Improving the interface between informal carers and formal health and social services: A qualitative study

International Journal of Nursing Studies

Volumn 51, Issue 3, 2014, Pages 418-429

  McPherson, K M ^a   Kayes, N K ^a   Moloczij, N ^a   Cummins, C ^a  

^a AUCKLAND UNIVERSITY OF TECHNOLOGY   (New Zealand)

Author keywords

Carers; Delivery of health care; Disability; Qualitative research; Quality of health care

Indexed keywords

ARTICLE; CAREGIVER; DISABILITY; HEALTH CARE DELIVERY; HEALTH CARE QUALITY; HEALTH SERVICE; NEW ZEALAND; QUALITATIVE RESEARCH; RURAL HEALTH CARE; SOCIAL WORK;

CARERS; DELIVERY OF HEALTH CARE; DISABILITY; QUALITATIVE RESEARCH; QUALITY OF HEALTH CARE;

CAREGIVERS; NEW ZEALAND; QUALITATIVE RESEARCH; RURAL HEALTH SERVICES; SOCIAL WORK; URBAN HEALTH SERVICES;

EID: 84894248509     PISSN: 00207489     EISSN: None     Source Type: Journal    
DOI: 10.1016/j.ijnurstu.2013.07.006     Document Type: Article

References (64)

1. Appleton P.L., Boll V., Everett J.M., Kelly A.M., Meredith K.H., Payne T.G. Beyond child development centres: care coordination for children with disabilities. Child: Care, Health & Development 1997, 23:29-40.
2. Bartnik E. Local Area Coordination in the Australian Capital Territory: External Evaluation Summary Report 2007, Tamar Consultancy Pty Ltd.
3. Boeije H. A purposeful approach to the constant comparative method in the analysis of qualitative interviews. Quality & Quantity 2002, 36:391-409.
4. Boivin A., Currie K., Fervers B., Gracia J., James M., Marshall C., Sakala C., Sanger S., Strid J., Thomas V., Van Der Weijden T., Grol R., Burgers J. Patient and public involvement in clinical guidelines: international experiences and future perspectives. Quality & Safety in Health Care 2010, 19:e22.
5. Bright F.A., Boland P., Rutherford S.J., Kayes N.M., McPherson K.M. Implementing a client-centred approach in rehabilitation: an autoethnography. Disability and Rehabilitation 2011.
6. Brown S.L., Smith D.M., Schulz R., Kabeto M.U., Ubel P.A., Poulin M., Yi J., Kim C., Langa K.M. Caregiving behavior is associated with decreased mortality risk. Psychological Science 2009, 20:488-494.
7. Carers UK Valuing Carers 2011. Calculating the Value of Carers' Support 2011, http://www.carersuk.org/professionals/resources/research-library/item/489 (accessed 10.12.12).
8. Carlsen B., Glenton C. What about N?. A methodological study of sample-size reporting in focus group studies. BMC Medical Research Methodology 2011, 11:26.
9. Crotty M. The Foundations of Social Research: Meaning and Perspective in the Research Process 1998, Allen & Unwin, Sydney.
10. Davidson P., Halcomb E., Hickman L., Phillips J., Graham B. Beyond the rhetoric: what do we mean by a 'model of care'?. Australian Journal of Advanced Nursing 2006, 23:47-55.
11. Donabedian A. The quality of care. How can it be assessed?. Journal of the American Medical Association 1988, 260:1743-1748.
12. Durston P. Partners in caring: a partnership for healing. Nursing Administration Quarterly 2006, 30:105-111.
13. Eurocarers: European Association for Working Carers Eurocarers factsheet 'Family Care in Europe: the contribution of carers to long term care, especially for older people' 2008, http://www.eurocarers.org (accessed 10.12.12).
14. Fadyl J.K., McPherson K.M., Kayes N.M. Perspectives on quality of care for people who experience disability. BMJ Quality and Safety 2011, 20:87-95.
15. Gilmer M.J. Pediatric palliative care: a family-centered model for critical care. Critical Care Nursing Clinics of North America 2002, 14:207-214.
16. Grimm P.M., Zawacki K.L., Mock V., Krumm S., Frink B.B. Caregiver responses and needs. An ambulatory bone marrow transplant model. Cancer Practice 2000, 8:120-128.
17. Hsieh H.F., Shannon S.E. Three approaches to qualitative content analysis. Qualitative Health Research 2005, 15:1277-1288.
18. Huang H.L., Shyu Y.I., Chang M.Y., Weng L.C., Lee I. Willingness to use respite care among family caregivers in Northern Taiwan. Journal of Clinical Nursing 2009, 18:191-198.
19. Hudson P.L., Remedios C., Thomas K. A systematic review of psychosocial interventions for family carers of palliative care patients. BMC Palliative Care 2010, 9:17.
20. Hunt C.K. Concepts in caregiver research. Journal of Nursing Scholarship 2003, 35:27-32.
21. Im K., Belle S.H., Schulz R., Mendelsohn A.B., Chelluri L. Prevalence and outcomes of caregiving after prolonged (> or =48 hours) mechanical ventilation in the ICU. Chest 2004, 125:597-606.
22. Kim Y., Schulz R. Family caregivers' strains: comparative analysis of cancer caregiving with dementia, diabetes, and frail elderly caregiving. Journal of Aging and Health 2008, 20:483-503.
23. Kovacs P.J., Bellin M.H., Fauri D.P., Kovacs P.J., Bellin M.H., Fauri D.P. Family-centered care: a resource for social work in end-of-life and palliative care. Journal of Social Work in End-of-Life & Palliative Care 2006, 2:13-27.
24. Low J.T.S., Payne S., Roderick P. The impact of stroke on informal carers: a literature review. Social Science & Medicine 1999, 49:711-725.
25. Macleod R., McPherson K.M. Care and compassion: part of person-centred rehabilitation, inappropriate response or a forgotten art?. Disability and Rehabilitation 2007, 29:1589-1595.
26. Mansell I., Wilson C. Current perceptions of respite care: experiences of family and informal carers of people with a learning disability. Journal of Intellectual Disability Research 2009, 13:255-267.
27. Mansell I., Wilson C. 'It terrifies me, the thought of the future': listening to the current concerns of informal carers of people with a learning disability. Journal of Intellectual Disability Research 2010, 14:21-31.
28. Mays N., Pope C. Rigour and qualitative research. British Medical Journal 1995, 311:109-112.
29. McCabe S. The problem with structure-process-outcome: challenging the donabedian notion of quality of care. Abstract for the Academy for Health Services Research and Health Policy Meeting 2000, 17.
30. Milligan C. Caring for older people in the 21st century: 'notes from a small island'. Health & Place 2006, 12:320-331.
31. Ministry of Social Development Caring for New Zealand Carers: Your Life, Your Work, Your Say 2007, Ministry of Social Development, Wellington, http://www.msd.govt.nz/work-areas/cross-sectoral-work/carers-strategy/%5D (accessed 30.06.11).
32. Ministry of Social Development Summary of the New Zealand carers' strategy - consultation findings. Wellington 2007.
33. Ministry of Social Development The New Zealand Carers' Strategy and Five-Year Action Plan 2008, Ministry of Social Development, Wellington.
34. Monin J.K., Schulz R. Interpersonal effects of suffering in older adult caregiving relationships. Psychology and Aging 2009, 24:681-695.
35. Morgan J., Lowe J., Lowe L., Rathod S. An international perspective on what carers want - the professional's dilemma. International Journal of Social Psychiatry 2010, 56:211-213.
36. Morse J.Q., Shaffer D.R., Williamson G.M., Dooley W.K., Schulz R. Models of self and others and their relation to positive and negative caregiving responses. Psychology and Aging 2012, 27(1):211-218.
37. Myers J.E. Coping with caregiving stress: a wellness-oriented, strengths-based approach for family counselors. Family Journal 2003, 11:153-161.
38. National Family Caregivers Association Caregiving Statistics 2011, National Family Caregivers Association, http://www.thefamilycaregiver.org/who_are_family_caregivers/care_giving_statstics.cfm (accessed 30.06.11).
39. Nicholas E. An outcomes focus in carer assessment and review: value and challenge. British Journal of Social Work 2003, 33:31-47.
40. Nikora L.W., Karapu R., Hickey H., Te Awekotuku N. Disabled Maori and Disability Support Options: A Report Prepared for the Ministry of Health 2004, Maori and Psychology Research Unit, University of Waikato, Hamilton.
41. Ory M.G., Hoffman R.R., Yee J.L., Tennstedt S., Schulz R. Prevalence and impact of caregiving: a detailed comparison between dementia and nondementia caregivers. Gerontologist 1999, 39:177-185.
42. Parker G., Arksey H., Harden M. Meta-review of international evidence on interventions to support carers 2010, Social Policy Research Unit, The University of York.
43. Paterson R. Regulating for compassion?. Journal of Law and Medicine 2010, 18:58-67.
44. Pickard L. The Effectiveness and Cost-Effectiveness of Support and Services to Informal Carers of Older People 2004, United Kingdom Audit Commission, London.
45. QSR International NVivo 8 2008.
46. Rosenbaum P., King S., Law M., King G., Evans J. Family-centered service: a conceptual framework and research review. Physical & Occupational Therapy in Pediatrics 1998, 18:1-20.
47. Sandelowski M. Whatever happened to qualitative description?. Research in Nursing & Health 2000, 23:334-340.
48. Schaaf R.C., Sherwen L.N., Youngblood N. An interdisciplinary, environmentally-based model of care for children with HIV infection and their caregivers. Physical & Occupational Therapy in Pediatrics 1997, 17:63-85.
49. Schulz R., Beach S.R. Caregiving as a risk factor for mortality: the Caregiver Health Effects Study. Journal of the American Medical Association 1999, 282:2215-2219.
50. Schulz R., Martire L.M. Family caregiving of persons with dementia: prevalence, health effects, and support strategies. The American Journal of Geriatric Psychiatry 2004, 12:240-249.
51. Schulz R., Newsom J., Mittelmark M., Burton L., Hirsch C., Jackson S. Health effects of caregiving: the caregiver health effects study: an ancillary study of the Cardiovascular Health Study. Annals of Behavioral Medicine 1997, 19:110-116.
52. Schulz R., O'brien A.T., Bookwala J., Fleissner K. Psychiatric and physical morbidity effects of dementia caregiving: prevalence, correlates, and causes. Gerontologist 1995, 35:771-791.
53. Schulz R., Quittner A.L. Caregiving for children and adults with chronic conditions: introduction to the special issue. Health Psychology 1998, 17:107-111.
54. Schulz R., Sherwood P.R. Physical and mental health effects of family caregiving. The American Journal of Nursing 2008, 108:23-27. (quiz 27).
55. Schulz R., Visintainer P., Williamson G.M. Psychiatric and physical morbidity effects of caregiving. The Journals of Gerontology 1990, 45:P181-P191.
56. Schumacher K.L., Beidler S.M., Beeber A.S., Gambino P. A transactional model of cancer family caregiving skill. Advances in Nursing Science 2006, 29:271-286.
57. Shaw C., Mcnamara R., Abrams K., Cannings-John R., Hood K., Longo M., Myles S., O'mahony S., Roe B., Williams K. Systematic review of respite care in the frail elderly. Health Technology Assessment Journal 2009, 13:1-224. iii.
58. Smith G.R., Williamson G.M., Miller L.S., Schulz R. Depression and quality of informal care: a longitudinal investigation of caregiving stressors. Psychology and Aging 2011, 26(3):584-591.
59. Stewart D.W., Shamdasani P.N., Rook D.W. Focus Groups. Theory and Practice 2007, Sage Publications.
60. Strauss A., Corbin J. Basics of Qualitative Research: Techniques and Procedures for Developing Grounded Theory 1998, Sage, Thousand Oaks. 2nd edition.
61. The British Psychological Society Good Practice Guidelines to Support the Involvement of Service Users and Carers in Clinical Psychology Services 2010, The British Psychological Society, Leicester.
62. The NHS Information Centre, S.C.T. Survey of Carers in Households - 2009/10 England 2010, The NHS Information Centre, London.
63. Vitaliano P.P., Schulz R., Kiecolt-Glaser J., Grant I. Research on physiological and physical concomitants of caregiving: where do we go from here?. Annals of Behavioral Medicine 1997, 19:117-123.
64. Wang K.Y., Hsieh K., Heller T., Davidson P.W., Janicki M.P. Carer reports of health status among adults with intellectual/developmental disabilities in Taiwan living at home and in institutions. Journal of Intellectual Disability Research 2007, 51:173-183.