Palliative care for people with Parkinson's Disease and their carers

W.George Kernohan, F. Hasson, Mary Waldron, Barbara Cochrane, Dorry McLaughlin, Susan Foster, Helen Chambers, Marian McLaughlin

Research output: Chapter in Book/Report/Conference proceedingConference contribution

Abstract

Background: Whilst management of Parkinson’s disease (PD) patients is primarily aimed at preserving life expectancy and limited motor disabilities (Behari et al 2005), a palliative care approach in management of such conditions has been advocated (DH, 2005). However, research suggests that palliative care services are often fragmented and inaccessible resulting in poor quality care for people with advanced PD. (Thompson & MacMahon 2004a). Aims: To explore experiences, palliative care needs and gaps in service provision from the perspective of the person with PD. Methods: Exploratory research design using a qualitative approach. Individual semi structured interviews with 54 participants. Data subjected to thematic content analysis. Results: The participants’ reported varied diagnostic experience. Most had little prior PD knowledge. Some felt there was limited subsequent signposting to services. PD placed a physical, psychological and social toll on participants due to loss of mobility and independence, with increasing dependency on informal carers highlighted. Whilst most appreciated their medical provision, their experience of medication relief and service delivery was mixed. Some also referred to a lack of information on financial and social support networks. Palliative care was generally perceived as related to cancer and terminal care. Participants coped with PD by adopting a positive outlook, despite some anxiety about PD’s rate of progression. They appreciated the information, advice and supportive role of the PD Society. Discussion: This study highlights the varied experience of people with PD suggesting some evidence of unmet palliative care need for people with PD and fragmented available services. There was also variation in the levels of clinical and social care support and information signposting among participants. Conclusions: Although this was a small scale exploratory investigation, involving one time-point, it lends support to the development of a proactive integrative palliative care services approach to address the needs of people with PD.
LanguageEnglish
Title of host publicationThe 2009 RCN International Nursing Research Conference
Pages85-85
Number of pages1
Publication statusPublished - 24 Mar 2009
EventRCN 2009 International Nursing Research Conference - Cardiff, Wales
Duration: 24 Mar 2009 → …

Conference

ConferenceRCN 2009 International Nursing Research Conference
Period24/03/09 → …

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Palliative Care
Caregivers
Parkinson Disease
Social Support
Financial Support
Terminal Care
Life Expectancy
Research Design
Psychology

Cite this

Kernohan, W. G., Hasson, F., Waldron, M., Cochrane, B., McLaughlin, D., Foster, S., ... McLaughlin, M. (2009). Palliative care for people with Parkinson's Disease and their carers. In The 2009 RCN International Nursing Research Conference (pp. 85-85)
Kernohan, W.George ; Hasson, F. ; Waldron, Mary ; Cochrane, Barbara ; McLaughlin, Dorry ; Foster, Susan ; Chambers, Helen ; McLaughlin, Marian. / Palliative care for people with Parkinson's Disease and their carers. The 2009 RCN International Nursing Research Conference. 2009. pp. 85-85
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abstract = "Background: Whilst management of Parkinson’s disease (PD) patients is primarily aimed at preserving life expectancy and limited motor disabilities (Behari et al 2005), a palliative care approach in management of such conditions has been advocated (DH, 2005). However, research suggests that palliative care services are often fragmented and inaccessible resulting in poor quality care for people with advanced PD. (Thompson & MacMahon 2004a). Aims: To explore experiences, palliative care needs and gaps in service provision from the perspective of the person with PD. Methods: Exploratory research design using a qualitative approach. Individual semi structured interviews with 54 participants. Data subjected to thematic content analysis. Results: The participants’ reported varied diagnostic experience. Most had little prior PD knowledge. Some felt there was limited subsequent signposting to services. PD placed a physical, psychological and social toll on participants due to loss of mobility and independence, with increasing dependency on informal carers highlighted. Whilst most appreciated their medical provision, their experience of medication relief and service delivery was mixed. Some also referred to a lack of information on financial and social support networks. Palliative care was generally perceived as related to cancer and terminal care. Participants coped with PD by adopting a positive outlook, despite some anxiety about PD’s rate of progression. They appreciated the information, advice and supportive role of the PD Society. Discussion: This study highlights the varied experience of people with PD suggesting some evidence of unmet palliative care need for people with PD and fragmented available services. There was also variation in the levels of clinical and social care support and information signposting among participants. Conclusions: Although this was a small scale exploratory investigation, involving one time-point, it lends support to the development of a proactive integrative palliative care services approach to address the needs of people with PD.",
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Kernohan, WG, Hasson, F, Waldron, M, Cochrane, B, McLaughlin, D, Foster, S, Chambers, H & McLaughlin, M 2009, Palliative care for people with Parkinson's Disease and their carers. in The 2009 RCN International Nursing Research Conference. pp. 85-85, RCN 2009 International Nursing Research Conference, 24/03/09.

Palliative care for people with Parkinson's Disease and their carers. / Kernohan, W.George; Hasson, F.; Waldron, Mary; Cochrane, Barbara; McLaughlin, Dorry; Foster, Susan; Chambers, Helen; McLaughlin, Marian.

The 2009 RCN International Nursing Research Conference. 2009. p. 85-85.

Research output: Chapter in Book/Report/Conference proceedingConference contribution

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AU - Hasson, F.

AU - Waldron, Mary

AU - Cochrane, Barbara

AU - McLaughlin, Dorry

AU - Foster, Susan

AU - Chambers, Helen

AU - McLaughlin, Marian

PY - 2009/3/24

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N2 - Background: Whilst management of Parkinson’s disease (PD) patients is primarily aimed at preserving life expectancy and limited motor disabilities (Behari et al 2005), a palliative care approach in management of such conditions has been advocated (DH, 2005). However, research suggests that palliative care services are often fragmented and inaccessible resulting in poor quality care for people with advanced PD. (Thompson & MacMahon 2004a). Aims: To explore experiences, palliative care needs and gaps in service provision from the perspective of the person with PD. Methods: Exploratory research design using a qualitative approach. Individual semi structured interviews with 54 participants. Data subjected to thematic content analysis. Results: The participants’ reported varied diagnostic experience. Most had little prior PD knowledge. Some felt there was limited subsequent signposting to services. PD placed a physical, psychological and social toll on participants due to loss of mobility and independence, with increasing dependency on informal carers highlighted. Whilst most appreciated their medical provision, their experience of medication relief and service delivery was mixed. Some also referred to a lack of information on financial and social support networks. Palliative care was generally perceived as related to cancer and terminal care. Participants coped with PD by adopting a positive outlook, despite some anxiety about PD’s rate of progression. They appreciated the information, advice and supportive role of the PD Society. Discussion: This study highlights the varied experience of people with PD suggesting some evidence of unmet palliative care need for people with PD and fragmented available services. There was also variation in the levels of clinical and social care support and information signposting among participants. Conclusions: Although this was a small scale exploratory investigation, involving one time-point, it lends support to the development of a proactive integrative palliative care services approach to address the needs of people with PD.

AB - Background: Whilst management of Parkinson’s disease (PD) patients is primarily aimed at preserving life expectancy and limited motor disabilities (Behari et al 2005), a palliative care approach in management of such conditions has been advocated (DH, 2005). However, research suggests that palliative care services are often fragmented and inaccessible resulting in poor quality care for people with advanced PD. (Thompson & MacMahon 2004a). Aims: To explore experiences, palliative care needs and gaps in service provision from the perspective of the person with PD. Methods: Exploratory research design using a qualitative approach. Individual semi structured interviews with 54 participants. Data subjected to thematic content analysis. Results: The participants’ reported varied diagnostic experience. Most had little prior PD knowledge. Some felt there was limited subsequent signposting to services. PD placed a physical, psychological and social toll on participants due to loss of mobility and independence, with increasing dependency on informal carers highlighted. Whilst most appreciated their medical provision, their experience of medication relief and service delivery was mixed. Some also referred to a lack of information on financial and social support networks. Palliative care was generally perceived as related to cancer and terminal care. Participants coped with PD by adopting a positive outlook, despite some anxiety about PD’s rate of progression. They appreciated the information, advice and supportive role of the PD Society. Discussion: This study highlights the varied experience of people with PD suggesting some evidence of unmet palliative care need for people with PD and fragmented available services. There was also variation in the levels of clinical and social care support and information signposting among participants. Conclusions: Although this was a small scale exploratory investigation, involving one time-point, it lends support to the development of a proactive integrative palliative care services approach to address the needs of people with PD.

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BT - The 2009 RCN International Nursing Research Conference

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Kernohan WG, Hasson F, Waldron M, Cochrane B, McLaughlin D, Foster S et al. Palliative care for people with Parkinson's Disease and their carers. In The 2009 RCN International Nursing Research Conference. 2009. p. 85-85