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Children and adolescents' preferences for support when living with a dying parent: An integrative review
Karlstad University, Faculty of Health, Science and Technology (starting 2013), Department of Health Sciences (from 2013). Inland Norway University of Applied Science , NOR.ORCID iD: 0000-0002-9082-3451
Karlstad University, Faculty of Health, Science and Technology (starting 2013), Department of Health Sciences (from 2013). ..ORCID iD: 0000-0003-0417-6161
Lovisenberg Diaconal University College, NOR.ORCID iD: 0000-0002-0944-5650
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."

Place, publisher, year, edition, pages
2022. Vol. 9, no 3, p. 1536-1555
Keywords [en]
adolescents, children, palliative care, parenting, systematic review
National Category
Nursing
Research subject
Nursing Science
Identifiers
URN: urn:nbn:se:kau:diva-88995DOI: 10.1002/nop2.1187ISI: 000754490000001PubMedID: 35156340Scopus ID: 2-s2.0-85124506723OAI: oai:DiVA.org:kau-88995DiVA, id: diva2:1642157
Available from: 2022-03-04 Created: 2022-03-04 Last updated: 2023-08-08Bibliographically approved
In thesis
1. When a parent is affected by a life-threatening illness: Exploring children’s and parents’ needs for support
Open this publication in new window or tab >>When a parent is affected by a life-threatening illness: Exploring children’s and parents’ needs for support
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
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:nbn:se:kau:diva-96249 (URN)978-91-7867-392-6 (ISBN)978-91-7867-393-3 (ISBN)
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

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Bergersen, Emily BeatriceLarsson, MariaOlsson, Cecilia

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