Exploring the lived experiences of people with learning disabilities who are dying of cancer

Tuffrey-Wijne, Irene PhD, RN
Bernal, Jane MB, ShB, MRCPsych
Hubert, Jane MA, DipAnth
Butler, Gary
Hollins, Sheila MBBS, FRCPsych, FRCPCH, FRCP

Irene Tuffrey-Wijne, PhD, RN, is senior research fellow, St George's, University of London; Jane Bernal, MB, ShB, MRCPsych, is consultant in developmental neuropsychiatry, Cornwall Partnership Trust; Jane Hubert, MA, DipAnth, is senior research fellow; Gary Butler is training and research adviser; Sheila Hollins, MBBS, FRCPsych, FRCPCH, FRCP, is professor of psychiatry of learning disability; all at St George's, University of London.

This study was funded by a grant from Cancer Research UK

Nursing Times 106(19):p 15-18, May 18, 2010.

ABSTRACT

Little is known about the additional needs of people with learning disabilities who have cancer. This observational study aimed to address this knowledge gap

Tuffrey-Wijne I et al (2010) Exploring the lived experiences of people with learning disabilities who are dying of cancer.Nursing Times;106:19, 15–18.

Background

Growing numbers of people with learning disabilities are living longer and dying of age related illnesses such as cancer.

Aim

To explore the experiences of people with learning disabilities who have cancer.

Method

The study used participant observation with 13 people with learning disabilities. All had a cancer diagnosis and 10 were terminally ill. Participants were visited regularly at home and in other settings, including hospitals.

Results

The main themes were: dependent lives; deprived lives; truth telling and understanding; the importance of families; inexperienced carers and unprepared services; and resilience.

Conclusion

To understand the experiences of people with learning disabilities who are dying of cancer, it is important to understand their previous life experiences and key relationships. Healthcare professionals who treat people with respect, dignity and openness can make a positive difference to their care.