Hostname: page-component-8448b6f56d-42gr6 Total loading time: 0 Render date: 2024-04-24T11:13:50.228Z Has data issue: false hasContentIssue false

Continuity of care for children in the ‘too hard’ basket: a literature review of care needs in the health system

Published online by Cambridge University Press:  29 February 2016

Cas O'Neill
Affiliation:
Royal Children's Hospital
Julie Contole
Affiliation:
Royal Children's Hospital
Robyne Schwarz
Affiliation:
Royal Children's Hospital
Doug Bryan
Affiliation:
Royal Children's Hospital
Christine Minogue
Affiliation:
Royal Children's Hospital

Abstract

The following review of literature arose from Project Partnership, an initiative of the Royal Children's Hospital, Melbourne, which was set up to identify systemic and organisational changes which could improve continuity and quality of care for children with long-term and complex health care needs. This article examines research findings and other literature relevant to the experience of families whose children have complex health care needs; the experience of hospital based, health care professionals who care for this group of children; and the complexities of undertaking collaborative research in a large health bureaucracy.

Type
Research Article
Copyright
Copyright © Cambridge University Press 1996

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Atkins, S. 1989, ‘Siblings of Handicapped Children’, Child and Adolescent Social Work, 6(4), pp. 271282.Google Scholar
Austin, C. 1993, ‘Case Management: A Systems Perspective’, Families in Society, 74(10), pp. 451459.Google Scholar
Baine, S., Rosenbaum, P. and King, S. 1995, ‘Chronic Childhood Illnesses: What Aspects of Caregiving do Parente Value?’, Child: Care, Health and Development, 21(5), pp. 291304.Google Scholar
Berwick, D. 1994, ‘Eleven Worthy Aims for Clinical Leadership of Health Service Reform’, Journal of the American Medical Association, 272(10), pp. 797802.Google Scholar
Botuck, S. and Winsberg, B. 1991, ‘Effects of Respite on Mothers of School-Age and Adult Children With Severe Disabilities’, Mental Retardation, 29(1), pp. 4347.Google Scholar
Braithwaite, J., Vining, R. and Lazarus, L. 1994, ‘The Boundaryless Hospital’, Australian and New Zealand Journal of Medicine, 24(5), pp. 565–71.Google Scholar
Brown, K., Sheehan, E., Sawyer, M., Raftos, J. and Smyth, V. 1995, ‘Parent Satisfaction with Services in an Emergency Department Located at a Paediatric Teaching Hospital’, Journal of Paediatrics and Child Health, 31, pp. 4359.Google Scholar
Calabretto, H. and Johnson, A. 1994, ‘Partnership-In-Care’, Children in Hospital, 20(1), pp. 68.Google Scholar
Cant, R. and Hand, M. 1994, ‘Who Cares for These Children? An Historical Analysis of Recent Documents on Provision for Those with Developmental Disabilities’, Children Australia, 19(3), 1994.Google Scholar
Cleak, H. 1995, ‘Health Care in the 1990s: Practice Implications for Social Work’, Australian Social Work, 48(1), 1320.Google Scholar
Cornelius, D. 1994, ‘Managed Care and Social Work: Constructing a Context and a Response’, Social Work in Health Care, 20(1), pp. 4763.Google Scholar
Darbyshire, P. 1994, Living with a Sick Child in Hospital, Chapman and Hall, London.Google Scholar
Davis, H. and Rushton, R. 1991, ‘Counselling and Supporting Parents of Children with Developmental Delay’, Journal of Mental Deficiency Research, 35, pp. 89112.Google Scholar
Desguin, B., Holt, I. and McCarthy, S. 1994a, ‘Comprehensive Care of the Child with a Chronic Condition. Part 1. Understanding Chronic Conditions in Childhood’, Current Problems in Paediatrics, 24(6), pp. 199218.Google Scholar
Desguin, B., Holt, I. and McCarthy, S. 1994b, ‘Comprehensive Care of the Child with a Chronic Condition. Part 2. Primary Care Management’, Current Problems in Paediatrics, 24(7), pp. 230248.Google Scholar
Doyle, L. and Kitchen, W. 1993, ‘Determining the Accuracy and Relevance of Mortality Rates for Extremely Low Birthweight Infants’, Journal of Paediatrics and Child Health, 29, pp. 13.Google Scholar
Draper, M 1993, ‘Casemix and Competition – Will Consumers Benefit?’, Health Issues 37, December 1993.Google Scholar
Ellis, J. 1989, ‘Grieving for the Loss of the Perfect Child’, Child and Adolescent Social Work, 6(4), pp. 259270.Google Scholar
Gans, J. 1983, ‘Hate in the Rehabilitation Setting’, Archives of Physical Medicine and Rehabilitation, 64 (April), pp. 1769.Google Scholar
Gething, L. 1992, ‘Nurse Practitioners' and Students' Attitudes Towards People With Disabilities’, Australian Journal of Advanced Nursing, 9(3), pp. 2530.Google Scholar
Gutierrez, L., GlenMaye, L. and DeLois, K. 1995, ‘The Organizational Context of Empowerment Practice: Implications for Social Work Administration’, Social Work, 40(2), pp. 249258.Google Scholar
Hatfield, B. 1993, ‘Support Services for People with Disabilities: Some Lessons for Care Management’, Health and Social Care In the Community, 1(6), pp. 365–72.Google Scholar
Hatton, C. and Emerson, E. 1993, ‘Organizational Predictors of Staff Stress, Satisfaction, and Intended Turnover in a Service for People with Multiple Disabilities’, Mental Retardation, 31(6), pp. 388–95.Google Scholar
Horn, J., Feldman, H. and Ploof, D. 1995, ‘Parent and Professional Perceptions About Stress and Coping Strategies During a Child's Lengthy Hospitalization’, Social Work in Health Care, 21(1), pp. 107127.Google Scholar
James, C. 1987, ‘An Ecological Approach to Defining Discharge Planning in Social Work’, Social Work In Health Care, 12(4), pp. 4759.Google Scholar
Johnson, A. 1995, Report on the Evaluation of the Partnership-in-Care Project in Fielders and Susanne Wards, Women's and Children's Hospital Adelaide.Google Scholar
Kristjansdottir, G. 1991, ‘A Study of the Needs of Parents of Hospitalized 2 to 6-year-old Children’, Issues In Comprehensive Pediatric Nursing, 14, pp. 4964.Google Scholar
Lee, F. 1994, ‘Poles Apart’, Community Care, 28 July-3 August 1994, 1415.Google Scholar
Lieberman, F. 1989, ‘Clients or Patients: Families of Children with Developmental Disabilities’, Child and Adolescent Social Work, 6(4), pp. 2537.Google Scholar
Luntz, J. 1994, ‘Coordination of Services for Children with Emotional. Psychological, Behavioural and Social Disorders’ in Children Australia, 19(3), pp. 2632.Google Scholar
Mausner, S. 1995, ‘Families Helping Families: An Innovative Approach to the Provision of Respite Care for Families of Children with Complex Medical Needs’, Social Work in Health Care, 21(1), pp. 95106.Google Scholar
McKenzie, S. 1994, ‘Parents of Young Children with Disabilities: Their Perceptions of Generic Children's Services and Service Professionals’, Australian Journal of Early Childhood, 19(4), pp. 1217.Google Scholar
McLaughlin, A. and Carey, J. 1993, ‘The Adversarial Alliance: Developing Therapeutic Relationships Between Families and the Team in Brain Injury Rehabilitation’, Brain Injury, 7(1), pp. 4551.Google Scholar
Mailick, M., Holden, G. and Walther, V. 1994, ‘Coping with Childhood Asthma: Caretakers’ Views’, Health and Social Work, 19(2), pp. 103111.Google Scholar
Metropolitan Hospitals Planning Board 1995, Taking Melbourne's Health Care Networks into the 21st Century - Phase 2 Report, Melbourne.Google Scholar
Meyer, D. 1994, ‘Sibling Concerns’, Exceptional Parent, October, pp. 53–4.Google Scholar
Mitchell, J. 1992, Family Insight Project, unpublished Research Report, Royal Children's Hospital, Melbourne.Google Scholar
Moxley, D., Raider, M. and Cohen, S. 1989, ‘Specifying and Facilitating Family Involvement in Services to Persons with Developmental Disabilities’, Child and Adolescent Social Work, 6(4), pp. 301312.Google Scholar
Nagel, P. 1991, Continuity of Care between Dandenong Hospital and Community Agencies, Specialist Child and Family Services Conference Proceedings, September.Google Scholar
Nunn, K. 1994, ‘When Communications Go Wrong’, Journal of the Association for the Welfare of Child Health, 20(2), pp. 24.Google Scholar
Office of the Public Advocate 1992, Case Management, Melbourne.Google Scholar
Parsons, C., Blackford, J. and Street, A. 1994, Multicultural Australia: Nurses in Action, Centre for Research in Public Health and Nursing, La Trobe Uni., Melbourne.Google Scholar
Patterson, J. and Garwick, A. 1994, ‘Levels of Meaning in Family Stress Theory’, Family Process, 33(3), pp. 287304.Google Scholar
Petr, C. and Barney, D. 1993, ‘Reasonable Efforts for Children with Disabilities: The Parents' Perspective’, Social Work, 38(3), pp. 247254.Google Scholar
Pless, I., Satterwhite, B. and Van Vechten, D. 1978, ‘Division, Duplication and Neglect: Patterns of Care for Children with Chronic Disorders’, Child: Care, Health and Development, 4, pp. 919.Google Scholar
Robinson, A., Oxnam, C., Kelly, S., Broadbent, J. and Dillon, M. 1993, A Study Into Nursing Children With Disabilities In An Acute Care Context: The 3W Disability Awareness Group Research Report, Centre for Studies in Paediatric Nursing, Royal Children's Hospital, Melbourne.Google Scholar
Ryan, A. and Smith, M. 1989, ‘Parental Reactions to Developmental Disabilities in Chinese American Families’, Child and Adolescent Social Work, 6(4), 283299.Google Scholar
Schwarz, R. 1995, ‘Technological Success or Quality of Life: Attempting to Address Both for Children in Hospital’ in Issues Facing Australian Families, eds Weeks, W. and Wilson, J., Second Edition, Longman, Melbourne.Google Scholar
Shaw, L. and McMahon, B. 1990, ‘Family-Staff Conflict in the Rehabilitation Setting: Causes, Consequences, and Implications’, Brain Injury, 4(1), pp. 8793.Google Scholar
Simmons, J. 1994, ‘Community Based Care: The New Health Social Work Paradigm’, Social Work in Health Care, 20(1), pp. 3546.Google Scholar
Stalker, K. and Robinson, C. 1994, ‘Parents’ Views of Different Respite Care Services’, Mental Handicap Research, 7(2), pp. 97117.Google Scholar
Starkey, J. and Sarli, P. 1989, ‘Respite and Family Support Services: Responding to the Need’, Child and Adolescent Social Work, 6(4), pp. 313326.CrossRefGoogle Scholar
Street, A. 1992, Inside Nursing, State Uni. of New York Press, Albany.Google Scholar
Taylor, D. 1979, ‘The Components of Sickness: Diseases, Illnesses and Predicaments’, The Lancet, Nov. 10, 1979, pp. 10081010.Google Scholar
Tower, K. 1994, ‘Consumer-Centered Social Work Practice: Restoring Client Self-determination’, Social Work, 39(2), pp. 191196.Google Scholar
TQA Research 1994, Our Customers Speak' … Customer Satisfaction Qualitative Study, Royal Children's Hospital, Melbourne.Google Scholar
Tracy, J. 1993, ‘Two Hats Can Be Hard to Wear’, Australian Family Physician, 22(10), pp. 18321834.Google Scholar
Tracy, J. 1994, ‘What Do the Parents of Children with Disabilities Want From Their GP?Australian Family Physician, 23(3), pp. 431434.Google Scholar
Tudehope, D., Burns, Y., Gray, P., Mohay, H., O'Callaghan, M. and Rogers, Y. 1995, ‘Changing Patterns of Survival and Outcome at 4 Years of Children Who Weighed 500 -999g at Birth’, Journal of Paediatrics and Child Health, 31, pp. 4516.Google Scholar
Tunali, B. and Power, T. 1993, ‘Creating Satisfaction: A Psychological Perspective on Stress and Coping in Families of Handicapped Children’, Journal of Child Psychology and Psychiatry, 34(6), pp. 945–57.Google Scholar
Vaz, I. 1995, ‘Personal Health Record for School Children with Multiple Needs’, Child: Care, Health and Development, 21(3), pp. 191-8.Google Scholar
Webb, C. 1989, ‘Action Research: Philosophy, Methods and Personal Experiences’, Journal of Advanced Nursing, 14, pp. 403410.Google Scholar
Williams, E. 1993, ‘Positively Coping’, Search, 18 (Winter), pp. 2023.Google Scholar
Zander, K. 1991, ‘What's New in Managed Care and Case Management’, The New Definition, 6(2), pp. 23.Google Scholar
Zander, K. 1992, ‘Physicians, CareMaps and Collaboration’, The New Definition, 71, pp. 14.Google Scholar
Zander, K. 1993, ‘Toward a Fully Integrated CareMap and Case Management System’, The New Definition, 8(2), pp. 13.Google Scholar