Open AccessPhotovoice as a Participatory Research Tool in Amyotrophic Lateral Sclerosis
Author(s) -
Adrianna Gunton,
Gregory Hansen,
Kerri Schellenberg
Publication year - 2021
Publication title -
journal of neuromuscular diseases
Language(s) - English
Resource type - Journals
eISSN - 2214-3602
pISSN - 2214-3599
DOI - 10.3233/jnd-200537
Subject(s) - photovoice , thematic analysis , isolation (microbiology) , feeling , medicine , qualitative research , context (archaeology) , participatory action research , health care , perspective (graphical) , disease , nursing , psychology , social psychology , social science , paleontology , pathology , artificial intelligence , sociology , computer science , microbiology and biotechnology , economics , biology , economic growth
Background: Photovoice is a qualitative research tool increasingly utilized in the healthcare field to understand the illness experience from the patient and caregiver perspective. This is the first study to evaluate photovoice in the context of amyotrophic lateral sclerosis (ALS). Objective: A patient and caregiver centered research tool was utilized to gain a greater understanding of challenges faced when living with ALS. Methods: Eight patients and three corresponding caregivers participating by taking photographs, writing descriptive text, and participating in individual and group interviews. Inductive thematic analysis was employed to uncover recurring themes. Results: Five main themes were identified; 1) facing the diagnosis, 2) loss of function, 3) isolation, 4) health system challenges, and 5) hope. Despite the devasting impact of ALS, the majority of participants reported a surprising amount of positivity in the face of receiving this difficult diagnosis, and demonstrated incredible creativity and adaptability to meet the ensuing loss of function. However, patients and caregivers discussed feelings of isolation and health care system challenges. The importance of hope was a strong and recurring theme. Conclusions: The photovoice research tool demonstrates the profound resilience of these participants, and challenges the medical community to find ways of fostering positivity and hope throughout the ALS disease course. Further clinic and community resources, education, and supports are needed to combat the sense of isolation and health care system challenges experienced by patients and their caregivers.