Forty-five parents of children with autism, cerebral palsy, Down syndrome, and sickle cell disease participated in 8 focus groups. Parents discussed how they, the child with the disability, and the siblings addressed community perceptions about the child's disability. Themes evolving from the interviews included (a) support and lack of support, (b) inclusion and exclusion, and (c) the family members' roles during their interactions with the community. Parents viewed their roles in the community as (a) advocating, (b) educating, (c) informing, (d) ignoring, and (e) hiding. The relationship between themes is presented, and the relationship between themes and parent empowerment is discussed as well as the ways in which the themes reflect underlying ableism.
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http://dx.doi.org/10.1352/1934-9556-48.4.245 | DOI Listing |
Int J Drug Policy
January 2025
MGH Institute for Technology Assessment, Harvard Medical School, Boston, MA, 02144, USA. Electronic address:
The overdose epidemic in the United States is evolving, with a rise in stimulant (cocaine and/or methamphetamine)-only and opioid and stimulant-involved overdose deaths for reasons that remain unclear. We conducted interviews and group model building workshops in Massachusetts and South Dakota. Building on these data and extant research, we identified six dynamic hypotheses, explaining changes in stimulant-involved overdose trends, visualized using causal loop diagrams.
View Article and Find Full Text PDFTo (1) establish a women's knee health consumer advisory group (CAG) via an evidence-informed process and (2) identify the CAG's research priorities to inform future projects. Mixed-methods priority-setting study. The CAG was established, grounded in a participatory action research approach and using the Patient Engagement in Research Framework, to inform a 4-phase process: (1) understand, (2) plan, (3) undertake, and (4) evaluate.
View Article and Find Full Text PDFPLoS One
January 2025
Department of Oncology, Vejle Hospital, University Hospital of Southern Denmark, Odense, Denmark.
Background: Patients with severe mental illness experience serious inequity when facing cancer treatment. They are less likely to be referred for cancer treatment following recommended guidelines and have poorer cancer survival than patients without mental illness. Relevant specialties such as psychiatry and general practice are rarely involved, and the patient perspective is rarely represented in research in the field.
View Article and Find Full Text PDFPain
January 2025
Innovation, IMPlementation And Clinical Translation (IIMPACT) in Health, University of South Australia, Kaurna Country, Adelaide, Australia.
Physiotherapists are critically positioned to integrate education into patient care, including pain science education (PSE) to enhance management and outcomes. Anecdotally, many physiotherapists report difficulty providing PSE in private practice settings. Here, we aimed to explore current PSE use, knowledge, and barriers to implementation.
View Article and Find Full Text PDFMatern Child Health J
January 2025
Department of Psychology, College of Arts and Sciences, Lehigh University, Bethlehem, USA.
Background: Research has increasingly explored maternal resilience or protective factors that enable women to achieve healthier maternal and child outcomes. However, it has not adequately examined maternal resilience using a culturally-relevant, socio-ecological lens or how it may be influenced by early-life stressors and resources. The current study contributes to the literature on maternal resilience by qualitatively exploring the salient multi-level stressors and resources experienced over the lifecourse by predominantly low-income and minoritized women.
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