Photovoice as a Participatory Research Tool in Amyotrophic Lateral Sclerosis

Abstract

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.

Exploring the Use of Photovoice in Understanding the Lived Experience of Neurological Conditions: A Scoping Review and Reflexive Thematic Analysis

“…Tornbom et al (2019) also found that many years after a stroke, participants still experienced improvements through persistent rehabilitation, and wished for more interactive rehabilitation training, including collaborative forms of rehabilitation being suggested in the long-term phase of stroke. In addition, there seemed to be a lack of understanding and consideration toward people living with a neurological condition by the public, family, and the medical profession (Balakrishnan et al, 2017; Barclay-Goddard et al, 2012; Evans et al, 2016; Genoe & Dupuis, 2011; Gunton et al, 2021; LaDonna & Venance, 2015; Maratos et al, 2016; Roger et al, 2018; van Heijningen et al, 2021). Multiple misunderstandings were highlighted by a person with a neurological condition missing an appointment with the stroke team because of their problem remembering to turn up for the appointment, and this person living with stroke thereafter incurred bills for this missed visit (Tornbom et al, 2019).…”

“…Insufficiencies in healthcare and rehabilitation issues were most apparent in terms of rehabilitation, treatment, and care challenges. These system-level (healthcare system) challenges highlighted a need for more support and timely care for people living with a neurological condition (e.g., Amyotrophic Lateral Sclerosis, myotonic dystrophy, stroke, Parkinson’s disease, cerebral palsy) (Gunton et al, 2021; LaDonna et al, 2015; Maratos et al, 2016; Roger et al, 2018; Tornbom et al, 2019; van Heijningen et al, 2021):“You get help for six months after the stroke, and then you get no more help. The speech therapy stuff, I have had to sort out myself.…”

“…Physical environmental challenges were also illuminated and were presented in the photographs and accompanying narrative by documented obstructions and other obstacles that caused problems to the individual living with a neurological condition (Balakrishnan et al, 2017; Barclay-Goddard et al, 2012; Bishop et al, 2013; Evans et al, 2016; Genoe & Dupuis, 2013; Gunton et al, 2021; Maratos et al, 2016; Seetharaman et al, 2021; Tornbom et al, 2019; van Heijningen et al, 2021; Walker et al, 2020).…”

Development and Validation of a Canine Health-Related Quality of Life Questionnaire and a Human–Canine Bond Questionnaire for Use in Veterinary Practice

“…Photographic collage is a projective technique in which participants project their opinions and beliefs onto images that they select with respect to a particular topic. This allows participants to articulate their thoughts and experiences at a subconscious level that is difficult to reach with the direct questioning techniques frequently used in qualitative interviews [18][19][20]. For the focus groups, the participants were asked to choose several photographs and write a brief description explaining why they chose each photograph to create two photographic collages, one collage depicting the concepts they perceived as important to a dog's HRQoL and a second collage for the HCB.…”

Amyotrophic Lateral Sclerosis and Its Management during the COVID-19 Pandemic: A Qualitative Study with Thematic Analysis of Patients and Caregivers Who Participated in Self-Help Groups

“…Living with an incurable disease such as ALS can induce negative thoughts and concerns about physical, psychosocial, and existential issues [5]. The emotional distress triggered by the illness is primarily attributed to the loss of independence and the gradual decline in functions and abilities associated with it [6,7]. Patients frequently grapple with emotions like fear, embarrassment, shame, distress, anger, guilt, and a profound sense of hopelessness.…”