Living with Duchenne Muscular Dystrophy: Relational Autonomy and Decision‐Making

Skyrme, Sarah

doi:10.1111/chso.12134

Cited by 14 publications

(7 citation statements)

References 33 publications

(49 reference statements)

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“…It is currently incurable, and medical research, which sometimes requires the participation of boys with DMD, is focused on finding treatments and an eventual cure. Hence, this article and the study it is based on are timely, as there has been little research on how children experience recruitment into medical research (Dixon-Woods, Young, & Ross, 2006) and there is a corresponding lack of research on the lives of those with DMD (see Skyrme, 2015 for more on life with DMD and decision-making). The average age at death is around 19 years (Bushby et al, 2010), although life expectancy is extending with improved healthcare practices (Abbott & Carpenter, 2009).…”

Section: Introductionmentioning

confidence: 99%

In and On their Own Terms: Children and Young People's Accounts of Life with Duchenne Muscular Dystrophy

Skyrme¹

2016

Child Care in Practice

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Semi-structured interviews were conducted with boys and young men who have Duchenne muscular dystrophy (DMD), a severe, degenerative condition that only affects boys. The main focus of the interviews was to explore how the participants thought they might make a decision to take part in medical research. To better understand this, aspects of the participants' lives were discussed; they talked about the impact of discomfort and declining mobility, and the social issues they experienced, such as discrimination and a sense of difference. Their observations indicate that living with a degenerative condition has physical and social impacts, and that there are limited opportunities for them to talk about these issues. It was also apparent that parents are key figures who provide care for their child, often in the absence of comprehensive support services. Raising these matters privileges the experiences of severely disabled children and young people, who live with increasing muscle weakness, disablist attitudes and intensifying support needs. Their contributions build on understandings of life with a degenerative condition, highlighting the intersection of impairment and social issues in their lived experience.

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Section: Introductionmentioning

confidence: 99%

In and On their Own Terms: Children and Young People's Accounts of Life with Duchenne Muscular Dystrophy

Skyrme¹

2016

Child Care in Practice

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“…Despite this, adolescents and young adults feel independent and autonomous in their lives and their ability to self-advocate and manage their condition in cooperation with their caregivers. 63 , 64 Parents transition from being the primary provider and decision-maker to releasing decision-making and autonomy to their sons, while retaining a position as a knowledgeable consultant in their son’s care. 65 …”

Section: Adolescent Effects On Chronic Illnessmentioning

confidence: 99%

“…Research to date has demonstrated good, collaborative relationships between individuals with DMD and BMD and their caregivers. 63 – 65 Caregivers are able to transition decision-making autonomy to their children during adolescence and beyond, and the reported QOL of caregivers for individuals with DMD increases during this time after the event of loss of ambulation of their child. Caregivers report feeling more capable of managing their child’s condition at this stage, and instead focus on rearing their adolescent sons into men.…”

Section: Current Perspectives On Adolescence In Dmd and Bmdmentioning

confidence: 99%

“… 50 , 84 Caregivers, primarily mothers, continue to report feelings of guilt and inadequacy in caring for a child with DMD and transferring the affected X chromosome to their child. 63 , 69 Transition data demonstrate a delay in discussing the life-limiting nature of the condition with the child, and families hesitate to plan proactively for transition and medical management, avoiding any conversations that may broach subjects related to the variable nature of the condition or death. 70 , 83…”

Section: Current Perspectives On Adolescence In Dmd and Bmdmentioning

confidence: 99%

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Duchenne and Becker muscular dystrophy in adolescents: current perspectives

Andrews¹,

Wahl²

2018

AHMT

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Duchenne muscular dystrophy (DMD) and Becker muscular dystrophy (BMD) are life-limiting and progressive neuromuscular conditions with significant comorbidities, many of which manifest during adolescence. BMD is a milder presentation of the condition and much less prevalent than DMD, making it less represented in the literature, or more severely affected individuals with BMD may be subsumed into the DMD population using clinical cutoffs. Numerous consensus documents have been published on the clinical management of DMD, the most recent of which was released in 2010. The advent of these clinical management consensus papers, particularly respiratory care, has significantly increased the life span for these individuals, and the adolescent years are now a point of transition into adult lives, rather than a period of end of life. This review outlines the literature on DMD and BMD during adolescence, focusing on clinical presentation during adolescence, impact of living with a chronic illness on adolescents, and the effect that adolescents have on their chronic illness. In addition, we describe the role that palliative-care specialists could have in improving outcomes for these individuals. The increasing proportion of individuals with DMD and BMD living into adulthood underscores the need for more research into interventions and intracacies of adolescence that can improve the social aspects of their lives.

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“…However, their words have proven significant, making a major contribution to the way the research was conducted and is reported on. The parents' words depict the close, supportive relationships boys and parents have (Skyrme, 2016); these insights were instrumental in informing the analysis. While it was plausible to imagine such encounters might happen, their candour and spontaneity indicate not only how parents live in the moment but also how for some there is an ongoing sense of grief at their child's diagnosis and shortened lifespan.…”

Section: In the Fieldmentioning

confidence: 99%

Researching disabled children and young people’s views on decision-making: Working reflexively to rethink vulnerability

Skyrme

Woods

2018

Childhood

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Living with Duchenne Muscular Dystrophy: Relational Autonomy and Decision‐Making

Cited by 14 publications

References 33 publications

In and On their Own Terms: Children and Young People's Accounts of Life with Duchenne Muscular Dystrophy

In and On their Own Terms: Children and Young People's Accounts of Life with Duchenne Muscular Dystrophy

Duchenne and Becker muscular dystrophy in adolescents: current perspectives

Researching disabled children and young people’s views on decision-making: Working reflexively to rethink vulnerability

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