Table 1.

Selected examples of qualitative studies in rheumatology.

ReferenceTopicApproachData CollectionData AnalysisMain FindingsImplications for Clinical Care or Policy
Singh, et al78Gout self- management among African American male veterans with high medication adherenceNRSemistructured interviewsThematic analysis, content analysisFear of the severe and debilitating pain of gout and self-confidence from having a military-like discipline helped veterans adhere to medications and lifestyle changes. Maintaining a positive outlook and accepting the diagnosis of gout allowed participants to embrace changes in their daily routines.Emphasizing self-discipline, positivity, and disease acceptance through patient narratives could facilitate better gout self- management.
Flurey, et al90Experiences and coping styles of men with RANRFocus groupsThematic analysisMen with RA felt angry, embarrassed, and helpless by their reduction in strength, ability to work, performance of household duties, or ability to play with children. Participants coped by being stoic or reacted by engaging in destructive behaviours, withdrawing, and concealing their arthritis.Health professionals should ask men explicitly about their psychological and emotional well-being and be aware that RA can threaten masculine roles and identity. Support could take the form of purposeful information-oriented sessions with other patients with RA.
Hart, et al91How young people (aged 16–25 yrs) with inflammatory arthritis evaluate th risks and benefits of treatmentGrounded theorySemistructured interviews, recorded consultations, focus groupsGrounded theory analysisYoung people aspired to live a “normal” life. However, treatment schedules and side effects could be highly intrusive, diminish well-being, and compound feelings of being different. Changes to treatment could force young people to confront their illness and heighten distress about uncertainties of the future. Participants wished for a relatively simple and stable treatment regimen that improved symptoms and had sid effects that posed minimal restrictions.Health professionals should elicit young people’s priorities and concerns regarding their treatment and address the effect of treatment on their ideas of a “normal" life such as relationships, education, work, and physical appearance.
Shaw, et al26The development of resilience among patients with RAEthnography/narrative inquirySemistructured interviews, observations of participants’ living environment and routinesNarrative analysisResilience was cultivated through internally directed emotional management strategies and externally directed behaviours. This included adopting a mindset of being in control of their RA, remaining calm during challenges such as medication-related complications, and positive reframing and focus on abilities rather than limitations. Offering support to others through community service, engaging in enjoyable hobbies and activities, or using humor in social interactions about limitations posed from RA allowed patients to feel valuable, satisfied, and connected to others.Behavioural interventions or social support programs can promote resilience by utilizing externally and internally directed management strategies identified in the study.
Tunnicliffe, et al70Healthcare and research priorities of adolescent and young adults with SLEMixed methods studySemistructured interviews, focus groupsThematic analysis, descriptive statistics for votesService shortfalls including timely diagnosis of SLE worsened symptoms and caused anxiety, and lack of culturally relevant educational materials made it difficult for participants to understand and explain their illness to family and friends. Participants strongly emphasized the effect of SLE on psychological health including reduced self-esteem, social withdrawal, and fear of being unable to achieve future vocational and family goals. Participants also wanted to reduce the psychological, emotional, and financial burden SLE imposed on their family, friends, and other patients with life-disrupting manifestations of SLE.Research and clinical resource allocation should address gaps in service provision and incorporate strategies to alleviate anxiety and efficient use of resources to minimize the effect of SLE on family, friends, as well as the wider population of patients with SLE.
Sumpton, et al92Patients’ perspectives of SScNRSemistructured interviewsThematic analysisSSc imposes major physical and social restrictions that impair patients’ identity and self-esteem. Insecurities and anxiety in care arise from ambiguities about the cause, diagnosis, and prognosis of the disease.Clinical care for patients with SSc can be optimized by providing psychosocial care and improving communication and education around the concerns regarding disease prognosis and management.
Hewlett, et al93RA patients’ perspectives of flareNRFocus groupsThematic analysisFlare incorporated an individual cluster of symptoms including severe, unrelenting, and multijoint pain, dramatic and extreme level of stiffness, fatigue that was unlike normal RA fatigue, systemic flu-like symptoms, and cognitive shut down The symptoms profoundly compromised simple daily functions and caused emotional distress to the point of wanting to cut off join or die for some. Patients increased the usual level of self-management and would seek professional help when they were still unable to control their multiple symptoms or run their normal lives.Assessment of flare that includes these patient experiences can help patients and clinicians recognize early warning signs and enhance communication between patients and professionals.
  • NR: not reported; RA: rheumatoid arthritis; SLE: systemic lupus erythematosus; SSc: systemic sclerosis.