Abstract
This study investigated QoL factors for persons with ALS and their caregivers as a unit. People ALS and their caregivers completed the Schedule for the Evaluation of Quality of Life—Direct Weight jointly to identify QoL factors most important to the dyad. The three most commonly chosen QoL factors include family, spirituality, and leisure. Identifying key QoL factors will allow OTs to provide improved client- and family-centered care that is more holistic.
Primary Author and Speaker: Shannon Mumper
Additional Authors and Speakers: Hannah Brown, Bentlie Grice, Tyler Huddleston, Kristen Moon, Wendy Podber
Contributing Authors: Stephanie Johnson
The purpose of this research study was to identify joint quality of life (QoL) factors within the person with ALS (PALS) and caregiver (CG). There is a paucity of literature and evidence for factors impacting the dyad currently. By identifying key factors within dyads, healthcare providers may be better able to provide improved care that is more holistic in nature.
A mixed methods study design was used for the purpose of this study in order to collect data from the dyad regarding joint QoL factors. Subjects were selected via convenience sampling at a local ALS clinic during their regularly scheduled clinic day; a primary caregiver must have been present for inclusion. PALS and the primary CG are considered a dyad relationship and single unit during data collection.
A semi-structured interview, the Schedule for the Evaluation of Quality of Life Direct Weight (SEIQoL-DW), was administered jointly to the dyad to assess QoL. The dyad identified the five most important factors affecting joint QoL and identified current satisfaction and importance of each area. In order to categorize the qualitative interview data, researchers read through participant responses and began identifying general categories for responses, with final categorization decided once all researchers agreed on the interpretation. Quantitative data from the SEIQoL was used to average the weights/ importance toward QoL, of each response. Further planned quantitative analyses includes independent t-tests to identify statistical differences between PALS and caregivers.
A total of 22 dyads were enrolled in this study. Qualitative results include dyads identifying 27 total QoL factors, which were comprised into 14 categories, including family (having spouse/partner/children/grandchildren in life) (n=19 dyads; weight= 13.1% overall QoL importance); spirituality (involved in church, formal worship) (n=14; weight =15.7%); and leisure (participation in activity with family) (n=13; weight =). Other categories identified by dyads included, pets, rest, and work, finances, humor, and socialization with others. Quantitative analyses are planned following completion of all qualitative analyses.
Preliminary results are identifying factors that impacted the dyad as a whole, resulting in QoL factors that were more focused on conjoined activity and less on individual hobbies. By discovering specific areas of importance to the dyad, medical professionals can better meet the needs of both individuals. The diagnosis of ALS greatly affects both the PALS and the caregiver. This means that healthcare providers should be cognizant of addressing the factors of QoL most commonly identified within dyads in the future in order to provide the best client-centered care. Occupational therapists have the ability to collaborate with the dyad to prioritize which activities mean the most to both of them. This will enable the PALS to utilize their potentially limited energy to participate in activities found to be most important to the dyad. Occupational therapists have the potential to assist the dyad in adapting activities, if necessary, through the use various strategies, such as with assistive devices and technology, routine modifications, or energy conservation techniques; through a client/family centered care approach, improvement in QoL for the dyad is possible by identifying key factors and then assisting the dyad to participate in activities that they may not be able to otherwise.
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