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Journal article Full text available online for free

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.

Book Full text available online for free

Breaking point: the crisis in accessible housing and adaptations

Author:
MUSCULAR DYSTROPHY UK
Publisher:
Muscular Dystrophy UK
Publication year:
2015
Pagination:
14
Place of publication:
London

Based on a survey of people affected by muscle-wasting conditions, carried out between July and September 2015, and Freedom of Information requests to local councils, this report uncovers a crisis in accessible housing, which is having a devastating effect on people’s lives. The findings show that: well over a third of individuals and families faced debt and serious financial hardship when trying to fund vital adaptations for their homes; local councils have hundreds of people waiting to be rehoused in accessible accommodation but no houses available; individuals are going without vital adaptations because they are unable to afford the costs, in some cases leaving them unable to use the bath or shower; over a third of local councils provide no additional financial help with the costs of adaptations; some local councils have minimum residency periods of 5 years and over, during which time individuals and families with muscle-wasting conditions can face periods of rapid deterioration without the right support. The report calls for: an increase in the number of accessible properties; increase of the statutory maximum grant available for Disabled Facilities Grants (DFGs), ensuring that this figure moves up in line with inflation; greater use of discretionary payments for DFGs; local authorities to apply criteria on minimum residency periods with greater flexibility; and all local authorities to hold a register of accessible properties. (Edited publisher abstract)

Journal article

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-Blackwell

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.

Book Full text available online for free

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)

Journal article

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-Blackwell

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.

Book Full text available online for free

Transition to adulthood for young men with Duchenne muscular dystrophy and their families: final report to the Department of Health

Authors:
ABBOTT Dave, CARPENTER John, BUSBY Kate
Publisher:
Great Britain. Department of Health. Research Initiative for Long Term Neurological Conditions
Publication year:
2009
Pagination:
164p., bibliog.
Place of publication:
London

Improvements in the management of Duchenne Muscular Dystrophy (DMD) have meant that young men are reaching stages of adulthood that were not previously anticipated and are looking forward to the prospect of living independently with appropriate support. The objectives of this study were to investigate, from the perspective of these young men, how their health and well being, and that of their parents, can be maximised during this transition. A postal survey was sent to all parents with a son with DMD aged 15 or over living in the South West and West Midlands and the North East of England. Interviews were conducted with 40 young men, their parents and siblings (n=102) about growing older and the issues they face in transition such as support, independence, education and beyond, and their social lives and relationships. All but three of the families characterised their overall experience of service provision as problematic. They felt there was insufficient specific information about options and choices. Difficulties were reported in accessing and fully participating in further education; only one young man had experience of paid work. There were wide variations in the nature and level of support available. The way families talked about living with DMD was highly individual and a clear theme was that the young men preferred not to think about it very much and wanted to “live for the day” and get on with the ordinary business of being a family.

Journal article

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-Blackwell

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.

Journal article

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:
Informa Healthcare

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.

Journal article

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-Blackwell

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.

Journal article

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-Blackwell

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)

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