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Aust. J. Rural Health (2015) 23, 286–290
Original Research ‘You never leave work when you live on a cattle property’: Special problems for rural property owners who have to relocate for specialist treatment Pam McGrath, BSocWk, MA, PhD Centre for Community Science, Population and Social Health Program, Griffith Health Institute, Griffith University, Logan Campus, Queensland, Australia
Abstract Objective: This paper contributes to the literature on relocation for specialist care by providing findings on specific issues impacting on rural farmers and property owners who have to travel to the metropolitan area for specialist care for a haematological malignancy. Design and setting: This paper uses descriptive qualitative research based on 45 interviews with patients with haematology in Queensland. The interviews were audio-recorded, transcribed verbatim, coded and thematically analysed. Results: In addition to issues of distance, farmers and rural property owners who have to relocate for specialist care must deal with problems associated with the lack of opportunity to take absence from the property because of the inescapable pressure of daily farm and property responsibilities and the high cost of, or lack of opportunity to, outsource daily maintenance. Further concerns include the cost of relocation in the context of continuing drought, serious problems sustaining the travel and time away required, and the lack of choice for some but to deal with treatment alone. Conclusion: In recent years there has been considerable progress with regard to overcoming the distance barrier for rural and remote patients with cancer through innovative clinical models using technology Correspondence: Associate Professor Pam McGrath, Centre for Community Science, Population and Social Health Program, Griffith Health Institute, Griffith University, LO5, Level 1, Logan Campus, Meadowbrook, Queensland, 4131, Australia. Email: [email protected]; p.mcgrath@ griffith.edu.au Declaration of conflict of interest The research was conducted as an independent university research at Griffith University under full ethical clearance. The author has no conflict of interest in relation to the issue of relocation for rural farmers and property owners. Accepted for publication 2 March 2015. © 2015 National Rural Health Alliance Inc.
and telemedicine. However, there has been limited uptake of such models for patients with haematology. The present findings indicate that from the perspective of rural farmers and property owners there are important reasons why the use of innovative strategies should be fostered and expanded. KEY WORDS: cancer, farmer, haematology, property owner, qualitative, relocation.
Introduction Haematological malignancies, also known as cancers of blood cells, are a diverse group of conditions subdivided into three main diseases: leukaemia, lymphoma and myeloma.1 Although treatments vary, all conditions require specialist diagnosis and care which is usually provided from experts located in metropolitan hospitals.1–4 The research that is available indicates that for rural and remote patients with haematology who have to relocate for specialist care, there can be a range of psychosocial, practical and financial problems associated with separation from home and family, disruption to work and social life, and financial distress.5,6 This paper contributes to the literature on relocation for specialist care by providing a subset of findings on specific issues impacting on rural farmers and property owners who have to travel to the metropolitan area for specialist care for a haematological malignancy. The subset of findings are from a recent study funded by the Leukaemia Foundation of Queensland (LFQ) that examines the financial and psychosocial impact of relocation for specialist care for patients with haematology in Queensland. LFQ (http://www.leukaemiaqld.org.au/) is a major nongovernment organisation that provides supportive care for patients with haematology and their families as well as free accommodation services for those who have to relocate for specialist care. doi: 10.1111/ajr.12191
287
RELOCATION FOR RURAL PROPERTY OWNERS
What is already known on this subject: • Research is starting to document the range of psychosocial and financial problems associated with relocation for specialist treatment. • Although there is extensive research on the health disadvantage for rural and remote Australians diagnosed with cancer, as yet, there is little information on the specific problems for rural farmers and property owners who have to relocate for specialist haematology care.
Methods The qualitative descriptive study involved 45 in-depth interviews with patients diagnosed with a haematological malignancy living in Queensland. All individuals interviewed had made contact with LFQ during the calendar year of 2012. Details of the purposive sample are outlined in Table 1. The study had full ethical clearance by the Griffith University Human Research Ethics Committee (GU ref no.: HSV/09/13) and participants received an approved patient information sheet about the study and consent form by post prior to enrolment in the study. Formal consent was obtained from all participants prior to interviewing. The interviews were digitally recorded, transcribed verbatim, coded using the QSR NVivo Qualitative Solutions and Research Pty Ltd, Melbourne, Victoria, Australia computer program and thematically analysed. The interviewing and coding were completed by the investigator and project officer for the study who had ongoing collaborative discussions on the progress of the interviews and the development of the coding. All of the participants’ statements were coded and the titles of the codes remained as close to the participants’ words as possible. The findings presented in this paper are from the codes specifically on the topic of the special problems for rural farmers and property owners set in the context of the full findings on issues associated with relocation for specialist treatment. The findings from the project were developed into eight interlocking themes, including the challenge of accessing treatment from a distance; strategies for overcoming the distance barrier, including what works now and ideas for the future; the importance of work issues for both the patient and their family; the additional costs of relocation and treatment; the factors contributing to financial distress and hardship; the financial buffers; the possibility of a spiral to poverty; and the contribution of LFQ’s supportive care service delivery to ameliorating the impact of relocation. The following findings specific to property owners were identified and reported as one of the key © 2015 National Rural Health Alliance Inc.
What this study adds: • There are specific problems for rural farmers and property owners that need to be taken into consideration for clinical service delivery planning for patients with haematology. • The problems are both serious and unavoidable, leaving rural farmers and property owners with limited choice and few effective solutions. This is an area where the response to the concerns posited must come from flexible service delivery and innovative health systems planning. • There is a sense of urgency inherent in the description of relocation problems by the rural farmers and property owners that needs to be heard.
issues under the first theme: the challenge of accessing treatment from a distance. The findings are presently in the initial stage of publication.7
Results As discussed in the following list, there were a number of factors identified that were specific to farmers and rural property owners that collectively point to the vulnerability of this group in relation to issues associated with relocation. Travel is not an option: ‘You never leave work when you live on a cattle property’. The findings indicate that it is common for the owner of farms and rural properties not to be able to leave their situation because of practical reasons of needing to be there to feed animals and conduct the essential daily work required to maintain a property. The responsibilities of running the property were described as constant and could not be put on hold for absences. Examples were provided of events, such as fences collapsing and cattle escaping, that were an ever-present possibilities and thus were barriers to individuals leaving the property. Outsourcing maintenance: ‘There’s just no money; we don’t have somebody working for us’. One participant had staff to maintain the property in his absence. Another, who did not have staff, paid for assistance for a short leave of absence but found this to be a very expensive option, for example: ‘But again that’s another big expense . . . have to opt out running the property and pay on top of that for somebody to come in and do it’. However, most either did not have others in their employ to take over maintenance in their absence or they could not afford the cost of paying to employ a caretaker.
288 TABLE 1:
P. MCGRATH
Description of purposive sample
Description of purposive sample, n = 45 Gender Age
Diagnostic groups
Geographic location
Male, n = 20 Female, n = 25 18–29 years, n = 4 30–39 years, n = 5 40–49 years, n = 12 50–59 years, n = 17 60–69 years, n = 5 70+ years, n = 2 Hodgkin’s disease, n = 3 Non-Hodgkin’s lymphoma, n = 19 Acute myeloid leukaemia, n = 7 Acute lymphoblastic leukaemia, n = 1 Acute promyelocytic leukaemia, n = 4 Chronic myeloid leukaemia, n = 1 Chronic lymphocytic leukaemia, n = 1 Myeloma, n = 6 Myelodysplastic syndrome, n = 1 Myeloproliferative neoplasm essential thrombocythemia, n = 1 Haemolytic anaemia, n = 1 Metropolitan, n = 5 Regional, n = 16 Rural, n = 14 Remote, n = 9 Interstate, n = 1
Note on regional classification: As the focus of the research is on relocation, a regional classification system for the purposive sample was developed based on the government scheme for assisting patients with travel and accommodation, the Patient Transit Subsidy Scheme (PTSS). Thus, the following classifiers guided the participant selection: (i) metropolitan, which includes individuals within 50 km of major treating hospitals, a group not subsidised by the PTSS; (ii) regional, which includes individuals living within 50 km of a regional hospital, also not covered by PTSS; (iii) rural, which includes individuals whose residential address is beyond 50 km of the treating centres, and thus eligible for PTSS, but less than 300 km; (iv) remote, which includes those living over 300 km from the specialist hospital, a distance which denotes the limit that a patient can complete a round trip in 1 day (for those over 300 km PTSS funds overnight accommodation during the travel); and (v) interstate, individuals not covered by Queensland PTSS.
Financial hardship and the drought: ‘At that time we were in the middle of a drought too’. The descriptions of problems with relocation were situated in the context of the presence and impact of
ongoing drought conditions. Of key concern were the stresses and physical demands: as one participant summed up ‘running a property in a drought is pretty hard’. Importantly, as well as practical implications, the drought was accompanied by financial hardship for those dependent on the land for income. Relocation for specialist treatment adds further financial demands that can be difficult to meet. In the words of one participant, ‘Yes, even without all of this going on it’s not been good time recently for farmers’. Distance problems: ‘It was not just a five minute drive from where we were to the hospital’. For those living in the regional, rural and remote areas of Queensland, there were often long distances to travel to the metropolitan treating centres. The distances create a barrier to daily return travel to hospital and can often require significant time away from the property which exacerbates the situation. Carer absence: ‘I guess it was the loneliness of sitting in the motel room for 4 months’. There are long distances to negotiate if the carer is to be with the patient and look after the farm/property at the same time. Often if there is a couple, one will have to remain on the land while the other, the patient, relocates to the metropolitan area for treatment. This will mean the patient will have to deal with the stress of diagnosis and treatment alone. Apart from the practical problems of dealing with treatment without support, the experience can lead to loneliness for the patient in the metropolitan centre. As one described the experience, ‘there was just a lot of tears, a lot of trying to hang it together’. With a great deal of planning and coordination of visits, some were able to have visits by family members or had family members to help in the metropolitan area. Routine follow-up: ‘I can’t keep running backwards and forwards’. It is common for patients diagnosed with a haematological malignancy to have ongoing monitoring and routine follow-up over the years of their illness. For regional, rural and remote patients, such routine follow-up can involve long hours of travel, often requiring overnight stays, for short appointments. It is the constancy of the demands of travel that is difficult for property owners to sustain. Impact on the family: ‘Yeah, everyone sort of stepped in and did what needed to be done’. The impact of relocation for specialist care has a ripple effect that can impact on the whole family circle. For those fortunate enough to be able to access family support, it can take a great deal of organising different members of the family to engage in the maintenance of the property if the owner is away or be with the patient in the metropolitan area. This valuable participation will make demands on a diversity of resources of family © 2015 National Rural Health Alliance Inc.
289
RELOCATION FOR RURAL PROPERTY OWNERS
members, including, for example, their time, finances and energy. The inherent dilemma: ‘. . . if I had to choose I would choose my home and stop treatment’. The determination to maintain ownership of the farm or property can be a primary concern, especially if the property has been in the family for generations and there are succession plans for family members. The financial strain of diagnosis and treatment and the irresolvable conflict between maintaining the farm and attending the metropolitan treatment centre was reported to, in some situations, lead to a consideration of a choice between the property and treatment. As one participant summed up, the choice would be for the farm even if this meant having to stop treatment. They are little issues but they all add up to big issues. Yes, that is a big thing (owning the farm) because if we had a mortgage that would have changed everything. We would have ended up selling the farm or stopping treatment, one of the two. And what I think I would have stopped treatment rather than sell the farm because we are keeping it for our (family member) and you can’t buy land anymore and they can do what they want with it when we are gone. I am saying financially if I had to choose I would choose my home and stop treatment.
Discussion The international literature indicates that lengthy travel to specialist care is not only a psychosocial stress for patients with cancer but can also be a barrier to accessing and completing treatment.5,8 Described by Baird and associates8 as ‘distance decay’, there is evidence that for rural patients increasing distance to specialist hospitals can translate into reduced admission rates to specialist hospitals. The findings presented in this paper indicate that lengthy travel is only one of the factors that impact the process of relocation for specialist care for rural farmers and property owners. In addition to issues of distance, there is the lack of opportunity to take absence from the property because of the inescapable pressure of daily farm and property responsibilities and the high cost of, or lack of opportunity to, outsource daily maintenance. The findings indicate that the cost of relocation for specialist care can be another financial burden at a time when rural farmers and property owners are economically stressed by drought conditions. Raphael and associates’9 research confirm the concerns of drought by demonstrating not only that the worry about drought is widespread but also that rural families are making some level of change to the way they live because of the perceived risk of continuing drought. Drought is © 2015 National Rural Health Alliance Inc.
recorded as a disproportionate and general stressor that has the potential to erode the social and economic bases on which farming community depend.10 As Alston11 reports, the severe and widespread drought in Australia has exacerbated rural poverty and had a direct impact on the health and well-being of those living in rural areas. It is a concern that Australian male farmers have been identified as a group with an elevated risk of suicide.12 Relocation for specialist care involves a wide range of indirect and out-of-pocket costs13–15 that can be a burden for the patient and their family and exacerbate an already difficult financial situation for rural farmers and property owners. Patients with haematology often undertake lengthy and multiple inpatient treatments and most conditions require ongoing maintenance therapy or routine follow-up.1,16 Consequently, the demands of treatment can require lengthy periods away from home and continuous routine return trips for follow-up.17 The findings indicate that rural farmers and property owners can have serious problems sustaining the travel and time away required. Some will have family support, but for others the requirements of property maintenance can result in patients having to deal with the challenge of treatment alone. For many, the high demands of ongoing routine follow-up can be particularly problematic. The findings indicate that, for some, the hardships associated with relocation can ultimately translate into a question of choice between property and treatment. In recent years there has been considerable progress with regard to overcoming the distance barrier for rural and remote patients with cancer through innovative clinical models using technology and telemedicine.18,19 However, the engagement with technology-assisted patient consultation and telemedicine is only in the early stages of development in relation to patients with haematology in Queensland.7 The present findings indicate that from the perspective of rural farmers and property owners there are important reasons why the use of innovative strategies should be fostered and expanded.
Conclusion This is an exciting time in the development of oncology clinical services where alternatives to patient travel are being explored and found feasible.7,19 The findings presented in this paper indicate that there are specific stresses associated with relocation for specialist care for rural farmers and property owners diagnosed with a haematological malignancy. The hope and expectation of the article is that consideration of these stresses will be incorporated into future planning for the development of haematology clinical service provision.
290
Acknowledgements The author would like to thank Mr Bill Petch, CEO, Leukaemia Foundation of Queensland (LFQ); Mrs Barbara Hartigan, Director of LFQ Support Services; Ms Maryanne Skarparis, Support Services Coordinator LFQ; Ms Kathryn Huntley, Support Services Coordinator LFQ; and Ms Nicole Rawson for their contribution to the study. The study was funded by Leukaemia Foundation of Queensland.
References 1 National Institute for Clinical Excellence. Guidance on Cancer Services, Improving Outcomes in Haematological Cancers: The Manual. London: National Institute of Clinical Excellence, 2005. 2 De la Morena M, Gatti R. A history of bone marrow transplantation. Immunology and Allergy Clinics of North America 2010; 30: 1–15. 3 Nicholson L, Sheldon-Collins G, Sih K. Bone marrow transplantation at the Royal Hobart Hospital. Australian Nursing Journal 2009; 16: 49. 4 McGrath P. Returning home after specialist treatment for haematological malignancies: an Australian study. Family & Community Health 2001; 24: 36–48. 5 Payne S, Jarrett N, Jeffs D. The impact of travel on cancer patients’ experiences of treatment: a literature review. European Journal of Cancer Care 2000; 9: 197–203. 6 McGrath P. Relocation for specialists treatment: the New Zealand experience. In: Baker J, Walters R, eds. New Zealand and Australia in Focus. New York: Nova Science Publishers, Inc, 2012; 89–102. 7 McGrath P. Technology-based patient consultations: research findings from haematology patients in regional, rural and remote Queensland. The Patient 2014 doi: 10.1007/s40271-014-0074-z. [Epub ahead of print]. 8 Baird G, Flynn R, Baxter G, Donnelly M, Lawrence J. Travel time and cancer care: an example of the inverse care law? Rural and Remote Health 2008; 8: 1003–1013.
P. MCGRATH
9 Raphael B, Taylor M, Stevens G, Barr M, Gorringe M, Agho K. Factors associated with population risk perceptions of continuing drought in Australia. Australian Journal of Rural Health 2009; 17: 330–337. 10 Berry H, Hogan A, Owen J, Rickwood D, Fragar L. Climate change and farmers’ mental health: risks and responses. Asia-Pacific Journal of Public Health 2011; 23 ( Suppl 2): 119s–132s. 11 Alston M. Globalisation, rural restructuring and health service delivery in Australia: policy failure and the role of social work? Health and Social Care in the Community 2007; 15: 195–202. 12 Judd F, Jackson H, Fraser C, Murray G, Robins G, Komiti A. Understanding suicide in Australian farmers. Social Psychiatry and Psychiatric Epidemiology 2006; 41: 1–10. 13 Kim P. Cost of cancer care: the patient perspective. Journal of Clinical Oncology 2007; 25: 228–232. 14 Mathews M, Buehler S, West R. Perceptions of health care providers concerning patient and health care provider strategies to limit out-of-pocket costs for cancer care. Current Oncology 2009; 16: 3–8. 15 McGrath P. ‘It’s horrendous – but really, what can you do?’ Preliminary findings on the financial impact of relocation for specialist treatment. Australian Health Review 2001; 23: 94–103. 16 Paul C, Hall A, Carey M, Cameron E, Clinton-McHarg T. Access to care and impacts of cancer on daily life: do they differ for metropolitan versus regional haematological cancer survivors? Journal of Rural Health 2013; 29: s43– s50. 17 McGrath P. Accommodation for patients and carers during relocation for treatment for leukaemia: a descriptive profile. Supportive Care in Cancer 1999; 7: 6–10. 18 George M, Ngo P, Prawira A. Rural oncology: overcoming the tyranny of distance for improved cancer care. Journal of Oncology Practice 2014; 10: e146–e149. 19 Sabesan S, Roberts L, Aiken P, Joshi A, Larkins S. Timely access to specialist medical oncology services closer to home for rural patients: experience from the Townsville Teleoncology Model. Australian Journal of Rural Health 2014; 22: 156–159.
© 2015 National Rural Health Alliance Inc.
Aust. J. Rural Health (2015) 23, 286–290
Original Research ‘You never leave work when you live on a cattle property’: Special problems for rural property owners who have to relocate for specialist treatment Pam McGrath, BSocWk, MA, PhD Centre for Community Science, Population and Social Health Program, Griffith Health Institute, Griffith University, Logan Campus, Queensland, Australia
Abstract Objective: This paper contributes to the literature on relocation for specialist care by providing findings on specific issues impacting on rural farmers and property owners who have to travel to the metropolitan area for specialist care for a haematological malignancy. Design and setting: This paper uses descriptive qualitative research based on 45 interviews with patients with haematology in Queensland. The interviews were audio-recorded, transcribed verbatim, coded and thematically analysed. Results: In addition to issues of distance, farmers and rural property owners who have to relocate for specialist care must deal with problems associated with the lack of opportunity to take absence from the property because of the inescapable pressure of daily farm and property responsibilities and the high cost of, or lack of opportunity to, outsource daily maintenance. Further concerns include the cost of relocation in the context of continuing drought, serious problems sustaining the travel and time away required, and the lack of choice for some but to deal with treatment alone. Conclusion: In recent years there has been considerable progress with regard to overcoming the distance barrier for rural and remote patients with cancer through innovative clinical models using technology Correspondence: Associate Professor Pam McGrath, Centre for Community Science, Population and Social Health Program, Griffith Health Institute, Griffith University, LO5, Level 1, Logan Campus, Meadowbrook, Queensland, 4131, Australia. Email: [email protected]; p.mcgrath@ griffith.edu.au Declaration of conflict of interest The research was conducted as an independent university research at Griffith University under full ethical clearance. The author has no conflict of interest in relation to the issue of relocation for rural farmers and property owners. Accepted for publication 2 March 2015. © 2015 National Rural Health Alliance Inc.
and telemedicine. However, there has been limited uptake of such models for patients with haematology. The present findings indicate that from the perspective of rural farmers and property owners there are important reasons why the use of innovative strategies should be fostered and expanded. KEY WORDS: cancer, farmer, haematology, property owner, qualitative, relocation.
Introduction Haematological malignancies, also known as cancers of blood cells, are a diverse group of conditions subdivided into three main diseases: leukaemia, lymphoma and myeloma.1 Although treatments vary, all conditions require specialist diagnosis and care which is usually provided from experts located in metropolitan hospitals.1–4 The research that is available indicates that for rural and remote patients with haematology who have to relocate for specialist care, there can be a range of psychosocial, practical and financial problems associated with separation from home and family, disruption to work and social life, and financial distress.5,6 This paper contributes to the literature on relocation for specialist care by providing a subset of findings on specific issues impacting on rural farmers and property owners who have to travel to the metropolitan area for specialist care for a haematological malignancy. The subset of findings are from a recent study funded by the Leukaemia Foundation of Queensland (LFQ) that examines the financial and psychosocial impact of relocation for specialist care for patients with haematology in Queensland. LFQ (http://www.leukaemiaqld.org.au/) is a major nongovernment organisation that provides supportive care for patients with haematology and their families as well as free accommodation services for those who have to relocate for specialist care. doi: 10.1111/ajr.12191
287
RELOCATION FOR RURAL PROPERTY OWNERS
What is already known on this subject: • Research is starting to document the range of psychosocial and financial problems associated with relocation for specialist treatment. • Although there is extensive research on the health disadvantage for rural and remote Australians diagnosed with cancer, as yet, there is little information on the specific problems for rural farmers and property owners who have to relocate for specialist haematology care.
Methods The qualitative descriptive study involved 45 in-depth interviews with patients diagnosed with a haematological malignancy living in Queensland. All individuals interviewed had made contact with LFQ during the calendar year of 2012. Details of the purposive sample are outlined in Table 1. The study had full ethical clearance by the Griffith University Human Research Ethics Committee (GU ref no.: HSV/09/13) and participants received an approved patient information sheet about the study and consent form by post prior to enrolment in the study. Formal consent was obtained from all participants prior to interviewing. The interviews were digitally recorded, transcribed verbatim, coded using the QSR NVivo Qualitative Solutions and Research Pty Ltd, Melbourne, Victoria, Australia computer program and thematically analysed. The interviewing and coding were completed by the investigator and project officer for the study who had ongoing collaborative discussions on the progress of the interviews and the development of the coding. All of the participants’ statements were coded and the titles of the codes remained as close to the participants’ words as possible. The findings presented in this paper are from the codes specifically on the topic of the special problems for rural farmers and property owners set in the context of the full findings on issues associated with relocation for specialist treatment. The findings from the project were developed into eight interlocking themes, including the challenge of accessing treatment from a distance; strategies for overcoming the distance barrier, including what works now and ideas for the future; the importance of work issues for both the patient and their family; the additional costs of relocation and treatment; the factors contributing to financial distress and hardship; the financial buffers; the possibility of a spiral to poverty; and the contribution of LFQ’s supportive care service delivery to ameliorating the impact of relocation. The following findings specific to property owners were identified and reported as one of the key © 2015 National Rural Health Alliance Inc.
What this study adds: • There are specific problems for rural farmers and property owners that need to be taken into consideration for clinical service delivery planning for patients with haematology. • The problems are both serious and unavoidable, leaving rural farmers and property owners with limited choice and few effective solutions. This is an area where the response to the concerns posited must come from flexible service delivery and innovative health systems planning. • There is a sense of urgency inherent in the description of relocation problems by the rural farmers and property owners that needs to be heard.
issues under the first theme: the challenge of accessing treatment from a distance. The findings are presently in the initial stage of publication.7
Results As discussed in the following list, there were a number of factors identified that were specific to farmers and rural property owners that collectively point to the vulnerability of this group in relation to issues associated with relocation. Travel is not an option: ‘You never leave work when you live on a cattle property’. The findings indicate that it is common for the owner of farms and rural properties not to be able to leave their situation because of practical reasons of needing to be there to feed animals and conduct the essential daily work required to maintain a property. The responsibilities of running the property were described as constant and could not be put on hold for absences. Examples were provided of events, such as fences collapsing and cattle escaping, that were an ever-present possibilities and thus were barriers to individuals leaving the property. Outsourcing maintenance: ‘There’s just no money; we don’t have somebody working for us’. One participant had staff to maintain the property in his absence. Another, who did not have staff, paid for assistance for a short leave of absence but found this to be a very expensive option, for example: ‘But again that’s another big expense . . . have to opt out running the property and pay on top of that for somebody to come in and do it’. However, most either did not have others in their employ to take over maintenance in their absence or they could not afford the cost of paying to employ a caretaker.
288 TABLE 1:
P. MCGRATH
Description of purposive sample
Description of purposive sample, n = 45 Gender Age
Diagnostic groups
Geographic location
Male, n = 20 Female, n = 25 18–29 years, n = 4 30–39 years, n = 5 40–49 years, n = 12 50–59 years, n = 17 60–69 years, n = 5 70+ years, n = 2 Hodgkin’s disease, n = 3 Non-Hodgkin’s lymphoma, n = 19 Acute myeloid leukaemia, n = 7 Acute lymphoblastic leukaemia, n = 1 Acute promyelocytic leukaemia, n = 4 Chronic myeloid leukaemia, n = 1 Chronic lymphocytic leukaemia, n = 1 Myeloma, n = 6 Myelodysplastic syndrome, n = 1 Myeloproliferative neoplasm essential thrombocythemia, n = 1 Haemolytic anaemia, n = 1 Metropolitan, n = 5 Regional, n = 16 Rural, n = 14 Remote, n = 9 Interstate, n = 1
Note on regional classification: As the focus of the research is on relocation, a regional classification system for the purposive sample was developed based on the government scheme for assisting patients with travel and accommodation, the Patient Transit Subsidy Scheme (PTSS). Thus, the following classifiers guided the participant selection: (i) metropolitan, which includes individuals within 50 km of major treating hospitals, a group not subsidised by the PTSS; (ii) regional, which includes individuals living within 50 km of a regional hospital, also not covered by PTSS; (iii) rural, which includes individuals whose residential address is beyond 50 km of the treating centres, and thus eligible for PTSS, but less than 300 km; (iv) remote, which includes those living over 300 km from the specialist hospital, a distance which denotes the limit that a patient can complete a round trip in 1 day (for those over 300 km PTSS funds overnight accommodation during the travel); and (v) interstate, individuals not covered by Queensland PTSS.
Financial hardship and the drought: ‘At that time we were in the middle of a drought too’. The descriptions of problems with relocation were situated in the context of the presence and impact of
ongoing drought conditions. Of key concern were the stresses and physical demands: as one participant summed up ‘running a property in a drought is pretty hard’. Importantly, as well as practical implications, the drought was accompanied by financial hardship for those dependent on the land for income. Relocation for specialist treatment adds further financial demands that can be difficult to meet. In the words of one participant, ‘Yes, even without all of this going on it’s not been good time recently for farmers’. Distance problems: ‘It was not just a five minute drive from where we were to the hospital’. For those living in the regional, rural and remote areas of Queensland, there were often long distances to travel to the metropolitan treating centres. The distances create a barrier to daily return travel to hospital and can often require significant time away from the property which exacerbates the situation. Carer absence: ‘I guess it was the loneliness of sitting in the motel room for 4 months’. There are long distances to negotiate if the carer is to be with the patient and look after the farm/property at the same time. Often if there is a couple, one will have to remain on the land while the other, the patient, relocates to the metropolitan area for treatment. This will mean the patient will have to deal with the stress of diagnosis and treatment alone. Apart from the practical problems of dealing with treatment without support, the experience can lead to loneliness for the patient in the metropolitan centre. As one described the experience, ‘there was just a lot of tears, a lot of trying to hang it together’. With a great deal of planning and coordination of visits, some were able to have visits by family members or had family members to help in the metropolitan area. Routine follow-up: ‘I can’t keep running backwards and forwards’. It is common for patients diagnosed with a haematological malignancy to have ongoing monitoring and routine follow-up over the years of their illness. For regional, rural and remote patients, such routine follow-up can involve long hours of travel, often requiring overnight stays, for short appointments. It is the constancy of the demands of travel that is difficult for property owners to sustain. Impact on the family: ‘Yeah, everyone sort of stepped in and did what needed to be done’. The impact of relocation for specialist care has a ripple effect that can impact on the whole family circle. For those fortunate enough to be able to access family support, it can take a great deal of organising different members of the family to engage in the maintenance of the property if the owner is away or be with the patient in the metropolitan area. This valuable participation will make demands on a diversity of resources of family © 2015 National Rural Health Alliance Inc.
289
RELOCATION FOR RURAL PROPERTY OWNERS
members, including, for example, their time, finances and energy. The inherent dilemma: ‘. . . if I had to choose I would choose my home and stop treatment’. The determination to maintain ownership of the farm or property can be a primary concern, especially if the property has been in the family for generations and there are succession plans for family members. The financial strain of diagnosis and treatment and the irresolvable conflict between maintaining the farm and attending the metropolitan treatment centre was reported to, in some situations, lead to a consideration of a choice between the property and treatment. As one participant summed up, the choice would be for the farm even if this meant having to stop treatment. They are little issues but they all add up to big issues. Yes, that is a big thing (owning the farm) because if we had a mortgage that would have changed everything. We would have ended up selling the farm or stopping treatment, one of the two. And what I think I would have stopped treatment rather than sell the farm because we are keeping it for our (family member) and you can’t buy land anymore and they can do what they want with it when we are gone. I am saying financially if I had to choose I would choose my home and stop treatment.
Discussion The international literature indicates that lengthy travel to specialist care is not only a psychosocial stress for patients with cancer but can also be a barrier to accessing and completing treatment.5,8 Described by Baird and associates8 as ‘distance decay’, there is evidence that for rural patients increasing distance to specialist hospitals can translate into reduced admission rates to specialist hospitals. The findings presented in this paper indicate that lengthy travel is only one of the factors that impact the process of relocation for specialist care for rural farmers and property owners. In addition to issues of distance, there is the lack of opportunity to take absence from the property because of the inescapable pressure of daily farm and property responsibilities and the high cost of, or lack of opportunity to, outsource daily maintenance. The findings indicate that the cost of relocation for specialist care can be another financial burden at a time when rural farmers and property owners are economically stressed by drought conditions. Raphael and associates’9 research confirm the concerns of drought by demonstrating not only that the worry about drought is widespread but also that rural families are making some level of change to the way they live because of the perceived risk of continuing drought. Drought is © 2015 National Rural Health Alliance Inc.
recorded as a disproportionate and general stressor that has the potential to erode the social and economic bases on which farming community depend.10 As Alston11 reports, the severe and widespread drought in Australia has exacerbated rural poverty and had a direct impact on the health and well-being of those living in rural areas. It is a concern that Australian male farmers have been identified as a group with an elevated risk of suicide.12 Relocation for specialist care involves a wide range of indirect and out-of-pocket costs13–15 that can be a burden for the patient and their family and exacerbate an already difficult financial situation for rural farmers and property owners. Patients with haematology often undertake lengthy and multiple inpatient treatments and most conditions require ongoing maintenance therapy or routine follow-up.1,16 Consequently, the demands of treatment can require lengthy periods away from home and continuous routine return trips for follow-up.17 The findings indicate that rural farmers and property owners can have serious problems sustaining the travel and time away required. Some will have family support, but for others the requirements of property maintenance can result in patients having to deal with the challenge of treatment alone. For many, the high demands of ongoing routine follow-up can be particularly problematic. The findings indicate that, for some, the hardships associated with relocation can ultimately translate into a question of choice between property and treatment. In recent years there has been considerable progress with regard to overcoming the distance barrier for rural and remote patients with cancer through innovative clinical models using technology and telemedicine.18,19 However, the engagement with technology-assisted patient consultation and telemedicine is only in the early stages of development in relation to patients with haematology in Queensland.7 The present findings indicate that from the perspective of rural farmers and property owners there are important reasons why the use of innovative strategies should be fostered and expanded.
Conclusion This is an exciting time in the development of oncology clinical services where alternatives to patient travel are being explored and found feasible.7,19 The findings presented in this paper indicate that there are specific stresses associated with relocation for specialist care for rural farmers and property owners diagnosed with a haematological malignancy. The hope and expectation of the article is that consideration of these stresses will be incorporated into future planning for the development of haematology clinical service provision.
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Acknowledgements The author would like to thank Mr Bill Petch, CEO, Leukaemia Foundation of Queensland (LFQ); Mrs Barbara Hartigan, Director of LFQ Support Services; Ms Maryanne Skarparis, Support Services Coordinator LFQ; Ms Kathryn Huntley, Support Services Coordinator LFQ; and Ms Nicole Rawson for their contribution to the study. The study was funded by Leukaemia Foundation of Queensland.
References 1 National Institute for Clinical Excellence. Guidance on Cancer Services, Improving Outcomes in Haematological Cancers: The Manual. London: National Institute of Clinical Excellence, 2005. 2 De la Morena M, Gatti R. A history of bone marrow transplantation. Immunology and Allergy Clinics of North America 2010; 30: 1–15. 3 Nicholson L, Sheldon-Collins G, Sih K. Bone marrow transplantation at the Royal Hobart Hospital. Australian Nursing Journal 2009; 16: 49. 4 McGrath P. Returning home after specialist treatment for haematological malignancies: an Australian study. Family & Community Health 2001; 24: 36–48. 5 Payne S, Jarrett N, Jeffs D. The impact of travel on cancer patients’ experiences of treatment: a literature review. European Journal of Cancer Care 2000; 9: 197–203. 6 McGrath P. Relocation for specialists treatment: the New Zealand experience. In: Baker J, Walters R, eds. New Zealand and Australia in Focus. New York: Nova Science Publishers, Inc, 2012; 89–102. 7 McGrath P. Technology-based patient consultations: research findings from haematology patients in regional, rural and remote Queensland. The Patient 2014 doi: 10.1007/s40271-014-0074-z. [Epub ahead of print]. 8 Baird G, Flynn R, Baxter G, Donnelly M, Lawrence J. Travel time and cancer care: an example of the inverse care law? Rural and Remote Health 2008; 8: 1003–1013.
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9 Raphael B, Taylor M, Stevens G, Barr M, Gorringe M, Agho K. Factors associated with population risk perceptions of continuing drought in Australia. Australian Journal of Rural Health 2009; 17: 330–337. 10 Berry H, Hogan A, Owen J, Rickwood D, Fragar L. Climate change and farmers’ mental health: risks and responses. Asia-Pacific Journal of Public Health 2011; 23 ( Suppl 2): 119s–132s. 11 Alston M. Globalisation, rural restructuring and health service delivery in Australia: policy failure and the role of social work? Health and Social Care in the Community 2007; 15: 195–202. 12 Judd F, Jackson H, Fraser C, Murray G, Robins G, Komiti A. Understanding suicide in Australian farmers. Social Psychiatry and Psychiatric Epidemiology 2006; 41: 1–10. 13 Kim P. Cost of cancer care: the patient perspective. Journal of Clinical Oncology 2007; 25: 228–232. 14 Mathews M, Buehler S, West R. Perceptions of health care providers concerning patient and health care provider strategies to limit out-of-pocket costs for cancer care. Current Oncology 2009; 16: 3–8. 15 McGrath P. ‘It’s horrendous – but really, what can you do?’ Preliminary findings on the financial impact of relocation for specialist treatment. Australian Health Review 2001; 23: 94–103. 16 Paul C, Hall A, Carey M, Cameron E, Clinton-McHarg T. Access to care and impacts of cancer on daily life: do they differ for metropolitan versus regional haematological cancer survivors? Journal of Rural Health 2013; 29: s43– s50. 17 McGrath P. Accommodation for patients and carers during relocation for treatment for leukaemia: a descriptive profile. Supportive Care in Cancer 1999; 7: 6–10. 18 George M, Ngo P, Prawira A. Rural oncology: overcoming the tyranny of distance for improved cancer care. Journal of Oncology Practice 2014; 10: e146–e149. 19 Sabesan S, Roberts L, Aiken P, Joshi A, Larkins S. Timely access to specialist medical oncology services closer to home for rural patients: experience from the Townsville Teleoncology Model. Australian Journal of Rural Health 2014; 22: 156–159.
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