Factors that influence the quality of paid support for adults with acquired neurological disability: scoping review and thematic synthesis

References

• Da Roit B, Le Bihan B. Similar and yet so different: cash-for-care in six European countries' long-term care policies. Milbank Q. 2010;88(3):286–309.
   PubMed Web of Science ®Google Scholar
• Green J, Mears J. The implementation of the NDIS: who wins, who loses? CCS J. 2014;6(2):25–39.
   Google Scholar
• Ungerson C, Yeandle S. Cash for care in developed welfare states. Hampshire and New York: Palgrave McMillan; 2007.
   Google Scholar
• Purcal C, Fisher KR, Jones A. Supported accommodation evaluation framework summary report. Sydney: Social Policy Research Centre, UNSW Australia; 2014.
   Google Scholar
• UN General Assembly. Convention on the Rights of Persons with Disabilities: resolution adopted by the General Assembly, A/RES/61/106; 2007 [cited Apr 2020]. Available from: http://www.unhcr.org/refworld/docid/45f973632.htm
   Google Scholar
• UN General Assembly. Report of the Special Rapporteur on the Rights of Persons with Disabilities (Theme: Access to Rights-Based Support for Persons with Disabilities), A/HRC/34/58; 2016 [cited Apr 2020]. Available from: https://www.ohchr.org/EN/Issues/Disability/SRDisabilities/Pages/Reports.aspx
   Google Scholar
• Lord J, Hutchison P. Individualised support and funding: building blocks for capacity building and inclusion. Disabil Soc. 2003;18(1):71–86.
   Web of Science ®Google Scholar
• Fisher KR, Gendera S, Graham A, et al. Disability and support relationships: what role does policy play? Aust J Publ Admin. 2019;78(1):37–55.
   Web of Science ®Google Scholar
• Slasberg C, Beresford P, Schofield P. Further lessons from the continuing failure of the national strategy to deliver personal budgets and personalization. Res Policy Planning. 2014;31(1):43–53.
   Google Scholar
• Cukalevski E. Supporting choice and control – an analysis of the approach taken to legal capacity in Australia’s National Disability Insurance Scheme. Laws. 2019;8(2):8–19.
   Google Scholar
• National Disability Insurance Scheme Act. Canberra: Parliament of Australian; 2013.
   Google Scholar
• Productivity Commission. Disability care and support, productivity commission inquiry: report overview and recommendations. Canberra: Australian Government; 2011.
   Google Scholar
• National Disability Insurance Agency. COAG Disability Report Council Quarterly Report. Canberra: National Disability Insurance Agency; 2019.
   Google Scholar
• Bigby C, Douglas J, Bould E. Developing and maintaining person centred active support: a demonstration project in supported accommodation for people with neurotrauma. Melbourne: La Trobe University; 2018.
   Google Scholar
• Bogart KR. The role of disability self-concept in adaptation to congenital or acquired disability. Rehabil Psychol. 2014;59(1):107–115.
   PubMed Web of Science ®Google Scholar
• Scheffelaar A, Hendriks M, Bos N, et al. Determinants of the quality of care relationships in long-term care – a participatory study. BMC Health Serv Res. 2019;19(1):1–14.
   PubMedGoogle Scholar
• Bigby C, Beadle-Brown J. Improving quality of life outcomes in supported accommodation for people with intellectual disability: what makes a difference? J Appl Res Intellect Disabil. 2018;31(2):e182–e200.
   PubMed Web of Science ®Google Scholar
• World Health Organization. World Report on Disability. 2011 [cited Aug 2020]. Available from: https://www.who.int/publications/i/item/world-report-on-disability
   Google Scholar
• Australian Institute of Health and Welfare. Australia’s welfare 2017 – full report. Canberra: AIHW; 2017. (13, AUS 214).
   Google Scholar
• Iacono T. Addressing increasing demands on Australian disability support workers. J Intellect Dev Disabil. 2010;35(4):290–295.
   PubMed Web of Science ®Google Scholar
• Hewitt A, Larson S. The direct support workforce in community supports to individuals with developmental disabilities: issues, implications, and promising practices. Ment Retard Dev Disabil Res Rev. 2007;13(2):178–187.
   PubMedGoogle Scholar
• Australian Government Department of Social Services. NDIS quality and safeguarding framework. Canberra: Australian Government; 2016.
   Google Scholar
• Brook RH, McGlynn EA, Shekelle PG. Defining and measuring quality of care: a perspective from US researchers. Int J Qual Health Care. 2000;12(4):281–295.
   PubMed Web of Science ®Google Scholar
• Campbell SM, Braspenning J, Hutchinson A, et al. Research methods used in developing and applying quality indicators in primary care. BMJ. 2003;326(7393):816–819. e1
   PubMed Web of Science ®Google Scholar
• Lawthers AG, Pransky GS, Peterson LE, et al. Rethinking quality in the context of persons with disability. Int J Qual Health Care. 2003;15(4):287–299.
   PubMed Web of Science ®Google Scholar
• Laragy C. Snapshot of flexible funding outcomes in four countries. Health Soc Care Community. 2010;18(2):129–138.
   PubMed Web of Science ®Google Scholar
• Australian Government Productivity Commission. National Disability Insurance Scheme (NDIS) Costs: Productivity Commission Study Report. Canberra: Australian Government; 2017.
   Google Scholar
• Mavromaras K, Moskos M, Mahuteau S, et al. Evaluation of the NDIS. Final report. Adelaide: National Institute of Labour Studies, Flinders University; 2018.
   Google Scholar
• Cortis N, Meagher G, Chan S, et al. Building an industry of choice: service quality, workforce capacity and consumer-centred funding in disability care. Final Report for United Voice, Australian Services Union, and Health and Community Services Union. Sydney: University of New South Wales; 2013.
   Google Scholar
• Alcorso C. Australian disability workforce report. 3rd edition July. Sydney: National Disability Services; 2018.
   Google Scholar
• Martin B, Healy J. Who works in community services? Adelaide: National Institute of Labour Studies, Flinders University; 2010.
   Google Scholar
• Jorgensen D, Parsons M, Reid MG, et al. The providers' profile of the disability support workforce in New Zealand. Health Soc Care Community. 2009;17(4):396–405.
   PubMed Web of Science ®Google Scholar
• Lawn S, Westwood T, Jordans S, et al. Support workers can develop the skills to work with complexity in community aged care: an Australian study of training provided across aged care community services. Gerontol Geriatr Educ. 2017;38(4):453–470.
   PubMed Web of Science ®Google Scholar
• Macdonald F, Charlesworth S. Cash for care under the NDIS: shaping care workers’ working conditions? J Ind Relat. 2016;58(5):627–646.
   Web of Science ®Google Scholar
• Nilsson C, Lindberg B, Skär L, et al. Meanings of balance for people with long-term illnesses. Br J Community Nurs. 2016;21(11):563–567.
   PubMedGoogle Scholar
• Fisher K, Edwards R, Gleeson R, et al. Effectiveness of individual funding approaches for disability support, report to the Australian Government Department of Families, Housing, Community Services and Indigenous Affairs; 2011.
   Google Scholar
• Cortis N, Macdonald F, Davidson B, et al. Reasonable, necessary and valued: pricing disability services for quality support and decent jobs (SPRC Report 10/17). Sydney: University of New South Wales; 2017.
   Google Scholar
• Moskos M, Isherwood L. Individualised funding and its implications for the skills and competencies required by DSWs in Australia. Labour Industry. 2019;29(1):34–51.
   Web of Science ®Google Scholar
• Ryan R, Stanford J. A portable training entitlement system for the disability support services sector. Canberra: Centre for Future Work at the Australia Institute; 2018.
   Google Scholar
• Fattore T, Evesson J, Moensted M, et al. An examination of workforce capacity issues in the disability services workforce: increasing workforce capacity. Sydney: Community Services and Health Industry Skills; 2010.
   Google Scholar
• Netten A, Jones K, Ma SS. Provider and care workforce influences on quality of home-care services in England. J Aging Soc Policy. 2007;19(3):81–97.
   PubMedGoogle Scholar
• Miller EL, Opie ND. Severely disabled adults and personal care attendants: a pilot study. Rehabil Nurs. 1987;12(4):185–187.
   PubMedGoogle Scholar
• McCluskey A. Paid attendant carers hold important and unexpected roles which contribute to the lives of people with brain injury. Brain Inj. 2000;14(11):943–957.
   PubMed Web of Science ®Google Scholar
• Meyer M, Donelly M, Weerakoon P. They’re taking the place of my hands”: perspectives of people using personal care. Disabil Soc. 2007;22(6):595–608.
   Web of Science ®Google Scholar
• Matsuda SJ, Clark MJ, Schopp LH, et al. Barriers and satisfaction associated with personal assistance services: results of consumer and personal assistant focus groups. OTJR (Thorofare N J). 2005;25(2):66–75.
   Web of Science ®Google Scholar
• Redhead R. Supporting adults with an acquired brain injury in the community – a case for specialist training for support workers. Social Care Neurodisabil. 2010;1(3):13–20.
   Google Scholar
• Opie ND, Miller ET. Attribution for successful relationships between severely disabled adults and personal care attendants. Rehabil Nurs. 1989;14(4):196–199.
   PubMedGoogle Scholar
• Yamaki CK, Yamazaki Y. Instruments’, “employees”, “companions”, “social assets”: understanding relationships between persons with disabilities and their assistants in Japan. Disabil Soc. 2004;19(1):31–46.
   Web of Science ®Google Scholar
• Leece J, Peace S. Developing new understandings of independence and autonomy in the personalised relationship. Br J Soc Work. 2010;40(6):1847–1865.
   Web of Science ®Google Scholar
• Adams L, Godwin L. Employment aspects and workforce implications of direct payments. London: IFF Research Limited; 2008.
   Google Scholar
• Glendinning C, Halliwell S, Jacobs S, et al. New kinds of care, new kinds of relationships: how purchasing services affects relationships in giving and receiving personal assistance. Health Soc Care Commun. 2000;8(3):201–211.
   PubMed Web of Science ®Google Scholar
• Harry L, MacDonald L, McLuckie A, et al. Long-term experiences in cash and counseling for young adults with intellectual disabilities: familial programme representative descriptions. J Appl Res Intellect Disabil. 2017;30(4):573–583.
   PubMed Web of Science ®Google Scholar
• Bondi L. On the relational dynamics of caring: a psychotherapeutic approach to emotional and power dimensions of women’s care work. Gend Place Cult. 2008;15(3):249–265.
   Web of Science ®Google Scholar
• Matthias RE, Benjamin AE. Paying friends, family members, or strangers to be home-based personal assistants: how satisfied are consumers? J Disabil Policy Stud. 2008;18(4):205–218.
   Google Scholar
• Allen SM, Ciambrone D. Community care for people with disability: blurring boundaries between formal and informal caregivers. Qual Health Res. 2003;13(2):207–226.
   PubMed Web of Science ®Google Scholar
• Browne J, Russell S. My home, your workplace: people with physical disability negotiate their sexual health without crossing professional boundaries. Disabil Soc. 2005;20(4):375–388.
   Web of Science ®Google Scholar
• Topping M, Douglas J, Winkler D. Understanding the factors that influence the quality of paid disability support for adults with acquired neurological disability and complex needs: a scoping review protocol. BMJ Open. 2019;9(12):e034654.
   PubMed Web of Science ®Google Scholar
• Arksey H, O'Malley L. Scoping studies: towards a methodological framework. Int J Soc Res Method. 2005;8(1):19–32.
   Google Scholar
• Levac D, Colquhoun H, O'Brien KK. Scoping studies: advancing the methodology. Implement Sci. 2010;5:69.
   PubMed Web of Science ®Google Scholar
• Tricco AC, Lillie E, Zarin W, et al. PRISMA extension for scoping reviews (PRISMA-ScR): checklist and explanation. Ann Intern Med. 2018;169(7):467–473.
   PubMed Web of Science ®Google Scholar
• Ahlström G, Wadensten B. Encounters in close care relations from the perspective of personal assistants working with persons with severe disability. Health Soc Care Community. 2010;18(2):180–188.
   PubMed Web of Science ®Google Scholar
• Ahlström G, Wadensten B. Family members' experiences of personal assistance given to a relative with disabilities. Health Soc Care Community. 2011;19(6):645–652.
   PubMed Web of Science ®Google Scholar
• Ahlström G, Wadensten B. Enjoying Work or Burdened by it? How Personal Assistants Experience and Handle Stress at Work. J Soc Work Disabil Rehabil. 2012;11(2):112–127.
   PubMedGoogle Scholar
• Bourke JA, Nunnerley JL, Sullivan M, et al. Relationships and the transition from spinal units to community for people with a first spinal cord injury: a New Zealand qualitative study. Disabil Health J. 2019;12(2):257–262.
   PubMed Web of Science ®Google Scholar
• Braaf SC, Lennox A, Nunn A, et al. Experiences of hospital readmission and receiving formal carer services following spinal cord injury: a qualitative study to identify needs. Disabil Rehabil. 2018;40(16):1893–1899.
   PubMed Web of Science ®Google Scholar
• Cornwell P, Fleming J, Fisher A, et al. Supporting the needs of young adults with acquired brain injury during transition from hospital to home: the Queensland service provider perspective. Brain Impair. 2009;10(3):325–340.
   Web of Science ®Google Scholar
• Fadyl JK, McPherson KM, Kayes NM. Perspectives on quality of care for people who experience disability. BMJ Qual Saf. 2011;20(1):87–95.
   PubMed Web of Science ®Google Scholar
• Gridley K, Brook J, Glendinning C. Good practice in social care: the views of people with severe and complex needs and those who support them. Health Soc Care Community. 2014;22(6):588–597.
   PubMed Web of Science ®Google Scholar
• Martinsen B, Dreyer P. Dependence on care experienced by people living with duchenne muscular dystrophy and spinal cord injury. J Neurosci Nurs. 2012;44(2):82–90.
   PubMed Web of Science ®Google Scholar
• McPherson KM, Kayes NK, Moloczij N, et al. Improving the interface between informal carers and formal health and social services: a qualitative study. Int J Nurs Stud. 2014;51(3):418–429.
   PubMed Web of Science ®Google Scholar
• Mitsch V, Curtin M, Badge H. The provision of brain injury rehabilitation services for people living in rural and remote New South Wales, Australia. Brain Inj. 2014;28(12):1504–1513.
   PubMed Web of Science ®Google Scholar
• Pettersson I, Fahlström G. Roles of assistive devices for home care staff in Sweden: a qualitative study. Disabil Rehabil Assist Technol. 2010;5(5):295–304.
   PubMedGoogle Scholar
• Wadensten B, Ahlström G. Ethical values in personal assistance: narratives of people with disabilities. Nurs Ethics. 2009;16(6):759–774.
   PubMed Web of Science ®Google Scholar
• Wadensten B, Ahlström G. The struggle for dignity by people with severe functional disabilities. Nurs Ethics. 2009;16(4):453–465.
   PubMed Web of Science ®Google Scholar
• Yeung EYW, Partridge M, Irvine F. Satisfaction with social care: the experiences of people from Chinese backgrounds with physical disabilities. Health Soc Care Community. 2016;24(6):e144–e154.
   PubMed Web of Science ®Google Scholar
• Ahlström G. Personal assistance for patients living with a severe neurological disorder. J Neurosci Nurs. 2006;38(3):183–193.
   PubMedGoogle Scholar
• Martinsen B, Harder I, Biering-Sorensen F. The meaning of assisted feeding for people living with spinal cord injury: a phenomenological study. J Adv Nurs. 2008;62(5):533–540.
   PubMed Web of Science ®Google Scholar
• Thomas J, Harden A. Methods for the thematic synthesis of qualitative research in systematic reviews. BMC Med Res Methodol. 2008;8:45.
   PubMed Web of Science ®Google Scholar
• Carr S. Personalisation: a rough guide. London, UK: Social Care Institute for Excellence; 2008.
   Google Scholar
• Committee on the Rights of Persons with Disabilities. General Comment No. 1 Article 12: Equal Recognition before the Law; CRPD/C/GC/1. New York: United Nations; 2014.
   Google Scholar
• Stevens M, Glendinning C, Jacobs S, et al. Assessing the role of increasing choice in English social care services. J Soc Pol. 2011;40(2):257–274.
   Web of Science ®Google Scholar
• Glendinning C, Challis D, Fernandez J, et al. The national evaluation of the Individual Budgets pilot programme: experiences and implications for care coordinators and managers. York: Social Policy Research Unit, University of York; 2008.
   Google Scholar
• Cunningham I, Nickson D. Personalisation and its implications for work and employment in the voluntary sector. Workforce Unit Report. Scotland: University of Strathclyde; 2010.
   Google Scholar
• Wilberforce Mc, Glendinning D, Challis JL, Fernandez S, et al. Implementing consumer choice in long-term care: the impact of individual budgets on social care providers in England. Soc Policy Admin. 2011;45(5):593–612.
   Web of Science ®Google Scholar
• Glendinning C. Home care in England: markets in the context of under-funding. Health Soc Care Community. 2012;20(3):292–299.
   PubMed Web of Science ®Google Scholar
• Hatton C, Wigham S, Craig J. Developing measures of job performance for support staff in housing services for people with intellectual disabilities. J Appl Res Intellect. 2009;22(1):54–64.
   Web of Science ®Google Scholar
• David C, West R. NDIS self-management approaches: opportunities for choice and control or an Uber-style wild west? Aust J Soc Issues. 2017;52(4):331–346.
   Web of Science ®Google Scholar
• Dodevska GA, Vassos MV. What qualities are valued in residential direct care workers from the perspective of people with an intellectual disability and managers of accommodation services? J Intellect Disabil Res. 2013;57(7):601–615.
   PubMed Web of Science ®Google Scholar
• Manthorpe J, Moriarty J, Cornes M, et al. Keeping it in the family? People with learning disabilities and families employing their own care and support workers: findings from a scoping review of the literature. J Intellect Disabil. 2011;15(3):195–207.
   PubMedGoogle Scholar
• Skills, IQ. Direct Client Care and Support: Industry Reference Committee Industry Skills Forecast. Sydney: Skills IQ Limited; 2017
   Google Scholar
  .
   Google Scholar
• Stringer K, Ryan BL, Terry AL, et al. Primary care of adults with severe and profound intellectual and developmental disabilities. Can Fam Physician. 2019;65(Suppl 1):66–72.
   Google Scholar
• Reeder J, Morris J. The importance of the therapeutic relationship when providing information to parents of children with long-term disabilities: the views and experiences of UK paediatric therapists. J Child Health Care. 2018;22(3):371–381.
   PubMed Web of Science ®Google Scholar
• Strandås M, Bondas T. The nurse-patient relationship as a story of health enhancement in community care: a meta-ethnography. J Adv Nurs. 2018;74(1):11–22.
   PubMed Web of Science ®Google Scholar
• Roberts T, Bowers B. How nursing home residents develop relationships with peers and staff: a grounded theory study. Int J Nurs Stud. 2015;52(1):57–67.
   PubMed Web of Science ®Google Scholar
• Rugkåsa J, Canvin K, Sinclair J, et al. Trust, deals and authority: community mental health Professionals' experiences of influencing reluctant patients. Community Ment Health J. 2014;50(8):886–895.
   PubMed Web of Science ®Google Scholar
• Arksey H, Baxter K. Exploring the temporal aspects of direct payments. Br J Soc Work. 2012;42(1):147–164.
   Web of Science ®Google Scholar
• Woodward CA, Abelson J, Tedford S, et al. What is important to continuity in home care? Perspectives of key stakeholders. Soc Sci Med. 2004;58(1):177–192.
   PubMed Web of Science ®Google Scholar
• Maart S, Jelsma J. Disability and access to health care – a community based descriptive study. Disabil Rehabil. 2014;36(18):1489–1493.
   PubMed Web of Science ®Google Scholar
• Sakellariou D, Rotarou ES. Access to healthcare for men and women with disabilities in the UK: Secondary analysis of cross-sectional data. BMJ Open. 2017;7(8):e016614.
   PubMed Web of Science ®Google Scholar
• Carey G, Malbon E, Reeders D, et al. Redressing or entrenching social and health inequities through policy implementation? Examining personalised budgets through the Australian National Disability Insurance Scheme. Int J Equity Health. 2017;16(1):1–12.
   PubMedGoogle Scholar
• Malbon E, Carey G, Meltzer A. Personalisation schemes in social care: are they growing social and health inequalities?. BMC Public Health. 2019;19(1):1–12.
   PubMedGoogle Scholar
• Veitch C, Dew A, Bulkeley K, et al. Issues affecting therapist workforce and service delivery in the disability sector in rural and remote New South Wales, Australia: Perspectives of policymakers, managers and senior therapists. Rural Remote Health. 2012;12(2):1–12.
   PubMed Web of Science ®Google Scholar