Impacts of the COVID-19 pandemic on access to healthcare among people with disabilities: evidence from six low- and middle-income countries.

BACKGROUND: The pandemic has placed considerable strain on health systems, especially in low- and middle-income countries (LMICs), leading to reductions in the availability of routine health services. Emerging evidence suggests that people with disabilities have encountered marked challenges in accessing healthcare services and supports in the context of the pandemic. Further research is needed to explore specific barriers to accessing healthcare during the pandemic, and any strategies that promoted continued access to health services in LMICs where the vast majority of people with disabilities live. METHODS: Qualitative in-depth interviews were conducted with persons with disabilities in Ghana, Zimbabwe, Viet Nam, Türkiye (Syrian refugees), Bangladesh, and India as part of a larger project exploring the experiences of people with disabilities during the COVID-19 pandemic and their inclusion in government response activities. Data were analysed using thematic analysis. RESULTS: This research found that people with disabilities in six countries - representing a diverse geographic spread, with different health systems and COVID-19 responses - all experienced additional difficulties accessing healthcare during the pandemic. Key barriers to accessing healthcare during the pandemic included changes in availability of services due to systems restructuring, difficulty affording care due to the economic impacts of the pandemic, fear of contracting coronavirus, and a lack of human support to enable care-seeking. CONCLUSION: These barriers ultimately led to decreased utilisation of services which, in turn, negatively impacted their health and wellbeing. However, we also found that certain factors, including active and engaged Organisations of Persons with Disabilities (OPDs) and Non-Governmental Organizations (NGOs) played a role in reducing some of the impact of pandemic-related healthcare access barriers.

Can a disability studies-medical sociology rapprochement help re-value the work disabled people do within their rehabilitation?

This paper draws attention to the health-related work that disabled people do when engaging with rehabilitation services. Medical sociology has a rich history of looking at the 'illness work' that patients do, while disability studies scholars have explored the cultural value placed upon paid work and the effects on social status of being unable to work. Yet, a longstanding froideur between these two disciplines, which have fundamentally opposed ontologies of illness and disability, means that neither discipline has attended closely to the rehabilitation-related work that disabled people do. The concept of 'adjusting' to illness highlights seemingly irreconcilable disciplinary differences. Yet this article argues that the notion of 'adjustment work' can elucidate the socio-political character of the work disabled people do in their rehabilitation, which could create a more substantial and sustainable dialogue on this subject between disability studies and medical sociology. To make this case, we discuss interview data from the Rights-based Rehabilitation project, which sought to explore disabled people's lived experiences of rehabilitation.

Barriers and facilitators to accessing sexual health services for older LGBTQIA+ adults: a global scoping review and qualitative evidence synthesis.

The number of older adults identifying as lesbian, gay, bisexual, transgender and other sexual and gender diverse identities (LGBTQIA+) is growing as populations age and social environments become more accepting. This study uses a global evidence synthesis to understand perceived barriers and facilitators to access to sexual healthcare globally for older LGBTQIA+ adults. We used a scoping review and qualitative evidence synthesis. Embase, PubMed and PsycInfo were searched with terms related to LGBTQIA+ populations, adults aged 45years, and sexual health care. We used the Cochrane Handbook and the review protocol was registered. Primary and secondary textual data were coded and grouped into themes using PRISMA-SCR and the Minority Stress Model. The certainty of review findings was assessed using the GRADE-CERQual approach. We identified 19 studies and 15 were included in the qualitative evidence synthesis. All studies were from high-income countries. Heterocentricity and male-centricity of sexual healthcare services contributed to feelings of exclusion for older LGBTQIA+ adults. Both anticipated and enacted stigma from healthcare providers resulted in older LGBTQIA+ adults, especially those with chronic conditions, avoiding health services (seven studies each, low certainty). Older LGBTQIA+ adults have unique sexual health needs and may feel their age empowers them to access appropriate care (four studies, low certainty). This review highlights the need for additional research and interventions to improve sexual health services for older LGBTQIA+ adults. Practical strategies to make sexual health less heterocentric (e.g. gender neutral signage) may increase uptake of essential sexual health services.

'Do they ever think about people like us?': The experiences of people with learning disabilities in England and Scotland during the COVID-19 pandemic.

People with learning disabilities in England and Scotland have experienced an increased risk of illness and death during the COVID-19 pandemic. Drawing on data of a longitudinal qualitative study with 71 disabled people and 31 disability organisations, this article examines the experiences of 24 people with learning disabilities in England and Scotland during the pandemic, reflecting on what rendered them vulnerable and placed them at risk. Qualitative interviews were conducted with participants and key informants at two timepoints; June-August 2020 and February-April 2021. Findings emerged across four key themes: failure to plan for the needs of people with learning disabilities; the suspension and removal of social care; the impact of the pandemic on people's everyday routines; and lack of vaccine prioritisation. The inequalities experienced by people with learning disabilities in this study are not particular to the pandemic. We explore the findings in the context of theoretical frameworks of vulnerability, including Fineman's conceptualisation of a 'vulnerability paradigm'. We conclude that the structured marginalisation of people with disabilities, entrenched by government action and inaction, have created and exacerbated their vulnerability. Structures, policies and action must change.

Theorising rehabilitation: Actors and parameters shaping normality, liminality and depersonalisation in a UK hospital.

Sociological concern for rehabilitation remains limited. This paper aims to contribute to rehabilitation theory. It examines two units of a specialist rehabilitation hospital in the UK (amputee and neurological services) by focusing on the key actors involved - families, patients, staff - and the parameters shaping their relationships. The findings extend previous theoretical understandings of rehabilitation in three themes: normality, liminality and depersonalisation. We argue, first: normality is constantly negotiated amongst the different actors. This complicates existing works' critique of rehabilitation as reproducing the ideology of normality. Second, discourses produced during acute care shape the inpatient rehabilitation experience. This calls attention to the pre-rehabilitation phase and complicates existing works' emphasis on the transition from inpatient stay to the time of discharge. Finally, inpatient rehabilitation is notable in rendering the adverse effects of depersonalisation apparent. It combines the bureaucracy of a regular hospital ward, with institutionalising aspects of long-term care. These findings have a potential to enhance practice as well as knowledge. We call for a deeper sociological attention, combining theory-building with empirical data for a better understanding of inpatient rehabilitation.

Disability-inclusive responses to COVID-19: Lessons learnt from research on social protection in low- and middle-income countries.

The one billion people living with disabilities globally already face a heightened risk of poverty, which will likely be exacerbated by the COVID-19 pandemic unless interventions to address its economic impacts are disability-inclusive. This paper draws on the literature on disability, poverty and social protection in low- and middle-income countries to explore the pathways through which the current pandemic may increase the risk of poverty amongst people with disabilities, such as loss of income from disruptions to work, particularly in the informal sector, and higher future spending and productivity losses from disruptions to healthcare and other key services (e.g. rehabilitation, assistive devices). It also explores how social protection and other initiatives to mitigate the economic impacts of the pandemic should consider the needs of people with disabilities, with recommendations for disability-inclusive actions in the design and implementation of eligibility criteria and application procedures, as well as the delivery and content of benefits. Across recommendations, meaningful consultations with people with disabilities, leadership at the program and policy level, appropriate budgeting and monitoring of progress through routine collection of data on disability are key for improving access to and impact of economic responses amongst people with disabilities.

Performance management: a qualitative study of relational boundaries in personal assistance.

Personal assistance (PA) is a model of support where disabled people take control of recruiting, training and managing the people that support them. Personal assistance differs from other forms of care, such as domiciliary or informal care, because the disabled person is in control of how, when and by whom they are supported. With the advent of personal health budgets, PA is no longer limited to social care but is also central to future NHS services and funding arrangements. The aims of this study were to gain a deeper understanding of PA relationships, and to explore how both parties manage interpersonal challenges. We report on data from 58 qualitative interviews with disabled employers and personal assistants. Applying concepts from Goffman's (1959) scheme of impression management, we present an analysis of the relational dynamics that occur when two people cooperate in shared endeavours. Goffman's concepts of team members and non-persons, in addition to the themes of regions and information control, aid a more fundamental understanding of the relational dynamics that occur between disabled employers and their PAs.

Sexual Functioning in Men With and Without Disabilities: Findings From a Representative Sample of Australian Men.

INTRODUCTION: Studies on sexual function in men with disabilities have mainly relied on clinical samples; population-based evidence on this topic is limited. AIM: The aim of this study was to compare aspects of sexual function between disabled and nondisabled men using a representative sample. METHODS: We used data from Ten to Men, a national cohort study of Australian men aged 18-55 years. We first compared the prevalence of 15 sexual function-related difficulties in disabled vs non-disabled men. Next, we used Poisson regression to examine associations between disability and sexual function. The main analytic sample had 8,496 men. Weights and adjustments appropriate to the sampling methodology were applied. Models adjusted for potential confounders. Results were reported as prevalence ratios (PRs). P values of < .05 were considered statistically significant. MAIN OUTCOME MEASURE: Outcomes were 15 individual items from the National Survey of Sexual Attitudes and Lifestyles-Sexual Function, a validated measure of sexual function with items in 3 domains: physio-psychological aspect; relational aspect; and global self-rating (the 16th item on help-seeking was excluded). These were coded as binary variables denoting past-year sexual problems. RESULTS: Disabled men had higher prevalence of all outcomes than nondisabled men. 25.6% of men with disabilities and 15.1% of nondisabled men experienced at least 2 of 15 difficulties. The most prevalent problems were "orgasmed too early" (43.8% of disabled men, 37.1% of nondisabled men), imbalance of sexual desire between partners (47.6% of disabled men, 39.2% of nondisabled men), and overall sexual dissatisfaction (39.4% of disabled men, 26.7% of nondisabled men). All adjusted PRs were > 1.00 for disability; associations were statistically significant except "partner experienced sexual difficulties" (PR = 1.23; 95% CI = 0.99-1.53; P = .058) and "orgasmed too early" (PR = 1.16; 95% CI = 1.00-1.35; P = .050). "Presence of discomfort/pain" had the largest adjusted PR for disability (PR = 2.77; 95% CI = 1.89-4.06; P < .001). CLINICAL IMPLICATION: This population-based analysis on the relationship between disability and sexual function contextualizes evidence from clinical studies. Findings suggest that disparities between men with and without disability exist but are not uniform across different aspects of sexual function. STRENGTHS & LIMITATIONS: Two major strengths of this study are that the sample included a nondisabled reference group and results are generalizable to Australian men. A key limitation is that disability and sexual function measures are self-reported. CONCLUSION: This study provides a broad foundation of population-based evidence about sexual function in men with disabilities, relative to men without, showing positive associations between disability and 13 of 15 sexual difficulties. Bollier A-M, King T, Shakespeare T, et al. Sexual Functioning in Men With and Without Disabilities: Findings From a Representative Sample of Australian Men. J Sex Med 2019;16:1749-1757.

When the political becomes personal: Reflecting on disability bioethics.

A discussion of the connection between activism and academia in bioethics, highlighting the author's own trajectory, exploring the extent to which academics have an obliation to be 'judges' rather than 'barristers' (as explored by Jonathan Haidt) and asking questions about the relationship of disability to positions in bioethics.

A support programme for caregivers of children with disabilities in Ghana: Understanding the impact on the wellbeing of caregivers.

BACKGROUND: Four fifths of the estimated 150 million children with disability in the world live in resource poor settings where the role of the family is crucial in ensuring that these children survive and thrive. Despite their critical role, evidence is lacking on how to provide optimal support to these families. This study explores the impact of a participatory training programme for caregivers delivered through a local support group, with a focus on understanding caregiver wellbeing. METHODS: A qualitative longitudinal study was conducted to investigate the impact of a training programme, "getting to know cerebral palsy," with caregivers on their wellbeing. Eighteen caregivers, from four districts, were interviewed up to three times over 14 months, to assess impact and the reasons for any changes. RESULTS: Low levels of knowledge, high levels of stigma, physical and emotional exhaustion, and often difficult family relationships with social exclusion of the child and caregiver were common themes at the outset. Caregivers struggled to combine their caring and economic activities. This was exacerbated by the common absence of the father. Two months after completion of the training, their reported wellbeing had improved. The reasons for this were an improved understanding about their child's condition, positive attitudinal change towards their child, feelings of hope, and through the group support, a profound realisation that they are "not on their own." While relationships within the family remained complex in many cases, the support group offered an important and alternative social support network. CONCLUSIONS: This study illustrates the many benefits of a relatively simple caregiver intervention, which has the potential to offer a mechanism to provide sustainable social support for caregivers and children with cerebral palsy. Any future programme needs to also address more structural issues, including stigma and discrimination, and strengthen approaches to family engagement.

Sing Your Heart Out: community singing as part of mental health recovery.

This paper reports on a qualitative evaluation of a Norfolk-based network of community singing workshops aimed at people with mental health conditions and the general public. The aims of the study were (a) to evaluate the effectiveness of the Sing Your Heart Out (SYHO) project and (b) to identify the key features which made the project distinctive. The study draws on 20 interviews with participants, two focus groups with organisers and workshop leaders, and participative observation over a 6-month period. Interviewees all reported improvement in or maintenance of their mental health and well-being as a direct result of engagement in the singing workshops. For most it was a key component, and for some the only and sufficient component in their recovery and ongoing psychological stability. SYHO was regarded as different from choirs and from most other social groups and also different from therapy groups, music or otherwise. The combination of singing with an inclusive social aspect was regarded as essential in effecting recovery. The lack of pressure to discuss their condition and the absence of explicit therapy was also mentioned by most participants as an important and welcome element in why SYHO worked for them. The combination of singing and social engagement produced an ongoing feeling of belonging and well-being. Attendance provided them with structure, support and contact that improved functioning and mood. We conclude that the SYHO model offers a low-commitment, low-cost tool for mental health recovery within the community.

Just What Is the Disability Perspective on Disability?

In the helpful article "Why Bioethics Needs a Disability Moral Psychology," Joseph Stramondo adds to the critique of actually existing bioethics and explains why disability activists and scholars so often find fault with the arguments of bioethicists. He is careful not to stereotype either community-rightly, given that bioethicists endorse positions as disparate as utilitarianism, deontology, virtue ethics, and feminist ethics, among others. Although Stramondo never explicitly mentions utilitarians or liberals, it seems probable that these are the main targets of his discontent. The disability community, as he concedes, is also a broad church. Yet for this reason, I do not believe that you can read off positions on bioethics questions from either disability embodiment or disability organization affiliation.

"Very much evolving": a qualitative study of the views of psychiatrists about peer support workers.

BACKGROUND: Mental health services continue to develop service user involvement, including a growth in employment of peer support workers (PSWs). Despite the importance of the views and attitudes expressed by psychiatrists, this topic has not previously been studied. AIMS: To gain insight into the views and attitudes psychiatrists have about PSWs. METHODS: A qualitative study based on semi-structured interviews with 11 psychiatrists in the East of England. RESULTS: Psychiatrists were broadly positive and supportive of PSWs. Interviewees not only could anticipate a range of possible benefits of employing PSWs, but also had concerns regarding their implementation and management. There was a lack of clarity and consistency between interviewees about what the exact role of a PSW might involve. CONCLUSION: This study provides insights into how PSWs are perceived by psychiatrists. While broadly positive attitudes exist, the research highlights certain challenges, particularly role ambiguity.