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Experiences of being a severely ill parent of dependent children receiving care at home: Hopes and challenges

Published online by Cambridge University Press:  29 March 2023

Maja Holm Open the ORCID record for Maja Holm [Opens in a new window] ,
Malin Lövgren ,
Anette Alvariza Open the ORCID record for Anette Alvariza [Opens in a new window] ,
Rakel Eklund  and
Ulrika Kreicbergs Open the ORCID record for Ulrika Kreicbergs [Opens in a new window]
Maja Holm*
Affiliation:
Department of Nursing Sciences, Sophiahemmet University, Stockholm, Sweden Department of Health Care Sciences, Palliative Research Centre, Marie Cederschiöld University, Stockholm, Sweden
Malin Lövgren
Affiliation:
Department of Health Care Sciences, Palliative Research Centre, Marie Cederschiöld University, Stockholm, Sweden Advanced Pediatric Home Care, Karolinska University Hospital, Stockholm, Sweden
Anette Alvariza
Affiliation:
Department of Health Care Sciences, Palliative Research Centre, Marie Cederschiöld University, Stockholm, Sweden Stockholm Sjukhem Foundation, Research and Development Unit/Palliative Care, Stockholm, Sweden
Rakel Eklund
Affiliation:
Department of Women’s and Children’s Health, Uppsala University, Uppsala, Sweden
Ulrika Kreicbergs
Affiliation:
Department of Health Care Sciences, Palliative Research Centre, Marie Cederschiöld University, Stockholm, Sweden Department of Women and Child’s Health, Karolinska Institutet, Stockholm, Sweden
*
Author for correspondence: Maja Holm, Department of Nursing Sciences, Sophiahemmet University, Box 5605, Stockholm 114 86 Sweden. Email: maja.holm@shh.se
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Abstract

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.

Keywords

ParentsPalliative home careChildrenCommunicationIntervention
Type
Original Article
Information
Palliative & Supportive Care , Volume 22 , Issue 1 , February 2024 , pp. 169 - 173
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Copyright
© The Author(s), 2023. Published by Cambridge University Press.

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