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Moral distress and ethical decision-making of eldercare professionals involved in digital service transformation

FRENNERT, Susanne
2020

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Aim

Technology affects almost all aspects of modern eldercare. Ensuring ethical decision-making is essential as eldercare becomes more digital; each decision affects a patient’s life, self-esteem, health and wellness.

 

Methods

We conducted a survey and interviews with eldercare professionals to better understand the behavioural ethics and decision making involved in the digital transition of eldercare.

 

Conclusion

Our qualitative analysis showed three recurrent roles among eldercare professionals in regard to digital service transformation; makers, implementers and maintainers. All three encountered challenging and stressful ethical dilemmas due to uncertainty and a lack of control. The matter of power relations, the attempts to standardize digital solutions and the conflict between cost efficiency and if digital care solutions add value for patients, all caused moral dilemmas for eldercare professionals. The findings suggest a need for organizational infrastructure that promotes ethical conduct and behaviour, ethics training and access to related resources.

Contingent Electric Shock as a Treatment for Challenging Behavior for People With Intellectual and Developmental Disabilities: Support for the IASSIDD Policy Statement Opposing Its Use

ZARCONE, Jennifer R
MULLANE, Michael P
LANGDON, Peter E
BROWN, Ivan
2020

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Issues: The International Association for the Scientific Study of Intellectual and Developmental Disabilities (IASSIDD) is an international group of researchers, clinicians, students, parents, and self-advocates that promotes worldwide research and exchange of information on intellectual and developmental disabilities. IASSIDD recently developed a policy statement regarding their opposition to the use of contingent electric skin shock (CESS) with individuals with challenging behavior and intellectual and developmental disabilities. To support the policy, the available literature was reviewed to evaluate the efficacy, side effects, generalization, and long-term effectiveness of the procedure as an intervention for challenging behavior.


Findings: The review provides a history that demonstrates that, although CESS can decrease the frequency of challenging behavior, it comes at a cost in terms of physical and emotional side effects, and questions remain regarding the long-term effectiveness of the procedure. In addition, we raise several ethical and methodological issues that make the research on the use of CESS even more concerning.


Conclusions: Although research continues in some countries, these studies are now rare. In fact, in the United States, the Food and Drug Administration has just banned the use of such devices with individuals with self-injury and aggression. It is hoped that, because there are many other forms of treatment that have shown to be effective for severe challenging behavior, we can completely avoid the use of CESS.

Disability and gender analysis toolkit

THOMSON, Teresa
et al
March 2020

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CBM’s Disability and Gender Analysis Toolkit has been developed to support staff, partners and allies in strengthening capacity to address systemic and deeply entrenched discriminatory practices and specifically to meet their Programme Quality Standards. It provides practical tools for stronger disability and gender analysis to inform planning, practice and systems. The toolkit provides practical assessment templates and guidance for individuals, organisations and programmes to identify strengths and gaps and to develop focussed action plans to improve practice.

The Convention on the Rights of Persons with Disabilities and the Islamic Tradition: The question of legal capacity in focus

GHALY, Mohammed
2019

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Legal capacity of persons with mental disabilities was a con- tentious issue during the process of drafting the Convention on the Rights of Persons with Disabilities. The Arab Group, consisting of Muslim-majority countries, in the United Nations expressed reservations about the formulation of the Article related to this issue. However, their reservations were dis- missed because they arguably had to do with language-specificity. The author revisits these deliberations and argues that the reservations of the Arab countries have to do with reli- gious aspects rooted in the Islamic tradition. By ignoring these religious aspects, the Disability Convention missed a rich source of wisdom provided by a world religion like Islam. On the other hand, the innovative insights provided by the Disability Convention can be of value to improve contemporary discussions on legal capacity within the Islamic tradition. Unlike the previous studies, which either focused on the approach of the Disability Convention or that of the Islamic tradition, this study examines both approaches and highlights the points of agree- ment and disagreement and finally proposes suggestions for narrowing the existing gap between these two approaches.

‘Power-Hurt’: The Pains of Kindness Among Disabled Karen Refugees in Thailand

COLE, Tomas
2019

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In this paper I show how, for many Karen living as refugees in ‘temporary-shelter-areas’ in Thailand, acts of care and kindness often slipped into something painful and controlling. Drawing on fieldwork among Karen refugees disabled by landmines I show how asking for and receiving help was almost always accompanied by the visceral sensation of ana, literally, ‘power hurt’. On the one hand, ana was the force driving the circulation of care and kindness, provoking people to help others. On the other hand this circulation also carried with it the constant potential to compromise not only the recipient’s but also the donor’s ‘power’, which was understood as their capacity to have an effect on the world. In this manner ana may offer us with a way to grasp the ethical-affective basis of a social arrangement that slips smoothly between lateral solidarities and vertical hierarchical relations allowing egalitarianism and hierarchy to co-exist.

Persons with profound intellectual disability and their right to sex

VEHMAS, Simo
2019

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This article discusses sexuality and sexual rights of persons with profound intellectual and multiple disabilities. I will address the issue by reflecting on my own previous negligence about the issue, and unpack the ethics of sexuality of persons with profound intellectual disability in the light of ethnographic observation and interview data. I will discuss the significance of cognitive and communicative capacities as regards sexual rights as well as the boundaries of ethically justified facilitation of sex. I will also analyse the definition of sex and its ethical implications. Finally, I will offer some reflections on how we should consider more carefully in research the sexuality of persons with profound intellectual and multiple disabilities in order to enhance in practice their sexual fulfilment.

Mental health among Sami people with intellectual disabilities

GJERTSEN, Hege
2019

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The first living condition-survey among people with intellectual disability in Sami areas in Norway was conducted in 2017. The purpose of this article is to present and discuss results from the living-condition study, with a focus on the results related to mental health and bullying as a risk factor for poor mental health among people with intellectual disability and a Sami background. We have conducted a questionnaire survey among people with intellectual disability in Sami areas, with and without a Sami background (N = 93). People with intellectual disability have poorer mental health compared to the population in general and those with Sami background have the poorest mental health. Bullying is one of several factors that increase the risk of poor mental health among people with intellectual disability and Sami background. Having a Sami background makes people with intellectual disability more disposed to poor mental health.

‘It’s my home and your work’: the views of a filmed vignette describing a challenging everyday situation from the perspective of people with intellectual disabilities

HELLZEN, Ove
HAUGENES, Marit
ØSTBY, May
2018

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Purpose: Examining everyday challenges in the interactions between people with intellectual disabilities and their staff, as seen from the user’s perspective, is an important perspective in health care research. Involving people with intellectual disabilities as so-called co-researchers is a relatively unexplored research strategy. In this paper, co-researchers participated in all the steps of the research process, from planning to reporting, in addition to the written reporting of the findings. The aim of this study was to explore how people with intellectual disabilities experienced a filmed vignette of an everyday situation.

 

Method: Based on audio-recorded and transcribed individual and focus-group interviews with people with intellectual disabil- ities, performed by co-researchers with intellectual disabilities together with researchers, qualitative content analysis was used.

 

Results: The analysis reveals three themes: “being emotionally touched”, “being aware of the other”, and “being unclear”.

 

Conclusions: The results are discussed in light of normalization and participation in society with independence and one’s own decision-making. Regarding the care of people with intellectual disabilities, the main finding is the need to focus not only on greater involvement of this population in their own daily lives, but also to teach self-determination skills. Another finding is the importance of involving people with intellectual impairment as co-researchers.

Aligning with the flow of control: A grounded theory study of choice and autonomy in decision-making practices of people with intellectual disabilities

CAREY, Eileen
2018

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Purpose: Choice and autonomy are recognized as values facilitating genuine self- determination. Subsequently greater understanding of these concepts in decision-making practices of adults with intellectual disabilities is required.

 

Aims: The twofold aim of this research study was to ascertain the core concern (most important issue) for adults with intellectual disabilities as they make choices and exercise autonomy and to develop a theory explaining how these adults attempt to resolve their core concern.

 

Methods: This research study undertaken in a single organization in the Republic of Ireland applied classic-grounded theory methods. Participants included twelve adults who were attending day services and accessing a variety of other organizational services. Interviews were undertaken, between January 2012 and September 2013, in different contexts on up to 4 occasions (46 interviews). Data analysis utilized concurrent processes of constant comparative analysis.

 

Results: The main issue of concern for these participants was ‘control’ in environments that were controlling of them and they responded by ‘aligning with the flow of control’ explained by how they framed control, emotionally connected and adjusted in compliance situations.

 

Conclusions: This theory offers a conceptual delineation of the way adults with intellectual disabilities manage the daily tensions and harmonies in decision-making.

The nation’s body: disability and deviance in the writings of Adolf Hitler

BENGTSSON, Staffan
2018

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This article takes its starting point in the Nazi ideology as it appears in the writings of Adolf Hitler, and discusses how disability and the body can be understood in the context of Mein Kampf. The article underlines how disability and bodily infirmities, alongside race, featured significantly in Hitler’s demagogic message. Although the overall image of disability was related to a sense of threat – and a culture gone wrong – Mein Kampf also contains a mixed interpretation of disability as a phenomenon, in which different and opposing disability narratives took part in the construction and the image of the body as a national property.

Feeling disability: theories of affect and critical disability studies

GOODLEY, Dan
LIDDIARD, Kirsty
RUNSWICK-COLE, Katherine
2017

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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.

Rituals of knowing: rejection and relation in disability theology and Meister Eckhart

SMITH, Daniel G W
2017

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One of the most powerful claims of disability theology is that the rejection of persons with disabilities somehow correlates with a rejection of God. This ‘correlative rejection’ is, however, frequently just stated rather than explored in detail, something this article therefore seeks to remedy by examining one example of the correlative rejection that draws together the ethical concerns of theologians writing on intellectual disability with Meister Eckhart’s teaching on the human relationship with God. Here, the correla- tive rejection is exposed as an inevitable result of the narrow emphasis on autonomy and rationality in human self-perception which shape the habituated, even ritualised ways that we try to know persons with intellectual disabilities and God. By contrast, truly knowing and relating to persons with intellectual disabilities, God, and finally also ourselves, relies on a reconciliation with the dependence, vulnerability, and non-rational forms of exchange that a narrow attachment to autonomy and rationality seems directly to occlude. The correlative rejection thus signals both a practical and epistemological problem which results from how we view ourselves and how we subsequently relate to and try to know others, the harmful effects of which are both ethical and spiritual.

The grace of motherhood: disabled women contending with societal denial of intimacy, pregnancy, and motherhood in Ethiopia

TEFERA, Belaynesh
VAN ENGEN, Marloes
VAN DER KLINK, Jac
SCHIPPERS, Alice
2017

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This study aimed to provide better understanding of intimacy and marriage, pregnancy, birth, and motherhood experiences of women with disability in Ethiopia. Qualitative, in-depth, and semi-structured interviews along with personal observations were used to explore the full experiences of participants, as told in their own words. The result of the interviews indicated that relationships and motherhood proved a very rewarding option for women with disabilities. They also expressed their need for intimacy regardless of society’s denial. Challenges identified include negative societal attitudes toward women with disabilities regarding relationship, pregnancy, and child-rearing. Accessibility of health centers in addition to the ignorance and negative attitudes of the physicians are also reported to be major challenges for the interviewees. This study highlights how rewarding the experience of motherhood was for the interviewees and also shows that women with disabilities face challenges at every step of their experiences, because of society’s prejudices toward disability.

Hard to teach: inclusive pedagogy in social science research methods education

NIND, Melanie
LEWTHWAITE, Sarah
2017

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Amidst major new initiatives in research that are beginning to address the pedagogic dimension of building capacity in social science research methods, this paper makes the first move to apply the lens of inclusive pedagogy to research methods pedagogy. The paper explores the ways in which learning social science research methods is hard and may be anxiety-provoking, which has sometimes led to a deficit discourse in which learners are positioned as ill-prepared and fearful. Learners can then be blamed for being hard to teach when an inclusive pedagogical lens would support a more asset-based discourse. Nonetheless, the authors argue that without traditional deficit-based solutions of the remedial class, special needs label or special teacher within the methods learning environment, methods teachers have developed their own responses. These pedagogic responses, elicited from the authors’ research using methods of expert interviews, focus groups and video-stimulated dialogue, address challenges associated with the learner, the learning material and the teacher’s context. The paper differentiates between practical solution-focused strategies and more holistic approaches. The authors illustrate how methods teachers reach out to diverse learners and they conclude that data and standpoints are used in inclusive teaching to make connections and to support learning.

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

BERGHS, Maria
ATKIN, Karl
GRAHAM, Hilary
HATTON, Chris
THOMAS, Carol
2017

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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.

A world without Down’s syndrome? Online resistance on Twitter: #worldwithoutdowns and #justaboutcoping

BURCH, Leah
2017

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Presented by actress and comedian Sally Phillips, A World Without Down’s Syndrome has brought important ethical debates regarding prenatal screening into the public domain. By talking to people with Down’s syndrome, family members, and professionals, Sally has presented a nuanced and thorough examination of the type of world we are living in. Following the documentary, Twitter users have continued to engage with debates and have created a resilient platform for challenging public attitudes. This paper explores the ways in which Twitter hashtags have provided a space for such important and long overdue conversations. While it would not be possible to provide a full overview of the topical conversations that the two hashtags have provoked, I aim to focus on some of the most prominent topics. The following, then, will explore the potential of alternative narratives that resist, and disrupt, normative notions of the human using the hashtags #worldwithoutdowns and #justaboutcoping.

Confessions of an inadequate researcher: space and supervision in research with learning disabled children

BENZON, Nadia von
2016

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Location is often at the fore of decision-making regarding fieldwork and choice of methods. However, little research has directly discussed the importance of the choice of site in the production of research data, particularly concerning the way that different relationships will manifest between researcher and participant in different spaces. Site may be particularly important in research with (learning disabled) children, as research location is intertwined with the level of caregiving required from the researcher, and the sorts of surveillance the research engagement may be subject to. This paper draws on research with learning disabled 6–16-year olds that took place in homes, schools and the outdoors, in a variety of microgeographical locations from bedrooms to nature reserves. This paper reflects on the challenges, including the very ‘worst’ research moments, occurring in the different research environments. Whilst the research was carried out with learning disabled children and young people, the discussion has implications for research with non-disabled children and ‘vulnerable’ participants more broadly.

Ethical and methodological issues in research with Sami experiencing disability

MELBØE, Line
HANSEN, Ketil Lenert
JOHNSEN, Bjørn-Eirik
FEDREHEIM, Gunn Elin
DINESEN, Tone
Minde, Gunn-Tove
RUSTAD, Marit
2016

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Background. A study of disability among the indigenous Sami people in Norway presented a number of ethical and methodological challenges rarely addressed in the literature.

 

Objectives. The main study was designed to examine and understand the everyday life, transitions between life stages and democratic participation of Norwegian Sami people experiencing disability. Hence, the purpose of this article is to increase the understanding of possible ethical and methodological issues in research within this field. The article describes and discusses ethical and methodological issues that arose when conducting our study and identifies some strategies for addressing issues like these.

 

Methods. The ethical and methodological issues addressed in the article are based on a qualitative study among indigenous Norwegian Sami people experiencing disability. The data in this study were collected through 31 semi-structured in-depth interviews with altogether 24 Sami people experiencing disability and 13 next of kin of Sami people experiencing disability (8 mothers, 2 fathers, 2 sister and 1 guardian). Findings and discussion. The researchers identified 4 main areas of ethical and methodological issues. We present these issues chronologically as they emerged in the research process: 1) concept of knowledge when designing the study, 2) gaining access, 3) data collection and 4) analysis and accountability.

 

Conclusion. The knowledge generated from this study has the potential to benefit future health research, specifically of Norwegian Sami people experiencing disability, as well as health research concerning indigenous people in general, providing scientific-based insight into important ethical and methodological issues in research with indigenous people experiencing disability.

Exploring normativity in disability studies

VEHMAS, Simo
WATSON, Nick
2016

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Normativity is a concept that is often misapplied in disability studies, especially in ‘postconventional’ accounts, where the concept is conflated with ‘normal’, ‘normate’, or ‘standard’. This article addresses this confusion, explores the meaning and use of ‘normativity’, and presents some analytic tools to discuss normative issues of right and wrong. The article finishes by discussing examples where conceptual confusions result in confused normative judgments focusing in particular on agency, responsibility and moral status. The article argues that disability research should carefully consider the use of theories and empirical knowledge in the light of their ethical implications as well as the lived experiences of disability.

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