RESUMEN
Objective: This proof-of-concept study aimed to explore the acceptability and potential benefit of a self-guided online self-compassion intervention to aid resilient coping and reduce emotional distress among patients and caregivers living with ALS. Methods: A single-arm pilot study was conducted in 20 adults living with ALS either as a patient or as a caregiver. Acceptability was examined using questionnaires (n = 20) and semi-structured interviews (n = 9). Potential benefit was assessed as changes in self-compassion, self-criticism and emotional distress, determined using psychological questionnaires at 3 and 6 weeks. Questionnaires were analyzed using linear mixed-effects models and interview data using inductive thematic analysis. Results: Out of 20 participants who started the intervention, 16 completed the study (80%). The majority of study completers (12/16) were satisfied with the intervention, but the data suggest room for improvement in terms of personalization. Qualitative data revealed multiple psychological benefits of using the intervention, including self-kindness, emotional self-awareness and savoring. Although not statistically significant, quantitative data showed positive trends with increased self-compassion (mean difference: 2.07; 95% CI: -.5.76 - 1.63) and reduced self-criticism (mean difference: -2.62; 95% CI: -.1.97 - 7.23) and emotional distress (mean difference: -2.49; 95% CI: -.51 - 5.50) at week 6 compared to baseline. Conclusions: The findings suggest that a self-compassion intervention is acceptable to people living with ALS, but its beneficial effects and the mechanisms involved have yet to be established in larger and more diverse samples, using controlled designs.
RESUMEN
OBJECTIVE: Previous work suggests that stigma negatively impacts quality of life in people living with amyotrophic lateral sclerosis (ALS) and progressive muscular atrophy (PMA). This study aimed to explore experiences of enacted stigma (experienced discrimination) and felt stigma (shame, fear of exclusion) among Dutch ALS/PMA patients and their caregivers. A secondary aim was to assess associated factors of enacted/felt stigma among patients. METHODS: A two-phase mixed-methods study was conducted, comprising cross-sectional surveys among 193 ALS/PMA patients and 87 caregivers, and semi-structured interviews with 8 ALS/PMA patients and 11 family caregivers. Descriptive and multivariable regression analyses along with qualitative content analysis were used to analyze survey and interview data. RESULTS: Survey findings indicate that patients and caregivers experience enacted and felt stigma. Interviews with both patients and caregivers revealed two manifestations of enacted stigma, including social exclusion (e.g. relationship distancing) and stigmatizing attitudes/behaviors displayed by others (e.g. staring), and three manifestations of felt stigma, including alienation (e.g. shame/embarrassment), perceived discrimination (e.g. feeling judged) and anticipated stigma (e.g. fear of exclusion). Patients and caregivers engaged in concealing and resisting responses to stigma. More bulbar symptoms, King's clinical stage, younger age and living without a partner were significantly associated with enacted/felt stigma among patients. CONCLUSIONS: Our findings reveal a range of perceptions and experiences underlying enacted/felt stigma among ALS/PMA patients and their caregivers that may serve as conversation topics in clinical practice. Future research may shed more light on the determinants as well as the consequences of stigmatizing experiences among patients and caregivers.