Beyond standard care: Fathers' perspectives on healthcare and related support services when caring for a child with a progressive life-limiting condition-A qualitative study.
Marianne Sjuls, Mette Spliid Ludvigsen, Liv Fegran, Nastasja Robstad
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引用次数: 0
Abstract
Background: Fathers' experiences are seldom reflected in paediatric palliative care research, and existing studies predominantly focus on malignant conditions. Less is known about fathers' experiences with healthcare and related support services when caring for a child with a progressive life-limiting condition. These conditions are often marked by long and unpredictable trajectories and complex care needs.
Aim: To gain an in-depth understanding of how fathers experience healthcare and related support services while caring for a child with a progressive life-limiting condition.
Design: A qualitative interview study grounded in phenomenological hermeneutics.
Setting/participants: Thirteen Norwegian fathers of children aged 1-18 years with a progressive life-limiting condition lasting ⩾12 months. All children lived at home and received varying levels of respite or in-home care.
Results: Through the analysis, we developed three themes: (1) Being David against Goliath-battling the system, (2) Being father to a child too complex for tick-box care and (3) Striving for equal recognition as caregivers.
Conclusions: Fathers caring for a child with a progressive life-limiting condition experience fragmented healthcare and welfare services, which place substantial advocacy and coordination burdens on families. More flexible, coordinated and father-inclusive paediatric palliative care pathways are needed to recognise parental expertise and support both parents as equal caregivers.
期刊介绍：
Palliative Medicine is a highly ranked, peer reviewed scholarly journal dedicated to improving knowledge and clinical practice in the palliative care of patients with far advanced disease. This outstanding journal features editorials, original papers, review articles, case reports, correspondence and book reviews. Essential reading for all members of the palliative care team. This journal is a member of the Committee on Publication Ethics (COPE).
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