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Research Papers

Experiences of attendance at a neuromuscular centre: perceptions of adults with neuromuscular disorders

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Pages 1022-1032 | Accepted 01 Aug 2010, Published online: 23 Sep 2011

References

  • Brown SC, Jimenez-Mallebera C. Biochemical and molecular basis of muscle disease. In: Disorders of voluntary muscle. Karpati G, Hilton-Jones D, Bushby K, Griggs RC, editors. 8th ed. Cambridge: Cambridge University Press; 2010. pp 37–80.
  • Mukherjee M, Mittal B. Muscular dystrophies. Indian J Paediatr 2004;71:161–168.
  • McDonald CM. Physical activity, health impairments, and disability in neuromuscular disease. Am J Phys Med Rehabil 2002;81:108–120.
  • Ahlström G, Sjöden P-O. Coping with illness-related problems and quality of life in adult individuals with muscular dystrophy. J Psychosom Res 1996;41:365–376.
  • Emery AE. Muscular dystrophy. 3rd ed. Oxford: Oxford University Press; 2008. pp 1–3.
  • Hill ME, Phillips MF. Service provision for adults with long-term disability: a review of services for adults with chronic neuromuscular conditions in the United Kingdom. Neuromusc Disord 2006;16:107–112.
  • Norwood FL, Harling C, Chinnery PF, Eagle M, Bushby K, Straub V. Prevalence of genetic muscle disease in Northern England: in-depth analysis of a muscle clinic population. Brain 2009;132: 3175–3186.
  • All Party Parliamentary group for Muscular Dystrophy. Access to specialist neuromuscular care: the Walton ReportLondon: Muscular Dystrophy Campaign; 2009. pp 7–11.
  • Gibson BE, Young NL, Upshur RE, McKeever P. Men on the margin: a Bourdieusian examination of living into adulthood with muscular dystrophy. Soc Sci Med 2007;65:505–517.
  • Muscular Dystrophy Campaign. Building on the foundations: the need for a specialist neuromuscular service across EnglandLondon: Muscular Dystrophy Campaign; 2007. p 2.
  • Parker AE, Robb SA, Chambers AC, Davidson AC, Evans K, O'Dowd J, Williams AJ, Howard RS. Analysis of an adult Duchenne muscular dystrophy population. Qual J Med 2005;98:729–736.
  • Department of Health. The National service framework for long-term conditionsLondon: The Stationary Office; 2005.
  • Kilmer DD. Response to resistive strengthening exercise training in humans with neuromuscular disease. Am J Phys Med Rehabil 2002;81:121–126.
  • Wang CH, Finkel RS, Bertini ES, Schroth M, Simonds A, Wong B, Aloysius A, Morrison L, Main M, Crawford TO, Trela A, Participants of the International Conference on SMA Standard of Care. Consensus statement for standard of care in spinal muscular atrophy. J Child Neurol 2007;22:1027–1049.
  • Ahlström G, Lindvall B, Wenneberg S, Gunnarsson LG. A comprehensive rehabilitation programme tailored to the needs of adults with muscular dystrophy. Clin Rehabil 2006;20:132–141.
  • Pieterse AJ, Cup EH, Knuijt S, Hendricks HT, Van Engelen BG, Van der Wilt G-J, Oostendorp RA. Development of a tool to guide referral of patients with neuromuscular disorders to allied health services: part one. Disabil Rehabil 2008;30:855–862.
  • Cup EH, Pieterse AJ, Knuijt S, Hendricks HT, Van Engelen BG, Oostendorp RA, Van der Wilt G. Referral of patients with neuromuscular disease to occupational therapy, physical therapy and speech therapy: usual practice versus multidisciplinary advice. Disabil Rehabil 2007;29:717–726.
  • NeuroMuscular Centre. Social accounts and annual report and financial statementsWinsford: NMC2007–08.
  • Cott CJ. Client-centred rehabilitation: what is it and how do we measure it? Physiotherapy 2008;94:89–90.
  • Stake RE. The art of case study reseachLondon: Sage Publications; 1995. p 8.
  • Seidman I. Interviewing as qualitative research: a guide for researchers in education and the social sciences. 2nd ed. NewYork: Teachers College Press; 1998. p 66.
  • QSR. NVivo. Version 7Melbourne: QSR International Pty Ltd; 2006. pp 18–30.
  • Pope C, Ziebland S, Mays N. Analysing qualitative data. Br Med J 2000;320:114–116.
  • Attride-Stirling J. Thematic networks: an analytic tool for qualitative research. Qual Res 2001;1:385–405.
  • Strauss A, Corbin J. Basics of qualitative research: techniques & procedures for developing grounded theory. 2nd ed. London: Sage Publications; 1998. pp 101–121.
  • Department of Health. Transition: getting it right for young people: improving the transition of young people with long term conditions from children's to adult health servicesLondon: The Stationary Office; 2006.
  • Rosen DS, Blum RW, Britto M, Sawyer SM, Siegel DM. Transition to adult health care for adolescents and young adults with chronic conditions. J Adolesc Health 2003;33:309–311.
  • Nätterlund B, Sjöden P-O, Ahlström G. The illness experience of adult persons with muscular dystrophy. Disabil Rehabil 2001;23:788–798.
  • Michaud P-A, Suris J-C, Viner R. The adolescent with a chronic condition. II. Healthcare provision. Arch Dis Child 2004;89:943–949.
  • Darzi A. High quality care for all: NHS next stage review final reportLondon: The Stationary Office; 2008.
  • Masala C, Petretto DR. From disablement to enablement: conceptual models of disability in the 20th century. Disabil Rehabil 2008;30:1233–1244.
  • Delmar C, Bøje T, Dylmer D, Forup L, Jakobsen C, Møller M, Sønder H, Pedersen BD. Achieving harmony with oneself: life with a chronic illness. Scand J Caring Sci 2005;19:204–212.
  • Sigurgeirsdottir J, Halldorsdottir S. Existential struggle and self-reported needs of patients in rehabilitation. J Adv Nurs 2007;61:384–392.
  • Renz M, Koeberle D, Cerny T, Strasser F. Between utter despair and essential hope. J Clin Oncol 2009;27:146–149.
  • Uppal S. Impact of the timing, type and severity of disability on the subjective well-being of individuals with disabilities. Soc Sci Med 2006;63:525–539.
  • Grootenhuis MA, de Boone J, van der Kooi AJ. Living with muscular dystrophy: health related quality of life consequences for children and adults. Health Qual Life Outcomes 2007;5:31.
  • Boström K, Nätterlund BS, Ahlström G. Sickness impact in people with muscular dystrophy: a longitudinal study over 10 years. Clin Rehabil 2005;19:686–694.
  • Ellis R, Kosma M, Cardinal BJ, Bauer JJ, McCubbin JA. Physical activity beliefs and behaviour of adults with physical disabilities. Disabil Rehabil 2007;29:1221–1227.
  • Goffman E. The presentation of self in everyday lifeLondon: Penguin Books; 1990. p 30.
  • Strandmark M. Ill health is powerlessness: a phenomenological study about worthlessness, limitations and suffering. Scand J Caring Sci 2004;18:135–144.
  • Rhodes P, Nocon A, Small N, Wright J. Disability and identity: the challenge of epilepsy. Disabil Soc 2008;23:385–395.
  • Watermeyer B, Swartz L. Conceptualising the psycho-emotional aspects of disability and impairment: the distortion of personal and psychic boundaries. Disabil Soc 2008;23:599–610.
  • Yar M. ‘Recognition and the Politics of Human(e) Desire’. Theory Culture Soc 2001;18:57–76.
  • McAllister F. Wellbeing: concepts and challenges. Discussion Paper prepared for the Sustainable Development Research Network. Internet. 2005. Electronic Citation. http://www.sdrnadmin.rechord.com/wp-content/uploads/sdrnwellbeingpaper-final_000.pdf. Last accessed 15 February 2009.
  • Steptoe A, O'Donnell K, Marmot M, Wardle J. Positive affect and psychosocial processes related to health. Br J Psychol 2008;99:211–227.
  • Donovan N, Halpern D. Life satisfaction: the state of knowledge and implications for governmentLondon: Strategy Unit, Cabinet Office; 2002.
  • Seeman TE. Social ties and health: the benefits of social integration. Ann Epidemiol 1996;6:442–451.
  • Eheart BK, Hopping D, Power MB, Mitchell ET, Racine D. Generations of hope communities: an intergenerational neighborhood model of support and service. Child Youth Serv Rev 2009;31:47–52.
  • Hemmerdinger JM, Stoddart S, Lilford RJ. A systematic review of tests of empathy in medicine. BMC Med Educ 2007;7:24.
  • Department of Health. Our health, our care, our say: a new direction for community servicesLondon: The Stationary Office; 2006.
  • Disability and Employment. United Nations enable. Rights and dignity of persons with disability. Internet No date. Electronic Citation. http://www.un.org/disabilities/default.asp?id==255. Last accessed 10 May 2010.
  • Department for Work and Pensions. A new deal for welfare: empowering people to workLondon: The Stationary Office; 2006.
  • Fowler WM, Abresch RT, Koch TR, Brewer ML, Bowden RK, Wanlass RL. Employment profiles in neuromuscular diseases. Am J Phys Med Rehabil 1997;76:26–37.
  • The Prime Ministers Strategy Unit. Improving the life chances of disabled peopleLondon: Cabinet Office; 2005.
  • Department for Work and Pensions. Improving health and work: changing lives' the government's response to ‘Working for a healthier tomorrow’London: The Stationary Office; 2008.
  • Frankl V. Man's search for meaningNewYork: Washington Square Press; 1985. p 133.
  • New Economics Foundation (NEF). A well-being manifesto for a flourishing societyLondon: NEF; 2004.
  • Flick U. An introduction to qualitative researchCalifornia: Sage Publications; 1998. p 185.

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