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When a parent is affected by a life-threatening illness: Exploring children’s and parents’ needs for support
Karlstad University, Faculty of Health, Science and Technology (starting 2013), Department of Health Sciences (from 2013).ORCID iD: 0000-0002-9082-3451
2023 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

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.

Abstract [en]

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.

Place, publisher, year, edition, pages
Karlstads universitet, 2023. , p. 90
Series
Karlstad University Studies, ISSN 1403-8099 ; 2023:24
Keywords [en]
Adolescents, Children, Families, Life-threatening illness, Palliative Care, Parents, Support, The Family Talk Intervention, Young people
National Category
Nursing
Research subject
Nursing Science
Identifiers
URN: urn:nbn:se:kau:diva-96249ISBN: 978-91-7867-392-6 (print)ISBN: 978-91-7867-393-3 (electronic)OAI: oai:DiVA.org:kau-96249DiVA, id: diva2:1786314
Public defence
2023-09-22, 1B364, Frödingsalen, Universitetsgatan 2, Karlstad, 09:00 (Norwegian)
Opponent
Supervisors
Available from: 2023-08-30 Created: 2023-08-08 Last updated: 2023-08-30Bibliographically approved
List of papers
1. Children and adolescents' preferences for support when living with a dying parent: An integrative review
Open this publication in new window or tab >>Children and adolescents' preferences for support when living with a dying parent: An integrative review
2022 (English)In: Nursing Open, E-ISSN 2054-1058, Vol. 9, no 3, p. 1536-1555Article in journal (Refereed) Published
Abstract [en]

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."

Keywords
adolescents, children, palliative care, parenting, systematic review
National Category
Nursing
Research subject
Nursing Science
Identifiers
urn:nbn:se:kau:diva-88995 (URN)10.1002/nop2.1187 (DOI)000754490000001 ()35156340 (PubMedID)2-s2.0-85124506723 (Scopus ID)
Available from: 2022-03-04 Created: 2022-03-04 Last updated: 2023-08-08Bibliographically approved
2. Adolescents' and young people's needs and preferences for support when living with a parent with life-threatening cancer: a grounded theory study
Open this publication in new window or tab >>Adolescents' and young people's needs and preferences for support when living with a parent with life-threatening cancer: a grounded theory study
2022 (English)In: BMC Palliative Care, E-ISSN 1472-684X, Vol. 21, no 1, article id 164Article in journal (Refereed) Published
Abstract [en]

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.

Place, publisher, year, edition, pages
BMC, 2022
Keywords
Adolescent, Cancer, Grounded theory, Palliative care, Support, Young people
National Category
Psychiatry Social Work
Research subject
Nursing Science
Identifiers
urn:nbn:se:kau:diva-92171 (URN)10.1186/s12904-022-01055-7 (DOI)000857137200001 ()36138453 (PubMedID)2-s2.0-85138430223 (Scopus ID)
Funder
Karlstad UniversityRegion Värmland
Available from: 2022-10-12 Created: 2022-10-12 Last updated: 2024-01-17Bibliographically approved
3. Illness-related information and communication when a parent with dependent children has a life-threatening illness: Parent’s perceptions
Open this publication in new window or tab >>Illness-related information and communication when a parent with dependent children has a life-threatening illness: Parent’s perceptions
(English)Manuscript (preprint) (Other academic)
National Category
Nursing
Research subject
Nursing Science
Identifiers
urn:nbn:se:kau:diva-96286 (URN)
Available from: 2023-08-08 Created: 2023-08-08 Last updated: 2023-08-10Bibliographically approved
4. A qualitative long-term follow-up of the Family Talk Intervention among families where a parent has a life-threatening illness
Open this publication in new window or tab >>A qualitative long-term follow-up of the Family Talk Intervention among families where a parent has a life-threatening illness
(English)Manuscript (preprint) (Other academic)
National Category
Nursing
Research subject
Nursing Science
Identifiers
urn:nbn:se:kau:diva-96287 (URN)
Available from: 2023-08-08 Created: 2023-08-08 Last updated: 2023-08-10Bibliographically approved

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