The impact of vasculitis on patients' social participation and friendships.
OBJECTIVE
Our objective is to explore how vasculitis affects patients' friendships and social participation.


METHODS
Vasculitis patients (n=221) completed an online questionnaire that asked if, and how, relationships with friends have changed since receiving a vasculitis diagnosis. Participants' written responses were imported into Atlas.ti, and two independent researchers used both structured and unstructured coding to identify themes. After reaching 100% consensus on the themes present in each participant's responses, the coders determined how themes were interrelated across participants.


RESULTS
Over half of patients (52%) expressed that vasculitis negatively impacted their friendships and 25% noted a negative impact on their social participation. At times, this negative impact was related to structural changes in patients' social networks due to loss of friendships. Reduced social participation was also associated with friends' inability to understand vasculitis and its effects, vasculitis-related fatigue, and lifestyle changes such as not being able to drink alcohol and avoiding infection-prone events. Additionally, patients withdrew from social engagements due to fatigue or because of physical symptoms and side effects.


CONCLUSIONS
The unique circumstances associated with a rare chronic illness like vasculitis can create significant barriers to friendships, including loss of these relationships. Interventions designed to help patients cope with the social impact of vasculitis are implicated, especially if they increase patients' ability to engage in dialogue about their illness with their friends.
Division of Pharmaceutical Outcomes and Policy, Eshelman School of Pharmacy, University of North Carolina, Chapel Hill, NC, USA. dmcarpenter@unc.edu
Delesha M
DM
Carpenter
Amy E
AE
Meador
Emily A
EA
Elstad
Susan L
SL
Hogan
Robert F
RF
DeVellis
D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D003142:Communication; D032882:Comprehension; D017281:Cost of Illness; D005260:Female; D033062:Friends; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D020407:Internet; D008019:Life Style; D008297:Male; D008875:Middle Aged; D009657:North Carolina; D011788:Quality of Life; D058992:Social Participation; D012944:Social Support; D011795:Surveys and Questionnaires; D014657:Vasculitis / Q000150:complications / Q000175:diagnosis / Q000523:psychology*; D055815:Young Adult