When a parent is affected by a life-threatening illness : Exploring children’s and parents’ needs for support

• 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.

Subject headings

MEDICIN OCH HÄLSOVETENSKAP  -- Hälsovetenskap -- Omvårdnad (hsv//swe)

MEDICAL AND HEALTH SCIENCES  -- Health Sciences -- Nursing (hsv//eng)

Keyword

Adolescents

Children

Families

Life-threatening illness

Palliative Care

Parents

Support

The Family Talk Intervention

Young people

Nursing Science

Omvårdnad

Publication and Content Type

vet (subject category)

dok (subject category)