Living with lymphoedema in Ireland: patient and service provider perspectives

Hdl Handle:
http://hdl.handle.net/10147/145213
Title:
Living with lymphoedema in Ireland: patient and service provider perspectives
Authors:
Murray, Maeve; Gallagher, Pamela; O'Carroll, Susan
Affiliation:
Irish Cancer Society, Dublin City University
Publisher:
Irish Cancer Society
Issue Date:
Feb-2010
URI:
http://hdl.handle.net/10147/145213
Additional Links:
http://www.cancer.ie/research/
Item Type:
Report
Language:
en
Description:
Lymphoedema refers to swelling or oedema which is comprised of lymph fluid. It is caused by damage to or malformation of the lymphatic system. It frequently develops after treatment for cancer, most often breast cancer but also cervical, prostate, bladder and bowel cancer. Furthermore it can occur as a complication of non-cancer related conditions or can develop independently. The swelling usually occurs in the limbs. However, it can also occur in other parts of the body such as the head, neck, breast and genitalia, depending on the location of the lymphatic impairment (Moffatt et al., 2006). It is a chronic, incurable condition believed to affect at least 1.33 per 1,000 of the population (Moffatt et al., 2003). Lymphoedema can lead to pain, discomfort, and increased susceptibility to skin infections such as cellulitis, which may require hospitalisation (Morgan, Franks & Moffatt, 2005). Lymphoedema can also have significant psychological and social consequences (Morgan, Franks et al., 2005; McWayne & Heiney, 2005; Tobin et al., 1993; Williams et al., 2004). Given the chronic nature of lymphoedema, its impact on physical and psychological health and the potential increase in prevalence rates, it is imperative that lymphoedema patients have access to patient-centred, evenly distributed services. Previous studies of lymphoedema service provision in Australia and the UK have found arbitrarily located, disjointed and under-resourced services (Australasian Lymphology Association, 2003; BreastCare Victoria, 2005; DHSSPS, 2004; Morgan, 2006; Todd, 2006). While anecdotal evidence suggests that similar difficulties in lymphoedema service provision are present in Ireland, to date, there has been no research conducted on lymphoedema service provision or on patients’ experiences of living with lymphoedema in the Republic of Ireland. Without a clear picture from both practitioners’ and patients’ perspectives coordination between services, planning on how to develop and expand services and formulation on how to address gaps and inequalities cannot take place. The overall aims of the present study were to investigate current lymphoedema service provision from both service providers’ and patients’ perspectives, in addition to exploring patients’ experiences of living with lymphoedema in Ireland, for the first time. These aims were achieved through a three-stage project. The first phase of the study involved a postal survey of lymphoedema practitioners to explore their perspective on current lymphoedema service provision in Ireland, thereby setting the scene and informing subsequent phases of the research. The second phase of the study employed focus group methodology to explore patients’ experiences of accessing treatment and living with lymphoedema. Finally the third phase of the study involved a postal survey of lymphoedema patients to investigate the experiences of a wider group of lymphoedema patients. The findings from all three phases were integrated in order to provide a more complete depiction of lymphoedema service provision and patients’ experiences of living with lymphoedema, and to inform recommendations.
Keywords:
CANCER; PATIENT EXPERIENCE
Local subject classification:
LYMPHOEDEMA
Sponsors:
Commissioned and funded by the Irish Cancer Society.

Full metadata record

DC FieldValue Language
dc.contributor.authorMurray, Maeveen
dc.contributor.authorGallagher, Pamelaen
dc.contributor.authorO'Carroll, Susanen
dc.date.accessioned2011-10-13T11:54:43Z-
dc.date.available2011-10-13T11:54:43Z-
dc.date.issued2010-02-
dc.identifier.urihttp://hdl.handle.net/10147/145213-
dc.descriptionLymphoedema refers to swelling or oedema which is comprised of lymph fluid. It is caused by damage to or malformation of the lymphatic system. It frequently develops after treatment for cancer, most often breast cancer but also cervical, prostate, bladder and bowel cancer. Furthermore it can occur as a complication of non-cancer related conditions or can develop independently. The swelling usually occurs in the limbs. However, it can also occur in other parts of the body such as the head, neck, breast and genitalia, depending on the location of the lymphatic impairment (Moffatt et al., 2006). It is a chronic, incurable condition believed to affect at least 1.33 per 1,000 of the population (Moffatt et al., 2003). Lymphoedema can lead to pain, discomfort, and increased susceptibility to skin infections such as cellulitis, which may require hospitalisation (Morgan, Franks & Moffatt, 2005). Lymphoedema can also have significant psychological and social consequences (Morgan, Franks et al., 2005; McWayne & Heiney, 2005; Tobin et al., 1993; Williams et al., 2004). Given the chronic nature of lymphoedema, its impact on physical and psychological health and the potential increase in prevalence rates, it is imperative that lymphoedema patients have access to patient-centred, evenly distributed services. Previous studies of lymphoedema service provision in Australia and the UK have found arbitrarily located, disjointed and under-resourced services (Australasian Lymphology Association, 2003; BreastCare Victoria, 2005; DHSSPS, 2004; Morgan, 2006; Todd, 2006). While anecdotal evidence suggests that similar difficulties in lymphoedema service provision are present in Ireland, to date, there has been no research conducted on lymphoedema service provision or on patients’ experiences of living with lymphoedema in the Republic of Ireland. Without a clear picture from both practitioners’ and patients’ perspectives coordination between services, planning on how to develop and expand services and formulation on how to address gaps and inequalities cannot take place. The overall aims of the present study were to investigate current lymphoedema service provision from both service providers’ and patients’ perspectives, in addition to exploring patients’ experiences of living with lymphoedema in Ireland, for the first time. These aims were achieved through a three-stage project. The first phase of the study involved a postal survey of lymphoedema practitioners to explore their perspective on current lymphoedema service provision in Ireland, thereby setting the scene and informing subsequent phases of the research. The second phase of the study employed focus group methodology to explore patients’ experiences of accessing treatment and living with lymphoedema. Finally the third phase of the study involved a postal survey of lymphoedema patients to investigate the experiences of a wider group of lymphoedema patients. The findings from all three phases were integrated in order to provide a more complete depiction of lymphoedema service provision and patients’ experiences of living with lymphoedema, and to inform recommendations.en
dc.description.sponsorshipCommissioned and funded by the Irish Cancer Society.en
dc.language.isoenen
dc.publisherIrish Cancer Societyen
dc.relation.urlhttp://www.cancer.ie/research/en
dc.subjectCANCERen
dc.subjectPATIENT EXPERIENCEen
dc.subject.otherLYMPHOEDEMAen
dc.titleLiving with lymphoedema in Ireland: patient and service provider perspectivesen
dc.typeReporten
dc.contributor.departmentIrish Cancer Society, Dublin City Universityen
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