A Scoping Review of Photo-Based Approaches to Understand the Lived Experience of Children with Medical Complexity,Their Family Caregivers,and Clinicians

Abstract

Background:

Children with medical complexity (CMC) have chronic conditions often involving technology assistance, care from family caregivers and clinicians, and substantial health care needs. Previous studies have identified communication gaps between family caregivers of CMC and their child’s clinicians, as well as a need for clinicians to better understand their lived experience. Approaches using photos may be a way for CMC and their family caregivers to share their experience with clinicians.

Objective:

To conduct a scoping review of the literature and describe findings from studies using photo-based approaches with CMC, their family caregivers, and clinicians.

Methods:

PubMed, PsycInfo, and Web of Science were searched following Joanna Briggs Institute scoping review guidelines. Abstract screening and full-text reviews were performed using Covidence software. Studies were eligible if they: (1) included CMC up to age 25, and/or their family caregivers, and/or clinicians; (2) used a photo-based approach (photo-elicitation, photovoice, photo-narrative); (3) were published in the last 20 years; and (4) were written in English.

Results:

One hundred twenty-three studies were identified, including 83 identified through an initial search with a research center librarian, with additional studies identified through hand-searching. A final of 25 studies were included. Participants found photo-based approaches to sharing their experience to be both useful and enjoyable. A synthesis of the data presented in these studies yielded nine themes/dimensions describing the multidimensional experience of CMC, their family caregivers, and clinicians. These dimensions were organized into three areas: relational (independence vs. dependency, deepening relationships vs. straining relationships, and inclusion vs. stigmatization), navigational (feeling typical vs. feeling different, advocacy vs. subjugation, and participation vs. barriers), and emotional (predictability vs. uncertainty, well-being vs. exhaustion, and growth vs. loss).

Conclusion:

This scoping review describes how photo-based approaches may be used to explore the multidimensional experience of CMC, their family caregivers, and clinicians.