Facilitators and barriers to supporting individuals with spinal cord injury in the community: experiences of family caregivers and care recipients

References

• Crewe NM, Krause JS. Spinal cord injury. In: Brodwin MG, Siu FW, Howard J, Brodwin ER, editors. Medical, psychosocial and vocational aspects of disability. Athens, USA: Elliott & Fitzpatrick, Inc.;2009. p. 289–303.
   Google Scholar
• Whiteneck G, Gassaway J, Dijkers M, et al. Inpatient treatment time across disciplines in spinal cord injury rehabilitation. J Spinal Cord Med. 2011;34:133–148.
   PubMed Web of Science ®Google Scholar
• McColl MA, Aiken A, McColl A, et al. Primary care of people with spinal cord injury: scoping review. Can Fam Physician. 2012;58:1207–1216.
   PubMed Web of Science ®Google Scholar
• Schulz R, Czaja SJ, Lustig A, et al. Improving the quality of life of caregivers of persons with spinal cord injury: a randomized controlled trial. Rehabil Psychol. 2009;54:1.
   PubMed Web of Science ®Google Scholar
• Archbold PG, Stewart BJ, Greenlick MR, et al. Mutuality and preparedness as predictors of caregiver role strain. Res Nurs Health. 1990;13:375–384.
   PubMed Web of Science ®Google Scholar
• Dickson A, O’Brien G, Ward R, et al. The impact of assuming the primary caregiver role following traumatic spinal cord injury: an interpretative phenomenological analysis of the spouse's experience. Psychol Health. 2010;25:1101–1120.
   PubMed Web of Science ®Google Scholar
• Charlifue SB, Botticello A, Kolakowsky-Hayner SA, et al. Family caregivers of individuals with spinal cord injury: exploring the stresses and benefits. Spinal Cord. 2016;54:732.
   PubMed Web of Science ®Google Scholar
• Gajraj-Singh P. Psychological impact and the burden of caregiving for persons with spinal cord injury (SCI) living in the community in Fiji. Spinal Cord. 2011;49:928.
   PubMed Web of Science ®Google Scholar
• Thoits PA. Stress, coping, and social support processes: where are we? What next? J Health Soc Behav. 1995;35:53–79.
   Web of Science ®Google Scholar
• Weitzenkamp DA, Gerhart KA, Charlifue SW, et al. Spouses of spinal cord injury survivors: the added impact of caregiving. Arch Phys Med Rehabil. 1997;78:822–827.
   PubMed Web of Science ®Google Scholar
• Robinson-Whelen S, Rintala DH. Informal care providers for veterans with SCI: who are they and how are they doing? J Rehab Res Develop. 2003;40:511–516.
   PubMed Web of Science ®Google Scholar
• Chan RC, Lee PW, Lieh-Mak F. Coping with spinal cord injury: personal and marital adjustment in the Hong Kong Chinese setting. Spinal Cord. 2000;38:687.
   PubMed Web of Science ®Google Scholar
• Nogueira PC, Rabeh SA, Caliri MH, et al. Burden of care and its impact on health-related quality of life of caregivers of individuals with spinal cord injury. Rev Latino-Am Enfermagem. 2012;20:1048–1056.
   PubMed Web of Science ®Google Scholar
• Post MW, Bloemen J, De Witte LP. Burden of support for partners of persons with spinal cord injuries. Spinal Cord. 2005;43:311.
   PubMed Web of Science ®Google Scholar
• LaVela SL, Landers K, Etingen B, et al. Factors related to caregiving for individuals with spinal cord injury compared to caregiving for individuals with other neurologic conditions. J Spinal Cord Med. 2015;38:505–514.
   PubMed Web of Science ®Google Scholar
• Baker A, Barker S, Sampson A, et al. Caregiver outcomes and interventions: a systematic scoping review of the traumatic brain injury and spinal cord injury literature. Clin Rehabil. 2017;31:45–60.
   PubMed Web of Science ®Google Scholar
• Sandelowski M, Barroso J. Classifying the findings in qualitative studies. Qual Health Res. 2003;13:905–923.
   PubMed Web of Science ®Google Scholar
• Sandelowski M. What's in a name? Qualitative description revisited. Res Nurs Health. 2010;33:77–84.
   PubMed Web of Science ®Google Scholar
• Conti A, Garrino L, Montanari P, et al. Informal caregivers' needs on discharge from the spinal cord unit: analysis of perceptions and lived experiences. Disabil Rehabil. 2016;38:159–167.
   PubMed Web of Science ®Google Scholar
• DeVivo MJ, Chen Y. Trends in new injuries, prevalent cases, and aging with spinal cord injury. Arch Phys Med Rehab. 2011;92:332–338.
   PubMed Web of Science ®Google Scholar
• Creswell JW, Plano Clark VL, Gutmann ML, et al. Advanced mixed methods research designs. Handbook Mixed Meth Soc Behav Res. 2003;209:240.
   Google Scholar
• Michie S, Johnston M, Abraham C, et al. Making psychological theory useful for implementing evidence based practice: a consensus approach. BMJ Qual Safe. 2005;14:26–33.
   Google Scholar
• Patton MQ. Qualitative evaluation and research methods. Beverly Hills (CA): SAGE Publications, inc; 1990.
   Google Scholar
• Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3:77–101.
   Google Scholar
• Castleberry A. NVivo 10 [software program]. Version 10. QSR International. 2012;2014:25.
   Google Scholar
• Ricciardi L, Pomponi M, Demartini B, et al. Emotional awareness, relationship quality, and satisfaction in patients with Parkinson's disease and their spousal caregivers. J Nerv Ment Dis. 2015;203:646–649.
   PubMed Web of Science ®Google Scholar
• Ehmann VE. Empathy: its origin, characteristics, and process. Perspect Psychiatr Care. 1971;9:72–80.
   PubMedGoogle Scholar
• Lee H, Brennan PF. Empathy in informal caregiving: extension of a concept from professional practice. J Korean Acad Nurs. 1999;29:1123–1133.
   Google Scholar
• Sheija A, Manigandan C. Efficacy of support groups for spouses of patients with spinal cord injury and its impact on their quality of life. Int J Rehab Res. 2005;28:379–383.
   PubMed Web of Science ®Google Scholar
• Chandler M, Kennedy P, Sandhu N. The association between threat appraisals and psychological adjustment in partners of people with spinal cord injuries. Rehab Psychol. 2007;52:470.
   Web of Science ®Google Scholar
• Boschen KA, Tonack M, Gargaro J. The impact of being a support provider to a person living in the community with a spinal cord injury. Rehab Psychol. 2005;50:397.
   Web of Science ®Google Scholar
• Ellenbogen PS, Meade MA, Jackson MN, et al. The impact of spinal cord injury on the employment of family caregivers. J Vocational Rehab. 2006;25:35–44.
   Google Scholar
• Bisogni e costi delle persone con lesione midollare e dei nuclei familiari di riferimento/Maria Giulia marini, Luigi Reale; Roma: Istituto per gli Affairi Sociali, 2010. 96p.;21 cm (Studi e Ricerche) Accesso alla versione elettronica: http://www.istituotoaffarisociale.ithttp://e-ms.cilea.it/
   Google Scholar
• Lucke KT, Coccia H, Goode JS, et al. Quality of life in spinal cord injured individuals and their caregivers during the initial 6 months following rehabilitation. Qual Life Res. 2004;13:97–110.
   PubMed Web of Science ®Google Scholar
• Elliott TR, Berry JW. Brief problem‐solving training for family caregivers of persons with recent‐onset spinal cord injuries: a randomized controlled trial. J Clin Psychol. 2009;65:406–422.
   PubMed Web of Science ®Google Scholar
• Guilcher SJ, Craven BC, Lemieux-Charles L, et al. Secondary health conditions and spinal cord injury: an uphill battle in the journey of care. Disabil Rehabil. 2013;35:894–906.
   PubMed Web of Science ®Google Scholar
• Cameron JI, Gignac MA. “Timing It Right”: a conceptual framework for addressing the support needs of family caregivers to stroke survivors from the hospital to the home. Patient Educ Couns. 2008;70:305–314.
   PubMed Web of Science ®Google Scholar
• Hammell KW. Dimensions of meaning in the occupations of daily life. Can J Occup Ther. 2004;71:296–305.
   PubMedGoogle Scholar
• Decima research. National profile of family caregivers in Canada – 2002 – Final Report p 3. 2002. Retrieved from http://www.hc-sc.gc.ca/hcs-sss/pubs/home-domicile/2002-caregiv-interven/index_e.html
   Google Scholar