The Relationship Between Social Support, Social Constraint, and Psychological Adjustment for Patients with Rare Autoimmune Disease
Open accessAbstract
Our goals were to describe the balance of social support to negative social interactions (i.e. social constraint) for autoimmune disease patients and determine whether support and constraint from spouses and non-spousal family and friends interact to influence patients' psychological adjustment. Using crosssectional survey data from 109 married vasculitis and lupus patients, we found that patients reported that spouses and family/friends provided more social support than social constraint. In regression models, constraint from spouses (β= -0.45, p<0.01) and family/friends (β= -0.89, p<0.001) were associated with worse patient psychological adjustment. A significant 3-way interaction revealed that patients with low spousal support had worse psychological adjustment as the levels of family and friend support increased. In contrast, patients with high levels of spousal support reported better psychological adjustment as family and friend support increased. Future longitudinal studies may help to elucidate the complex interplay between constraint and support from spouses, family, and friends.
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The quality of life of patients with ROD is lower than for the general population in three key areas: physical limitations, social isolation and stigmatization, and emotional distress.
“The quality of life of patients with ROD is lower than for the general population in three key areas: physical limitations (movements, pain, sleep problems, attention or concentration problems that affect daily life), [3–9], social isolation and stigmatization [3, 7, 9–13], and emotional distress (anger, depression, anxiety, hopelessness, loss, lack of control, abandonment) [3, 5, 8, 14–17].”
From Connect-ROD – development and qualitative evaluation of a community-based group intervention to support well-being in patients with a rare or orphan disease (2024) · cites this paper as [11]
The Introduction (page unavailable) says people with chronic disease are likely to experience anxiety and depression, and the Discussion links negative social interactions with poorer psychological adjustment in patients with lupus or vasculitis. The paper does not establish that patients with rare diseases have lower quality of life than the general population across the three stated areas; in particular, it does not substantiate the physical-limitations or stigmatization components. (LLM, conf=0.78)
Experimental — accuracy not yet measuredPatients with ROD experience social isolation and often have difficulty finding a support community because of the rarity of their condition.
“Patients experience social isolation and often have difficulty finding a support community because of the rarity of their condition [3, 10, 11].”
From Connect-ROD – development and qualitative evaluation of a community-based group intervention to support well-being in patients with a rare or orphan disease (2024) · cites this paper as [11]
The Introduction discusses support from spouses, family, and friends, and the Discussion examines social constraints among patients with rare autoimmune conditions (pages not provided). Neither section addresses social isolation or difficulty finding a support community because a condition is rare. Searches for those concepts found no passage that does. (LLM, conf=0.72)
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- Authors
- Carpenter, D. M., Thorpe, C. T., Alexander, D. S., Sage, A. J., Lewis, M., Hogan, S. L., Geryk, L. L., & DeVellis, R. F.
- Affiliations
- University of North Carolina at Asheville (US)
- University of Pittsburgh (US)
- RTI International (US)
- University of North Carolina at Chapel Hill (US)
- ORCID
- Venue
- Current Rheumatology Reviews
- Publisher
- Bentham Science Publishers Ltd.
- Published
- 2016-10-20
- Volume
- 12
- Issue
- 3
- Pages
- 232-238
- ISSN
- 1573-3971 (ISSN-L)
- PMC
- PMC5953426
- OpenAlex
- W2480304270
- Cited by
- 65
- References
- 25
- Citations by year
- 2026: 3 · 2024: 3 · 2022: 1 · 2021: 1 · 2020: 56 · 2019: 1
- FWCI
- 0.35
- Type
- journal article
- Language
- en
- Open access
- green
- www.ncbi.nlm.nih.gov
- Locations
- Current Rheumatology Reviews (publishedVersion)
- PubMed (publishedVersion)
- Europe PMC (PubMed Central) (acceptedVersion)
- PubMed Central (acceptedVersion)
- Carolina Digital Repository (University of North Carolina at Chapel Hill) (submittedVersion)
- UNC Libraries
- Funders
- National Institutes of Health (5t32dk007750-21)
- National Institute of Diabetes and Digestive and Kidney Diseases (P01DK058335, T32-DK007750)
- National Institute of Arthritis and Musculoskeletal and Skin Diseases (P60AR049465)
- Topics
- Health Sciences › Medicine › Rheumatology › Systemic Lupus Erythematosus Research
- Social Sciences › Psychology › Social Psychology › Attachment and Relationship Dynamics
- Health Sciences › Medicine › Rheumatology › Rheumatoid Arthritis Research and Therapies
- Keywords
- social support, social constraints, psychological adjustment, rare autoimmune diseases, vasculitis, lupus, spousal support, family and friend support, social interaction, three-way interaction
- MeSH terms
- Emotional Adjustment, Adult, Aged, Cross-Sectional Studies, Female, Humans, Longitudinal Studies, Lupus Erythematosus, Systemic, Male, Middle Aged, Social Support, Spouses, Rare Diseases, Systemic Vasculitis
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