Recent state-wide qualitative research examined the psychosocial and financial impact of relocation for specialist treatment on patients diagnosed with a haematological malignancy residing in Queensland. The study, funded by Leukaemia Foundation of Queensland and conducted by Associate Professor Pam McGrath, Griffith University, was based on in-depth interviews with a purposive sample of patients representing a diversity of haematological diagnostic groups, localities, age and gender, selected from the Leukaemia Foundation of Queensland client database.
The findings document the emotional vulnerability of patients who are experiencing the shock of diagnosis or relapse and are forced to leave the comfort of home to travel, often long distances, to a metropolitan treating centre. During treatment the distance is not only a barrier to returning home, but can prevent family from visiting the hospital.
The major financial impacts of relocation were also detailed, including out of pocket costs, the high cost of parking, for many the loss of work income from disruption caused by the disease, travel to treatment, and for some, reliance on credit cards or informal financial assistance. For those who are forced to leave work and/or do not have the buffer of savings, long-service leave, sufficient superannuation, home ownership, or assets to sell, there can be a spiral into poverty. There were special problems documented for farm and cattle property owners who, because of the inescapable responsibilities of running the farm or property, found it difficult to leave. The lack of finances to outsource daily maintenance, especially in times of drought, compounds the problem. Knowledge of, and access to formal financial assistance was explored in the study.
Leukaemia Foundation of Queensland’s free accommodation was not only valued because it helped reduce the financial hardship caused by relocation, but also because of the welcoming atmosphere, the sense of security, the cleanliness and the closeness to the treating hospital. The purpose-built accommodation was appreciated for its food preparation and washing facilities the opportunity for family and friends to stay, entertainment technology available in the units, the closeness to public transport, and the availability of parking spaces.
Some of the patients living within the 50km radius of specialist treating hospitals not presently provided with government travel and accommodation assistance, were also shown to share many of the financial and physical hardships associated with extensive travel to and from hospital, especially those living on the islands at the periphery of the metropolitan area.
Importantly, the study explored the use of technology-based patient consultations as a new direction in patient care that can provide solutions to the challenges associated with relocation for regional, rural and remote patients. Although still in its infancy, initial indications show that haematology patients are keen to embrace the assistance of technology in order to reduce the distress of travel and disconnection with home life. Other trends towards the decentralisation of treatment, which include specialist outreach and capacity building for clinical care in regional centres, were greatly appreciated as means to overcome the profound difficulties associated with travelling to the metropolitan hospitals for specialist treatment.
To obtain peer-reviewed publications detailing the findings from the study please contact the investigator at: firstname.lastname@example.org.