Jennifer Liddle

Then and now: evolving community in the context of a retirement village

ABSTRACT There is currently much debate in the United Kingdom policy and practice literature about how best to respond to the care and accommodation needs of people as they retire and grow older. Against a policy background which espouses the benefits of ‘lifetime homes and lifetime neighbourhoods’, the growth of purpose-built segregated retirement villages looks somewhat contradictory and is set to transform the housing scene. Whilst there has been considerable research into these environments in countries like the United States of America and Australia, we know comparatively little about what it is like to live in British retirement communities, how they evolve over time and whether they enhance peoples lifestyle aspirations and quality of life. This paper examines these issues through the lens of ‘community’ and in the context of Denham Garden Village: a purpose-built retirement village in Buckinghamshire. Drawing on a range of qualitative data (from individual and group interviews, diaries and directives), we focus on how ‘community’ was conceptualised, experienced and understood both ‘then’ (in the early days of the village) and ‘now’ (subsequent to its redevelopment). The findings enable us to examine the extent to which ‘community’ evolves over time and raise important questions about how socially cohesive, or not, such retirement villages are.

Mapping patients’ experiences from initial symptoms to gout diagnosis: a qualitative exploration

Objective To explore patients’ experiences from initial symptoms to receiving a diagnosis of gout. Design Data from in-depth semistructured interviews were used to construct themes to describe key features of patients’ experiences of gout diagnosis. Participants and setting A maximum variation sample of 43 UK patients with gout (29 men; 14 women; age range 32–87 years) were recruited from general practices, rheumatology clinics, gout support groups and through online advertising. Results Severe joint pain, combined with no obvious signs of physical trauma or knowledge of injury, caused confusion for patients attempting to interpret their symptoms. Reasons for delayed consultation included self-diagnosis and/or self-medication, reluctance to seek medical attention, and financial/work pressures. Factors potentially contributing to delayed diagnosis after consultation included reported misdiagnosis, attacks in joints other than the first metatarsophalangeal joint, and female gender. The limitations in using serum uric acid (SUA) levels for diagnostic purposes were not always communicated effectively to patients, and led to uncertainty and lack of confidence in the accuracy of the diagnosis. Resistance to the diagnosis occurred in response to patients’ beliefs about the causes of gout and characteristics of the people likely to be affected. Diagnosis prompted actions, such as changes in diet, and evidence was found of self-monitoring of SUA levels. Conclusions This study is the first to report data specifically about patients’ pathways to initial consultation and subsequent experiences of gout diagnosis. A more targeted approach to information provision at diagnosis would improve patients’ experiences.

Exploring the age-friendliness of purpose-built retirement communities: evidence from England

ABSTRACT This article contributes to emerging debates around age-friendly environments, providing empirical evidence concerning the relative age-friendliness of purpose-built retirement communities. Adopting a new definition – ‘underpinned by a commitment to respect and social inclusion, an age-friendly community is engaged in a strategic and ongoing process to facilitate active ageing by optimising the communitys physical and social environments and its supporting infrastructure’ – the article analyses the age-friendliness of one retirement community in England. The Longitudinal Study of Ageing in a Retirement Community (LARC) encompassed two waves of a survey with residents, interviews and focus groups with stakeholders involved in staffing, managing and designing the community, and other qualitative data collected from residents. Reviewing the different data sources, the article argues that purpose-built retirement communities have the potential to be age-friendly settings but might better involve residents in a regular cycle of planning, implementation, evaluation and continual improvement if they are to facilitate active ageing. In addition, more clarity is needed on how such developments can better fit with the age-friendly agenda, particularly in terms of their capacity to support ageing in place, the accessibility of the wider neighbourhood, opportunities for intergenerational interactions, and the training of staff to work with older people.

Home From Home? A Mixed-Methods Study of Relocation Within a Purpose-Built Retirement Community

Moving from a location where one has intimate knowledge of the physical and social aspects of space, with established daily routines, social networks, and attachment to place, can present challenges in later life. The literature supports the optimality of aging in place, and several studies point to the potentially detrimental effects of disruption, particularly in cases of involuntary relocation. Using both qualitative and quantitative data, this exploratory study aimed to examine the experiences and effects of relocation as part of a redevelopment of a community housing older people. Thirty-five interviews were completed with 17 participants across stages of the relocation process. Quantitative indicators of well-being were also compared between residents who had moved and those who had not over this period. No significant differences were found between movers and non-movers in the quantitative data. However, the qualitative data suggested that the relationship with the environment is more nuanced than the duality of optimal and detrimental. Individuals’ agency in relation to their environment was found to be mediated by such factors as lifestyle and daily routine, bereavement, sociospatial factors, and access to nature. The effects of relocation appear to be complex and mediated by a variety of individual and social factors.

Why me? I don't fit the mould … I am a freak of nature: a qualitative study of women's experience of gout.

BackgroundGout is more common in men, and is often perceived by both patients and health practitioners to be a disorder of men, but its prevalence in women is increasing. Little is known about women’s experience of gout and the impact it has on their lives. It is important for practitioners to be aware of these areas, given the increasing numbers of women with gout they are likely to see in the future. This study aimed to explore women’s experiences of gout.MethodsA qualitative research design was used. Semi-structured interviews were conducted with 43 people, of whom 14 were women. Interviews were video and/or tape recorded and transcribed verbatim. Data from the interviews was first grouped into broad categories, followed by a more detailed thematic analysis and interpretation.ResultsParticipants’ ages ranged from 32 to 82. Nine participants were retired and five were in fulltime work. Four themes emerged: (1) experience of onset, help seeking and diagnosis (2) understanding and finding information about gout, (3) impact on identity, and (4) impact on roles and relationships.ConclusionsThe diagnostic process for women with gout can be uncertain due to lack of awareness of gout in women (by health care professionals and women themselves). Women do not have a good understanding of the condition and find it difficult to find information that feels relevant to them. Gout has a major impact on women’s identity and on their roles and relationships. These findings are of importance to health care professionals dealing with women with potential gout and those with an existing diagnosis.

What is the impact of giant cell arteritis on patients' lives? A UK qualitative study

Objectives Clinical management of giant cell arteritis (GCA) involves balancing the risks and burdens arising from the disease with those arising from treatment, but there is little research on the nature of those burdens. We aimed to explore the impact of giant cell arteritis (GCA) and its treatment on patients’ lives. Methods UK patients with GCA participated in semi-structured telephone interviews. Inductive thematic analysis was employed. Results 24 participants were recruited (age: 65–92 years, time since diagnosis: 2 months to >6 years). The overarching themes from analysis were: ongoing symptoms of the disease and its treatment; and ‘life-changing’ impacts. The overall impact of GCA on patients’ lives arose from a changing combination of symptoms, side effects, adaptations to everyday life and impacts on sense of normality. Important factors contributing to loss of normality were glucocorticoid-related treatment burdens and fear about possible future loss of vision. Conclusions The impact of GCA in patients’ everyday lives can be substantial, multifaceted and ongoing despite apparent control of disease activity. The findings of this study will help doctors better understand patient priorities, legitimise patients’ experiences of GCA and work with patients to set realistic treatment goals and plan adaptations to their everyday lives.

Affective concordance in couples: a cross-sectional analysis of depression and anxiety consultations within a population of 13,507 couples in primary care

BackgroundDepression and anxiety are common and have a significant impact on the individual and wider society. One theory proposed to explain a heightened risk for depression and anxiety is affective concordance in couples (e.g. influence of shared mood states, shared health beliefs). Whilst research has shown concordance for severe psychiatric illnesses and general mood in couples, little attention has been given to concordance for common psychiatric conditions such as depression and anxiety. The aims of this study were to test affective concordance in couples and examine potential influences on concordance.MethodsStudy design is a 1-year cross-sectional study of anxiety and depression consultations in primary care. Data were obtained from a validated primary care database of recorded consultations. Outcome was the presence of an anxiety or depression Read Code (GP recorded reason for consultation) in the female (within the couple dyad), and exposure was a recorded Read Code of anxiety or depression in the male. Logistic regression was used to test associations with odds ratios (OR) and 95% confidence intervals (95% CI) reported. Statistical adjustment was carried out on potential influences of concordance; age, environment (deprivation), healthcare behaviour (consultation frequency), and comorbidity.ResultsA population of 13,507 couples were identified in which 927 people consulted for anxiety and 538 for depression. Logistic regression showed a 3 times increase in odds of an anxiety consultation in females if their male partner had also consulted OR 2.98 (95% CI 2.15 to 4.13). For depression females were over 4 times the odds of consulting if their male partner had also consulted OR 4.45 (95% CI 2.79 to 7.09). Adjustment within a multivariable model showed some reduction in odds; concordant anxiety was reduced to 2.5 times odds OR 2.48 (95%CI 1.76 to 3.50) and depression reduced to OR 3.39 (2.07 to 5.54).ConclusionResults show significant associations for affective concordance in couples. Factors influencing concordance are comorbidity and environmental factors, however reasons for deciding to consult (positive or negative) are unknown. This study highlights the patients’ social context as a factor in consultations for anxiety and depression and gives support to the consideration of the patient’s household as an influence on mental health.

Where does good quality qualitative health care research get published

This short report aims to give some insight into current publication patterns for high-quality qualitative health research, using the Research Excellence Framework (REF) 2014 database. We explored patterns of publication by range and type of journal, by date and by methodological focus. We also looked at variations between the publications submitted to different Units of Assessment, focussing particularly on the one most closely aligned with our own research area of primary care. Our brief analysis demonstrates that general medical/health journals with high impact factors are the dominant routes of publication, but there is variation according to the methodological approach adopted by articles. The number of qualitative health articles submitted to REF 2014 overall was small, and even more so for articles based on mixed methods research, qualitative methodology or reviews/syntheses that included qualitative articles.

P02 “It’s just a little bit of add-on to the end, you know” Integrating joint pain, anxiety and depression in primary care long-term condition reviews: analysis of audio-recorded consultations

Background Osteoarthritis (OA) and mental health problems are common and often co-exist in patients with other long term conditions (LTCs), but are under-detected and sub-optimally managed in primary care. The aim of the ENHANCE pilot trial is to develop and test the feasibility and acceptability of a practice nurse-led ‘enhanced’ LTC review for identifying, assessing and supporting management of identified joint pain, anxiety and/or depression in patients attending routine LTC reviews. We report analysis of audio recorded ENHANCE consultations undertaken as part of a process evaluation within the pilot trial. Methods Practice nurses (PNs) at four general practices participated in training to deliver the ENHANCE review. A computer template prompted the use of case-finding questions for joint pain and anxiety and depression in the consultation. PNs had the option of verbal advice, referral to relevant services (e.g. physiotherapy and mental health services) and/or provision of information booklets. 24 consultations, with 7 PNs across the four practices were audio-recorded, transcribed and subject to a thematic analysis. The ENHANCE trial received NHS ethical approval. Results ENHANCE LTC review recordings ranged between 10 and 50 minutes. Evidence of integration of ENHANCE components varied. Reference to the research study was given by some PNs as justification for departure from the usual LTC consultation. PNs and patients often normalised symptoms of low mood, anxiety and pain, there were missed opportunities to respond to patient cues, and sometimes help or resources were offered but not given. However, there were examples of highly integrated consultations where PNs did incorporate ENHANCE case-finding questions within a patient-centred discourse and offer further management. Pain management for OA was discussed, and topical agents were promoted particularly when patients expressed reluctance towards taking tablets. The importance of exercise was emphasised, and nurses handed out information booklets and talked patients through particular exercises. Information booklets for anxiety and depression were given and some patients were referred to their GP, but referral for formal support for mental health problems was not discussed. Conclusion The complexity of the LTC review poses a challenge for integrating identification and assessment of OA, anxiety and/or depression within these consultations, and provision of support to patients with these problems. Despite the challenges, evidence that PNs can deliver an integrated approach indicates feasibility of the ENHANCE consultation within routine primary care. Facilitators to that integration will be discussed.