Siblings’ life aspirations in the context of Duchenne muscular dystrophy: a mixed-methods case-control study

Schwartz, Carolyn E.; Biletch, Elijah; Stuart, Richard B.; Rapkin, Bruce D.

doi:10.1186/s41687-022-00501-7

Cited by 3 publications

(1 citation statement)

References 34 publications

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“…These findings are consistent with previous studies on DMD (Read et al, 2011; Schwartz et al, 2022), which have shown that DMD can have both negative and positive impacts on other family members. These impacts include unequal parental attention and availability to siblings, as well as positive effects such as increased family cohesion, knowledge, and maturity in siblings.…”

Section: Discussionsupporting

confidence: 93%

Young Adults and Parents’ Coping With Duchenne/Becker Muscular Dystrophy: A Focus Group Study

Makhoul Khoury,

Rosenne,

Mischel

et al. 2024

Emerging Adulthood

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Duchenne and Becker muscular dystrophy (DBMD) are genetic disorders that are characterized by progressive muscle weakness. As such, individuals with DBMD may need constant assistance with medical and physical care, which is oftenE provided by their family members. An essential part of patients’ medical management and their parents’ care is to develop appropriate coping strategies. This study focuses on young adults in the developmental period of emerging adulthood and parents, aiming to obtain an in-depth understanding of their coping strategies with DBMD. Qualitative methodology was employed and implemented within three focus groups: one group of young adults (ages 18–23) and two groups of parents. The findings of themes related to young adults and parents coping with DBMD included negative emotions alongside positive perceptions, hope, coping with loneliness in the context of being different, and familial adjustments. Our findings revealed similarities and differences in relation to both young adults’ and parents’ coping strategies, referred to in this study as “adjustments”. It may be advantageous to have an interdisciplinary professional team (i.e., physicians, nurses, and psychologists/social workers) intervene with young adults and parents to get a comprehensive understanding of the impact DBMD has on the multidimensional aspects of their daily functioning and the “adjustments” they employ to cope with DBMD.

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Section: Discussionsupporting

confidence: 93%

Young Adults and Parents’ Coping With Duchenne/Becker Muscular Dystrophy: A Focus Group Study

Makhoul Khoury,

Rosenne,

Mischel

et al. 2024

Emerging Adulthood

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Siblings’ life aspirations in the context of Duchenne muscular dystrophy: a mixed-methods case-control study

Schwartz

Biletch

Stuart

et al. 2022

J Patient Rep Outcomes

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Background The inevitable and progressive loss of independence in Duchenne Muscular Dystrophy (DMD) patients may have an impact on their siblings’ life aspirations. The present cross-sectional case-control study investigated how aspirations differed between brothers and sisters of people with DMD and a stratified comparison group of nationally representative children/adults. Methods A web-based survey was administered October through December 2020. Aspirations were measured using qualitative (open-ended) and quantitative (closed-ended) questions. Qualitative prompts asked participants about wishes, goals, and how they define quality of life (QOL) and were coded by six trained raters. Quantitative questions included 29 closed-ended goal-delineation items from the QOL Appraisal Profilev2. These data were analyzed using multivariate models adjusting for propensity scores (demographic differences) and testing for the effects of role (sibling or comparison), age, and role-by-age interactions. Results The study sample of DMD sibling (n = 349) and comparison (n = 619) participants provided open-ended data on 968 wishes statements, 390 QOL-definition statements, and 328 goals statements. Inter-rater reliability (kappa = 0.77) reflected good agreement between raters. Results of both open-ended and closed-ended data, and of both unadjusted and adjusted analyses suggested that DMD siblings, with age, were more focused on DMD-related, family/community, intimacy, and work concerns than their peers. They were less focused on improving mood, independence, pragmatics, or subtle fine-tuning of problem-solving in life. In contrast, the comparison group was more focused on goals related to growth, purpose, and reflection. Some group differences were amplified amongst older siblings. Conclusion This is the first study to evaluate DMD siblings’ aspirations in comparison to their peers. While there were many similarities between groups, the differences in aspirations between DMD siblings and their peers encompassed not just DMD, family/community, and intimacy, but also more work concerns. Directions for future quantitative and qualitative research are discussed.

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Depression trajectories during the COVID-19 pandemic: a secondary analysis of the impact of cognitive-appraisal processes

Schwartz

Borowiec

Rapkin

2023

J Patient Rep Outcomes

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Purpose This study characterized depression trajectories during the COVID pandemic and investigated how appraisal and changes in appraisal over time related to these depression trajectories. Methods This longitudinal study of the psychosocial impact of the COVID-19 pandemic included 771 people with data at three timepoints over 15.5 months. The depression index was validated using item-response-theory methods and receiver-operating-characteristic curve analysis. The Quality of Life (QOL) Appraisal Profilev2 Short-Form assessed cognitive-appraisal processes. Sequence analysis characterized depression-trajectory groups, and random effects models examined appraisal main effects, appraisal-by-group, and appraisal-by-group-by-time interactions. Results Sequence analysis generated six trajectory groups: Stably Well (n = 241), Stably Depressed (n = 299), Worsening (n = 79), Improving (n = 83), Fluctuating Pattern 1 (No–Yes–No; n = 41), and Fluctuating Pattern 2 (Yes–No–Yes; n = 28). While all groups engaged in negative appraisal processes when they were depressed, the Stably Depressed group consistently focused on negative aspects of their life. Response-shift effects were revealed such that there were differences in the appraisal-depression relationship over time for standards of comparison and recent changes for the Stably Depressed, and in health goals for those Getting Better. Conclusion The present work is, to our knowledge, the first study of response-shift effects in depression. During these first 15.5 pandemic months, group differences highlighted the connection between negative appraisals and depression, and response-shift effects in these relationships over time. Egregious life circumstances may play a lesser role for the Stably Depressed but a greater role for people who have transient periods of depression as well as for those with improving trajectories (i.e., endogenous vs. reactive depression). How one thinks about QOL is intrinsically linked to mental health, with clear clinical implications.

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Siblings’ life aspirations in the context of Duchenne muscular dystrophy: a mixed-methods case-control study

Cited by 3 publications

References 34 publications

Young Adults and Parents’ Coping With Duchenne/Becker Muscular Dystrophy: A Focus Group Study

Young Adults and Parents’ Coping With Duchenne/Becker Muscular Dystrophy: A Focus Group Study

Siblings’ life aspirations in the context of Duchenne muscular dystrophy: a mixed-methods case-control study

Depression trajectories during the COVID-19 pandemic: a secondary analysis of the impact of cognitive-appraisal processes

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