What Do Social Workers Think about the Palliative Care Needs of People with Parkinson's Disease?

Mary Waldron, W.George Kernohan, Felicity Hasson, Susan Foster, Barbara Cochrane

Research output: Contribution to journalArticle

5 Citations (Scopus)

Abstract

Social workers are key professionals in assessing social care need and providing support.However, needs in the palliative care stage of chronic illness are not always wellmanaged. In this study, we set out to examine the social worker’s role in the deliveryof palliative care to clients with Parkinson’s disease (PD). Two focus groups and one individualinterview were undertaken with thirteen social workers with experience ofworking with clients with PD in community and hospice settings. Differing perceptionsof palliative care emerged: from a holistic approach to specialist care near the end oflife. Negative associations of palliative care were identified. Other barriers also exist,such as lack of knowledge and experience of PD and resources that hinder the deliveryof palliative care to clients with chronic conditions. Different interpretations of palliativecare affect its delivery to clients with long-term chronic conditions. Very fewclients with PD are referred to specialist palliative care specifically for management oftheir symptoms, which must prevent holistic care. Social workers have an important,yet underdeveloped, role in identifying and addressing palliative care needs. Policiesand procedures should be clarified regarding prioritisation and access for clients withchronic long-term conditions to appropriate palliative care.
LanguageEnglish
Pages1-17
JournalBritish Journal of Social Work
Volumeearly
DOIs
Publication statusPublished - 23 Nov 2011

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Palliative Care
Parkinson Disease
Hospices
Social Workers
Focus Groups
Chronic Disease

Keywords

  • Social workers
  • Parkinson’s disease
  • palliative care
  • focus groups

Cite this

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title = "What Do Social Workers Think about the Palliative Care Needs of People with Parkinson's Disease?",
abstract = "Social workers are key professionals in assessing social care need and providing support.However, needs in the palliative care stage of chronic illness are not always wellmanaged. In this study, we set out to examine the social worker’s role in the deliveryof palliative care to clients with Parkinson’s disease (PD). Two focus groups and one individualinterview were undertaken with thirteen social workers with experience ofworking with clients with PD in community and hospice settings. Differing perceptionsof palliative care emerged: from a holistic approach to specialist care near the end oflife. Negative associations of palliative care were identified. Other barriers also exist,such as lack of knowledge and experience of PD and resources that hinder the deliveryof palliative care to clients with chronic conditions. Different interpretations of palliativecare affect its delivery to clients with long-term chronic conditions. Very fewclients with PD are referred to specialist palliative care specifically for management oftheir symptoms, which must prevent holistic care. Social workers have an important,yet underdeveloped, role in identifying and addressing palliative care needs. Policiesand procedures should be clarified regarding prioritisation and access for clients withchronic long-term conditions to appropriate palliative care.",
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author = "Mary Waldron and W.George Kernohan and Felicity Hasson and Susan Foster and Barbara Cochrane",
note = "Reference text: Auty, S. (2005) ‘Palliative care: Roles and perceptions’, International Journal of Palliative Nursing, 11(2), p. 61. Bliss, J. and While, A. (2007) ‘District nursing and social work: Palliative and continuing care delivery’, British Journal of Community Nursing, 12(6), pp. 268–72. Borasio, G. D. and Voltz, R. (2005) ‘Palliative care in neurology, commentary’, Journal of Palliative Care, 21(3), pp. 188–9. Chen, J. J., Trombetta, D. P. and Fernandez, H. H. (2008) ‘Palliative management of Parkinson disease: Focus on non motor, distressing symptoms’, Journal of Pharmacy Practice, 21(4), pp. 262–72. Christ, G. and Diwan, S. (2008) ‘Role of social work in managing chronic illness care’, in S. Diwan (ed.), Health Care and Older Adults Resource Review, CSWE Gero-Ed Center, Master’s Advanced Curriculum Project, available online at http://depts. washington.edu/geroctr/mac/1_6health.html. Q5 Christ, G. and Sormanti, M. (2000) ‘Advancing social work practice in end-of-life care’, Social Work in Health Care, 30(2), pp. 81–99. Coventry, P. A., Grande, G. E., Richards, D. A. and Todd, C. J. (2005) ‘Prediction of appropriate timing of palliative care for older adults with non malignant life threatening disease: A systematic review’, Age and Ageing, 34(3), pp. 218–27. Denscombe, M. (1998) The Good Research Guide for Small Scale Social Research Projects, Buckingham, Open University Press. Department of Health (2005) The National Service Framework for Long-Term Conditions, London, Department of Health. Department of Health, Social Services and Public Safety (DHSS&PS) (2009) Palliative Care and End of Life Care Strategy for Northern Ireland, Consultation Document, Belfast, DHSS&PS. Fitzsimons, D., Mullan, D., Wilson, J. S., Conway, B., Corcoran, B., Dempster, M., Gamble, J., Stewart, C., Rafferty, S., McMahon, M., MacMahon, J., Mulholland, P., Stockdale, P., Chew, E., Hanna, L., Brown, J., Ferguson, G. and Fogarty, D. (2007) ‘The challenge of patients’ unmet palliative care needs in the final stages of chronic illness’, Palliative Medicine, 21(4), pp. 313–22. Grande, G., Stajduhar, K., Aoun, S., Toye, C., Funk, L., Addington-Hall, J., Payne, S. and Todd, C. (2009) ‘Supporting lay carers in end of life care: Current gaps and future priorities’, Palliative Medicine, 23(4), pp. 339–44. Heyman, J. C. and Gutheil, I. A. (2003) ‘Attitudes of social work students towards end of life planning’, Educational Gerontology, 29(4), pp. 313–26. Heyman, J. C. and Gutheil, I. A. (2006) ‘Social work involvement in end of life planning’, Journal of Gerontological Social Work, 47(3), pp. 47–61. Holloway, M. (2006) ‘Traversing the network: A user-led care pathway approach to the management of Parkinson’s disease in the community’, Health and Social Care in the Community, 14(1), pp. 63–73. Hudson, P. L., Toye, C. and Kristjanson, L. J. (2006) ‘Would people with Parkinson’s disease benefit from palliative care?’, Palliative Medicine, 20(2), pp. 87–94. Page 16 of 17 Mary Waldron et al. 680 685 690 695 700 705 710 715 720 Huff, M. B., Weisenfluh, S., Murphy, M. and Black, P. J. (2006) ‘End of life care and social work education’, Journal of Gerontological Social Work, 48(1), pp. 219–31. Kernohan, W. G., Hasson, F. H. and Hardyway, D. (2009) ‘Palliative nursing care in other neurological conditions: Parkinson’s disease’, in E. Stevens, S. Jackson and S. Milligan (eds), Palliative Nursing, across the Spectrum of Care, Oxford, Wiley-Blackwell. Kristjanson, L. J., Aoun, S. M. and Oldham, L. (2006) ‘Palliative care and support for people with neurodegenerative conditions and their carers’, International Journal of Palliative Nursing, 12(8), pp. 368–77. Lloyd, M. (2000) ‘Where has all the care management gone? The challenges of Parkinson’s disease to the health and social care interface’, British Journal of Social Work, 30(6), pp. 737–54. Miles, M. B. and Huberman, A. M. (1994) Analysis: An Expanded Sourcebook, Thousand Oaks, CA, Sage. National Collaborating Centre for Chronic Conditions (2006) Parkinson’s Disease: National Clinical Guideline for Diagnosis and Management in Primary and Secondary Care, London, Royal College of Physicians. National Council for Palliative Care (2009) End of Life Care Manifesto 2010, London. Q6 National End of Life Care Programme (NEOLCP) (2010) Supporting People to Live and Die Well: A Framework for Social Care at the End of Life, available online at www. endoflifecareforadults.nhs.uk. Porter, B., Henry, S. R., Gray, W. K. and Walker, R. W. (2010) ‘Care requirements of a prevalent population of people with idiopathic Parkinson’s disease’, Age and Ageing, 39(2), pp. 57–61. Reith, M. and Payne, M. (2009) Social Work in End of Life and Palliative Care, Bristol, The Policy Press. Rudkins, H. and Aird, T. (2006) ‘The importance of early consideration of palliative care in Parkinson’s disease’, British Journal of Neuroscience Nursing, 2(1), pp. 10–16. Sheldon, F. M. (2000) ‘Dimensions of the role of the social worker in palliative care’, Palliative Medicine, 14(6), pp. 491–8. Snow, A., Warner, J. and Zilberfein, F. (2008) ‘The increase of treatment options at the end of life: Impact on the social work role in an in patient hospital setting’, Social Work in Health Care, 47(4), pp. 376–91. Thomas, K. and Free, A. (2006) ‘The Gold Standards Framework is pivotal to palliative care’, Guidelines in Practice, 9(6), pp. 29–40. Thomas, S. and MacMahon, D. (2004) ‘Parkinson’s disease, palliative care and older people’, Nursing Older People, 16(1), pp. 22–7. van Teijlingen, E. (2003) ‘Review of the qualitative researcher’s companion’, Sociological Review Online, 8, p. 1. Werner, P. and Carmel, S. (2001) ‘End-of-life decision making: Practices, beliefs and knowledge of social workers in health care settings’, Educational Gerontology, 27(5), pp. 387–98. World Health Organisation (WHO) (2004) Better Palliative Care for Older People, edited by E. Davies and I. J. Higginson, Geneva, WHO. Worth, A. (2001) ‘Assessment of the needs of older people by district nurses and social workers: A changing culture’, Journal of Interprofessional Care, 15(3), pp. 257–66. Wressle, E., Engstrand, C. and Granerus, A.-K. (2007) ‘Living with Parkinson’s disease: Elderly patients’ and relatives perspective on daily living’, Australian Occupational Therapy, 54(2), pp. 131–9, available online atwww.euro.who.int/document/E82933.pdf",
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What Do Social Workers Think about the Palliative Care Needs of People with Parkinson's Disease? / Waldron, Mary; Kernohan, W.George; Hasson, Felicity; Foster, Susan; Cochrane, Barbara.

In: British Journal of Social Work, Vol. early, 23.11.2011, p. 1-17.

Research output: Contribution to journalArticle

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T1 - What Do Social Workers Think about the Palliative Care Needs of People with Parkinson's Disease?

AU - Waldron, Mary

AU - Kernohan, W.George

AU - Hasson, Felicity

AU - Foster, Susan

AU - Cochrane, Barbara

N1 - Reference text: Auty, S. (2005) ‘Palliative care: Roles and perceptions’, International Journal of Palliative Nursing, 11(2), p. 61. Bliss, J. and While, A. (2007) ‘District nursing and social work: Palliative and continuing care delivery’, British Journal of Community Nursing, 12(6), pp. 268–72. Borasio, G. D. and Voltz, R. (2005) ‘Palliative care in neurology, commentary’, Journal of Palliative Care, 21(3), pp. 188–9. Chen, J. J., Trombetta, D. P. and Fernandez, H. H. (2008) ‘Palliative management of Parkinson disease: Focus on non motor, distressing symptoms’, Journal of Pharmacy Practice, 21(4), pp. 262–72. Christ, G. and Diwan, S. (2008) ‘Role of social work in managing chronic illness care’, in S. Diwan (ed.), Health Care and Older Adults Resource Review, CSWE Gero-Ed Center, Master’s Advanced Curriculum Project, available online at http://depts. washington.edu/geroctr/mac/1_6health.html. Q5 Christ, G. and Sormanti, M. (2000) ‘Advancing social work practice in end-of-life care’, Social Work in Health Care, 30(2), pp. 81–99. Coventry, P. A., Grande, G. E., Richards, D. A. and Todd, C. J. (2005) ‘Prediction of appropriate timing of palliative care for older adults with non malignant life threatening disease: A systematic review’, Age and Ageing, 34(3), pp. 218–27. Denscombe, M. (1998) The Good Research Guide for Small Scale Social Research Projects, Buckingham, Open University Press. Department of Health (2005) The National Service Framework for Long-Term Conditions, London, Department of Health. Department of Health, Social Services and Public Safety (DHSS&PS) (2009) Palliative Care and End of Life Care Strategy for Northern Ireland, Consultation Document, Belfast, DHSS&PS. Fitzsimons, D., Mullan, D., Wilson, J. S., Conway, B., Corcoran, B., Dempster, M., Gamble, J., Stewart, C., Rafferty, S., McMahon, M., MacMahon, J., Mulholland, P., Stockdale, P., Chew, E., Hanna, L., Brown, J., Ferguson, G. and Fogarty, D. (2007) ‘The challenge of patients’ unmet palliative care needs in the final stages of chronic illness’, Palliative Medicine, 21(4), pp. 313–22. Grande, G., Stajduhar, K., Aoun, S., Toye, C., Funk, L., Addington-Hall, J., Payne, S. and Todd, C. (2009) ‘Supporting lay carers in end of life care: Current gaps and future priorities’, Palliative Medicine, 23(4), pp. 339–44. Heyman, J. C. and Gutheil, I. A. (2003) ‘Attitudes of social work students towards end of life planning’, Educational Gerontology, 29(4), pp. 313–26. Heyman, J. C. and Gutheil, I. A. (2006) ‘Social work involvement in end of life planning’, Journal of Gerontological Social Work, 47(3), pp. 47–61. Holloway, M. (2006) ‘Traversing the network: A user-led care pathway approach to the management of Parkinson’s disease in the community’, Health and Social Care in the Community, 14(1), pp. 63–73. Hudson, P. L., Toye, C. and Kristjanson, L. J. (2006) ‘Would people with Parkinson’s disease benefit from palliative care?’, Palliative Medicine, 20(2), pp. 87–94. Page 16 of 17 Mary Waldron et al. 680 685 690 695 700 705 710 715 720 Huff, M. B., Weisenfluh, S., Murphy, M. and Black, P. J. (2006) ‘End of life care and social work education’, Journal of Gerontological Social Work, 48(1), pp. 219–31. Kernohan, W. G., Hasson, F. H. and Hardyway, D. (2009) ‘Palliative nursing care in other neurological conditions: Parkinson’s disease’, in E. Stevens, S. Jackson and S. Milligan (eds), Palliative Nursing, across the Spectrum of Care, Oxford, Wiley-Blackwell. Kristjanson, L. J., Aoun, S. M. and Oldham, L. (2006) ‘Palliative care and support for people with neurodegenerative conditions and their carers’, International Journal of Palliative Nursing, 12(8), pp. 368–77. Lloyd, M. (2000) ‘Where has all the care management gone? The challenges of Parkinson’s disease to the health and social care interface’, British Journal of Social Work, 30(6), pp. 737–54. Miles, M. B. and Huberman, A. M. (1994) Analysis: An Expanded Sourcebook, Thousand Oaks, CA, Sage. National Collaborating Centre for Chronic Conditions (2006) Parkinson’s Disease: National Clinical Guideline for Diagnosis and Management in Primary and Secondary Care, London, Royal College of Physicians. National Council for Palliative Care (2009) End of Life Care Manifesto 2010, London. Q6 National End of Life Care Programme (NEOLCP) (2010) Supporting People to Live and Die Well: A Framework for Social Care at the End of Life, available online at www. endoflifecareforadults.nhs.uk. Porter, B., Henry, S. R., Gray, W. K. and Walker, R. W. (2010) ‘Care requirements of a prevalent population of people with idiopathic Parkinson’s disease’, Age and Ageing, 39(2), pp. 57–61. Reith, M. and Payne, M. (2009) Social Work in End of Life and Palliative Care, Bristol, The Policy Press. Rudkins, H. and Aird, T. (2006) ‘The importance of early consideration of palliative care in Parkinson’s disease’, British Journal of Neuroscience Nursing, 2(1), pp. 10–16. Sheldon, F. M. (2000) ‘Dimensions of the role of the social worker in palliative care’, Palliative Medicine, 14(6), pp. 491–8. Snow, A., Warner, J. and Zilberfein, F. (2008) ‘The increase of treatment options at the end of life: Impact on the social work role in an in patient hospital setting’, Social Work in Health Care, 47(4), pp. 376–91. Thomas, K. and Free, A. (2006) ‘The Gold Standards Framework is pivotal to palliative care’, Guidelines in Practice, 9(6), pp. 29–40. Thomas, S. and MacMahon, D. (2004) ‘Parkinson’s disease, palliative care and older people’, Nursing Older People, 16(1), pp. 22–7. van Teijlingen, E. (2003) ‘Review of the qualitative researcher’s companion’, Sociological Review Online, 8, p. 1. Werner, P. and Carmel, S. (2001) ‘End-of-life decision making: Practices, beliefs and knowledge of social workers in health care settings’, Educational Gerontology, 27(5), pp. 387–98. World Health Organisation (WHO) (2004) Better Palliative Care for Older People, edited by E. Davies and I. J. Higginson, Geneva, WHO. Worth, A. (2001) ‘Assessment of the needs of older people by district nurses and social workers: A changing culture’, Journal of Interprofessional Care, 15(3), pp. 257–66. Wressle, E., Engstrand, C. and Granerus, A.-K. (2007) ‘Living with Parkinson’s disease: Elderly patients’ and relatives perspective on daily living’, Australian Occupational Therapy, 54(2), pp. 131–9, available online atwww.euro.who.int/document/E82933.pdf

PY - 2011/11/23

Y1 - 2011/11/23

N2 - Social workers are key professionals in assessing social care need and providing support.However, needs in the palliative care stage of chronic illness are not always wellmanaged. In this study, we set out to examine the social worker’s role in the deliveryof palliative care to clients with Parkinson’s disease (PD). Two focus groups and one individualinterview were undertaken with thirteen social workers with experience ofworking with clients with PD in community and hospice settings. Differing perceptionsof palliative care emerged: from a holistic approach to specialist care near the end oflife. Negative associations of palliative care were identified. Other barriers also exist,such as lack of knowledge and experience of PD and resources that hinder the deliveryof palliative care to clients with chronic conditions. Different interpretations of palliativecare affect its delivery to clients with long-term chronic conditions. Very fewclients with PD are referred to specialist palliative care specifically for management oftheir symptoms, which must prevent holistic care. Social workers have an important,yet underdeveloped, role in identifying and addressing palliative care needs. Policiesand procedures should be clarified regarding prioritisation and access for clients withchronic long-term conditions to appropriate palliative care.

AB - Social workers are key professionals in assessing social care need and providing support.However, needs in the palliative care stage of chronic illness are not always wellmanaged. In this study, we set out to examine the social worker’s role in the deliveryof palliative care to clients with Parkinson’s disease (PD). Two focus groups and one individualinterview were undertaken with thirteen social workers with experience ofworking with clients with PD in community and hospice settings. Differing perceptionsof palliative care emerged: from a holistic approach to specialist care near the end oflife. Negative associations of palliative care were identified. Other barriers also exist,such as lack of knowledge and experience of PD and resources that hinder the deliveryof palliative care to clients with chronic conditions. Different interpretations of palliativecare affect its delivery to clients with long-term chronic conditions. Very fewclients with PD are referred to specialist palliative care specifically for management oftheir symptoms, which must prevent holistic care. Social workers have an important,yet underdeveloped, role in identifying and addressing palliative care needs. Policiesand procedures should be clarified regarding prioritisation and access for clients withchronic long-term conditions to appropriate palliative care.

KW - Social workers

KW - Parkinson’s disease

KW - palliative care

KW - focus groups

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DO - 10.1093/bjsw/bcr157

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VL - early

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EP - 17

JO - British Journal of Social Work

T2 - British Journal of Social Work

JF - British Journal of Social Work

SN - 0045-3102

ER -