Resources search

“With CO-OP I’m the boss” – experiences of the cognitive orientation to daily occupational performance approach as reported by young adults with cerebral palsy or spina bifida

OHRVALL, Ann-Marie
BERGQVIST, Lena
HOFGREN, Caisa
PENY-DAHLSTRAND, Marie
May 2019

Expand view

Purpose: Restrictions to activity and participation in persons with cerebral palsy or spina bifida are often due to both motor and executive dysfunction. Hence methods focusing solely on motor issues are not enough to enhance participation. The Cognitive Orientation to daily Occupational Performance ApproachTM is a performance-based approach offering clients opportunities to create their own strategies to learn skills. The aim of the present study was to explore and describe experiences of the Cognitive Orientation to daily Occupational Performance Approach as reported by young adults with cerebral palsy or spina bifida.

 

Methods: Qualitative content analysis was used. Semi-structured individual interviews were conducted with the 10 participants aged 16–28, post-intervention and at 6-months follow-up.

 

Results: The participants described how the Cognitive Orientation to daily Occupational Performance Approach enhanced their self-efficacy. Four categories describing the participants’ experiences emerged: “CO-OP is a different way of learning”, “CO-OP sometimes puts a strain on me”, “CO-OP supports my way of thinking and doing” and “CO-OP boosts me”.

 

Conclusion: The young adults expressed that the Cognitive Orientation to daily Occupational Performance intervention, although sometimes challenging, was worth the effort because it provided them with an opportunity to master everyday-life problems by using meta-cognitive thinking, which enhanced their self-efficacy.

Persons with profound intellectual disability and their right to sex

VEHMAS, Simo
2019

Expand view

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

Expand view

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.

Development of an evidence-based practice framework to guide decision making support for people with cognitive impairment due to acquired brain injury or intellectual disability

DOUGLAS, Jacinta
BIGBY, Christine
November 2018

Expand view

Purpose: At least 5% of people in Australia and the USA have cognitive impairment and require support for decision-making. This paper details a research program whereby an evidence-based Support for Decision Making Practice Framework has been developed for those who support people with cognitive disabilities to make their own decisions across life domains.

 

Methods: The La Trobe framework was derived from a research program modeled on the Medical Research Council four-phase approach to development and evaluation of complex interventions. We completed phase one (development) by: (1) systematically reviewing peer-reviewed literature; and (2) undertaking qualitative exploration of the experience of support for decision-making from the perspectives of people with cognitive disabilities and their supporters through seven grounded theory studies. Results of phase two (feasibility and piloting) involving direct support workers and health professionals supported phase three (evaluation) and four (implementation), currently underway.

 

Results: The framework outlines the steps, principles, and strategies involved in support for decision-making. It focuses on understanding the will and preferences of people with cognitive disabilities and guides those who provide support including families, support workers, guardians, and health professionals.

 

Conclusions: This framework applies across diverse contemporary contexts and is the first evidence-based guide to support for decision-making.

‘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

Expand view

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

Expand view

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.

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

SMITH, Daniel G W
2017

Expand view

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.

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

BURCH, Leah
2017

Expand view

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

Expand view

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.

Sterilisation and intellectually disabled people in New Zealand—still on the agenda?

HAMILTON, C
2012

Expand view

Support through care and protection within a medical framework, rather than through the idea of independence within the least restrictive environment, continues to guide service provision for intellectually disabled people in the sexuality area. Past practices have included use of involuntary sterilisation. This article outlines the outcome of a search for information undertaken because of concerns that use of sterilisation-related procedures may remain embedded in contemporary approaches to sexuality support management. Verified instances of hysterectomy carried out between 1991 and 2001 were uncovered. Documents tabled at a Parliamentary Select Committee in 2003 expressing concerns about use in relation to young disabled girls were also found. Requests for sterilisation-related procedures exemplify how the right of all vulnerable citizens to full bodily integrity is currently adjudicated in New Zealand. It is suggested that further research is needed to pinpoint and address the underlying social customs through which requests for such procedures are negotiated and resolved.

E-bulletin