Abstract
A partnership approach between patients, families and practitioners to care underpinned by a person centred philosophy is valued by families and forms the basis for this chapter which will explore the relevance and importance of communication between healthcare professional and patients, parents and carers as partners in care. This chapter is written by carers who support and care for their sons, daughters and siblings with severe and profound intellectual and multiple disabilities (PIMD). It is important to include parents, carers and families’ views in this book, for their voice and practical suggestions may contribute to an increased understanding of the personal and respectful caring mechanisms required to support an individual in receiving adequate healthcare.
This is a preview of subscription content, log in via an institution to check access.
Access this chapter
Tax calculation will be finalised at checkout
Purchases are for personal use only
Similar content being viewed by others
References
Rossiter C, Fowler C, Hopwood N, Lee A, Dunston R. Working in partnership with vulnerable families: the experience of child and family health practitioners. Aust J Prim Health. 2011;17(4):378–83.
Lévesque L, Ducharme F, Caron C, Hanson E, Magnusson L, Nolan J, Nolan M. A partnership approach to service needs assessment with family caregivers of an aging relative living at home: a qualitative analysis of the experiences of caregivers and practitioners. Int J Nurs Stud. 2010;47(7):876–87.
Department of Health. Six Lives: progress report on health care for people with learning disabilities. London: Stationery Office; 2010.
Department of Health. Six Lives: second progress report on health care for people with learning disabilities. London: Stationery Office; 2013.
Winterbourne View Review Concordat. Programme of action. London: Department Health; 2012.
Department of Health. Transforming care: a national response to Winterbourne view. London: Stationery Office; 2012.
Tronto J. Creating caring institutions: politics, plurality and purpose. Ethics Soc Welfare. 2010;4(2):158–71.
United Nations Convention on the rights of persons with disabilities. Optional protocol to the convention 2006. New York: United Nations General Assembly; 2006.
Walmsley J, Mannan H. Parents as co-researchers: a participatory action research initiative involving parents of people with intellectual disabilities in Ireland. Br J Learn Disabil. 2009;37:271–6.
Mansell J. Raising our sights: services for adults with profound intellectual and multiple disabilities. London: Stationery Office; 2010.
McConkey R. Fair shares? Supporting families caring for adult persons with intellectual disabilities. J Intellect Disabil Res. 2005;49(8):600–12.
National Joint Committee for the Communication Needs of Persons with Severe Disabilities. Guidelines for meeting the communication needs of persons with severe disabilities. www.asha.org/policy or www.asha.org/njc (1992).
Schalick WO, Westbrook C, Young B. Communication with individuals with intellectual disabilities and psychiatric disabilities: a summary of the literature. Michigan Retirement Research Centre research paper 2012–264. http://ssrn.com/abstract=2159227
Hurd A. Development of pre-symbolic and pre-linguistic skills. In: Abudarham S, Hurd A, editors. Management of communication needs in people with learning disability. London: Whurr; 2002. p. 147–8.
Grove N, Bunning K, Porter J, Morgan M. See what I mean: guidelines to aid understanding of communication by people with severe and profound learning disabilities. BILD: Kidderminster; 2000.
Forster S, Iacano T. Disability support workers’ experience of interaction with a person with profound intellectual disability. J Intellect Dev Disabil. 2008;33(2):137.
PMLD Network 2013 Oct 21. www.learningdisabilities.org.uk/help-information/forums
PMLD Network 2013 Oct 30. http://www.learningdisabilities.org.uk/help-information/forums
Goldbart J, Caton S. Communication and people with the most complex needs: what works and why this is essential. London: Mencap; 2010.
Kent A. Improving acute care of people with learning disabilities. Nurs Times. 2008;104(5):32–3.
Widgit health. Widgit symbols. www.widgit-health.com
Millar S, Caldwell M. Personal communication passports. Paper delivered at the SENSE conference, Westpark Centre, University of Dundee, 13 Sept 1997.
Buntinx WHE, Schalock RL. Models of disability, quality of life, and individualized supports: implications for professional practice in intellectual disability. J Policy Pract Intellect Disabil. 2010;7:283–94.
Martin AM, O’Connor-Fenelon M, Lyons R. Non-verbal communication between nurses and people with an intellectual disability: a review of the literature. J Intellect Disabil. 2010;14(4):303–14.
Department of Health. Valuing people. London: Stationery Office; 2001.
Changing places. What are changing places toilets? http://www.changing-places.org/the_campaign/what_are_changing_places_toilets_.aspx
Acknowledgements
It is important to acknowledge all who contributed so enthusiastically. To Rachel Frampton; for her listening ear and lovely illustrations. Health Visitor, BSc Nursing (Learning Disability) BA (Hons) Illustration for Children’s Publishing. To parents from ‘PMLD Network’ a British based computer forum for professionals and parents who are interested in issues concerning people with PIMD, in particular parent Anne Marie Harley Lechmere and parent D.
Author information
Authors and Affiliations
Corresponding author
Editor information
Editors and Affiliations
Rights and permissions
Copyright information
© 2016 Springer International Publishing Switzerland
About this chapter
Cite this chapter
de Haas, C., Ryan, R. (2016). Family Centered Care in a Health Care Setting. In: Rubin, I.L., Merrick, J., Greydanus, D.E., Patel, D.R. (eds) Health Care for People with Intellectual and Developmental Disabilities across the Lifespan. Springer, Cham. https://doi.org/10.1007/978-3-319-18096-0_4
Download citation
DOI: https://doi.org/10.1007/978-3-319-18096-0_4
Publisher Name: Springer, Cham
Print ISBN: 978-3-319-18095-3
Online ISBN: 978-3-319-18096-0
eBook Packages: MedicineMedicine (R0)