Introduction: Studies have reported health-related quality-of-life impacts of Duchenne muscular dystrophy (DMD); however, further research is needed to understand how those with DMD experience their condition and how psychosocial impacts evolve over time in response to disease progression. This qualitative study explores the social and emotional implications of key transitions, challenges and adaptations throughout the disease course from the perspective of patients and family caregivers.
Methods: Semi-structured interviews were conducted with men and boys with DMD, and/or their caregivers, in the USA. Thematic analysis was used to examine patterns in data collected across the interviews.
Results: Nineteen participants were included. Three major themes were identified: (1) barriers to participation are multifaceted; (2) an emotional journey shaped by 'inevitable progression;' (3) family provides critical tangible and emotional support. This study illustrates that psychosocial impacts of DMD are shaped by knowledge of the condition's natural history alongside other factors including the extent of social barriers, personal growth and adaptation, and family support.
Conclusions: Findings provide insight into the strength and resilience with which individuals and their families respond to daily challenges and major clinical milestones and highlight the relative importance of loss of upper limb function as a transition in DMD affecting health-related quality-of-life.
Download full-text PDF |
Source |
|---|---|
| http://www.ncbi.nlm.nih.gov/pmc/articles/PMC11133021 | PMC |
| http://dx.doi.org/10.1007/s12325-024-02867-0 | DOI Listing |
Publication Analysis
Top Keywords
Similar Publications
Assessing Theoretical Considerations of Effects Within a Behavioural Obesity Treatment in Women: Implications for Medical Professional Referral.
J Eval Clin Pract
February 2025
California State University Monterey Bay, Seaside, California, USA.
Rationale: Obesity is an increasing medical issue not responding well to behavioural treatments beyond their initial weeks/months.
Aims And Objectives: Before suggesting surgical or pharmacological interventions, medical professionals might consider referrals to cost-effective, community-based behavioural treatments if stronger theoretical/empirical bases were demonstrated. Thus, evaluation of such is warranted.
Examining a brief web and longitudinal app-based intervention [Wysa] for mental health support in Singapore during the COVID-19 pandemic: mixed-methods retrospective observational study.
Front Digit Health
December 2024
MOH Office for Healthcare Transformation, Singapore, Singapore.
The COVID-19 pandemic in Singapore led to limited access to mental health services, resulting in increased distress among the population. This study explores the potential benefits of offering a digital mental health intervention (DMHI), Wysa, as a brief and longitudinal intervention as part of the mindline.sg initiative launched by the MOH Office for Healthcare Transformation in Singapore.
View Article and Find Full Text PDFCOVID-19 among migrants, refugees, and internally displaced persons: systematic review, meta-analysis and qualitative synthesis of the global empirical literature.
EClinicalMedicine
August 2024
Section Health Equity Studies & Migration, Department of Primary Care and Health Services Research, Heidelberg University Hospital, Im Neuenheimer Feld 130.3, Heidelberg 69120, Germany.
Background: Evidence amounted early that migrants, who are often side-lined in pandemic response or preparedness plans, are disproportionately affected by the COVID-19 pandemic and its consequences. However, synthesised evidence that quantifies the magnitude of inequalities in infection risk, disease outcomes, consequences of pandemic measures or that explains the underlying mechanisms is lacking.
Methods: We conducted a systematic review searching 25 databases and grey literature (12/2019 to 09/2023) and considered empirical articles covering migrants, refugees, asylum-seekers, and internally displaced persons reporting COVID-19 cases, hospitalisation, ICU admission, mortality, COVID-19 vaccination rates or health consequences of pandemic measures.
Medical therapy to treat obesity and optimize fertility in women of reproductive age: a narrative review.
Reprod Biol Endocrinol
January 2025
Departments of Internal Medicine and Obstetrics, Gynecology and Reproductive Sciences, Yale School of Medicine, 330 Cedar St, New Haven, CT, 06510, USA.
Background: Overweight and obesity-chronic illnesses in which an increase in body fat promotes adipose tissue dysfunction and abnormal fat mass resulting in adverse metabolic, biomechanical, and psychosocial health consequences-negatively impact female fertility. Adverse conception outcomes are multifactorial, ranging from poor oocyte quality and implantation issues to miscarriages and fetal health issues. However, with the advent of novel pharmacologic agents, significant weight loss can be achieved, improving the chances of healthy pregnancies, and their use should be considered during periconceptual counseling.
View Article and Find Full Text PDFExamining the Emotional and Physical Health Impact in Users of Open-Source Automated Insulin Delivery and Sources of Support: Qualitative Analysis of Patient Narratives.
J Med Internet Res
January 2025
Diabetes Management Research, Steno Diabetes Center Copenhagen, Herlev, Denmark.
Background: Although commercially developed automated insulin delivery (AID) systems have recently been approved and become available in a limited number of countries, they are not universally available, accessible, or affordable. Therefore, open-source AID systems, cocreated by an online community of people with diabetes and their families behind the hashtag #WeAreNotWaiting, have become increasingly popular.
Objective: This study focused on examining the lived experiences, physical and emotional health implications of people with diabetes following the initiation of open-source AID systems, their perceived challenges, and their sources of support, which have not been explored in the existing literature.
Want AI Summaries of new PubMed Abstracts delivered to your In-box?
Enter search terms and have AI summaries delivered each week - change queries or unsubscribe any time!