Social Role Experiences of Women Living with Rheumatoid Arthritis

Abstract

This study was designed as the qualitative arm of a larger quantitative study (N = 156) of the relationships among social role quality, physical health, and psychological well-being of women living with rheumatoid arthritis (RA). A subset of 20 midlife and late-life women from this larger sample participated in semistructured interviews with the specific aims of investigating how fulfilling they found social roles to be, including their spouse, mother, worker, and homemaker roles, while contending with RA, and what circumstances made social role experiences more positive. The results of the current followup qualitative study illustrate how difficult it can be to fulfill social roles during exacerbations of the illness in their formative adult years. The circumstance that best facilitated their positive experience in social roles was the unburdening of social role obligations as they grew older. Implications for nursing practice are discussed.

Redefined by illness: meta-ethnography of qualitative studies on the experience of rheumatoid arthritis

“…., awkward [and] ugly'' [35]. Given the unpredictable nature of the symptoms of RA, this ''social inadequacy'' [36] was seen to impose ''periodic emotional burdens'' and restrictions [37] ''permeating every sphere of life'' [33]. People with RA lost their independence and did not relish dependency.…”

“…''Choose to leave things undone'' (p. 383). ''It's what's best for your illness and that's the driving force behind most decisions'' (p. 385) [43] ''To make the best of a bad situation'' (p. 661) [30] Use of time (pacing, planning, prioritization) [48] ''Trying to 'get on with things''' (p. 1578) [44] Body management (''You can fight it''); Mind management (''I can't do that''); Mind-body management (''Don't live against it, live with it''); Pacing (p. 1046) [35] ''They learned to live with [it]'' (p. 42); Conserve energy (p. 42); Transformation [36] ''I get through the day. I don't have anything else to give'' (p. 39) Unburdening of social role obligations (p. 43) [40] ''I have almost learned to live with it'' (p. 109) [33] Pacing; re-prioritizing activities (p. 701) …”

“…These and other factors (''lack of barriers'', ''personal dismissal'' and ''environmental impediments'' [37]) were seen to fluctuate alongside RA's symptoms. One study of women suggested that it was easier for older women to achieve control in this context because they had fewer social role obligations than their younger counterparts [36]. The nature of the disease meant that efforts at control were not always successful, so that, as the recipient to one study put it, ''Sometimes I can, sometimes I can't'' [42].…”

Influences of the social environment on engagement in occupations: The experience of persons with rheumatoid arthritis

“…Furthermore, the variation in the level of pain and ability from one period to another and the unpredictability of the progression of the disease affect their planning concerning their future occupations (26). These changes relate to how people's occupations influence their interactions and relations with others (27). Thus, this literature review of individuals with RA has revealed that existing research has concentrated on which occupations they engage in or in which their engagement is restricted.…”

The health and life experiences of mothers with rheumatoid arthritis: A phenomenological study

“…RA is a chronic infl ammatory disease, mainly affecting peripheral joints (Arnett et al, 1988), and is characterized by periods of exacerbation and remission (Plach et al, 2004). RA attacks all age groups and is three times more common in women than in men (Symmons et al, 2002).…”