Living with Learning Disabilities, Dying with Cancer

Thirteen Personal Stories

Irene Tuffrey-Wijne
Foreword by Sheila Hollins

ISBN: 978-1-84905-027-2, BIC 2: JKSN2

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This book is a powerful and moving account of the experiences of 13 people with learning disabilities who were living with cancer. The author followed their lives as part of a 3-year research study, during which 10 people died. She spent extensive periods of time with them at their homes and day centres, in hospitals, hospices and nursing homes. In doing so, she gained a unique understanding of what it is like for individuals with learning disabilities to live with deteriorating health and how this may impact upon their families, friends and carers. How was each person's cancer diagnosed? How was their cancer and its implications explained to them? How much did they understand and how did they cope with treatment? What happened when they were dying? In answering these questions, the book exposes the suffering of people with learning disabilities at the end of their lives, but also their remarkable resilience and strength. In an optimistic final chapter, the author demonstrates how people with learning disabilities can best be supported at the end of life

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HIQA - Key Performance Indicators & Healthcare Quality

Guidance on Developing Key Performance Indicators and Minimum Data Sets to Monitor Healthcare Quality -
Published September 2010

RNID Experiences of Managerial Support - Featured Research Article

A phenomenological exploration of intellectual disability: nurse's experiences of managerial support

GERALDINE GALVIN MSc, BNS, RNID1,

FIONA TIMMINS PhD, MSc, MA, BSc, BNS, FFNRCSI, NFESC, RNT, RGN2

Journal of Nursing Management

Volume 18, Issue 6, pages 726–735, September 2010

Aim  The present study aimed to explore Registered Nurse Intellectual Disabilities (RNIDs) experiences of managerial support.

Background  The current work environment for RNIDs is undergoing immense change. These changes include the introduction of social care leaders and care staff to care for people with an intellectual disability (ID) and community-based approaches to care. This has led to ambiguity and marginalization for RNIDs thus requiring them to re-establish their role boundaries. Support is thus required, through this change process, with managers required to lead and support RNIDs through this process.

Methods  A Heideggerian constructivist phenomenological approach was used.

Findings  Four overarching themes emerged from the data: The Professional Role of the Clinical Nurse Manager (CNM), Leadership Role of the CNM, Personal Supports and the Effects of CNM support.

Conclusion  The themes found in this research study correlate with findings of other research studies on nurses’ experiences of managerial support in various nurse settings.

Implications for nursing management  The findings of this research study will illuminate and create an understanding for nurses, nurse managers and ID services of what managerial supports are to this specific group of RNIDs working in this service for people with an ID.

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