A PhD scholarship is available to investigate how patients with an intellectual disability experience the journey of living with and beyond cancer. This is an important area of inquiry and it has the potential to improve the quality of lives of people with intellectual disabilities who also have a diagnosis of cancer. Currently, very little is known about what support people with an intellectual disability need to help them cope with a cancer diagnosis and ongoing treatments. There are as yet no clinical practice guidelines in respect of this group and cancer treatment.
A key objective of this research project is to capture sufficient evidence about the support needs of people with Intellectual Disabilities, and their carers/advocates, their experience of the cancer journey, and current practice and service provision. It is envisaged that clinical practice guidelines for the cancer workforce will be developed to support this vulnerable group, enabling access to responsive, high quality care across a range of mainstream services.
This PhD is an opportunity to work with leaders in the fields of research with people with disabilities and health services. It is interdisciplinary and likely to suit people with health or social care backgrounds, a commitment to the equal rights of people with disability and an interest in working with patients with an Intellectual Disability.
This important area of inquiry has the potential to enhance the quality of lives of people with intellectual disabilities living with and beyond cancer. The health inequalities faced by this group are well documented(1); they are likely to experience poorer health compared to the general population, have a shorter life expectancy and higher proportion of avoidable deaths. In Australia and the UK, it is estimated that between 1-3% of the population have intellectual disabilities, equating to approximately 1.5 million people across all age groups in the UK(2).
Incidence of cancer in the population of people with intellectual disabilities has been low(3, 4). Rates are increasing as life expectancy approaches that of the general population and improved health care makes diagnosis more likely(5). Yet, the prognosis of patients diagnosed with cancer who have intellectual disability is worse than the general population(6). A developing body of evidence is exploring barriers to accessing cancer screening services; a range of initiatives have been developed to enhance access to screening(7). Another strand within emerging evidence are strategies to improve access to palliative and end-of-life care(8).
Evidence about adjustments to practice and procedures around cancer diagnosis and treatment needed to support patients with intellectual disabilities are scant. No clinical practice guidelines exist in respect of this group and cancer treatment. A small qualitative study by Flynn et al (2016)(9) provides some evidence of the problems with current practices; people with intellectual disabilities were often excluded from conversations about their care and treatment. Cancer survivorship is challenging for the general adult population; patients experience wide ranging challenges with physical/emotional wellbeing, finances, and relationships(10). Little is known about how people with intellectual disabilities experience survivorship, which is likely to be more complex due to difficulties in understanding treatment processes, and the involvement of multiple agencies. Key policy drivers in the UK and Australia highlight the importance of ensuring that patients with an intellectual disability are able to access responsive, high quality care across a range of mainstream services(11, 12).
It is against this backdrop that the PhD would make a novel and positive contribution to the health outcomes of people with an intellectual disability living with and beyond cancer. The project aims to explore how patients with intellectual disabilities experience the journey of living with and beyond cancer in different contexts.
Objectives are to:
· Investigate how patients with intellectual disabilities are supported to make decisions about their cancer treatment/management and be involved as partners within their care.
· Examine the psychosocial and emotional impact of living with and beyond cancer for a patient with intellectual disabilities.
· Explore interventions to enhance communication and collaboration between patients with intellectual disabilities, caregivers/advocates and health and social care professionals within the context of ongoing cancer treatment and support.
· Identify interventions to support patients with intellectual disabilities to cope with the emotional and psychosocial impact of living with and beyond cancer.
The PhD will be informed by a systematic review of the literature that will be completed before the PhD scholarship starts. The outcomes of the systematic review will provide a focus for the areas of identified need for this patient community. A patient and public advisory group will be convened from existing patient advocacy groups, as the voice of individuals with an Intellectual Disability will be central to the PhD study. Within each institution there are established links with clinical services, and national and local intellectual disability advocacy groups. Members of the patient advocacy group will form the patient and carer element of a participatory co-design study. Using the MRC framework for complex interventions(13) co-design stakeholder workshops will form a critical element of the development phase of the MRC framework for this project.
The supervisory team has a strong track record in research on cancer management, the patient experience, and the social inclusion of adults with intellectual disability; as well as experience of using co-design and the MRC framework for complex interventions. Our joint university expertise will be harnessed to ensure that the proposed PhD puts the service user with intellectual disability centre stage, capturing their experiences of living with and beyond cancer.
The student will be based in Sheffield, and most field work conducted in health services with whom Sheffield-based supervisors have existing collaborations. The student will be encouraged to view the research problem beyond the boundaries of the UK service lens to develop a set of principles that could be incorporated into practice across geographical health service boundaries. The student will spend at least six months during candidature at LTU, hosted by the Living with Disability Research Centre. During this time, they will conduct field work with survivors of cancer drawing on LTU’s connections with self-advocacy and social care networks.