Troubling norms? Adults and teenagers with a life-limiting impairment in Denmark and England talk about their lives, support and future plans

Hoskin, Janet

doi:10.1080/08856257.2020.1754545

Cited by 5 publications

(2 citation statements)

References 25 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…Our findings therefore complement a call for a 'systemic cultural shift' in the way young men with Duchenne Muscular Dystrophy and other children and adults with special educational needs and disabilities are viewed and supported. 30…”

Section: What This Study Addsmentioning

confidence: 99%

‘It is easier to not allow them to see your disability straight away, to see you as a person’: An Interpretative Phenomenological Analysis of video gaming from the perspectives of men with Duchenne Muscular Dystrophy

2023

View full text Add to dashboard Cite

Background: Young men with Duchenne Muscular Dystrophy benefit from palliative care that supports their psychosocial needs. Acknowledging the sub-cultures they engage with can support their wellbeing. Anecdotal reports suggest video gaming is a sub-culture engaged with by young men with Duchenne Muscular Dystrophy. Aim: To explore the lived experience of video gaming from the perspective of young men with Duchenne Muscular Dystrophy. Design: Interpretative Phenomenological Analysis approach involving in-depth interviews using a topic guide that focused on social media broadly, with reference to video gaming. Sequential interviewing was undertaken to support participation regarding fatigue and tiredness, symptoms of Duchenne Muscular Dystrophy. Setting/participants: Participants were purposefully recruited from a hospice in the North of England. Twitter was used to support recruitment. Eight young men with Duchenne Muscular Dystrophy were recruited to the study. Results: Five themes were developed; ‘gamer as a shared and accepted identity’, ‘an existential and bodily escapism’, ‘introspection through video gaming’, ‘video gaming as a release’ and ‘when life gives you few choices-video game’. Motivations for engagement with video gaming are diverse and reflective of the situated perspectives of young men with Duchenne Muscular Dystrophy. Conclusions: An awareness of the popular sub-cultures that young men with Duchenne Muscular Dystrophy engage with is key to building a therapeutic alliance, establishing rapport and recognising personhood in interactions between professionals and persons in palliative care settings. This study highlights the value of video gaming, offering professionals valuable insight into its placement in the daily lives of young men with Duchenne Muscular Dystrophy.

show abstract

Section: What This Study Addsmentioning

confidence: 99%

‘It is easier to not allow them to see your disability straight away, to see you as a person’: An Interpretative Phenomenological Analysis of video gaming from the perspectives of men with Duchenne Muscular Dystrophy

2023

View full text Add to dashboard Cite

show abstract

“…In the United Kingdom and indeed in other high-income countries, typically, CYP with a tracheostomy are supported by paediatric teams across primary, secondary, and tertiary healthcare settings, including but not limited to acute Ear, Nose and Throat (ENT) teams, acute and community paediatricians, Allied Healthcare Professionals (AHP) in health and education, and children's community nursing teams. However, as CYP transition into adult care, there remains a risk of abandonment [26] and isolation [27] with a lack of coordinated services as no equivalent of a paediatrician exists, an ‘adultrician’ if you will, in adult services until geriatric services become appropriate. In contrast, there are services that lack paediatric specialists, such as in spinal cord injury, leaving them to be managed by adult services who may lack access and skills to support behavioural and social needs [28].…”

Section: Preparing For Transitionmentioning

confidence: 99%

Transitions in tracheostomy care: from childhood to adulthood

Edwards,

McRae

2023

Current Opinion in Otolaryngology &Amp; Head &Amp; Neck Surgery

View full text Add to dashboard Cite

Purpose of review The purpose of this review is to explore the evidence around children and young people who require a tracheostomy and transition into adult services, reflecting on the challenges and considerations for clinical practice as these needs increase. Recent findings There are a lack of data on the incidence and prevalence of children and young people with a tracheostomy transitioning to adult services for ongoing care. There are significant variations in care needs, technology and previous experiences that demand more than a simple handover process. Examples of service models that support the transition of care exist, however these lack specificity for children and young people with a tracheostomy. Summary Further exploration of the needs of children and young people requiring airway technology is indicated, particularly considering the short and long-term education, health, and social care needs.

show abstract

Sexual health and fertility in Duchenne muscular dystrophy—An exploratory study

Hoskin,

Cheetham,

Mitchell

et al. 2024

Muscle and Nerve

View full text Add to dashboard Cite

Introduction/AimsRecent clinical guidelines recommend that adolescents with Duchenne muscular dystrophy (DMD) who are on daily glucocorticoid treatment should be offered pubertal induction in order to ensure adult levels of sex hormones as they reach adulthood. However, it remains unclear how gonadal status, including androgen concentrations, impacts physical function and future fertility. The aim of this study was to give a voice to adults with DMD, exploring their perspectives around sexual health, hormone treatment, and fertility.MethodsQualitative data was collected from six adults with DMD through two online focus groups. Participants were recruited through Pathfinders Neuromuscular Alliance and Duchenne UK and invited to take part if they had DMD and were 18 years of age or older. Conversations were transcribed verbatim and an interpretivist paradigm was used with thematic analysis.ResultsThe main themes identified were (1) the need for communication and information about sexual health, (2) dealing with the potential fear of rejection, (3) physical barriers to relationships including sex, (4) testosterone supplementation in DMD, and (5) parenthood and fertility.DiscussionWe recommend that clinicians work with young people with DMD individually, to explore the benefits of testosterone treatment for them and their personal sexual health needs. If they are offered treatment, this should always be accompanied by the opportunity for psychological support. This work highlights the need for further research to establish the role of testosterone supplementation in adults with DMD and its effects on fertility and the value of specific emotional and practical support for sexual health.

show abstract

Troubling norms? Adults and teenagers with a life-limiting impairment in Denmark and England talk about their lives, support and future plans

Cited by 5 publications

References 25 publications

‘It is easier to not allow them to see your disability straight away, to see you as a person’: An Interpretative Phenomenological Analysis of video gaming from the perspectives of men with Duchenne Muscular Dystrophy

‘It is easier to not allow them to see your disability straight away, to see you as a person’: An Interpretative Phenomenological Analysis of video gaming from the perspectives of men with Duchenne Muscular Dystrophy

Transitions in tracheostomy care: from childhood to adulthood

Sexual health and fertility in Duchenne muscular dystrophy—An exploratory study

Contact Info

Product

Resources

About