Early diagnosis, contemporary combination therapy and refined customised treatment options have now resulted in a high prevalence of cancer survivors in most industrialised countries (Coleman et al., 2008; Berrino et al., 2007; Verdecchia et al., 2007). Cancer survivorship poses a challenge to patients and their families and also to health-care systems (Gilbert et al., 2008), as a consequence the UK National Cancer Survivorship Initiative (NCSI) was launched in 2010 (Richards et al., 2011) recognising that poor attention had been given to the long-term consequences of a cancer diagnosis. Supporting and enabling individuals to return to active lives following the completion of initial cancer treatment is a key commitment of the Cancer Reform Strategy (Department of Health, 2007, 2011). A further group of patients diagnosed with cancer, but with advanced disease and at a palliative stage, are also recognised as needing support to live active and fulfilling lives (Minosso et al., 2016; Barawid et al., 2015; Hindmarch, 2014; ).
Diagnosis and treatment for cancer may have substantial effects on patients’ physical, psychological, social and existential well-being, and general quality of life and can lead to loss of independence (Barawid et al., 2015) and self-confidence (Foster and Fenlon, 2011). The ability to maintain as much independence and function as possible is a significant part of quality of life (Barawid et al., 2015). In order to assure patients and their families continuing quality of life in all these domains, respite and rehabilitation should be an integral and continuous part of cancer care. Central to the delivery of respite care and rehabilitation is a commitment to enable people to live and function well within their capabilities (Minosso et al., 2016; Eyigor, 2010; Silver et al 2015; Hellbom et al., 2011). Implementation of respite and rehabilitation represents a change in the focus of care from ‘looking after’ to ‘enabling’ people (Ingleton et al., 2003).
There is a growing body of research that has examined the benefits of physical activity and exercise for people who have been diagnosed with cancer, going through treatments, recovering after treatments, or coping with advanced disease (ACS, 2014; van den Dungen et al., 2014). Physical exercise is integral to rehabilitation approaches and has been found to be useful in improving the quality of life by palliating function, mobility, activities of daily living, pain relief, endurance, and the psyche of a patient while helping to maintain as much independence as possible; leading to a decrease in burden on caregivers and family enabling and people with life-limiting and terminal conditions to live as independently and fully as possible (Barawid et al., 2015; Malcolm et al., 2014). Physical activity has been found to improve symptoms of fatigue, pain and depression and keeping active is identified with maintaining self-esteem (Barawid et al., 2015) notably when linked to 'having fun' (Miller, et al, 2008). Rehabilitative palliative care has potential to reduce disability and dependence, both on families and on health and social care services and it is now as likely for patients with cancer, at any stage, to be told by health care practitioners to be physically active rather than rest while undergoing treatment (Campbell et al, 2011). Physical exercise has also been shown to engender a sense of hope which is essential in enhancing quality of life, as it plays an integral role in psychosocial well-being (Belchamber et al., 2013).
What is less well understood is how an extended period of physical activity or a respite sporting trip impact upon quality of life for a person who has the diagnosis of cancer and also their families. Whilst anecdotal feedback indicates that respite sporting trips can have a transformative impact on the wellbeing of cancer patients and their families little research has been done to identify the key factors which promote such positive experiences. This PhD opportunity at the University of Brighton will allow a research student to undertake collaborative research with the 4 Cancer Group in order to determine the perceived barriers to and benefits obtained from accessing such trips.
Research aims and approaches
The research aims to surface deep issues relating to respite sporting activity and the impact of this on improving quality of life for people with cancer. It will ensure all the voices of those involved are heard. It will cut through taken for granted assumptions and will be better used to define the health benefits for patients and families and will provide tangible evidence to augment ongoing provision of respite sporting opportunities. A further output of the PhD will be to build a methodological framework in which subsequent research can be conducted.
The research will involve collecting data from people who are participating in the 4 Cancer Group’s sporting and leisure respite events to help inform philosophically gained insights into the impact that these experiences have on the wellbeing of a family who have been affected by a diagnosis of cancer.
Data are likely to be collected through focus groups, interviews and participant observation to situate the researcher alongside the life world of those who are studied. In addition a systematic literature review will be undertaken to assess the knowledge base about the impact of respite sport on wellbeing.
Prof Kate Galvin is the lead supervisor and will utilise her strong methodological and research experience working with vulnerable participants. She has experience of researching sensitive situations, including co-constructing research design that is both written for and about patients and families who have experienced a diagnosis of cancer.
Dr Kay de Vries brings to the supervisory team expertise in all qualitative research methods examining ways in which heath care services might be made more caring and also in researching and supporting researchers involved in palliative and cancer research. Both supervisors have a strong track record of working with doctoral students from many countries who have worked with patients experiencing the diagnosis of cancer.