Shared meanings of success, happiness, and health among adults with cerebral palsy and physiotherapists: implications for practice and research

References

• Vogtle LK. Pain in adults with cerebral palsy: impact and solutions. Dev Med Child Neurol. 2009;51 Suppl 4:113–121.
   PubMed Web of Science ®Google Scholar
• Van Der Slot WM, Nieuwenhuijsen C, Van Den Berg-Emons RJ, et al. Chronic pain, fatigue, and depressive symptoms in adults with spastic bilateral cerebral palsy. Dev Med Child Neurol. 2012;54:836–842.
   PubMed Web of Science ®Google Scholar
• van der Dussen L, Nieuwstraten W, Roebroeck M, et al. Functional level of young adults with cerebral palsy. Clin Rehabil. 2001;15:84–91.
   PubMed Web of Science ®Google Scholar
• Roebroeck ME, Jahnsen R, Carona C, et al. Adult outcomes and lifespan issues for people with childhood-onset physical disability. Dev Med Child Neurol. 2009;51:670–678.
   PubMed Web of Science ®Google Scholar
• Ballin L, Balandin S. An exploration of loneliness: communication and the social networks of older people with cerebral palsy. J Intellect Dev Disabil. 2007;32:315–326.
   PubMed Web of Science ®Google Scholar
• Sandstrom K. The lived body - experiences from adults with cerebral palsy. Clin Rehabil. 2007;21:432–441.
   PubMed Web of Science ®Google Scholar
• Goffman E. Stigma: notes on the management of a spoiled identity. New York: Simon and Schuster; 1963.
   Google Scholar
• Blumberg L. Ballbark Normalcy In: Klein S, Kemp J, editors. Reflections from a different journey: what adults with disabilities wish all parents knew. Exeter (NH): Disabilities Books Press, LLC; 2011. p. 23.
   Google Scholar
• Charlton J. Nothing about us without us: disability oppression and empowerment. Berkeley (CA): University of California Press; 1998.
   Google Scholar
• Fleischer Zames D, Zames F. The disability rights movement: from charity to confrontation. Philadelphia: Temple University Press; 2011.
   Google Scholar
• Orlin MN, Cicirello NA, O'Donnell AE, et al. The continuum of care for individuals with lifelong disabilities: role of the physical therapist. Phys Ther. 2014;94:1043–1053.
   PubMed Web of Science ®Google Scholar
• Damiano DL. Activity, activity, activity: rethinking our physical therapy approach to cerebral palsy. Phys Ther. 2006;86:1534–1540.
   PubMed Web of Science ®Google Scholar
• Gannotti M, Minter C, Chambers H, et al. Life satisfaction, functional abilities, social roles, depression, environmental barriers, and health in young adults with cerebral palsy: an exploratory study. Crit Rev Phys Rehabil Med. 2015;27:95–103.
   Google Scholar
• Zalmstra TA, Elema A, Boonstra AM, et al. Validation of the caregiver priorities and child health index of life with disabilities (CPCHILD) in a sample of Dutch non-ambulatory children with cerebral palsy. Disabil Rehabil. 2015;37:411–416.
   PubMed Web of Science ®Google Scholar
• World Health Organization. International Classification of Functioning, Disability and Health (ICF). Geneva: World Health Organization; 2001.
   Google Scholar
• Gannotti ME, Christy JB, Heathcock JC, et al. A path model for evaluating dosing parameters for children with cerebral palsy. Phys Ther. 2014;94:411–421.
   PubMed Web of Science ®Google Scholar
• Sackett DL, Rosenberg WM, Gray JA, et al. Evidence based medicine: what it is and what it isn't. BMJ. 1996;312:71–72.
   PubMed Web of Science ®Google Scholar
• Andersson C, Mattsson E. Adults with cerebral palsy: a survey describing problems, needs, and resources, with special emphasis on locomotion. Dev Med Child Neurol. 2001;43:76–82.
   PubMed Web of Science ®Google Scholar
• Hergenroder H, Blank R. Subjective well-being and satisfaction with life in adults with spastic cerebral palsy: a pilot study of a randomized sample. Dev Med Child Neurol. 2009;51:389–396.
   PubMed Web of Science ®Google Scholar
• Gannotti ME, Minter CL, Chambers HG, et al. Self-concept of adults with cerebral palsy. Disabil Rehabil. 2011;33:855–861.
   PubMed Web of Science ®Google Scholar
• Hilberink SR, Roebroeck ME, Nieuwstraten W, et al. Health issues in young adults with cerebral palsy: towards a life-span perspective. J Rehabil Med. 2007;39:605–611.
   PubMed Web of Science ®Google Scholar
• Peterson MD, Gordon PM, Hurvitz EA. Chronic disease risk among adults with cerebral palsy: the role of premature sarcopoenia, obesity and sedentary behaviour [Review]. Obes Rev. 2013;14:171–182.
   PubMed Web of Science ®Google Scholar
• Turk MA. Health, mortality, and wellness issues in adults with cerebral palsy. Dev Med Child Neurol. 2009;51 Suppl 4:24–29.
   PubMed Web of Science ®Google Scholar
• Turk MA, Scandale J, Rosenbaum PF, et al. The health of women with cerebral palsy. Phys Med Rehabil Clin N Am. 2001;12:153–168.
   PubMedGoogle Scholar
• Nieuwenhuijsen C, van der Slot WM, Dallmeijer AJ, et al. Physical fitness, everyday physical activity, and fatigue in ambulatory adults with bilateral spastic cerebral palsy. Scand J Med Sci Sports. 2011;21:535–542.
   PubMed Web of Science ®Google Scholar
• Lawrence H, Hills S, Kline N, et al. Effectiveness of exercise on functional mobility in adults with cerebral palsy: a systematic review. Physiother Can. 2016;68:398–407.
   PubMed Web of Science ®Google Scholar
• Levin I, Lewek MD, Feasel J, et al. Gait training with visual feedback and proprioceptive input to reduce gait asymmetry in adults with cerebral palsy: a case series. Pediatr Phys Ther. 2017;29:138–145.
   PubMed Web of Science ®Google Scholar
• Albrecht GL, Devlieger PJ. The disability paradox: high quality of life against all odds. Soc Sci Med. 1999;48:977–988.
   PubMed Web of Science ®Google Scholar
• Balandin S, Berg N, Waller A. Assessing the loneliness of older people with cerebral palsy. Disabil Rehabil. 2006;28:469–479.
   PubMed Web of Science ®Google Scholar
• van Campen C, Iedema J. Are persons with physical disabilities who participate in society healthier and happier? Structural equation modelling of objective participation and subjective well-being. Qual Life Res. 2007;16:635–645.
   PubMed Web of Science ®Google Scholar
• Jahnsen R, Villien L, Aamodt G, et al. Musculoskeletal pain in adults with cerebral palsy compared with the general population [Research Support, Non-U.S. Gov't]. J Rehabil Med. 2004;36:78–84.
   PubMed Web of Science ®Google Scholar
• Musschenga A. The relation between concepts of quality-of-life, health, and happiness. J Med Philos. 1997;22:11–28.
   PubMed Web of Science ®Google Scholar
• Veenhoven R. Advances in understanding happiness. Rev Quebec Psychol. 1997;18:29–74.
   Google Scholar
• Hajiran H. Toward a quality of life theory: net domestic product of happiness. Soc Indic Res. 2006;75:31–43.
   Web of Science ®Google Scholar
• Veenhoven R. Sociological theories of subjective well-being. In: Eid M, Larsen R, editors. The science of subjective well-being. New York: Guilford Press; 2008. p. 44–61.
   Google Scholar
• Diener E, Emmons R, Larsen R, et al. The satisfaction with life scale. J Pers Assess. 1985;49:71–75.
   PubMed Web of Science ®Google Scholar
• Ryff C. Happiness is everything, or is it? Explorations on the meaning of psychological well-being. J Pers Socl Psychol. 1989;57:1069–1081.
   Web of Science ®Google Scholar
• Seligman M. Authentic happiness: using the new positive psychology to realize your potential for lasting fulfillment. New York: Atria Books; 2004.
   Google Scholar
• McDougall J, Wright V, Rosenbaum P. The ICF model of functioning and disability: incorporating quality of life and human development. Dev Neurorehabil. 2010;13:204–211.
   PubMed Web of Science ®Google Scholar
• Angner E, Ghandhi J, Williams Purvis K, et al. Daily functioning, health status, and happiness in older adults. J Happiness Stud. 2013;14:1563–1574.
   Web of Science ®Google Scholar
• Geerz C. Interpretation of cultures. New York (NY): Basic Books; 1973.
   Google Scholar
• D'Andrade R. The development of cognitive anthropology. Cambridge: Cambridge University Press; 1995.
   Google Scholar
• Weller S, Baer R. Intra- and intercultural variation in the definition of five illness: AIDS, diabetes, the common cold, empacho, and mal de ojo. Cross-Cultural Res. 2001;35:201–226.
   Web of Science ®Google Scholar
• Handwerker WP. Quick ethnography: a guide to rapid multi-method research. Walnut Creek (CA): Altamira Press; 2001.
   Google Scholar
• Weller S, Romney A. Systematic data collection. Newbury Park (CA): Sage Publications; 1988.
   Google Scholar
• Morse JM. Critical analysis of strategies for determining rigor in qualitative inquiry. Qual Health Res. 2015;25:1212–1222.
   PubMed Web of Science ®Google Scholar
• Handwerker W. How to collect data that warrant analysis. In: Kronenfeld D, DeMunk V, Fischer M, editors. Blackwell's companion for cognitve anthropology. Malden (MA): Blackwell, Inc.; 2010.
   Google Scholar
• Bernard HR. Research methods in anthropology. 4th ed. Guilford (CT): Altamira Press; 2004.
   Google Scholar
• Rosenbaum P, Palisano R, Bartlett DJ, et al. Development of the gross motor function classification system for cerebral palsy. Dev Med Child Neurol. 2008;50:249–253.
   PubMed Web of Science ®Google Scholar
• Hidecker MJ, Paneth N, Rosenbaum PL, et al. Developing and validating the Communication Function Classification System for individuals with cerebral palsy. Dev Med Child Neurol. 2011;53:704–710.
   PubMed Web of Science ®Google Scholar
• Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3:77–101.
   Google Scholar
• Beck A, Steer R, Brown G. Beck depression inventory^®–II (BDI^®–II) Austin (TX): Pearson Education, Inc.; 1996.
   Google Scholar
• Hills P, Argyle M. The Oxford Happiness Questionnaire: a compact scale for the measurement of psychological well-being. Pers Individ Diff. 2002;33:1073–1082.
   Web of Science ®Google Scholar
• Noreau L, Desrosiers J, Robichaud L, et al. Measuring social participation: reliability of the LIFE-H in older adults with disabilities. Disabil Rehabil. 2004;26:346–352.
   PubMed Web of Science ®Google Scholar
• Sherbourne C, Stewart A. The MOS social support survey. Soc Sci Med. 1991;32:705–714.
   PubMed Web of Science ®Google Scholar
• Shevlin M, Brunsden V, Miles J. Satisfaction with life scale: analysis of factorial invariance, mean structures and reliability. Pers Individ Dif. 1998;25:911–916.
   Web of Science ®Google Scholar
• Desrosiers J, Noreau L, Robichaud L, et al. Validity of the assessment of life habits in older adults. J Rehabil Med. 2004;36:177–182.
   PubMed Web of Science ®Google Scholar
• Amtmann D, Cook KF, Jensen MP, et al. Development of a PROMIS item bank to measure pain interference. Pain. 2010;150:173–182.
   PubMed Web of Science ®Google Scholar
• PROMIS. PROMIS pain interference scoring guide. Washington, DC: National Institutes of Health; 2010.
   Google Scholar
• Brülde B. Happiness theories of the good life. J Happiness Stud. 2007;8:15–49.
   Google Scholar
• Dodge R, Daly A, Huyton J, et al. The challenge of defining wellbeing. Int J Wellbeing. 2012;2:222–235.
   Google Scholar
• Fowler EG, Kolobe TH, Damiano DL, et al. Promotion of physical fitness and prevention of secondary conditions for children with cerebral palsy: section on pediatrics research summit proceedings. Phys Ther. 2007;87:1495–1510.
   PubMed Web of Science ®Google Scholar
• Rimmer JH. Exercise and physical activity in persons aging with a physical disability. Phys Med Rehabil Clin N Am. 2005;16:41–56.
   PubMedGoogle Scholar
• Bartlett RC, Collins SD. Aristotle’s Nicomachean ethics: a new translation. Chicago (IL): The University of Chicago Press; 2011.
   Google Scholar
• Seligman M, Csikszentmihaly M. Positive psychology. An introduction. Am Psychol. 2000;55:5–14.
   PubMed Web of Science ®Google Scholar
• Reid SM, Carlin JB, Reddihough DS. Using the gross motor function classification system to describe patterns of motor severity in cerebral palsy. Dev Med Child Neurol. 2011;53:1007–1012.
   PubMed Web of Science ®Google Scholar
• Creswell J, Plano Clark V. Designing and conducting mixed methods research. 2nd ed. Los Angeles: SAGE; 2011.
   Google Scholar