Carer positioning in supporting someone living with cancer and dementia: a narrative approach

Background Evidence suggest that for people living with cancer and dementia the exploration of memory loss is superficially based upon patient or carer disclosure. Patients tend to underplay the importance and extent of memory problems in cancer consultations and staff found assessment challenging, avoiding exploring memory without an obvious therapeutic gain. Compared to cancer patients without dementia, people treated for cancer with pre-existing dementia are diagnosed at a later or unknown stage, receiving less treatment with more treatment complications and poorer survival. This highlights the challenge for carers in advocating and negotiating treatment choices with their relative. Aim: To examine the challenges of informal carers supporting someone with cancer and dementia within the United Kingdom Methods: In depth interviews were conducted with 7 informal carers using a narrative approach to examine the construction of their experiences. Recruitment took place at a Psycho-oncology unit at a tertiary cancer centre in the north west of England between July 2014-March 2015. Two participants were recruited external to the NHS through snowballing techniques. Both NHS and University ethical approval was obtained. Results: The findings demonstrate how informal carers navigate a path through complex cancer treatments and support their relative. A cancer diagnosis often requires multiple treatment visits to an oncology centre and this can be challenging for carers. They find that they need to co-ordinate and manage both health professionals and their care recipient(s) in terms of getting access to appropriate services and support. This process can be particularly challenging in the presence of a cognitive impairment that often demands effective communication with different agencies. Carers frequently experienced multiple challenges include dealing with the stigma that is characteristic of the dementia experience and the added complexity of negotiating this within a cancer care context. Issues of decision-making, best interests and quality of life were also of central concern for carers. Conclusions: Carers within this particular context face complex challenges that are not necessarily obvious and appear under reported. Their role is often rendered invisible by the nature of the care recipients’ condition. We suggest health professionals need to respond to and support carers in different ways that do not stigmatise and hence discriminate against them

A narrative literature review examining cancer treatment issues for patients living with intellectual disabilities.

Purpose: The experiences of cancer care can be mediated by many different factors and this narrative literature review aims to explore the experiences of cancer care in relation to people with intellectual disabilities receiving cancer treatment. Method: We undertook a search for articles in English from (Jan) 2000–(Feb) 2018 using Medline, CINAHL, ScienceDirect, ASSIA and Wiley. The inclusion criteria are 2000-2018, English language and focussing on experiences of cancer journey. We used a narrative approach and thematic analysed the data. Results: There were 10 papers that met our inclusion/exclusion criteria. The themes generated included communication issues, information giving and decision-making. The literature suggests that communication and decision-making within cancer care are often mediated through support workers or family carers with minimal involvement of the person with intellectual disabilities. Information-giving by health professionals and support workers to people with intellectual disabilities was limited. This was often justified by the perceived distress this may cause. Conclusion: Training for health professionals and support workers in supporting people with intellectual difficulties is required for more effective communication in cancer care

Providing holistic end-of-life care for people with a history of problem substance use: a mixed methods cohort study of interdisciplinary service provision and integrated care

Harmful use of illicit drugs and/or alcohol is linked to life-limiting illness and complex health and social care needs, but people who use substances and have complex needs do not receive timely palliative care and fail to achieve quality standards for a good death. They and their families often require support from multiple health and social care services which are shown to be poorly integrated and fail to deliver interdisciplinary care. This study aimed to identify the existing barriers and facilitators within and between services in providing this population with a good death. Using a mixed methods approach of survey, focus groups and semi-structured interviews, we explored the perspectives of practitioner and management staff across a range of health and social disciplines and organisations in one combined authority in a large city in the north west of England. Our findings indicate that practitioners want to provide better care for this client group, but face structural, organisational and professional boundary barriers to delivering integrated and shared care. Differences in philosophy of care, piecemeal commissioning and funding of services, and regulatory frameworks for different services, lead to poor and inequitable access to health and social care services. Ways forward for improving care are suggested as bespoke hostel-based accommodation for palliative care for this client group, and specialist link workers who can transcend professional and organisational boundaries to support co-ordination of services and support. We conclude that it is no longer adequate to call for more training, better communication and improved joint working. Complex care at the end of life requires creative and cohesive systemic responses that enable multi-disciplinary practitioners to provide the care they wish to give and enables individuals using substances to get the respect and quality service they deserve