Abstract copyright UK Data Service and data collection copyright owner.

In its focus on older peoples’ understandings of technologies used in end of life care, this study has developed new methodologies for social science in a demanding and ethically sensitive field. Pictures, story boards and media extracts were used during interviews and focus groups and the research team was assisted by an advisory group which included participants. Over seventy older people from three age cohorts (65-74, 75-84, 85 years and over) and from three contrasting areas of Sheffield, took part. Key messages are for the need to ensure that life prolonging and basic care technologies are provided in ways that respect a variety of understandings about love, comfort, obligation and burden during dying. The study highlights: the role that older people have in caring for the dying and their needs for support and training; information needs about issues of ethics, clinical practice and advance care planning; and the willingness of older research participants to discuss these matters and to enjoy the process of so doing. Developing a programme of public education and information was identified as an issue which should be addressed urgently if older people and their family carers are to be better equipped to make informed choices about these aspects of care. The study draws together issues previously considered under the largely separate remits of palliative care and gerontology. It is being used to provide advice on palliative and end of life care, especially to nursing and medical practitioners and to voluntary sector organisations as they begin to assess the need for action in this field.

Main Topics:

The study contains: qualitative interviews; focus group transcripts; associated fieldnotes; additional material, consent and information sheets; vignettes used in the interviews; slides used during focus groups. The data cover: different ways of administering drugs and medical technology, such as syringe drivers, Fentanyl patches, tablets, sedation; medical treatment such as defibrillation, cardio-pulmonary resuscitation, artificial ventilation/feeding; and topics covering clinical death; quality of life, natural death. The vignettes used cover Alzheimer's disease and lung cancer.

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Face-to-face interview

Focus group