Investigating the adaptation of caregivers of people with traumatic brain injury: a journey told in evolving research traditions

Abstract

Purpose

To examine how conceptualizations of caregiver adaptation to traumatic brain injury have changed over time. The objectives were to identify research traditions, adaptive outcomes assessed in these traditions, and psychosocial variables associated with adaptive outcomes.

Methods

A meta-narrative review was conducted on 29 identified articles published over a 25-year period (1990–2015).

Results

Four traditions were identified with varying storylines. Burden/Strain (1990–1999) focused on adjustment as the absence of a negative state. Appraisal/Coping (2000–2005) recognized that caregiving experiences could be both positive and negative. In Quality of Life (2006–2011), there was increasing recognition that both personal and contextual factors influence adaptation. Resiliency (2012–2015) used the term “resiliency” as an organizing framework for a broad group of variables and assessed resilience, quality of life, community re-integration, and life/marital satisfaction.

Conclusions

These storylines reflect an evolution from problem-based to strengths-based conceptualizations, from interest in crisis to considering adaptation as a process unfolding over time, from quantitative to qualitative methods, and towards more holistic views of adaptive outcomes. Variables significantly associated with outcomes across the traditions included social support, reframing and positive appraisal, and behavior strategies. Implications concern the need for longitudinal studies, measurement of environmental factors, and the development of best practices.

IMPLICATIONS FOR REHABILITATION

• Research studies on the adaptation of caregivers for people with TBI have evolved from a focus on burden, to coping and quality of life, and most recently to resiliency.

• It is important to assist caregivers of people with TBI to obtain social support, find positive ways of viewing their experiences, and take part in respite and enjoyed activities.

• Service providers can help caregivers by adopting a strengths-based perspective to help them recognize available resources, supports, and opportunities.

• Since caregiver adaptation changes over time, service providers should pay attention to changes in family circumstances and the mental health of caregivers.

Keywords:

• Burden
• coping
• parent
• resiliency
• review
• stress

Acknowledgements

We extend our appreciation to Pui Ying, the librarian at Holland Bloorview Kids Rehabilitation Hospital.

Disclosure statement

The authors alone are responsible for the content and writing of this paper.

Additional information

Funding

This study was supported by the Bloorview Research Institute’s Ward Summer Student program. Gillian King holds the Canada Research Chair (Tier 1) in Optimal Care for Children with Disabilities, funded by the Canadian Institutes of Health Research. This chair is supported by matching funds from the Kimel Family Opportunities Fund through the Holland Bloorview Kids Rehabilitation Hospital Foundation. Emily Nalder holds the Canada Research Chair (Tier 2) in Resiliency and Rehabilitation, funded by the Canadian Institutes of Health Research, as well as the March of Dimes Canada Paul J. J. Martin Early Career Professorship.