Semester

Spring

Date of Graduation

2022

Document Type

Dissertation

Degree Type

PhD

College

School of Nursing

Department

Family/Community Health

Committee Chair

Roger Carpenter

Committee Co-Chair

Mary Jane Smith

Committee Member

Mary Jane Smith

Committee Member

Tina Antill Keener

Committee Member

Terrah Akard

Committee Member

Lisa Costello

Abstract

Background: Parents caring for a child with an acquired disability often report a negative impact on physical, psychological, emotional, and spiritual health associated with caregiver burden related to their child’s complex health needs. This is further complicated by additional challenges related to the loss of a previously healthy child. Traditional patterns of loss follow linear, time-bound stages that have been observed to be unrelated to the experiences of these specific parents and their families. Therefore, the concept transforming loss has been developed to better understand how these parents navigate loss and find meaning in spite of their suffering.

Purpose: The purpose of this study was to (1) gather empirical evidence about the concept of transforming loss, and (2) use the evidence to offer guidance for nursing practice on how to assist families who are navigating these significant life experiences. The research question was, “How do parents describe living through the experience of caring for a child with an acquired disability?”

Method: The study used qualitative directed content analysis guided by the core qualities of transforming loss: unveiling, light, and darkness. Eight participants were recruited from online support groups, where tape-recorded, semi-structured interviews were used to gather their stories. The stories were transcribed verbatim, reconstructed, and confirmed via member check. Data analysis included various stages using specific descriptors, condensed meaning units, subthemes, and themes.

Results: Eight themes were derived from predetermined categories within the concept. Unveiling, or the active process of freely choosing meaning is being strong and overcoming challenges to care, creating a life space of connecting with others and giving grace, and viewing goodness and joy in watching ongoing progress. Darkness, or the suffering associated with loss is knowing and not knowing the terrifying consequences of loss, unrelenting vigilance and being on the edge that weighs on family wellbeing, and the unending worry about life-long care. Light, or finding purpose and meaning is envisioning possibilities and hope for the future and valuing relationships within the family to foster a caring way of being.

Conclusions: Findings from the study were congruent with previous literature on caregiving, loss, and meaning, coherent with the theoretical and conceptual frameworks, and grounded in the discipline of nursing. Implications for future research, practice, and policy include supportive measures to assist parents in the transformation of their loss, and additional studies are needed to further explore the concept transforming loss for its use in other settings and populations.

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