Ageing with neuromuscular disease: getting lost in transitions

References

• Nätterlund P-OS, Gerd Ahlström, Birgitta. The illness experience of adult persons with muscular dystrophy. Disabil Rehabil. 2001;23(17):788–798.
   PubMed Web of Science ®Google Scholar
• LaDonna KA. A literature review of studies using qualitative research to explore chronic neuromuscular disease. J Neurosci Nurs. 2011;43(3):172–182.
   PubMed Web of Science ®Google Scholar
• Aho AC, Hultsjö S, Hjelm K. Perceptions of the transition from receiving the diagnosis recessive limb-girdle muscular dystrophy to becoming in need of human support and using a wheelchair: an interview study. Disabil Rehabil. 2019;41(19):2289–2298.
   PubMed Web of Science ®Google Scholar
• Meade O, Buchanan H, Coulson N. The use of an online support group for neuromuscular disorders: a thematic analysis of message postings. Disabil Rehabil. 2018;40(19):2300–2310.
   PubMed Web of Science ®Google Scholar
• Boström K, Ahlström G. Living with a chronic deteriorating disease: the trajectory with muscular dystrophy over ten years. Disabil Rehabil. 2004;26(23):1388–1398.
   PubMed Web of Science ®Google Scholar
• McDonald CM, Campbell C, Torricelli RE, et al. Ataluren in patients with nonsense mutation Duchenne muscular dystrophy (ACT DMD): a multicentre, randomised, double-blind, placebo-controlled, phase 3 trial. Lancet. 2017;390(10101):1489–1498.
   PubMed Web of Science ®Google Scholar
• Finkel RSD, Chiriboga CAMD, Vajsar JMD, et al. Treatment of infantile-onset spinal muscular atrophy with nusinersen: a phase 2, open-label, dose-escalation study. Lancet. 2016;388(10063):3017–3026.
   PubMed Web of Science ®Google Scholar
• Mendell JR, Al-Zaidy S, Shell R, et al. Single-dose gene-replacement therapy for spinal muscular atrophy. N Engl J Med. 2017;377(18):1713–1722.
   PubMed Web of Science ®Google Scholar
• Gibson BE, Zitzelsberger H, McKeever P. 'Futureless persons': shifting life expectancies and the vicissitudes of progressive illness. Sociol Health Illn. 2009;31(4):554–568.
   PubMed Web of Science ®Google Scholar
• Martinsen B, Dreyer P. Ageing with muscular disease. Open Nurs J. 2016;10(1):131–138.
   PubMedGoogle Scholar
• Klingbeil H, Baer HR, Wilson PE. Aging with a disability. Arch Phys Med Rehabil. 2004;85(7 Suppl 3):S68–S73. quiz S74-5.
   PubMed Web of Science ®Google Scholar
• Harrison TC, Stuifbergen A. A hermeneutic phenomenological analysis of aging with a childhood onset disability. Health Care Women Int. 2005;26(8):731–747.
   PubMedGoogle Scholar
• Remillard ET, Fausset CB, Fain WB. Aging with long-term mobility impairment: maintaining activities of daily living via selection, optimization, and compensation. Gerontologist. 2019;59(3):559–569.
   PubMed Web of Science ®Google Scholar
• Groah SL, Charlifue S, Tate D, et al. Spinal cord injury and aging: challenges and recommendations for future research. Am J Phys Med Rehabil. 2012;91(1):80–93.
   PubMed Web of Science ®Google Scholar
• Rush KL, Watts WE, Stanbury J. Older adults' perceptions of weakness and ageing. Int J Older People Nurs. 2013;8(1):1–9.
   PubMedGoogle Scholar
• Grenier A. Transition and the lifecourse – challenging the constructions of growing old. Bristol: The Policy Press; 2012.
   Google Scholar
• Kvale S. Interviews: learning the craft of qualitative research interviewing. 2 ed. Los Angeles: Sage Publications; 2009.
   Google Scholar
• Ricoeur P. Time and narrative. Chicago: University of Chicago Press; 1984.
   Google Scholar
• Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care. 2007;19(6):349–357.
   PubMed Web of Science ®Google Scholar
• Gentles S, Charles C, Ploeg J, et al. Sampling in qualitative research: insights from an overview of the methods literature. Qual Rep. 2015;20(11):1772–1789.
   Web of Science ®Google Scholar
• Sandelowski M. The problem of rigor in qualitative research. Adv Nurs Sci. 1986;8(3):27–37.
   PubMed Web of Science ®Google Scholar
• Grassman EJ, Whitaker A, editors. Ageing with disability. A lifecourse perspective. Great Britain (Bristol): Policy Press University of Bristol; 2013.
   Google Scholar
• World Medical Association declaration of Helsinki ethical principles for medical research involving human subjects. J Am Med Assoc. 2013;310:2191–2194.
   PubMed Web of Science ®Google Scholar
• Ricoeur P. The hermeneutic function of distanciation. Philosophy Today. 1973;17(2):129–141.
   Google Scholar
• Dreyer PS, Pedersen BD. Distanciation in Ricoeur's theory of interpretation: narrations in a study of life experiences of living with chronic illness and home mechanical ventilation. Nurs Inq. 2009;16(1):64–73.
   PubMed Web of Science ®Google Scholar
• Ricoeur P. From existentiallism to the philosophy of language. Philos Today. 1973;17(2):88–96.
   Google Scholar
• Ricoeur P. Interpretation theory: discourse and the surplus of meaning. 6 ed. Fort Worth (TX): Texas Christian University Press; 1976.
   Google Scholar
• Kostanjsek N, Rubinelli S, Escorpizo R, et al. Assessing the impact of health conditions using the ICF. Disabil Rehabil. 2011;33(15–16):1475–1482.
   PubMed Web of Science ®Google Scholar
• Afaf Ibrahim M. Transitions theory: middle-range and situation-specific theories in nursing research and practice. New York: Springer Pub. Co.; 2010.
   Google Scholar
• Maribo T, Petersen KS, Handberg C, et al. Systematic literature review on ICF from 2001 to 2013 in the nordic countries focusing on clinical and rehabilitation context. J Clin Med Res. 2016;8(1):1–9.
   PubMedGoogle Scholar
• World Health Organization. International classification of functioning, disability and health: ICF. Geneva: World Health Organization; 2001.
   Google Scholar
• Putnam M. Linking aging theory and disability models: increasing the potential to explore aging with physical impairment. Gerontologist. 2002;42(6):799–806.
   PubMed Web of Science ®Google Scholar
• Thompson L. Functional changes in persons aging with spinal cord injury. Assist Technol. 1999;11(2):123–129.
   PubMed Web of Science ®Google Scholar
• Clarke PPD, Latham KPD. Life course health and socioeconomic profiles of Americans aging with disability. Disabil Health J. 2014;7(1 Suppl):S15–S23.
   PubMed Web of Science ®Google Scholar
• Lundström U, Wahman K, Seiger Å, et al. Participation in activities and secondary health complications among persons aging with traumatic spinal cord injury. Spinal Cord. 2017;55(4):367–372.
   PubMed Web of Science ®Google Scholar