Mr. Kumaresan Cithambaram Dr Mel Duffy Dr Eileen Courtney

1. An Exploration of the end of life care needs of people with intellectual disabilities: developing a model of service delivery– A protocol Mr. Kumaresan Cithambaram Dr Mel Duffy Dr Eileen Courtney

2. Rationale • People with intellectual disabilities are growing older and living longer • Suffer from same life limiting illness as the general population • the main causes of death range from cancer, respiratory diseases, cardiac diseases and dementia • Their needs are changing and pose a challenge to service providers.

3. This forces service providers and professionals to equip themselves to respond and attend to the specific health needs of this group, Service providers often forget to hear, listen to and include the voices of people with intellectual disabilities. People with intellectual disabilities receiving inconsistent and inappropriate end-of-life care.

4. Aim • The aim of this study is to explore the end-of-life care needs of people with intellectual disabilities.

5. Objectives • 1. To explore attitudes, perceptions and preferences of people with intellectual disabilities about end-of-life care. • 2. To explore perceptions and experiences of family members of people with intellectual disabilities about end-of-life care needs of people with intellectual disabilities. • 3. To develop a model of service delivery for people with intellectual disabilities at the end of life.

6. Methodology and Method • This study adopts a constructivist grounded theory approach • I proposed to conduct in-depth, semi-structured interviews from service users and family members until the study reaches theoretical saturation . • To assist in communication and stimulate their thinking, a story from an easily read book Am I Going to Die will be used to facilitate communication and response during the semi-structured interview.

7. PARTICIPANT PROFILE Inclusion Criteria 1. People with mild or moderate intellectual disabilities, who: a. can articulate, b. are able to engage in a conversation, c. are aged over 40 years and d. are able to give informed consent to participate in the study. 2. Family members of people with intellectual disabilities whose relatives receive service from specific Intellectual Disability services.

8. Exclusion Criteria 1. People with intellectual disabilities who a. have suffered bereavement in the last six months. b. who cannot verbalise c. are unwilling to give informed consent. 2. Family members of people with intellectual disabilities who have suffered bereavement in the last six months.

9. Ethical Issues • Obtain Ethical approval from DCU, • Obtain ethical approval from the participating services, • Assessing capacity to Consent, • Obtaining Informed Consent.

10. Development of information Sheet and a Consent Form • An easy to read inform sheet and a consent form were developed with the help of MDT which includes ADON, Speech and Language Therapist, Montessori teacher and a person with intellectual Disabilities. • The developed information sheet and consent form were piloted among a group of people with intellectual disabilities about the contents, pictures and language used. • The information sheet and consent form were modified based on the feedback from the group.

11. The Easy to Read Information Sheet and Consent Form

12. Recruitment: people living in residential units • Obtain permission from clinical Nurse Managers. • Informal discussion with people with intellectual disabilities. • Provide information sheet to each person with intellectual disabilities.

13. Visit each unit after a week to collect the list of potential participants, • Check for eligibility criteria and to discuss the study, • Meet them personally to check their eligibility to participate in the study, • Arrange a convenient time and venue for an interview.

14. People live with their family Step-1 • Give envelops which consists of an information sheet, participant acceptance card and self addressed envelope to the staff in Central Support Office with return address to service provider. Step-2 2. Send information sheet, participant acceptance card and self addressed envelope by the researcher with return address to the researcher.

15. Family Members Step-1 • Give envelops which consists of an information sheet, participant acceptance card and self addressed envelope to the Clinical Nurse managers of the each residential unit and staff in the Central Support Office with return address to service provider. Step-2 2. Send an information sheet, participant acceptance card and self addressed envelope to family members with return address to the researcher.

16. Assessing capacity to Consent • If the participant can absorb the information required to make the decision to be involved in the study? • If the participant understands the information? • If the participant can weigh up the different considerations involved, including, for example, what is required of the researcher in the study and what is required of them as participants? • If the participant understands the consequences of being involved in the study, when it is explained? • If the participant can communicate that decision?

17. Informed Consent • Providing information in a way that is understandable to people with intellectual disabilities • Provision of easy read information sheet, • Adoption of easy read consent form, • Ensuring each participant that they had sufficient information regarding their rights, • Reassuring each participant of their anonymity and confidentiality.

18. Data analysis • The recorded interviews are transcribed and field notes are also utilised as data. • Data are analysed by using constant comparative data analysis. • Initially the raw data are undergoing stages of refinement such as open coding and clustering concepts towards the development of categories that are related to the objectives of the study.

19. Implication The findings from this study will help to develop a model of service delivery that meets the care needs of people with intellectual disabilities at their end of life.