Prof. Sue Read

Title: Professor of Learning Disability Nursing, Research Lead
Phone: 01782 679653
Email:
Location: CEC - SF53
Role: Head of Research
Contacting me: Via email/ telephone call
Read Sue

I have worked in the area of learning disability since 1976. My PhD involved developing a unique, specialist bereavement counselling and support service for people with learning disabilities in North Staffordshire. With a background in learning disability nursing, my professional interests are around bereavement, end of life care, transition and loss, specifically, although not exclusively involving people with a learning disability. I am also interested in issues surrounding the realities of user and carer engagement across the research continuum.  I am currently supervising several PhD students involving topics around preferred place of death; supporting children in acute care medical areas; pain and symptom assessment of renal patients; and intermediate care. I welcome applications around the topic areas of loss, end of life care, bereavement and transition.

My research areas of interest centre on bereavement end of life care, transition and loss using predominantly qualitative research approaches. I have recently completed a collaborative research study with a colleague (Dr Stuart Todd, University of Glamorgan) to explore perceptions of death and dying with people with learning disabilities.  I am currently developing a flexible, computer based, interactive bereavement software tool to support loss and transition for adults and children with a learning disability. I am also collaborating with colleagues, clinicians, parents and families to explore potential research around end of life care for children and young people in Staffordshire in conjunction with a local children’s hospice.

I have received several SHA and Locality Workforce Board grants in recent years, which have enable me to work collaboratively with local clinicians, advocates, parents and people with a learning disability to develop a bespoke Toolkit for people with a learning disability coming into hospital. This project won the West Midlands Health and Social Care award for Partnership working in October 2010.

My publications generally are around bereavement, end of life care, transition and loss and health care, specifically although not exclusively for people with learning disabilities.

Selected Publications

  • Read S, Nte S, Corcoran P, Stephens R. 2013. Using action research to design bereavement software: engaging people with intellectual disabilities for effective development. J Appl Res Intellect Disabil, vol. 26(3), 195-206. link> doi>
  • Lillie AK, Read S, Mallen C, Croft P, McBeth J. 2013. Musculoskeletal pain in older adults at the end-of-life: a systematic search and critical review of the literature with priorities for future research. BMC Palliat Care, vol. 12(1), 27. link> doi>
  • Read S. 2013. Palliative care for people with intellectual disabilities: Pitfalls and potential. PALLIATIVE MEDICINE, vol. 27(1), 3-4. link> doi>
  • Walker S, Read S, Priest H. 2013. Use of reflexivity in a mixed-methods study. Nurse Res, vol. 20(3), 38-43. link> doi>
  • Read S. 2012. Communicating with children and young people: A Toolkit to support end of life care. JOURNAL OF INTELLECTUAL DISABILITY RESEARCH, vol. 56(7-8), 668. link>

Full Publications List show

Books

  • Read. 2006. Palliative care for people with learning disabilities.
  • Read S. Markwick A and Parish A (Eds.). 2003. Bereavement and Loss. Butterworth Heinemann, London.

Journal Articles

  • Read S, Nte S, Corcoran P, Stephens R. 2013. Using action research to design bereavement software: engaging people with intellectual disabilities for effective development. J Appl Res Intellect Disabil, vol. 26(3), 195-206. link> doi>
  • Lillie AK, Read S, Mallen C, Croft P, McBeth J. 2013. Musculoskeletal pain in older adults at the end-of-life: a systematic search and critical review of the literature with priorities for future research. BMC Palliat Care, vol. 12(1), 27. link> doi>
  • Read S. 2013. Palliative care for people with intellectual disabilities: Pitfalls and potential. PALLIATIVE MEDICINE, vol. 27(1), 3-4. link> doi>
  • Walker S, Read S, Priest H. 2013. Use of reflexivity in a mixed-methods study. Nurse Res, vol. 20(3), 38-43. link> doi>
  • Read S. 2012. Communicating with children and young people: A Toolkit to support end of life care. JOURNAL OF INTELLECTUAL DISABILITY RESEARCH, vol. 56(7-8), 668. link>
  • Read S. 2012. Cultivating understanding of health issues: An evaluation of eight workshops for generic healthcare professionals. JOURNAL OF INTELLECTUAL DISABILITY RESEARCH, vol. 56(7-8), 659. link>
  • Read S. 2012. Disenfranchised grief: A parent with an intellectual disability shares her story. JOURNAL OF INTELLECTUAL DISABILITY RESEARCH, vol. 56(7-8), 664. link>
  • Read S. 2012. Toolkits for Better Health: Supporting the health needs of people with intellectual disabilities. JOURNAL OF INTELLECTUAL DISABILITY RESEARCH, vol. 56(7-8), 659. link>
  • Read S and Corcoran P. 2012. Using action research to design bereavement software: Working with people with ID for effective development. JOURNAL OF INTELLECTUAL DISABILITY RESEARCH, vol. 56(7-8), 666. link>
  • Read S and Cartlidge D. 2012. Critical reflections on end-of-life care for people with intellectual disabilities: a single case study approach. Int J Palliat Nurs, vol. 18(1), 23-27. link>
  • Walker S, Read S, Priest H. 2011. Is routinely ascertaining preferred place of death for hospice patients possible or desirable?. J Palliat Med, vol. 14(11), 1196. doi>
  • Walker S and Read S. 2011. Accessing vulnerable research populations: an experience with gatekeepers of ethical approval. Int J Palliat Nurs, vol. 17(1), 14-18. link>
  • Read S. 2011. Bereavement, Loss and Learning Disabilities. HEALTH & SOCIAL CARE IN THE COMMUNITY, vol. 19(1), 106-107. link> doi>
  • Walker S, Read S, Priest H. 2011. Identifying, documenting and reviewing preferred place of death: An audit of one UK hospice experience. International Journal of Palliative Nursing, vol. 17(11), 546-551.
  • Read S and Maslin-Prothero S. 2011. The involvement of users and carers in health and social research: the realities of inclusion and engagement. Qual Health Res, vol. 21(5), 704-713. link> doi>
  • Walker R and Read SC. 2010. The Liverpool Care Pathway in intensive care: an exploratory study of doctor and nurse perceptions. International Journal of Palliative Nursing, vol. 16(6), 267-273.
  • Cartlidge D and Read SC. 2010. Exploring the needs of hospice staff supporting people with an intellectual disability: a UK perspective. International Journal of Palliative Nursing, vol. 16(2), 93-98.
  • Todd S and Read SC. 2010. Perspectives on death and dying. International Journal of Child Health and Human Development, vol. 3(2).
  • Read SC and Latham D. 2009. Bowel cancer screening: involving people with learning disabilities. Journal of Gastrointestinal Nursing, vol. 7(7), 10-16.
  • READ S. 2009. Loss bereavement and people with a learning disability: potential and possibilities for healthy support. Bereavement Services Association Newsletter, 7-8.
  • READ SC. 2008. Loss, bereavement counselling and support: An intellectual disability perspective. Grief Matters, vol. 11(2), 54-59.
  • READ S. 2008. Palliative care nursing in relation to people with intellectual disabilities. International journal of palliative Nursing, vol. 15(5), 226-232.
  • READ SC and Thomson-Hill S. 2008. Palliative care nursing in relation to people with intellectual disabilities. British Journal of Nursing, vol. 17(8), 506-510.
  • READ SC and Jackson S. 2008. Providing appropriate health care for people with intellectual disabilities. British Journal of Nursing, vol. 17(4), S6-S10.
  • McNeilly P and READ SC. 2008. The use of biographies in palliative care educations. International Jouranal of Palliative Nursing, vol. 14(8), 402-406.
  • Read S, Jackson S, Cartlidge D. 2007. Palliative care and intellectual disabilities: individual roles, collective responsibilities. Int J Palliat Nurs, vol. 13(9), 430-435. link>
  • Read S and Elliott D. 2007. Exploring a continuum of support for bereaved people with intellectual disabilities: a strategic approach. J Intellect Disabil, vol. 11(2), 167-181. link> doi>
  • READ SC. 2007. Exploring a continuum of support for bereaved people with intellectual disabilitites. JOurnal of Learnign disabilities, vol. 11(2), 167-181.
  • READ S and Bowler C. 2007. LIfe story work and bereavement: shared reflections on its usefulness. Learning Disability Practice, vol. 10(4), 10-15.
  • READ SC, Jackson S, Cartlidge D. 2007. Palliative care for people with intellectual disabilities: Individual roles, collective responsibilities. International Journal of Palliative Care, vol. 13(9), 430-437.
  • Read S and Spall B. 2006. Bereavement and people with a learning disability: A practice initiative in response to a local need. Learning Disability Practice, vol. 9(2), 8-15.
  • Read S. 2005. Learning disabilities and palliative care: recognizing pitfalls and exploring potential. Int J Palliat Nurs, vol. 11(1), 15-20. link>
  • Read S. 2005. Loss, bereavement and learning disability: providing a continuum of support. Learning Disability Practice, vol. 8(1), 31-37.
  • Read S. 2005. Palliative care for people with learning disabilities: Recognizing pitfalls and exploring potential. International Journal of Palliative Nursing, vol. 11(1), 15-20.
  • Read S and Spall B. 2005. Reflecting on patient and care biographies in palliative care education. Nurse Education in Practice, vol. 5, 136-143. doi>
  • Cartwright P and Read S. 2005. Working with practitioners to develop training in peri-natal loss and bereavement: Evaluating three workshops. Nurse Education in Practice, vol. 5, 266-273.
  • Cartwright P and Read S. 2004. Improving care and support for families experiencing peri-natal loss. Primary Health Care, vol. 14(2), 38-41.
  • Cartwright P and Read S. 2004. Perinatal loss: working with bereaved families. Primary Health Care, vol. 14(2), 38-42.
  • Read S and Papakosla-Harvey V. 2004. Using workshops on loss for adults with learning disabilities. Journal of Learning Disabilities, vol. 8(2), 191-208.
  • Read S. 2003. Book review : Applications of Case Study Research. Nurse Researcher, vol. 10(4), 93/94.
  • Read S and Elliot D. 2003. Death and learning disability: A vulnerability perspective. Journal of Adult Protection, vol. 5(1), 5/14.
  • Read S, Stewart C, Cartwright P, Meigh S. 2003. Psychological Support for perinatal trauma and loss. British Journal of Midwifery, vol. 11(8), 484/488.
  • Read S. 2002. Loss and bereavement: a nursing response. Nurs Stand, vol. 16(37), 47-53. link> doi>
  • Read SC. 2002. Dealing with loss and Supporting people through bereavement: a continuing professional development update for nurses. Nursing Standard, vol. 16(37), 47/53.
  • Read S. 2002. Loss and bereavement: Supporting patients who have suffered a loss. Primary Health Care: The RCN Community Health Nursing ournal.
  • Read S. 2001. A Year in the life of a bereavement counselling and support service for people with learning disabilities. Journal of Learning Disabilities, vol. 5(1), 19/33.
  • Spall B, Read S, Chantry D. 2001. Metaphor: Exploring it's origins and therapeutic use in death, dying and bereavement. International Journal of Palliative Nursing, vol. 7(7), 345-353.
  • Read S, Papakostra Hancy V, Bower S. 2001. Using workshops on loss for adults with learning disabilities. Groupwork, vol. 12(2), 6/26.
  • Lindop E and Read S. 2000. District nurses' needs: palliative care for people with learning disabilities. Int J Palliat Nurs, vol. 6(3), 117-122. link>
  • Lindop E and Read S. 2000. Palliative care for people who have a learning disability: exploring the professional needs of qualified district nurses. Eur J Oncol Nurs, vol. 4(1), 59-61. link> doi>
  • Clarke L and Read S. 1998. Bereavement support for people with learning disabilities. Nurs Times, vol. 94(28), 51-53. link>
  • Read S. 1998. Breaking bad news to people with a learning disability. Br J Nurs, vol. 7(2), 86-91. link>

Chapters

  • Read SC. 2011. End of Life. In Learning Disabilities: Towards Inclusion. |Atherton HL and Crickmore DJ (Eds.). (6th Edition ed.). UK: Churchill Livingstone, Elsevier.
  • Gibbs M and Read SC. 2010. Involving people with intellectual disabilities in research: Participation and emancipation. In Healthcare research: A handbook for students and practitioners. Roberts PM and Priest HM (Eds.). Wiley.
  • Gibbs M, Priest H, Read SC. 2010. Experiences of family carers of people with intellectual disabilities and a diagnosed mental health condition. In Contemporary Issues in Intellectual Disabilities. Prasher VP (Ed.). Hauppauge, NY: Nova Science Publishers.
  • Read SC. 2010. Loss. In Key Concepts in Learning Disabilities. Talbot P, Astbury G, Mason T (Eds.). London: Sage Publications.
  • READ S. 2010. Palliative care for the person with an intellectual disability. In Key Concepts in Palliative Care. Baldwin M and Woodhouse J (Eds.). London: Sage Publications.
  • Todd S and Read SC. 2010. Thinking about death and dying. In Cancer in Children and Adults with Intellectual Disabilities: Current Research Aspects. Satgé D and Merrick J (Eds.). (1st ed.). Hauppauge NY: Nova Publishers. link>
  • READ S and THOMPSON-HILL J. 2009. End of Life. In Oxford Handbook of Learning and Intellectual Disability Nursing. Gates and Barr (Eds.). Oxford Univ Pr.
  • READ S and THOMPSON-HILL J. 2009. End of life - Preferred place of care. In Oxford Handbook of Learning and Intellectual Disability Nursing. Gates and Barr (Eds.). Oxford Univ Pr.
  • READ S. 2009. Palliative care-end of life (nurses). In Oxford Handbook of Learning and Intellectual Disability Nursing. Gates and Barr (Eds.). Oxford Univ Pr.
  • READ S. 2009. Responding to bereavement. In Oxford Handbook of Learning and Intellectual Disability Nursing. Gates and Barr (Eds.). Oxford Univ Pr.
  • READ S. 2009. Supporting people in mainstream services: Tertiary care. In Oxford Handbook of Learning and Intellectual Disability Nursing. Gates and Barr (Eds.). Oxford Univ Pr.
  • READ S, BARR O, MCENHILL L, MCGLOUGHLIN D. 2009. Palliative Care for People with Learning Disabilities. In Oxford Handbook of Palliative Care. Watson, Lucas, Hoy, Wells (Eds.). Oxford University Press, USA.
  • READ S and ELLIOTT D. 2006. Care planning in palliative care for people with intellectual disabilities. In Care planning and delivery in intellectual disability nursing. Gates (Ed.). Wiley-Blackwell.
  • READ S. 2006. Communication in the dying process. In Palliative care for people with learning disabilities. Read (Ed.). Quay Books.
  • READ S. 2006. Counselling and support. In Palliative care for people with learning disabilities. Read (Ed.). Quay Books.
  • READ S, FURNISS J, MORRIS H. 2006. How did you cope? Learning from case studies in death and dying. In Palliative care for people with learning disabilities. Read (Ed.). Quay Books.
  • READ S. 2003. Bereavement and loss. In Learning disabilities: Themes and perspectives. Markwick and Parrish (Eds.). Butterworth-Heinemann Medical.
  • READ S and JERVIS J. 2003. Sudden death. In Medical assessment units: the initial management of acute medical patients. Wood and Rhodes (Eds.). Wiley.

Other

  • Read S and Corcoran P. 2010. A vehicle for listening and promoting meaningful consultation with people with ID. J Appl Res Intellectu Disabil (vol. 23, p. 454). WILEY-BLACKWELL PUBLISHING, INC.
  • Read S and Stephens R. 2010. Bereavement and people with ID: developing a tool to support practice. J Appl Res Intellect Disabil (vol. 23, p. 416). WILEY-BLACKWELL PUBLISHING, INC.
  • Read S and Todd S. 2010. Thinking about death and what it means: conversations with people with ID. J Appl Res Intellect Disabil (vol. 23, p. 415). WILEY-BLACKWELL PUBLISHING, INC.
  • Hunter SM, Jackson M, Read SC. 2010. Stories of loss: a stroke survivor perspective. International Journal of Stroke (vol. 5, p. 26).
  • READ S and MORRIS H. 2009. End of life care - best practice guide.
  • Read S. 2008. Focus groups with people with intellectual disabilities: Preparation and communication for involving people. J Intellect Disabil Res (vol. 52, p. 708). BLACKWELL PUBLISHING.
  • Todd S and Read S. 2008. Thinking about death and what it means: The perspectives of people with intellectual disabilities. J INTELL DISABIL RES (vol. 52, p. 651). BLACKWELL PUBLISHING.
  • Read SC, Gibbs M, Priest H. 2008. Experiences of family carers of people with intellectual disabilities and a mental health condition. Journal of Intellectual Disability Research (vol. 52, p. 715). Wiley-Blackwell.
  • CARTLIDGE D and READ S. 2008. Exploring hospice carers needs when supporting people with an intellectual disability and palliative conditions. J Intellect Disabil Res (vol. 52, p. 652). Wiley-Blackwell.
  • Cartlidge D and Read SC. 2008. Hospice at Home for people with intellectual disability: A case study approach. Journal of Intellectual Disability Research (vol. 52, p. 654). Wiley-Blackwell.
  • Todd S and Read SC. 2008. What does dying mean?. Journal of Intellectual Disability Research (vol. 52, p. 655). Wiley-Blackwell.
  • Read S. 2006. Palliative care and intellectual disabilities: Providing a continuum of support. JOURNAL OF APPLIED RESEARCH IN INTELLECTUAL DISABILITIES (vol. 19, p. 276). link>
  • Read S. 2006. Reflections on bereavement counselling: People with intellectual disabilities share their experiences. JOURNAL OF APPLIED RESEARCH IN INTELLECTUAL DISABILITIES (vol. 19, p. 252). link>
  • Read S. 2004. Developing a bereavement counselling manual for people with intellectual disabilities (ID): Journeys without maps. J INTELL DISABIL RES (vol. 48, p. 433). BLACKWELL PUBLISHING LTD.
  • Read S and Papakosta-Harvey V. 2004. Exploring loss and change: A groupwork experience. Journal of Intellectual Disability Research.
  • Read S. 2004. Long and winding roads: Stories of grief,loss and learning. Journal of Intellectual Disability Research.
  • Read S. 2001. Hidden myths and overt realities: bereavement counselling and support for people with learning disabilities. European Journal of Palliative Care (abstracts of the 7th Congress of the European Association of Palliative Care).
  • Read S. 2001. Palliative Care for people with learning disabilities: identifying issues and exploring possibilities. European Journal of Palliative Care (Abstracts of the 7th Congress of the European Association of Palliative Care).
  • Read S. 2000. Developmental disability and bereavement counselling: An exploratory pilot study. J INTELL DISABIL RES (vol. 44, p. 436). BLACKWELL SCIENCE LTD.

My lead role within the School is to develop research capacity and capability.  I teach areas of my specialism around bereavement, end of life care, transition, loss, marginalized groups and access to healthcare across all branches of nursing. I also teach aspects of research across nursing and midwifery programmes, and lead the Evidence Based Practice module as part of the BSc (Hons) Clinical Practice Course.  I co-ordinate the School Research Seminar programme , which involves a variety of sessions across the year around research and other scholarly topics facilitated by local, national and international speakers.

I co-chair the User and Carer Implementation Group within the School and Chair the Faculty of Health User and Carer group.