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‘I Think the Carer-Partner Dichotomy is Always Interesting’: Tensions in Health Professionals’ Engagement with Spousal Care givers of People with Parkinson's

Published online by Cambridge University Press:  11 March 2016

Meredith Bolland
Affiliation:
School of Psychology, University of Western Australia, Crawley, Australia
Andrew Guilfoyle
Affiliation:
Centre for Psychological Research, Edith Cowan University, Crawley, Australia
Romola S. Bucks*
Affiliation:
School of Psychology, University of Western Australia, Crawley, Australia
*
Address for correspondence: Associate Professor Romola Bucks, School of Psychology, The University of Western Australia (M304), 35 Stirling Highway, Crawley WA 6009, Australia. Phone: +61 8 6488 3232, Fax: +61 8 6488 1006. E-mail: [email protected]
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Abstract

Background: The spousal care givers of people with Parkinson's (PwP) have unique, first-hand information that is invaluable in the effective management of Parkinson's disease (PD). However, there is a dearth of research that specifically focuses on health professionals’ experiences of engagement with the spousal care givers of PwP.

Methods: Interpretative phenomenological analysis (IPA) was used to describe and identify the meaning that health professionals working with PD (HPPs) gave to their engagement experiences with spousal care givers of PwP. Semi-structured interviews with a purposive sample of 12 HPPs were digitally recorded, transcribed verbatim and analysed for emerging themes.

Results: Two major themes emerged from the interviews with HPPs: (i) the Philosophy of Care (PoC) is an Intrinsic Element in the Engagement Experience; and (ii) HPPs Expressed a Deep Appreciation of Partners’ Support of the PwP. HPPs experienced significant tensions and challenges in their engagements with the partners of PwP, as a result of the interaction between their lived reality and their PoC. They also appreciated greatly the caregiving provided by the partners. The insights gained have the potential to ease or resolve problematic tensions within the engagement process.

Type
Articles
Copyright
Copyright © Australasian Society for the Study of Brain Impairment 2016 

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References

Aoun, S. (2004). The social impact of caring for terminally ill people in Australia. Australia: Deakin West (ACT): Palliative Care.Google Scholar
Aragon, A., Ramaswamy, B., Ferguson, J.C., Jones, C.T., Taggart, C., Lindop, F., . . . Gay, S. (2007). The professional's guide to Parkinson's disease. London, UK: Parkinson's Disease Society.Google Scholar
Australian Psychological Society. (2007). Code of Ethics. Melbourne, Victoria: Author.Google Scholar
Birgersson, A., & Edberg, A. (2004). Being in the light or in the shade: Persons with Parkinson's disease and their partners' experience of support. International Journal of Nursing Studies, 41, 621630.Google Scholar
Bogart, C. (2010). The experience of care-giving for a person with Parkinson's disease (Doctoral dissertation, University of Minnesota). Retrieved from http://search.proquest.com/docview/580593863 Google Scholar
Bolland, M., Guilfoyle, A., & Bucks, R. (2015). I'm losing the ‘Me’: Partners’ experiences of engagement with Parkinson's health professionals. Brain Impairment, 16, 116130.Google Scholar
Carpentier, N., & Grenier, A. (2012). Successful linkage between formal and informal care systems: The mobilization of outside help by partners of persons with Alzheimer's disease. Qualitative Health Research, 22, 13301344.Google Scholar
Carter, J., Lyons, K., Stewart, B., Archbold, P., & Scobee, R. (2010). Does age make a difference in caregiver strain? Comparison of young versus older caregivers in early-stage Parkinson's disease. Movement Disorders, 25, 724730.Google Scholar
Colaizzi, P. (1978). Psychological research as the phenomenologist views it. In Valle, R. & King, M. (Eds.), Existential phenomenological alternatives for psychology (pp. 4871). New York, NY: Oxford University Press.Google Scholar
Creswell, J. (2007). Qualitative inquiry and research design: Choosing among five approaches. London, UK: Sage.Google Scholar
D'Amelio, M., Terruso, V., Palmeri, B., Di Benedetto, N., Famoso, G., Cottone, P., . . . Savettieri, G. (2009). Predictors of caregiver burden in partners of patients with Parkinson's disease. Neurological Sciences, 30, 171174.Google Scholar
Davidson, P., Halcomb, E., Hickman, E., Phillips, J., & Graham, B. (2006). Beyond the rhetoric: What do we mean by a ‘model of care’? Australian Journal of Advanced Nursing, 23, 4755.Google Scholar
Fossey, E., Harvey, C., McDermott, F., & Davidson, L. (2002). Understanding and evaluating qualitative research. Australian and New Zealand Journal of Psychiatry, 36, 717732.Google Scholar
Hudson, P., Toye, C., & Kristjanson, L. (2006). Would people with Parkinson's disease benefit from palliative care? Palliative Medicine, 20, 8794.Google Scholar
Human Research Ethics Committee of the University of Western Australia. (2013). Principal guidelines and resources. Retrieved from http://www.research.uwa.edu.au/staff/human-research/guidelines Google Scholar
Jenkinson, C., Dummett, S., Kelly, L., Peters, M., Dawson, J., Morley, D., & Fitzpatrick, R. (2012). The development and validation of a quality of life measure for the carers of people with Parkinson's disease (the PDQ-Carer). Parkinsonism & Related Disorders, 18, 483487.Google Scholar
Kitto, S., Chesters, J., & Grbich, C. (2008). Quality in qualitative research: Criteria for authors and assessors in the submission and assessment of qualitative research articles for the Medical Journal of Australia. Medical Journal of Australia, 188 (4), 243246.CrossRefGoogle Scholar
Liamputtong, P., & Ezzy, D. (2007). Qualitative research methods (2nd ed.). Melbourne, Victoria: Oxford University Press.Google Scholar
Lindahl, B., Liden, E., & Lindblad, B. (2011). A meta-synthesis describing the relationships between patients, informal caregivers and health professionals in home-care settings. Journal of Clinical Nursing, 20, 454463.Google Scholar
Martinez-Martin, P., Forjaz, M.J., Frades-Payo, B., Rusinol, A.B., Fernandez-Garcia, J.M., Benito-Leon, J., . . . Catalan, M.J. (2007). Caregiver burden in Parkinson's disease. Movement Disorders, 22, 924931.Google Scholar
McLaughlin, D., Hasson, F., Kernohan, W., Waldron, M., McLaughlin, M., Cochrane, B., & Chambers, H. (2011). Living and coping with Parkinson's disease: Perceptions of informal carers. Palliative Medicine, 25, 177182.Google Scholar
Moustakas, C. (1994). Phenomenological research methods. London, UK: Sage.Google Scholar
National Health and Medical Research Council, and Australian Research Council. (2015). National Statement on Ethical Conduct in Human Research (2007) - Updated May 2015. Retrieved from http://www.nhmrc.gov.au/guidelines-publications/e72 Google Scholar
O'Connor, E.J., McCabe, M.P., & Firth, L. (2008). The impact of neurological illness on marital relationships. Journal of Sex & Marital Therapy, 34, 115132 Google Scholar
Palmer, J. (2012). Caregivers' desired patterns of communication with nursing home staff. Journal of Gerontological Nursing, 38, 4754.CrossRefGoogle ScholarPubMed
Parkinson's Western Australia (PWA). (2014). Clinical services: Parkinson's nurse specialist service. Retrieved from http://parkinsonswa.org.au/nurse_specialists Google Scholar
Sanders, C. (2003). Application of Colaizzi's method: interpretation of an auditable decision trail by a novice researcher. Contemporary Nurse: A Journal for the Australian Nursing Profession, 14, 292302.Google Scholar
Smith, J. (1995). Semi-structured interviewing and qualitative analysis. In Smith, J., Harré, R, & Van Langenhove, L (Eds.), Rethinking methods in psychology (pp. 926). London, UK: Sage Publications Ltd.Google Scholar
Smith, J., & Osborn, M. (2007). Interpretative phenomenological analysis. In Smith, J. (Ed.), Qualitative psychology: A practical guide to research methods (pp. 5380). London, UK: Sage Publications Ltd.Google Scholar
Social Science & Medicine. Guidelines for qualitative papers. (2010). Retrieved March 2013, from http://www.elsevier.com/journals/social-science-medicine/0277-9536/guide-for-authors.Google Scholar
Tierney, A. (1998). Nursing models: extant or extinct? Journal of Advanced Nursing, 28, 7785.Google Scholar
WA Health Networks. (2007). Model of care overview and guidelines. Perth, WA: Department of Health, WA.Google Scholar
World Medical Association. (2008). World medical association declaration of Helsinki: ethical principles for medical research involving human subjects. Retrieved from www.wma.net/en/30publications/10policies/b3/17c.pdf.Google Scholar