Maintaining dignity in later life: a longitudinal qualitative study of older people's experiences of supportive care
Later life is a time of significant change and challenge. The increased likelihood of bereavement and problems with health and mobility bring death into sharp focus and can pose a threat to older people's autonomy and sense of dignity. The aim of this research is to examine how older people with supportive care needs experience this stage of the life-course, what preparations they make for the end of life and what supports or undermines their sense of dignity. Dignity has become an important principle in the development of services. We understand dignity as encompassing respect, recognition, autonomy, independence and identity. The research will examine how changing circumstances, including increased dependency on others affects participants’ sense of dignity.
As people live longer it is more likely that they will experience a period of poor health prior to death and will need support and help from families and from health and social care services.
These circumstances challenge older people’s autonomy and sense of dignity. Those who provide help and support play a crucial role in maintaining older people’s sense of dignity.
There is a need to understand more about older people’s perspectives on dignity and how these are affected by changes in their circumstances.
This research combines the disciplinary backgrounds of the research team, which cover gerontology social policy, sociology, primary health care and social work.
Our approach is open and exploratory. Through our GP partners we will establish a group of 40 participants aged 75+ and who need help or support from families or from health and care services to enable them to remain living in the community.
Between March 2008 and July 2010 we aim to meet each participant in person on three occasions (at annual intervals) and by telephone every two months.
This extended period of contact will enable us to see more clearly how people’s views on dignity are affected by their changing circumstances. It will also enable the participants to get to know and trust the researchers so that they are able to share how they feel when they are being given help.
Supporters All participants will be invited to nominate a trusted friend or relative to act as their Supporter throughout the study. The contribution of supporters will be important in providing reassurance to participants and facilitating data-gathering.
The interviews: Areas that we will explore with our research participants:
Their everyday lives and routines, the kinds of things they enjoy doing and how changes in their health have affected their everyday lives.
The kind of help and support they receive. What arrangements have been made to provide them with help? Who was involved in making these arrangements and how were decisions made about the kind of help needed? How do they feel about this?
How they see the future, what plans they have made. For example, are they thinking about making changes, to their living arrangements? Have they thought about decisions concerning future medical treatment?
Analysis of data
We will use Framework to analyse the data, because of its capacity to deal with longitudinal data as well as to enable us to identify key themes about dignity across the whole sample.
At all stages of the project we will be advised by an Advisory Panel with members drawn from voluntary organisations and older people’s groups and chaired by Help the Aged UK.
The DH End of Life Initiative, based on the principles of extending choice, responsiveness and equity with the NHS. This is currently under development but some initiatives such as the Preferred Place of Care plan are particularly relevant. Awareness is rising of age- and diagnosis-related inequities in access to services and lack of choice over place of death. Currently, the Department of Health is conducting a review of end of life care within SHAs, with an End of life Care Strategy expected in June 2008.
The Department of Health Dignity in Care Campaign, launched in November 2006, which aims ‘to eliminate tolerance of indignity in health and social care services through raising awareness and inspiring people to take action’ (www.dh.gov.uk/en/Policyandguidance/SocialCare/Socialcarereform/Dignityincare).
Long-term care for older people, which evidence suggests is increasingly focused on older people with complex health needs such as exaperienced by research participants in this project. Currently this area of policy is undergoing further change with the implementation of more personalised adult care services.
These currently high levels of activity, together with the longitudinal nature of our project make it difficult to specificy a policy/practice target. However, because the scale of change and the resource implications are so significant we expect that these policy and service developments will be ongoing throughout the duration of the project and beyond. The research will
Contribute to a better understanding of dignity. Within policy debates perceptions of dignity in relation to the end of life are highly contentious and the term is utilised by various, sometimes opposing ‘camps’ of people in relation to euthanasia or physician-assisted deaths (dignity in dying groups, Care not Killing Alliance etc). It is important that within these broad-ranging ethical and political debates the voices of older people who are facing the end of life at a near but uncertain time are heard.
Raise awareness amongst policy-makers and practitioners of the links between these areas of practice through reporting first-hand accounts from older people that will bring issues to life and provide data about the need for integrated approaches that might otherwise be missing
Highlight the experiences of older people who are ‘living with’ as well as ‘dying from’ health problems. Through its focus on gathering the experiences and perceptions of older people over a period of time we aim to capture a view of the dynamic nature of older people’s perceptions as they go through a period of significant change in their life course. This being the case, the ‘end of life’ is not understood as a short period of time prior to death but a more indeterminate and subjectively understood period of time.