Palliative care specialists’ perceptions concerning referral of haematology patients to their services: findings from a qualitative study
Abstract Background Haematological malignancies (leukaemias, lymphomas and myeloma) are complex cancers that are relatively common, affect all ages and have divergent outcomes. Although the symptom burden of these diseases is comparable to other cancers, patients do not access specialist palliative...
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| Format: | Article |
| Language: | English |
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BMC
2018-02-01
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| Series: | BMC Palliative Care |
| Subjects: | |
| Online Access: | http://link.springer.com/article/10.1186/s12904-018-0289-1 |
| _version_ | 1811338430287708160 |
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| author | Dorothy McCaughan Eve Roman Alexandra G. Smith Anne C. Garry Miriam J. Johnson Russell D. Patmore Martin R. Howard Debra A. Howell |
| author_facet | Dorothy McCaughan Eve Roman Alexandra G. Smith Anne C. Garry Miriam J. Johnson Russell D. Patmore Martin R. Howard Debra A. Howell |
| author_sort | Dorothy McCaughan |
| collection | DOAJ |
| description | Abstract Background Haematological malignancies (leukaemias, lymphomas and myeloma) are complex cancers that are relatively common, affect all ages and have divergent outcomes. Although the symptom burden of these diseases is comparable to other cancers, patients do not access specialist palliative care (SPC) services as often as those with other cancers. To determine the reasons for this, we asked SPC practitioners about their perspectives regarding the barriers and facilitators influencing haematology patient referrals. Methods We conducted a qualitative study, set within the United Kingdom’s (UK’s) Haematological Malignancy Research Network (HMRN: www.hmrn.org), a population-based cohort in the North of England. In-depth, semi-structured interviews were conducted with 20 SPC doctors and nurses working in hospital, community and hospice settings between 2012 and 2014. Interviews were digitally audio-recorded, transcribed and analysed for thematic content using the ‘Framework’ method. Results Study participants identified a range of barriers and facilitators influencing the referral of patients with haematological malignancies to SPC services. Barriers included: the characteristics and pathways of haematological malignancies; the close patient/haematology team relationship; lack of role clarity; late end of life discussions and SPC referrals; policy issues; and organisational issues. The main facilitators identified were: establishment of inter-disciplinary working patterns (co-working) and enhanced understanding of roles; timely discussions with patients and early SPC referral; access to information platforms able to support information sharing; and use of indicators to ‘flag’ patients’ needs for SPC. Collaboration between haematology and SPC was perceived as beneficial and desirable, and was said to be increasing over time. Conclusions This is the first UK study to explore SPC practitioners’ perceptions concerning haematology patient referrals. Numerous factors were found to influence the likelihood of referral, some of which related to the organisation and delivery of SPC services, so were amenable to change, and others relating to the complex and unique characteristics and pathways of haematological cancers. Further research is needed to assess the extent to which palliative care is provided by haematology doctors and nurses and other generalists and ways in which clinical uncertainty could be used as a trigger, rather than a barrier, to referral. |
| first_indexed | 2024-04-13T18:10:40Z |
| format | Article |
| id | doaj.art-d739d12214d84bd586e78c20a0d91395 |
| institution | Directory Open Access Journal |
| issn | 1472-684X |
| language | English |
| last_indexed | 2024-04-13T18:10:40Z |
| publishDate | 2018-02-01 |
| publisher | BMC |
| record_format | Article |
| series | BMC Palliative Care |
| spelling | doaj.art-d739d12214d84bd586e78c20a0d913952022-12-22T02:35:55ZengBMCBMC Palliative Care1472-684X2018-02-0117111110.1186/s12904-018-0289-1Palliative care specialists’ perceptions concerning referral of haematology patients to their services: findings from a qualitative studyDorothy McCaughan0Eve Roman1Alexandra G. Smith2Anne C. Garry3Miriam J. Johnson4Russell D. Patmore5Martin R. Howard6Debra A. Howell7Epidemiology & Cancer Statistics Group, University of YorkEpidemiology & Cancer Statistics Group, University of YorkEpidemiology & Cancer Statistics Group, University of YorkDepartment of Palliative Care, York HospitalWolfson Palliative Care Research Centre, University of HullQueen’s Centre for Oncology and Haematology, Castle Hill HospitalDepartment of Haematology, York HospitalEpidemiology & Cancer Statistics Group, University of YorkAbstract Background Haematological malignancies (leukaemias, lymphomas and myeloma) are complex cancers that are relatively common, affect all ages and have divergent outcomes. Although the symptom burden of these diseases is comparable to other cancers, patients do not access specialist palliative care (SPC) services as often as those with other cancers. To determine the reasons for this, we asked SPC practitioners about their perspectives regarding the barriers and facilitators influencing haematology patient referrals. Methods We conducted a qualitative study, set within the United Kingdom’s (UK’s) Haematological Malignancy Research Network (HMRN: www.hmrn.org), a population-based cohort in the North of England. In-depth, semi-structured interviews were conducted with 20 SPC doctors and nurses working in hospital, community and hospice settings between 2012 and 2014. Interviews were digitally audio-recorded, transcribed and analysed for thematic content using the ‘Framework’ method. Results Study participants identified a range of barriers and facilitators influencing the referral of patients with haematological malignancies to SPC services. Barriers included: the characteristics and pathways of haematological malignancies; the close patient/haematology team relationship; lack of role clarity; late end of life discussions and SPC referrals; policy issues; and organisational issues. The main facilitators identified were: establishment of inter-disciplinary working patterns (co-working) and enhanced understanding of roles; timely discussions with patients and early SPC referral; access to information platforms able to support information sharing; and use of indicators to ‘flag’ patients’ needs for SPC. Collaboration between haematology and SPC was perceived as beneficial and desirable, and was said to be increasing over time. Conclusions This is the first UK study to explore SPC practitioners’ perceptions concerning haematology patient referrals. Numerous factors were found to influence the likelihood of referral, some of which related to the organisation and delivery of SPC services, so were amenable to change, and others relating to the complex and unique characteristics and pathways of haematological cancers. Further research is needed to assess the extent to which palliative care is provided by haematology doctors and nurses and other generalists and ways in which clinical uncertainty could be used as a trigger, rather than a barrier, to referral.http://link.springer.com/article/10.1186/s12904-018-0289-1CancerLeukaemiaLymphomaMyelomaHaematologySpecialist palliative care |
| spellingShingle | Dorothy McCaughan Eve Roman Alexandra G. Smith Anne C. Garry Miriam J. Johnson Russell D. Patmore Martin R. Howard Debra A. Howell Palliative care specialists’ perceptions concerning referral of haematology patients to their services: findings from a qualitative study BMC Palliative Care Cancer Leukaemia Lymphoma Myeloma Haematology Specialist palliative care |
| title | Palliative care specialists’ perceptions concerning referral of haematology patients to their services: findings from a qualitative study |
| title_full | Palliative care specialists’ perceptions concerning referral of haematology patients to their services: findings from a qualitative study |
| title_fullStr | Palliative care specialists’ perceptions concerning referral of haematology patients to their services: findings from a qualitative study |
| title_full_unstemmed | Palliative care specialists’ perceptions concerning referral of haematology patients to their services: findings from a qualitative study |
| title_short | Palliative care specialists’ perceptions concerning referral of haematology patients to their services: findings from a qualitative study |
| title_sort | palliative care specialists perceptions concerning referral of haematology patients to their services findings from a qualitative study |
| topic | Cancer Leukaemia Lymphoma Myeloma Haematology Specialist palliative care |
| url | http://link.springer.com/article/10.1186/s12904-018-0289-1 |
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