack social support are particularly vulnerable. Therefore, it is important for healthcare personnel to systematically map families' social network. Moreover, continuous support should be offered throughout all stages of the parents' illness trajectory, including the time after death to meet their needs.

Overall aim: the overall aim of this thesis was to explore needs and preferences for support in families with children, when one parent is affected by a life-threatening illness.

Methods: Study I involved children to a parent with a life-threatening illness and their needs and preferences for support through an integrative review. An interview study that focused on preferences and needs for support was conducted with adolescents and young people, using Grounded theory (Study II). To describe parents’ perceptions of illness-related information and communication a cross-sectional survey study, based on severely ill parents and co-parents who have dependent children, was conducted as Study III. Study IV, was a qualitative interview study with parents, focused on perceptions of the meaning of a family-centred intervention, “The Family Talk Intervention,” in the long term, and analysed with a phenomenographic approach.

Main findings: Children prefer and need to balance involvement in their parent's illness and treatment with the need to maintain some form of normality (I). It is important to survey the young people’s resources, in the form of their social network, and adapt the support according to the individual’s need and preferences for involvement (I, II). Parents could benefit from more illness and treatment related information, the physical and psychological impact of the illness and who they can turn to with questions about care (III). FTI can help reduce feelings of loneliness and promote family communication from both short-term and long-term perspectives. However, timing is crucial, and support over a longer period of time is desired, especially when the parent has passed away (IV).

Conclusion: When a parent with dependent children is affected by a life-threatening illness, each family member needs individually adjusted emotional, informational, instrumental and appraisal support according to their preferences. The support must be timed according to the shared and individual needs within the family, and it should be continuous throughout the entire illness process, including the time after death.

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.

Aim: To identify and synthesize the evidence base regarding children and adolescents' preferences for support when living with a dying parent. Design: Integrative literature review study. Methods: Searches were conducted in PubMed, CINAHL, PsycINFO, the Cochrane Library, Sociological Abstracts and Scopus, between 1 October 2019 and May 2021. Data were analysed and synthesized using integrative thematic analysis according to the analysis stages specified by Whittermore and Knafl. Results: Twenty-two articles were identified. Children and adolescents' preferences for support were described through one overarching theme, Striving to achieve control and balance, together with six subthemes; "Involvement in the sick parent's care and treatment"; "Wanting to be with the sick parent but needing respite"; "Information must be continuous and individually adapted"; "emotional and communicative support from parents and family members"; "professional, compassionate and informative support"; and "support in friendships and opportunities to maintain normality."