Search results for ‘Subject term:"muscular dystrophy"’ Sort:
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Men living with long-term conditions: exploring gender and improving social care: research findings
- Publisher:
- NIHR School for Social Care Research
- Publication year:
- 2014
- Pagination:
- 4
- Place of publication:
- London
The broader social care needs of many people with long-term conditions are not always well supported, such as getting help to find work, having help to maintain a good social life, or pursuing intimate relationships. This study focuses on the experiences of one group of men living with a long-term condition, to illustrate the importance of good quality social care. It is based on the hypothesis that the impact of male gender is rarely addressed in planning and delivering social care. Face to face interviews were carried out with 20 men, aged from 21 to 33 years, with Duchenne Muscular Dystrophy (DMD). The interviews were analysed using thematic and conversation analysis. The men in the study reported being treated as largely gender-less by organisations delivering social care, whilst the men themselves maintained a strong sense of male identity. Participants provided accounts of their similarities to, and differnces from, stereotypes of 'ordinary' men. Similarities included: wanting to be sexually active, developing self-esteem through academic achievement, work and rewarding activity, being a father, and living independently. Differences included: difficulties in attracting intimate partners, barriers to paid work, and restrictions on social life linked to inflexible support arrangements.The research highlights the importance for the social care sector to think about gender and the whole range of social and sexual needs men living with long term conditions may have. (Edited publisher abstract)
Interdisciplinary collaboration between primary care, social insurance and social services in the rehabilitation of people with musculoskeletal disorder: effects on self-rated health and physical performance
- Authors:
- HULTBERG Eva-Lisa, LONNROTH Knut, ALLEBECK Peter
- Journal article citation:
- Journal of Interprofessional Care, 19(2), March 2005, pp.115-124.
- Publisher:
- Taylor and Francis
Previous research shows there can be good results from co-financing between welfare sectors on the perceived quality of interprofessional collaboration. However, little is known about the impact on patient outcome of such schemes. This study aimed to assess whether co-financed teams with personnel from primary care, social insurance and social services have any effect on patients' health status. A comparative study of patients attending health care centres with and without a co-financed collaboration model was carried out. Although research has shown positive results from co-financed collaboration on staff and organization, we could not find that this new interdisciplinary team structure gave a better patient health outcome than conventional care.
Men living with long-term conditions: exploring gender and improving social care
- Authors:
- ABBOTT David, JEPSON Marcus, HASTIE Jon
- Journal article citation:
- Health and Social Care in the Community, 24(4), 2016, p.420–427.
- Publisher:
- Wiley
Disabled men have traditionally been seen as incomplete men or as entirely gender-less. Research which has looked at the intersection of disability and male gender has largely treated disabled men as a homogeneous group with little reference to, for example, impairment-related differences. The ongoing move towards self-directed, personalised social care in England suggests that support needs relating to gender may be taken more seriously. A qualitative study with 20 men with Duchenne muscular dystrophy in England in 2013 explored the men's experiences of the organisation and delivery of social care as it pertained to their sense of being men. The author's main finding was that social care in its broadest sense did little to support a positive sense of masculinity or male gender. More often than not the organisation and delivery of social care people de-gendered or emasculated many of the men who took part in the study. This paper speaks to the need to explore impairment-specific issues for disabled men; to deliver a more person-centred approach to social care which recognises the importance of the social and sexual lives of disabled men; and to create ways in which men can support and empower each other to assert essential human rights relating to independence, dignity and liberty. (Edited publisher abstract)
“The things that are inside of you are horrible”: children and young men with Duchenne Muscular Dystrophy talk about the impact of living with a long-term condition
- Authors:
- ABBOTT David, CARPENTER John
- Journal article citation:
- Child Care in Practice, 21(1), 2015, pp.67-77.
- Publisher:
- Taylor and Francis
Duchenne muscular dystrophy (DMD) is an inherited, progressive and life-limiting neuromuscular disease that affects boys. During their lives, they experience a series of medical and surgical interventions. Research reported in this paper took place in England with 37 young men living with DMD and their families and explored their experiences of growing up, school, work, friends and family. In accordance with the social model of disability, this research was initially reluctant to dwell on the physiological aspects of living with a long-term, degenerative condition. The authors focused on social model concerns about the disabling barriers to the participants' participation in society, the disabling responses of professionals and barriers to achieving their aspirations. However, young people with DMD also wanted to talk about how living with the condition caused them considerable pain and discomfort. They also explained the emotional impact of medical and surgical interventions. They reported very few opportunities to discuss these matters with family members or professional. Possible reasons for the absence of discussion about these issues are explored and the authors reflect on the consequences for both the young person and their family. The authors suggest that a reluctance to tackle the thorny issue of “body” and “impairment” in social science research with disabled children and young people means that important aspects of childhood disability are under-explored. (Edited publisher abstract)
Understanding disability: causes, characteristics and coping
- Author:
- STOPFORD Victoria
- Publisher:
- Edward Arnold
- Publication year:
- 1987
- Pagination:
- 171p., illus., bibliogs.
- Place of publication:
- London