Search results for ‘Subject term:"muscular dystrophy"’ Sort:
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Fighting for a better life
- Author:
- DAVIS Rowenna
- Journal article citation:
- Community Care, 24.9.09, 2009, pp.26-27.
- Publisher:
- Reed Business Information
A recent report from a committee of MPs found that services for people with muscular dystrophy are so poor they "compromise patient survival". The difficulties faced by those with muscular dystrophy to secure adequate services are highlighted by reporting on the battle of the fight of one man, Sulaiman Kahn, to obtain a care package. He believes that offering the option of direct payments would provide people with more control over their care.
The effect of caregiving on women in families with Duchenne/Becker muscular dystrophy
- Authors:
- KENNESON Aileen, BOBO Janet Kay
- Journal article citation:
- Health and Social Care in the Community, 18(5), September 2010, pp.520-528.
- Publisher:
- Wiley
This study assessed the psychosocial health among female caregivers in families with Duchenne/Becker muscular dystrophy (DBMD). A survey of women among families with DBMD in the US collected data related to the care recipient, perception of caregiving demands, personal factors, and socio-ecologic factors. Life satisfaction, stress, and distress were assessed as outcomes. Participants included 1,238 carers. Findings showed that, while caregivers were more likely to be married or cohabitating than women in the general US population, and a high level of resiliency was reported by 89.3% of caregivers, the rate of psychological distress was significantly higher among caregivers. Forty six percent reported high levels of stress, and only 61.7% reported that they were satisfied with their life. The post-ambulatory phase of DBMD was associated with decreased social support. Life satisfaction was dependent on high social support, high resiliency, high income, and form of DBMD. Distress and high stress were predicted by low resiliency, low social support, and low income. The authors concluded that interventions focused on resiliency and social support was likely to improve the quality of life of caregivers.
Other voices, other rooms: reflections on talking to young men with Duchenne muscular dystrophy and their families about transition to adulthood
- Author:
- ABBOTT David
- Journal article citation:
- Children and Society, 26(3), May 2012, pp.241-250.
- Publisher:
- Wiley
In the social sciences, there is now a considerable and well-established body of evidence on the views of disabled children and young people. However, proper discussions on the role of the researcher have been marginalised in the much-needed exploration of disabled children's views. This article, drawing on a previous qualitative study of the transition to adulthood for young men with Duchenne muscular dystrophy, presents the authors personal reflection on the interview encounter between the interviewer, young men and their families. It suggests that more information may be learnt about the experiences of disabled children and young people if researchers can find ways of describing the co-production of responses, non-responses and meaning within research interviews. Implications for futures research are discussed.
Parents' perspectives on coping with Duchenne muscular dystrophy
- Author:
- WEBB C. L.
- Journal article citation:
- Child: Care, Health and Development, 31(4), July 2005, pp.385-396.
- Publisher:
- Wiley
The author, who has a grown son with Duchenne Muscular Dystrophy (DMD), has personally experienced a lack of available information for parents about coping with DMD. Therefore, as a longtime personal goal, she developed this study to address that lack of information. Fifteen semi-structured interviews were conducted with 23 parents (n = 7 with both parents; n = 1 with two sisters; n = 6 with mothers only; n = 1 with father only). The purpose of the interviews was to examine the strategies parents use to cope when their sons have DMD. The interviews were conducted in 12 states, taped and transcribed. Grounded theory analysis of the interview data indicated the willingness of these parents to share information to empower others like themselves. Parents want to be heard and valued as experts on DMD by medical and other professionals who interact with their sons. In addition, they want to proactively participate in their sons' lives and to encourage other parents to do the same.
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.
The Golden Freeway: a preliminary evaluation of a pilot study advancing information technology as a social intervention for boys with Duchenne muscular dystrophy and their families
- Authors:
- SOUTTER Jennifer, et al
- Journal article citation:
- Health and Social Care in the Community, 12(1), January 2004, pp.25-33.
- Publisher:
- Wiley
Established information technology was used in an attempt to reduce social isolation by providing each family with a child with Duchenne muscular dystrophy with a personal computer and e-mail and Internet connectivity. Seventy-four of the 88 families in northern England (Cumbria, Durham, Northumberland, Teesside and Tyne and Wear) with a boy with Duchenne muscular dystrophy diagnosed before January 2000 had the equipment installed. Evaluations of usage and parental perceptions of the project were carried out at 3 and 12 months post-installation. Results from quantitative and qualitative interviews with parents indicated that benefits accrued to the families and the boys: family relationships can be extended, and the boys can acquire a degree of independence which, according to parents' views, can boost self-confidence and self-esteem. As hoped, social isolation was felt to have been reduced, and an occupation, interest and enjoyment provided. The greatest use of the computer was for schoolwork with siblings sharing in this. Cost proved to be a problem for a number of families. For the project team, there were unexpected aspects: creating an e-community was more difficult than anticipated, more training was required and not all families would ever use the equipment to its fullest. However, families did emphasise the value of the project as a way of opening the world for their sons.
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)
Living with Duchenne muscular dystrophy: relational autonomy and decision-making
- Author:
- SKYRME Sarah
- Journal article citation:
- Children and Society, 30(3), 2016, pp.220-229.
- Publisher:
- Wiley
Interviews were conducted with boys and young men who have Duchenne muscular dystrophy, exploring their thoughts on making a decision to participate in medical research. This article focuses on one of the key findings, discussing how the participants identified their parents as carers, spokespersons and advisors. The term ‘relational autonomy’ encapsulates these co-operative relationships, illustrating how they can help young people living with a degenerative disability to exercise some agency and autonomy. The boys and their families have demonstrated how disabled children who are physically dependent can be supported by their parents, without compromising independence. (Publisher abstract)
‘Wasting precious time’: young men with Duchenne muscular dystrophy negotiate the transition to adulthood
- Authors:
- ABBOTT David, CARPENTER John
- Journal article citation:
- Disability and Society, 29(8), 2014, pp.1192-1205.
- Publisher:
- Taylor and Francis
Young men with Duchenne muscular dystrophy (DMD) have until recently died before they reached adulthood. Now they are living longer but with a corresponding lack of forethought about how they should be supported in adulthood. This study investigates what is happening for young men with DMD and how they were being supported in three areas of England. Semi-structured interviews were conducted with 37 young men (aged 15+) with DMD and 58 other family members. The findings suggested that too many young men had finished education and training and were at home during the day without meaningful activity. In part, the complicated nature of shifting expectations across the life-course had made planning for an adult life with DMD very challenging. This could be exacerbated by problematic assumptions and stubborn barriers. (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)