People with intellectual disabilities are increasingly being diagnosed with cancer due, in part, to increases in life expectancy for this population. Despite the growing number of people with cancer and intellectual disabilities, the cancer-related experiences of people with intellectual disabilities are under-researched. Person-centred approaches to research are needed to better understand the needs and psychosocial outcomes of people with cancer and intellectual disabilities. This thesis aims to better understand the cancer-related experiences of people with intellectual disabilities, and the impact on the people who support them. The thesis comprises four related studies: (1) a systematic review of psychosocial experiences of cancer in people with intellectual disabilities; (2) a qualitative study of cancer experiences in people with intellectual disabilities using thematic analysis informed by grounded theory; (3) a survey of UK oncology nurses' attitudes and care perceptions towards people with intellectual disabilities; and (4) a feasibility study of an intervention to improve healthcare professionals' perceptions of communicating with people with cancer and intellectual disabilities. Five themes emerged from the ten papers included in the systematic review: delayed diagnosis; information, communication, and understanding; negative psychological consequences; negative physical consequences; and social support. Six of the ten papers included data from the same ethnographic study of 13 people, highlighting a paucity of empirical research regarding the psychosocial cancer experiences of people with intellectual disabilities. The qualitative study indicated that people with intellectual disabilities were often excluded from conversations about their diagnosis, treatment, and ongoing care, and expressed confusion and anxiety about their cancer. Attempts to protect them from distress inhibited communication, but where additional support was offered, participants engaged more meaningfully in their experience and this should, therefore, be encouraged. In the qualitative study, oncology nurses were reported to be important figures in the care of patients with intellectual disabilities. The survey of oncology nurses highlighted that caring for cancer patients with intellectual disabilities may intensify their already difficult role; however, previous experience may ameliorate negative consequences. This sample identified their need for training about communicating with people with intellectual disabilities. The first three studies informed the development of a novel, brief, online, video-based intervention for healthcare professionals working with people with intellectual disabilities and cancer. The feasibility trial of this intervention indicated that there were problems with recruitment, high attrition, and intervention adherence. These problems were, most likely due to participants finding the content and delivery method to be unacceptable. It is clear that the intervention is not feasible in its current format, and that further theoretical and modelling work is needed before the intervention is feasibility tested again ahead of a definitive trial. This body of work has demonstrated that people with intellectual disabilities and cancer face multiple barriers to accessing cancer care, including informative and understandable communication with healthcare professionals. With appropriate support, psychological and physical outcomes can be improved for people with intellectual disabilities and cancer, but caring for people with cancer and intellectual disabilities can be challenging for paid and informal carers, and oncology staff. Difficulties with communication are bi-directional, and improving communication might be an appropriate first step to improving cancer experiences for this population, but developing effective interventions presents numerous feasibility challenges.

Abstrakt  Bakgrund: Globalt rapporteras 19 miljoner fall årligen av cancer varav 400 000 fall av dem är barn. Dessa fall påverkar inte bara barnen själva utan även familjerna. De ställs inför en svår och utmanande situation. De vanligaste cancerformerna hos barn är leukemi, lymfom och tumör.  Syfte: Syftet med studien var att beskriva föräldrars erfarenheter av att leva med ett cancersjukt barn. Metod: Kvalitativ litteraturstudie baserad på åtta empiriska studier. Sökning av artiklar gjordes i Pubmed, Cinahl och APA PsycINFO. Studierna kvalitetsgranskades och analyserades med hjälp av Fribergs modell. Resultat: I resultatet kom det fram två huvudkategorier och sex subkategorier, ”Ett annorlunda liv” och ”Utveckla hanteringsstrategier”. Konklusion: Att leva med barn som drabbats av cancer påverkade föräldrarna på flera olika sätt; psykiskt, depression, ångest och stress påvisades. Lyfta fram föräldrars erfarenheter skapar förståelse och ger kunskap till sjuksköterskan över hur de kan stötta familjer i svåra situationer. Författarna ville med studien ge uppmärksamhet till hur det är att vara förälder till en sjuk patient. / Abstract Background: Globally 19 million cases of cancer are reported annually, of which 400,000 cases are children. These cases affect not only the children themselves but also families. They are faced with difficult and challenging situation. The most common cancers among children is leukemia, lymphoma and tumor. Aim: The aim of this study was to describe parents' experiences of living with a child with cancer. Methods: Qualitative literature study based on eight empirical studies. Search for articles was done in Pubmed, Cinahl and APA PsycINFO. The studies were quality reviewed and analyzed using Friberg's model. Results: The result was two main categories and six subcategories ”A different life” och ”Develop management strategies to a higher power”. Conclusion: Living with children affected by cancer affected parents' in several different ways; mental, depression, anxiety and stress were demonstrated. Highlighting parents' experiences creates understanding and provides knowledge to the nurse about how they can support families in difficult situations. This study the authors wanted to draw attention to what it is like to be parent to a sick patient.