Learning to construct our identities over the life course: a study with lesbian, gay, bisexual and transgender adults in Scotland

To date, adult educational research has had a limited focus on lesbian, gay, bisexual and transgendered (LGBT) adults and the learning processes in which they engage across the life course. Adopting a biographical and life history methodology, this study aimed to critically explore the potentially distinctive nature and impact of how, when and where LGBT adults learn to construct their identities over their lives. In-depth, semi-structured interviews, dialogue and discussion with LGBT individuals and groups provided rich narratives that reflect shifting, diverse and multiple ways of identifying and living as LGBT. Participants engage in learning in unique ways that play a significant role in the construction and expression of such identities, that in turn influence how, when and where learning happens. Framed largely by complex heteronormative forces, learning can have a negative, distortive impact that deeply troubles any balanced, positive sense of being LGBT, leading to self- censoring, alienation and in some cases, hopelessness. However, learning is also more positively experiential, critically reflective, inventive and queer in nature. This can transform how participants understand their sexual identities and the lifewide spaces in which they learn, engendering agency and resilience. Intersectional perspectives reveal learning that participants struggle with, but can reconcile the disjuncture between evolving LGBT and other myriad identities as parents, Christians, teachers, nurses, academics, activists and retirees. The study’s main contributions lie in three areas. A focus on LGBT experience can contribute to the creation of new opportunities to develop intergenerational learning processes. The study also extends the possibilities for greater criticality in older adult education theory, research and practice, based on the continued, rich learning in which participants engage post-work and in later life. Combined with this, there is scope to further explore the nature of ‘life-deep learning’ for other societal groups, brought by combined religious, moral, ideological and social learning that guides action, beliefs, values, and expression of identity. The LGBT adults in this study demonstrate engagement in distinct forms of life-deep learning to navigate social and moral opprobrium. From this they gain hope, self-respect, empathy with others, and deeper self-knowledge.

An exploration of treatment burden and patient capacity in people with stroke

Background and aims: Advances in modern medicine have led to improved outcomes after stroke, yet an increased treatment burden has been placed on patients. Treatment burden is the workload of health care for people with chronic illness and the impact that this has on functioning and well-being. Those with comorbidities are likely to be particularly burdened. Excessive treatment burden can negatively affect outcomes. Individuals are likely to differ in their ability to manage health problems and follow treatments, defined as patient capacity. The aim of this thesis was to explore the experience of treatment burden for people who have had a stroke and the factors that influence patient capacity. Methods: There were four phases of research. 1) A systematic review of the qualitative literature that explored the experience of treatment burden for those with stroke. Data were analysed using framework synthesis, underpinned by Normalisation Process Theory (NPT). 2) A cross-sectional study of 1,424,378 participants >18 years, demographically representative of the Scottish population. Binary logistic regression was used to analyse the relationship between stroke and the presence of comorbidities and prescribed medications. 3) Interviews with twenty-nine individuals with stroke, fifteen analysed by framework analysis underpinned by NPT and fourteen by thematic analysis. The experience of treatment burden was explored in depth along with factors that influence patient capacity. 4) Integration of findings in order to create a conceptual model of treatment burden and patient capacity in stroke. Results: Phase 1) A taxonomy of treatment burden in stroke was created. The following broad areas of treatment burden were identified: making sense of stroke management and planning care; interacting with others including health professionals, family and other stroke patients; enacting management strategies; and reflecting on management. Phase 2) 35,690 people (2.5%) had a diagnosis of stroke and of the 39 co-morbidities examined, 35 were significantly more common in those with stroke. The proportion of those with stroke that had >1 additional morbidities present (94.2%) was almost twice that of controls (48%) (odds ratio (OR) adjusted for age, gender and socioeconomic deprivation; 95% confidence interval: 5.18; 4.95-5.43) and 34.5% had 4-6 comorbidities compared to 7.2% of controls (8.59; 8.17-9.04). In the stroke group, 12.6% of people had a record of >11 repeat prescriptions compared to only 1.5% of the control group (OR adjusted for age, gender, deprivation and morbidity count: 15.84; 14.86-16.88). Phase 3) The taxonomy of treatment burden from Phase 1 was verified and expanded. Additionally, treatment burdens were identified as arising from either: the workload of healthcare; or the endurance of care deficiencies. A taxonomy of patient capacity was created. Six factors were identified that influence patient capacity: personal attributes and skills; physical and cognitive abilities; support network; financial status; life workload, and environment. A conceptual model of treatment burden was created. Healthcare workload and the presence of care deficiencies can influence and be influenced by patient capacity. The quality and configuration of health and social care services influences healthcare workload, care deficiencies and patient capacity. Conclusions: This thesis provides important insights into the considerable treatment burden experienced by people who have had a stroke and the factors that affect their capacity to manage health. Multimorbidity and polypharmacy are common in those with stroke and levels of these are high. Findings have important implications for the design of clinical guidelines and healthcare delivery, for example co-ordination of care should be improved, shared decision-making enhanced, and patients better supported following discharge from hospital.