Devoted protection: How parents of children with severe learning disabilities manage risks

Oulton, Kate; Heyman, Bob

doi:10.1080/13698570903013631

Cited by 30 publications

(38 citation statements)

References 20 publications

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“…The consequences, however, are far-reaching. Oulton and Heyman (2009) argue that the desire to protect employees often means that the responsibility for making decisions about risk in relation to daily care, schooling and health is falling more often on parents. Through their analysis of interviews with senior managers of community based services in Victoria, Australia; Sawyer, Green, and Moran (2007) note that whist the opportunities for positive risk-taking were acknowledged by senior managers, they also gave reasons why positive risk-taking was difficult Á including perceived risk to staff and the organisation.…”

Section: Fears Regarding Litigationmentioning

confidence: 99%

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Transforming positive risk-taking practices: the possibilities of creativity and resilience in learning disability contexts

Tai-Seale¹,

Nind

Simmons

2013

Scandinavian Journal of Disability Research

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In this article we examine discourses, conceptualisations and practices of positive risk-taking for or by children and adults with learning disabilities. We identify tensions and contradictions in positive risk-taking discourses that are unhelpful for clarifying for practitioners how positive risk-taking might be implemented. We suggest a conceptual framework that incorporates creativity and resilience and use this to offer examples from special and inclusive education (Intensive Interaction and Learning without Limits) that illustrate how positive risk-taking can be found in education practices. We conclude by arguing that conceptual frameworks such as the one proposed, when linked to supportive frameworks and guiding principles that emphasise professional judgement, offer one way to problematise and challenge current risk-averse practices in education, health and social care settings.

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Section: Fears Regarding Litigationmentioning

confidence: 99%

“…Regulation of organisational safety is increasing across learning disability services (Oulton and Heyman 2009;Sawyer, Green, and Moran 2007), the dual purpose being to ensure the safety of those involved and to reduce the risk of litigation. The consequences, however, are far-reaching.…”

Section: Fears Regarding Litigationmentioning

confidence: 99%

Transforming positive risk-taking practices: the possibilities of creativity and resilience in learning disability contexts

Tai-Seale¹,

Nind

Simmons

2013

Scandinavian Journal of Disability Research

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“…This temporal dynamic is accounted for in terms of two explanatory factors: missing the 'natural' prime-time for adventurous risk-taking even before the age of 16; and becoming too exhausted to catch-up later through being worn down by the demands of caring. The identification of the second explanatory factor depends on the presumption that caring for a relative with a disability is a personally debilitating burden, a view which does not necessarily correspond to those of carers themselves (Oulton and Heyman, 2009 (Jeanne, young carers project manager)…”

Section: Service-provider Perspectivesmentioning

confidence: 99%

‘The sooner you can change their life course the better’: the time-framing of risks in relationship to being a young carer

Heyman

2013

Health, Risk & Society

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In this article, we compare accounts given by young carers and specialist support workers about the riskiness of becoming a carer relatively early in life. We argue that since the mid1990s the policy response has problematised the comparatively early adoption of a caring role as a risk factor for future personal development. This temporal issue has become societally organised around concern about NEETs (young adults not in education, employment or training). Such concern is predicated on cultural assumptions, now being undermined in response to economic crisis, about the existence of a critical age for transition to adulthood, successful navigation of which requires a time-limited period of personal freedom. Our findings suggest that, whereas support workers mostly see young caring in terms of risks to future prospects, young carers themselves identify not only current stresses, but also personal gains, from their experiences. Instead of categorising the timing of their caring as a source of risk, young carer respondents questioned service shortcomings which they felt made it harder for them to cope in the present, particularly inadequate social service support for relatives with disabilities and insensitivities in the education system. They did not see service providers as helping them to manage their futures. We locate this tension in risk social science debates about individualisation (Beck and Beck-Gernsheim, 2002;Beck, 1992;Giddens, 1991); transition to adulthood in late modern society (Roberts, 2012;Roberts, 2007; Wyn and Woodman, 2007)

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“…They found that parents could feel a ‘weight of responsibility’ concerning their child's communication that could make them reluctant to go home and leave their child alone. An in-depth qualitative study29 carried out by Oulton et al supports these findings. Parents described a sense of devoted protection towards their child with ID, which meant they were simply not willing to take any risks by leaving their child in the care of someone they did not have complete confidence in.…”

Section: Introductionmentioning

confidence: 70%

Pay More Attention: a national mixed methods study to identify the barriers and facilitators to ensuring equal access to high-quality hospital care and services for children and young people with and without learning disabilities and their families

et al. 2016

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IntroductionDespite evidence of health inequalities for adults with intellectual disability (ID) there has yet to be a comprehensive review of how well hospital services are meeting the needs of children and young people (CYP) with ID and their families. We do not know how relevant existing recommendations and guidelines are to CYP, whether these are being applied in the paediatric setting or what difference they are making. Evidence of parental dissatisfaction with the quality, safety and accessibility of hospital care for CYP with ID exists. However, the extent to which their experience differs from parents of CYP without ID is not known and the views and experiences of CYP with ID have not been investigated. We will compare how services are delivered to, and experienced by CYP aged 5–15 years with and without ID and their families to see what inequalities exist, for whom, why and under what circumstances.Methods and analysisWe will use a transformative, mixed methods case study design to collect data over four consecutive phases. We will involve CYP, parents and hospital staff using a range of methods; interviews, parental electronic diary, hospital and community staff questionnaire, patient and parent satisfaction questionnaire, content analysis of hospital documents and a retrospective mapping of patient hospital activity. Qualitative data will be managed and analysed using NVivo and quantitative data will be analysed using parametric and non-parametric descriptive statistics.Ethics and disseminationThe study will run from December 2015 to November 2018. We have Health Authority Approval (IRAS project ID: 193932) for phase 1 involving staff only and ethical and Health Authority Approval for phases 2–4 (IRAS project ID: 178525). We will disseminate widely to relevant stakeholders, using a range of accessible formats, including social media. We will publish in international peer-reviewed journals and present to professional, academic and lay audiences through national and international conferences.

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Devoted protection: How parents of children with severe learning disabilities manage risks

Cited by 30 publications

References 20 publications

Transforming positive risk-taking practices: the possibilities of creativity and resilience in learning disability contexts

Transforming positive risk-taking practices: the possibilities of creativity and resilience in learning disability contexts

‘The sooner you can change their life course the better’: the time-framing of risks in relationship to being a young carer

Pay More Attention: a national mixed methods study to identify the barriers and facilitators to ensuring equal access to high-quality hospital care and services for children and young people with and without learning disabilities and their families

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