Communication

The NHS Plan, Department of Health (2000) made a commitment that patients should be able to receive copies of clinicians’ letters about them as a right in order to improve communication and enable patients to participate in their care. In South Gloucestershire, the opinions of local service users with learning disabilities, their carers, and professionals working within learning disability services about this issue were sought using questionnaires and focus groups in order to identify and then develop good practice.

This web-based briefing provides a concise summary of the research and policy literature into the means, benefits and difficulties of involving patients in the planning of discharge to community or intermediate care. It also considers the role of carers in this process, as well as what happens when an older person’s ability to communicate their preferences in these matters is affected by dementia, language difficulties, or an unwillingness or reluctance to express preferences about the provision of care.

INTRODUCTORY NOTE

My wife, Pauline, died from Alzheimer’s disease at the age of 59. She was 51 when diagnosed after several years of problems. I cared for her at home. For the first 3 years, I maintained my employment, albeit on an increasingly part-time basis, but resigned from work and cared for her full-time for 5 years when her needs demanded round-the-clock attention. She remained in her own home to within 5 weeks of her death, when fracturing my leg put paid to my direct caring role.

Colin Barnes describes how he sets about offering communication advice to family carers of people with dementia, and the materials he has developed to help carers understand the reasons for common difficulties and strategies for more successful communication

Carers are family members, friends, and neighbours who perform medical tasks and personal care, manage housekeeping and financial affairs, and provide emotional support to people who are ill, disabled, or elderly. From a carer's perspective, the primary requisite for a good doctor is competence. Assuming equal technical skills and knowledge, the difference between ‘good’ and ‘bad’ doctors comes down to attitudes and behaviour-communication. An important aspect of communication is what doctors say to carers, and how they interpret what carers say to them.

There is a continual need to support and assist carers who play a central role in providing informal care for a relative. This approach to care provision must have a strong foundation based on liaison between the family carers, professional carers and the older or disabled person who is the focus of care. Services that enable effective communication using videoconferencing, interactive communication, tailored Web based programs and other specific resources configured for the needs of the individual can help carers carry out their role effectively.

It is widely accepted that cancer is an intersubjective experience that impacts upon the psychological well-being of people with cancer and informal carers, as well as on couple relationships. This qualitative study examined the nature and consequences of cancer on the relationship between informal carers and the person with cancer, from the perspective of Australian cancer carers. Sixty-two carers (42 women and 20 men), across a range of cancer types, stages and relationship dyads took part in semi-structured interviews.

The Parkinson's Disease Society has produced a DVD, Being There, which aims to answer the questions and concerns of people newly diagnosed with the condition. Being There provides an insight into symptoms, treatments and life with Parkinson's in general, and includes interviews with people with Parkinson's, carers, and expert healthcare professionals The DVD is divided into four chapters: introduction to Parkinson's disease; treating Parkinson's; living with Parkinson's; and about the Parkinson's Disease Society.

The aim of this study was to explore by whom, how, and when discussions about prognosis and end-of-life issues should be initiated with terminally ill patients, and the context in which these issues can be optimally discussed. Focus groups and individual interviews were conducted with 19 palliative care (PC) patients, 24 carers, and 22 PC health professionals (HPs). Participants had disparate views regarding by whom and when such discussions should be initiated, although a similar range of perspectives was expressed by all participant groups.