Abstract
Lived experiences of people with amyotrophic lateral sclerosis (pALS) who have percutaneous endoscopic gastrostomy (PEG) are explored. Outcomes will provide insight into the factors that guide the decision-making process and the impact on occupation.
Primary Author and Speaker: Gioia Ciani
Additional Authors and Speakers: Gary Grimaldi, Ian Sarnataro
This aim of this study is to investigate the lived experiences of people with amyotrophic lateral sclerosis (pALS), their decision for percutaneous endoscopic gastrostomy (PEG) feeding tube insertion as an alternate feeding method, and the occupational changes that result after this event. This study used a qualitative-descriptive, phenomenological design. Purposive sampling was used to recruit six pALS from ALS support groups. Participants were pALS that utilized a PEG tube and understood and spoke English. Data was collected through semi-structured interviews. Researchers transcribed and coded all interviews to determine emergent themes. Five major categories of themes were found: psychosocial factors, quality of life, routines, engagement in occupations, lack of training and education on the PEG. The areas of occupation that were most commonly identified include: activities of daily living, health management, rest and sleep, leisure, and social participation. Psychosocial factors included anxiety, fear, isolation, pain, trust, and coping. Qualitative comments included, ‘At first it was brutal, I was completely freaked out psychologically’ ‘Gettng dressed is really scary’ ‘It was simply life or death’ ‘I miss going out to eat with friends’ ‘Finding a routine that worked was difficult’ ‘I can't manage the feedings alone’. Understanding experiences is imperative to effective OT practice. Occupational therapists are uniquely poised to work with people who have PEG tubes to enhance occupational engagement, health management, education on PEG tube management for safe ADLs and self-feeding when appropriate, and provide psychosocial intervention.
American Occupational Therapy Association. (2020). Occupational therapy practice framework: Domain and process—4th. Ed. The American Journal of Occupational Therapy, 74(Supplement_2). https://doi.org/10.5014/ajot.2020.74s2001
Andersen, P. M., Kuzma-Kozakiewicz, M., Keller, J., Aho-Oezhan, H. E. A., Ciecwierska, K., Szejko, N., Vázquez, C., Böhm, S., Badura-Lotter, G., Meyer, T., Petri, S., Linse, K., Hermann, A., Semb, O., Stenberg, E., Nackberg, S., Dorst, J., Uttner, I., Häggström, A.-C., … Lulé, D. (2018). Therapeutic decisions in ALS patients: Cross-cultural differences and clinical implications. Journal of Neurology, 265(7), 1600–1606. https://doi.org/10.1007/s00415-018-8861-4