Religion,spirituality & chronic illness: A scoping review and implications for health care practitioners

ABSTRACT

While the influence of institutional religion has decreased over the last 40–50 years, research suggests that a substantial proportion of those not attending religious services continue to engage in religious and spiritual practices on their own and refer to religion as a very important aspect in their lives, and as linked to more positive health outcomes, particularly for those living with chronic conditions. This article provides a scoping review to not only highlight the research that views religion and spirituality as valuable tools for coping with chronic illness conditions, but also to highlight research that explores those who may experience some religious/spiritual doubts or a gradual loss of religiosity or spirituality with the diagnosis of chronic conditions. Regardless of a clinician’s beliefs, the authors argue that some awareness training of the value of religion and spirituality for some patients, can be beneficial. In a society facing an increasing plurality of faiths, this is deemed to be an invaluable discussion. In the end, clinical implications will be discussed.     

Blessed assurance: The role of religion and spirituality in Alzheimer's disease caregiving and other significant life events

Increasing attention in the scientific literature is being given to the relationships among religion, spirituality, and overall well-being. Moreover, research has repeatedly identified religion and spirituality as significant coping resources throughout the life course. For this study, a group of 20 Catholic and Protestant older adults were interviewed; half were caregivers of a spouse with Alzheimer's disease and half were noncaregivers. The informants were asked about their views on religion, spirituality, and how they integrated their faith into their lives. Qualitative analysis identified several themes reinforcing previous work that has shown religion and spirituality are important dimensions to the human experience. All of the informants had integrated religious and spiritual beliefs and practices into their lives to help make sense out of stressful situations. The findings underscore the need for further scientific inquiry that examines how religion and spirituality promote healthy adaptation to significant life events.     

Siblinghood through disability studies perspectives: diversifying discourse and knowledge about siblings with and without disabilities

Research about siblings where one has a disability has historically focused on the psychological outcomes of siblings of people with disabilities and has very rarely asked people with disabilities about their sibling relationships. This research focus represents the common individualizing approach and under-representation of people with disabilities that disability studies has argued against. Tracing the history of research about siblings and disability through de/institutionalization and towards current broader theories in disability studies, this article suggests that a range of disability studies perspectives can usefully de-individualize and expand research about siblings where one has a disability. Through examples of how materialist, feminist and inclusive perspectives can be applied to open up research about siblings and disability, the article argues that viewing siblinghood through the range of disability studies perspectives has the potential to expand this research field and represent new facets of siblings’ identities and lives together.     

Explanatory models for disability: perspectives of health providers working in Malawi

Health providers’ understanding of disability determines how disabled people are treated, and hence it is imperative to address conceptualisations of disability, as this will contribute to better opportunities and realisation of human rights for disabled people. This article will use data from a qualitative study exploring conceptualisations of disability by 22 health service providers from the total health care system in Malawi, including the professional sector (e.g. medical doctors and nurses) and the folk sector (healers and indigenous practices). We will discuss how these perceptions influence the lives of disabled people, using the case of a health service user with physical and speech impairment as an example. Our data show that health providers largely conceptualise disability according to the medical model for disability, contributing to the exclusion of disabled people. The bio-psycho-social model for disability, largely absent as an explanatory model for disability among our informants, is the most inclusive and rights based.     

Disabilities and sexual expression: A review of the literature

Since the late 1980s and early 1990s, scholars have sought to advance a more nuanced and robust understanding of the sexual lives of disabled people. In doing so, these scholars have identified some of the barriers to sexual expression that disabled people face as well as some of the positive and pleasurable aspects of disabled people's sexual lives. This article reviews research regarding the sexual expression and activity of disabled people as well as some of the challenges to sexual expression that people with disabilities experience. Persons with disabilities—whether they are acquired, congenital, intellectual, physical, and/or sensorial impairments—continue to encounter alienation, stigmatization, and discrimination, particularly in terms of their sexuality. However, I argue that if proper laws, policies, and adequate supports are in place, people with disabilities can further challenge and push past these barriers to engage in a wide array of sexual and erotic acts. Furthermore, although the amount of disability‐sexuality‐related research has increased over past decades, I argue that many intersections of disability and sexuality remain under‐studied and that further research in this field is necessary.     

Feeling disability: theories of affect and critical disability studies

This paper explores connections between affect studies and critical disability studies. Our interest in affect is sparked by the beginnings of a new research project that seeks to illuminate the lives, hopes and desires of young people with ‘life-limiting’ or ‘life-threatening’ impairments. Cultural responses to these young people are shaped by dominant discourses associated with lives lived well and long. Before commencing our empirical work with young people we use this paper to think through how we might conceptualise affect and disability. We present three themes; ontological invalidation in neoliberal-able times; affect aliens and crip killjoys; disability and resistant assemblages.     

Practitioners’ Personal and Professional Attitudes and Behaviors Toward Religion and Spirituality

This article presents findings from a study that examined the attitudes and behaviors toward religion and spirituality held by 328 randomly selected Virginia licensed clinical social workers, psychologists, and professional counselors. Significant differences were found among the three groups, with social workers generally holding a middle position in comparison with psychologists and professional counselors. As a whole, respondents were found to value the religious or spiritual dimension in their own lives, to respect the function it serves for people in general, and to address, to some extent, religious and spiritual issues in practice. Limited professional training in this area was reported, however, with 79% (n = 259) of the respondents stating that religious or spiritual issues were rarely or never addressed during the course of their graduate education and training. Implications for social work education and practice are discussed.     

Disability in the UK: measuring equality

In this article we identify the key survey data for examining the issue of equality in the lives of disabled people in the UK. Such data is essential for assessing change in quality of life over time and for the evaluation of the impact of policy initiatives. For each data source we consider definitions, data collection, issue coverage, sample size and data access. It is evident that there is only limited survey data on the lives of disabled people in the UK. A number of national surveys include questions on disability, but many offer only limited coverage. There is a tendency to focus on the medical aspects of disability and a failure to clearly distinguish disability from other health issues. Moreover, disability definitions vary and sample sizes are often too small to compare differences by age, gender, ethnicity or locality. For effective policy development there is a need to identify and measure what leads to change in disabled peoples' lives.     

The study of mental distress and the (re)construction of identities in men and women with experience of long-term mental distress

This article explores the possibility of using a theoretical framework drawn from disability studies in the field of mental health, and the study of identity (re)construction in the recovery process. In this PhD project, 33 narratives were analysed using framework analysis. The analysis showed that disablism was present and powerful in the participants’ lives, and also showed how disablism shaped how the participants thought and felt about themselves. As Carol Thomas argues, when analysing disablism one should also focus on who we are and are prevented from being, as disabled people. The conclusion is that processes of oppression were central when it comes to understanding the (re)construction of identities. A disability studies perspective is thus relevant in the field of mental distress, and can be used to enhance the understanding of the process of identity (re)construction.     

Overprotection in the lives of people with intellectual disability in Malta: knowing what is control and what is enabling support

A study of overprotection in the lives of persons with intellectual disability in Malta was carried out on the principles of inclusive research. Focus groups were held with people with intellectual disability, parents of people with intellectual disability, and those working with persons with intellectual disability. Overprotection is a disabling barrier. Its effects were identified in employment, leisure time, intimate relationships, and the use of public transport, money, and mobile phones. People with intellectual disability who experience overprotection live very structured lives. They cannot develop their skills, abilities, and potential. Furthermore, they cannot live their life on their own terms, but on terms determined by others. This creates a sustained dependence on others, especially the family. It is important that a balance is achieved between protection and enabling support. Persons with intellectual disability should be given the support they need to express their wishes and act on them.     

Working with the Experts: collaborative research with people with an intellectual disability

This paper reports on part of a wider study concerned with the collaborative efforts of an inquirer and six people with an intellectual disability, to develop a grounded theory explaining the processes by which these informants manage the relationships within their personal communities. The study was conducted through a series of in-depth interviews with each informant; a process characterised by information sharing, tentative theory development and elaboration, and informants' checking the accuracy of the emerging theory. This inductive approach allowed not only an insight into the lives of each informant, but recognised the informants' expertise in matters concerning their own lives and thus facilitated the emergence of theoretical elements of relevance to the informants themselves. The focus of the paper is on the collaborative or partnership approach adopted. The outcomes of the research partnership are detailed and implications drawn for the role of research in the lifestyles of people with an intellectual disability.     

“I was Excited by the Idea of a Project that Focuses on those Unasked Questions” Co‐Producing Disability Research with Disabled Young People

In this article, we detail the politics and practicalities of co‐produced disability research with disabled young people with life‐limiting and life‐threatening impairments. We centre an ESRC‐funded arts‐informed co‐produced research project that has brought together a Co‐Researcher Collective of disabled young people. Co‐production is an established approach; however, our co‐researchers have led us to develop inclusive research practices that engage with online social research methods in innovative ways. As we detail our experiences, we aim to encourage disability studies researchers and others to adopt virtual environments when researching with and for the lives of disabled people.     

From leisure and disability to disability leisure: developing data, definitions and discourses

Although both disability studies and leisure studies have grown to become influential subject fields in their own right, there has been little discursive exchange between the two fields. This article seeks to address these equally significant gaps in disability research within leisure studies and leisure research within disability studies. Empirical data examining the role of leisure in the lives of a group of young people with cerebral palsy are introduced to contextualise definitions and discourses of leisure and disability. The article demonstrates that, for many young disabled people, the role of leisure in tackling social exclusion remains within the realms of policy rhetoric, rather than everyday reality. The dissonance between these agendas and actualities is reviewed in relation to definitions and discourses of disability and leisure evident in wider social policies, and in relation to definitions, discourses and models of disability that remain dominant within leisure provision.     

Austerity and the lives of people with learning disabilities. A thematic synthesis of current literature

Abstract

The Financial Crisis of 2008 resulted in many western economies implementing cuts in health and social care. This systematic review provides a holistic picture of the impact of austerity policy on the lives of people with learning disabilities (LD) and the collateral effects on the people who support them. Our review suggests that in the current climate of economic austerity, available funding to support people with LD is no longer aligned to their care needs. Cuts in disability services have adversely affected the well-being both of people with LD and their informal carers. Individuals with LD have lost social support and are experiencing increased social isolation. Heightened demands on family carers’ time have negatively influenced their wider roles, including parental functioning, and labour market participation. Our review provides the foundations for further discourse and research on the effects of austerity on people with LD and their family carers.     

Doing disability research in a Southern context: challenges and possibilities

Research on disability issues in countries of the South is primarily dominated by a focus on generating large scale quantitative data sets. This paper discusses the many challenges, opportunities and dilemmas faced in designing and undertaking a qualitative research study in one district in India. The Disability, Education and Poverty Project (DEPP) aims at exploring the role of education in the lives of young people with disabilities living in poverty. A central focus of the research is to engage with the young people with disabilities themselves and to understand how they construed their lives and experiences. This paper discusses three issues which are of central concern to the project: identification of the sample group, appropriateness of the research methods and, finally, an examination of the assumptions underpinning the research process.     

EDITORIAL

Abstract

This national study examined social workers' attitudes and behaviors about religion and spirituality in practice with children and adolescents. The majority of respondents regarded religion and spirituality as relevant to this population and used a wide variety of spiritually-based interventions. Respondents also reported a somewhat frequent identification of spiritual and religious abuse and neglect of youth. However, the vast majority reported that religious or spiritual issues were rarely, if ever, addressed in their social work education. Findings reveal the need to develop specific curricular content about the religious and spiritual lives of youth, including ethical guidelines for spiritually sensitive practice with this population. doi:10.1300/J377v26n03_01     

The future of equality and human rights in Britain--opportunities and risks for disabled people

The Government plans to introduce a new Commission for Equality and Human Rights (CEHR), covering disability, race, gender, sexual orientation, religion/belief and age. This presents both opportunities and risks for the achievement of disability equality. This paper analyses implications and proposes a long term disability rights agenda, geared to mainstreaming disability equality into the CEHR and major policy developments across Government. It suggests that the widest involvement of disabled people, policy makers and academics in the field of disability will be necessary to achieve this. The DRC will be very active in this work.     

Pushing the boundaries of our understanding of disability and violence: voices from the Global South (Guyana)

Our knowledge about disabled people’s lives is largely based on research in the Global North. This article considers disability and violence in the Global South, specifically in Guyana. It aims to push conceptual and empirical boundaries of our understanding of violence and disability. Conceptually, it argues for a social model materialist theory of disability attuned to how material barriers to disabled people’s inclusion in society and space are reproduced through processes of exclusion unfolding across geographic scales ranging from the global, to the inter-personal and intra-personal. It argues that Lacanian psycho-analytic theory provides a complimentary lens for understanding why people engage in acts that construct disabled people as ‘deserving’ of violence. Empirically, the article broadens our understanding of disability and violence by focusing on poverty, violence as a cause of impairment and disability, and disabled women’s and men’s experiences of violence in a majority world context.     

Disabled People,Health Professionals and the Social Model of Disability: Can there be a research relationship?

The social model of disability is proposed as an alternative to models that have viewed disability as an individual, rather than a socio-political issue. The use of this model to guide both research theory and practice is proposed in order to equalise research power relationships, and involve and empower disabled people. Health professionals have traditionally reinforced the medical model of disability in both research and practice, and this has been seen as contributing to the oppression and marginalisation of disabled people. If the social model is to achieve wider dissemination, it would appear important to develop a dialogue between disabled people and health professionals. However, because of negative perceptions it can be difficult for health professionals to find an appropriate position in relation to disabled people, research and the social model of disability. While not denying the past, it appears essential to look at ways in which disabled people and health professionals can work together to overcome the oppression and marginalisation that has been linked to the provision of health services.     

Public health,research and rights: the perspectives of deliberation panels with politically and socially active disabled people

Public health research purports to provide the evidence base for policies, programmes and interventions to improve the health of a population. However, there is increasing awareness that the experiences of disabled people have played little part in informing this evidence base. This paper discusses one aspect of a study commissioned by England’s National Institute for Health Research (NIHR) to review the implications for public health of theories and models of disability. This part of the study focused on the development of a tool or decision aid to promote ethical inclusion of disabled people in public health randomised controlled trials (RCTs) and evaluative research. The tool was introduced at four regional ‘deliberating panels’ involving politically and socially active disabled people. In addition, we held a panel with public health professionals. The deliberation panels debated how the focus of public health was narrowing, why disability was excluded and positive and negative issues with using rights to guide research and evaluative practice. Politically active disabled people argued for a social model of human rights to guide any rights based tools or decision aids in public health and disability research.