Examining The Experiences Of Fathers Of Children With A Life-limiting Illness.

Title

Examining The Experiences Of Fathers Of Children With A Life-limiting Illness.

Creator

Nicholas DB; Beaune L; Barrera M; Blumberg J; Belletrutti M

Publisher

Journal Of Social Work In End-of-life & Palliative Care

Date

2016

Subject

Bereavement; Caregivers/caregiving; Children/pediatrics; Health Care; Palliative Care

Description

Families who have a child diagnosed with a life-limiting illness (LLI) face substantial challenges resulting from the complexity and devastating impact of the condition and potential closeness of death. The experiences of fathers of a child with LLI have been understudied; therefore, this study explored the stresses, experiences, and strategies of these fathers, including their perceptions about support needs. Based on grounded theory, in-depth semi-structured interviews were conducted with 18 fathers of children with LLI. Six fathers had experienced the death of their child. The overarching themes were stresses, means of coping, and perceived needs for support. Generally, fathers in this study struggled relative to discursive and internalized notions of fathers as providers and protectors for their children, combined with an inability to ease their child's vulnerability to LLI. Participants were engaged in the care of their child with LLI, but several felt marginalized by health care providers in care planning and staff/family communication. Some fathers recognized and valued their support network while others had few supports. Some described personal growth and desired to help other fathers. Practice implications and recommendations include renewed application of family-centered care, overcoming presumptions about fathers' roles, and recognizing the impact of LLI beyond physical health.

Rights

Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).

Citation List Month

May 2016 List

Citation

Nicholas DB; Beaune L; Barrera M; Blumberg J; Belletrutti M, “Examining The Experiences Of Fathers Of Children With A Life-limiting Illness.,” Pediatric Palliative Care Library, accessed July 26, 2021, https://pedpalascnetlibrary.omeka.net/items/show/10600.

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