Marianne Morris

Doing Synchronous Online Focus Groups With Young People Methodological Reflections

Although online focus groups are emerging as a worthwhile methodological approach for qualitative researchers, reporting has been constrained in several ways. The majority of studies report asynchronous groups, whereas others employ synchronous exchanges, the efficacy of which with young people has seldom been explored. Considering the popularity of the Internet as a communication tool for young people, this missed opportunity is surprising. Based on a series of synchronous online focus groups with young people, the authors explore why this approach might be an effective way of engaging young people with appearance-related concerns in research. In this article, they discuss the process of hosting and moderating synchronous online focus groups, highlighting some of the ethical, pragmatic, and personal challenges that might face researchers using this method. Through a reflexive approach, they intend to inform and encourage qualitative researchers to consider alternative ways of engaging young people in research.

Mixed Methods in Health Psychology Theoretical and Practical Considerations of the Third Paradigm

This article has two purposes: to examine why mixed methods is a legitimate approach particularly well suited to health psychology; and to describe the challenges inherent in conducting mixed methods research. First, arguments justifying the status of mixed methods as a third paradigm alongside solely quantitative and qualitative frameworks are discussed. Second, a qualitatively driven model of mixed methods is illustrated using examples from a research programme exploring the psychosocial impact of a rare, genetic skin disorder. The flexibility of a mixed methods approach enables the researcher to be responsive to a range of issues, but it is important the approach is used thoughtfully and appropriately.

“Ur skin is the thing that everyone sees and you cant change it!”: Exploring the appearance-related concerns of young people with psoriasis

Purpose: The failure of research to capture the qualitative experiences of young people who have chronic skin conditions means that their psychosocial needs are poorly understood. Using a grounded theory approach, this study facilitated group discussions between adolescents with psoriasis in order to rapidly identify themes about their support needs. Methods: Three online focus groups were hosted in a real time forum. In total, 8 young people aged 11–18 years were recruited through the websites of psoriasis support organizations. Focus groups lasted an average of 1 hour and data was analysed using grounded theory techniques. Results: Appearance-related concerns are central to the experiences of young people with psoriasis. Participants constructed their individual struggle (It and Me) in physical, emotional, motivational and intellectual terms. A strong sense of Us developed as participants recognized the value of meeting peers with psoriasis. This enabled groups to blame Them for their negative social experiences. Discussion: The findings are discussed in the context of literature around adolescence and appearance. It is suggested that the experience of negative social encounters in adolescence may have long-term implications for appearance anxiety specifically and self-esteem generally. The potential of peer support to improve these outcomes is considered.

The Psychosocial Impact of Epidermolysis Bullosa

Epidermolysis bullosa (EB) is a disease in which the skin blisters in response to minimal friction, causing painful wounds. Despite the potentially severe nature of epidermolysis bullosa, research on the psychosocial issues is scarce. The aims of the study were to explore the psychosocial impact of epidermolysis bullosa on affected adults and to identify associated support needs. We collected data using semistructured interviews and employed inductive thematic analysis to organize and analyze them. Three main themes—beliefs about containing the impact of EB, understandings of the disease, and the disabling impact of EB—describe the ways in which living with EB influences the daily lives of participants at intraindividual, interindividual, and sociocultural levels. The associated support needs ranged in type and intensity, from a preference for brief, skills-based interventions and the facilitation of peer support through to longer-term specialist psychological support. The results highlight how the particular combination of the rarity of the disease, its lifelong and hereditary nature, and its disfiguring impact on the skin differentiate epidermolysis bullosa from other chronic conditions.

It’s like a juggling act: rheumatoid arthritis patient perspectives on daily life and flare while on current treatment regimes

Objective. The objective of this study was to explore patients’ experiences of RA daily life while on modern treatments. Methods. The methods of this study comprised semi-structured interviews with 15 RA patients, analysed using inductive thematic analysis. Results. Four themes suggest patients experience life with RA along a continuum from RA in the background to the foreground of their lives, underpinned by constant actions to maintain balance. Living with RA in the background shows patients experience continuous, daily symptoms, which they mediate through micromanagement (mediating the impact of RA on daily life), while learning to incorporate RA into their identity (redefining me). RA moving into the foreground shows patients experience fluctuating symptoms (unwelcome reminders) that may or may not lead to a flare (trying to make sense of fluctuation). Dealing with RA in the foreground shows how patients attempt to manage RA flares (trying to regain control) and decide to seek medical help only after feeling they are losing control. Patients employ a stepped approach to self-management (mediation ladder) as symptoms increase, with seeking medical help often seen as the last resort. Patients seek to find a balance between managing their fluctuating RA and living their daily lives. Conclusion. Patients move back and forth along a continuum of RA in the background vs the foreground by balancing self-management of symptoms and everyday life. Clinicians need to appreciate that daily micromanagement is needed, even on current treatment regimes. Further research is needed to quantify the level and impact of daily symptoms and identify barriers and facilitators to seeking help.

“They didn't tell us, they made us work it out ourselves”: Patient perspectives of a cognitive–behavioral program for rheumatoid arthritis fatigue†

Fatigue is an overwhelming rheumatoid arthritis (RA) symptom caused by interacting clinical and psychosocial factors. Cognitive–behavioral therapy (CBT) addresses links between thoughts, feelings, and behaviors and uses cognitive restructuring to facilitate behavior changes. In a randomized controlled trial, a group CBT program for RA fatigue improved fatigue impact, severity, and perceived coping, as well as mood and quality of life. The aim of this study was to explore the patient perspective of the program and the impact of behavior changes.

Patient preferences for psychological support in inflammatory arthritis: A multicentre survey

Objectives Inflammatory arthritis (IA) can lead to anxiety, depression, pain and fatigue. Psychological support can improve quality of life and self-management; and European and American guidelines recommend support be offered. This study examined patient views on psychological support for their IA. Methods A questionnaire designed by researchers, patient partners and clinicians was administered to 2280 patients with IA. Results 1210 patients responded (53%): 74% women; mean age 59 years (SD 12.7); patient global 5 (2.3); disease duration <5 years (41%), 5–10 (20%), >10 (39%). Only 23% reported routinely being asked about social and emotional issues by a rheumatology professional, but 46% would like the opportunity to discuss psychological impact. If offered, 66% of patients reported they would use a self-management/coping clinic (63% pain management, 60% occupational therapy, 48% peer support groups, 46% patient education, 46% psychology/counselling). Patients want support with managing the impact of pain and fatigue (82%), managing emotions (57%), work and leisure (52%), relationships (37%) and depression (34%). Preferences are for support to be delivered by the rheumatology team (nurse 74%, doctor 55%) and general practitioners (GPs) (51%). Only 6% of patients stated that social and emotional issues were not relevant. Conclusions Demand for psychological support is high; however, less than a quarter of patients reported being asked about social and emotional issues, suggesting a gap between needs and provision. The preference is for delivery from rheumatology clinicians and GPs, and research should establish whether they have the skills and resources to meet patients’ needs.

Utilizing Qualitative Data from Nominal Groups: Exploring the Influences on Treatment Outcome Prioritization with Rheumatoid Arthritis Patients

The nominal group technique generates quantitative data through a process of experts ranking items of interest. This article focuses on the additional collection of qualitative data from nominal groups with rheumatoid arthritis (RA) patients, used to explore the influences on prioritizing treatment outcomes. Across all groups, the top five outcomes with the highest importance scores were identified as: pain; joint damage; fatigue; activities of daily living; and mobility. Qualitative findings showed that the personal impact of RA influenced decisions on how to rank specific outcomes through four domains: disease impact; adaptation to illness; external resources and stressors; and social expectations.

‘It’s this whole picture, this well-being’: patients’ understanding of ‘feeling well’ with rheumatoid arthritis

Objectives: The aim of this study was to explore the meaning of ‘feeling well’ for people with rheumatoid arthritis (RA). Methods: In-depth interviews were conducted with 23 RA patients, purposively sampled for medication type, disease duration, disease activity, age and gender. Data were analysed using Framework, emphasizing participants’ personal contexts. Results: Well-being was viewed as a broad concept, with ‘feeling well’ being the result of an on-going process to actively engage with a changing body, self and life. Four dimensions emerged: ‘Living in the body’, ‘Being in the mind’, ‘Adapting to illness’ and ‘Being in the world’. The physical impact of RA underpinned the global perception of well-being and was clearly described as linking to the experience of psychological well-being. Physical and psychological wellness was often affected by the individual’s adaptation to RA and personal context (e.g. home environment, broader social attitudes). Discussion: Well-being is a multidimensional concept that is meaningful to RA patients regardless of medication type and disease severity. Patients commonly illustrated a process of actively engaging in cognitive and behavioural adjustments to move towards wellness. Clinical practice and research must take account of the complexity of well-being in long-term conditions, in order to fulfil patients’ expectations.

Polymyalgia Rheumatica (PMR) Special Interest Group at OMERACT 11: Outcomes of Importance for Patients with PMR

We worked toward developing a core outcome set for clinical research studies in polymyalgia rheumatica (PMR) by conducting (1) patient consultations using modified nominal group technique; (2) a systematic literature review of outcome measures in PMR; (3) a pilot observational study of patients presenting with untreated PMR, and further discussion with patient research partners; and (4) a qualitative focus group study of patients with PMR on the meaning of stiffness, using thematic analysis. (1) Consultations included 104 patients at 4 centers. Symptoms of PMR included pain, stiffness, fatigue, and sleep disturbance. Function, anxiety, and depression were also often mentioned. Participants expressed concerns about diagnostic delay, adverse effects of glucocorticoids, and fear of relapse. (2) In the systematic review, outcome measures previously used for PMR include pain visual analog scores (VAS), morning stiffness, blood markers, function, and quality of life; standardized effect sizes posttreatment were large. (3) Findings from the observational study indicated that asking about symptom severity at 7 AM, or “on waking,” appeared more relevant to disease activity than asking about symptom severity “now” (which depended on the time of assessment). (4) Preliminary results were presented from the focus group qualitative study, encompassing broad themes of stiffness, pain, and the effect of PMR on patients’ lives. It was concluded that further validation work is required before a core outcome set in PMR can be recommended. Nevertheless, the large standardized effect sizes suggest that pain VAS is likely to be satisfactory as a primary outcome measure for assessing response to initial therapy of PMR. Dissection of between-patient heterogeneity in the subsequent treatment course may require attention to comorbidity as a potential confounding factor.