The Role of Health Promotion for People

with Intellectual Disabilities (ID): An Assessment of Frontline Staff’s Knowledge

and Attitudes

Dr. Lisa M. Hanna-Trainor

Institute of Nursing and Health Research

University of Ulster

DEL funded PhD Studentship completed October 2012 under supervision of: Dr Laurence Taggart, Prof. Eilis McCaughan and Prof. Gary Adamson, University of Ulster

Content

Key Terminology

Background

Aim and Objectives

Methodology

Key Findings

Discussion

Conclusion

References

An Intellectual Disability (ID) is defined as;

‘A reduced ability to understand new or complex information, or to learn new skills

(impaired intelligence); and reduced ability to cope independently (impaired social

functioning), which started before adulthood, with a lasting effect on development’

(DoH, 1995, pp. 1)

Frontline Staff – Day Care / Residential / Supported Living / Respite Services – involved in care

of people with ID on daily basis

The World Health Organisation (WHO) define health as;

‘A state of complete physical, mental and social wellbeing and not simply the absence of

disease or infirmity’ (WHO, 1946, pp. 100)

The WHO define health promotion as’

‘The process of enabling people to increase control over and to improve their health’

(cited by Nutbeam, 1998)

Key Terminology

Background

Health of people with ID

(Wilkinson et al, 2008; Young et al, 2007)

Major causes of death

(Royal College of Nursing, 2007; Cooper, 1998; Cooke, 1997)

Chronic illness

(Tyrer & McGrother, 2009; Bhaumik et al., 2007; De et al., 2008)

Health Promotion and people with ID

(Healthcare Commission, 2007; Lennox et al., 2008)

Health promotion policies exclude people with ID

Current health promotion theoretical models and conceptual frameworks need to be

examined in light of this populations needs

Aim and Objectives

Aim: To develop and test a questionnaire which assesses frontline staffs’ knowledge, attitudes and how

they promote the health of people with intellectual disabilities (PWID)

Objectives: 1. To explore the meaning of, enablers and barriers of health promotion for PWID from an international

perspective

2. To explore knowledge, attitudes and practices of health promotion for staff who work with PWID in community settings

3. To explore knowledge and attitudes of PWID and their family carers regarding what is health promotion, barriers and solutions

4. To develop and test a questionnaire which focuses on assessing staff knowledge, attitudes and practices regarding health and health promotion of PWID

5. To examine staffs’ knowledge, attitudes and how they promote the health of PWID

6. To identify the gaps in staffs’ knowledge, attitudes and practices of the health and health promotion needs of PWID and make recommendations for improving health promotion practice amongst this population

Methodology

Phase 1 (Objective 1)

Method: Qualitative methodology utilising 1-to-1 telephone interviews

Sample: 13 semi-structured interviews undertaken with academics & practitioners from fields of ID, health & health promotion between August & October 2010

Procedure: Interview schedule informed by literature review & included questions about HP (challenges, barriers, empowerment & need for better facilitation as well as key target areas for HP for ID population)

Data Analysis: Thematic Content Analysis – Newell & Bernard Framework

Phase 2 (Objective 2+3)

Method: Qualitative methodology utilising focus groups

Sample: 7 focus groups conducted; 3 with formal care staff (health facilitators, residential/supported living and day care staff), 1 with family carers and 3 with adults with ID within three HSCTs in NI between March & May 2011

Procedure: An interview schedule was compiled for each group of participants. The focus group schedules were built upon those utilised in phase 1

Data Analysis: Thematic Content Analysis – Newell & Bernard Framework

Methodology

Phase 3 (Objective 4)

Method: Quantitative methodology utilising development and testing of questionnaire

Development: Questionnaire was developed from findings of Phase 1+2

Testing: Face & content validity tested using academics & practitioners from the field of ID & HP who were sent the Q to complete and evaluate.

A pilot study was conducted with a sample of day-care and residential staff from 1 of 3 participating HSCTs; staff were asked to complete Q and take part in short workshop.

Data Analysis: Quantitative analysis using SPSS and MPlus

Phase 4 (Objective 5+6)

Method: Quantitative methodology – distribution of questionnaire

Sample: A total of 698 questionnaires were distributed to Triangle Housing Association, 17 residential/supported living & 18 day care-centres in 3 participating HSCTs

Distribution: The questionnaire was distributed twice to all formal care staff working with adults with ID in the three participating HSCTs

Time 1 distribution occurred Nov & Dec 2011 – A total of 248 Q were completed (35.5%)

Time 2 distribution took place Feb 2012 – A total of 102 Q returned (retention rate 41.1%)

Data Analysis: All results were entered into SPSS for data checking & cleaning, transferred to Mplus for analysis – Exploratory and Confirmatory Factor Analysis & CFA with co-variates were conducted using MPlus

Key Findings

Phase 1 Themes Phase 2 Themes Phase 3 Questionnaire

Development Areas

The Role of Health Promotion

Enablement: Through

education, training &

information

Person Centeredness: PWID &

their Needs

Advocacy: Through sharing &

collaboration

Mediation: By balancing /

challenging tensions

The Facilitation of Health

Promotion

Need for Knowledge and

Personalisation

Collaborative Working

Challenging Attitudes and

Equality

Knowledge of Health

Knowledge of Health Promotion

Attitudes towards Health and Health

Promotion

Roles and Responsibilities of Formal

Care Staff

Education / Training Needs of Formal

Care Staff

Health Promoting Work Environment

Barriers to Health Promotion

Results / Discussion

Formal Care Staff’s Knowledge, Attitudes & Skills regarding the Health Promotion of

PWID

Dearth of Knowledge

Education/Training Needs

Role of Family Carers

Lack of Knowledge

Fears / Frustrations

Need for Mediation / Collaboration

PWID Right to Choose vs Carer’s Duty of Care

Balancing Tensions between PWID, families and Staff

A Theoretical Framework for Health Promotion (HP) for PWID

Role of current HP Policy in lives of PWID

Conclusion

Focus of study was to assess the needs and identify the gaps regarding the health promotion of

adults with ID

Keys findings indicated a need for improved knowledge and clarification of the roles and

responsibilities of the formal carers and family carers who work / care for adults with ID

As well as the need for a clear health promotion framework that highlights the needs of all

those involved and recommends concrete solutions from a sound theoretical base

As longevity increases amongst people with ID, their prevalence of chronic illness is also set

to rise

Findings from this study indicate that the way forward in improving the health of PWID is to go back to the foundations of health promotion as laid out in the Ottawa Charter by the WHO (1986).

Challenge for Future

Thank-you

Any Questions

Lisa M. Hanna-Trainor

Lm.hanna-trainor@ulster.ac.uk

References

Bhaumik, S., Watson, J.M., Thorp, C.F., Tyrer, F. and McGrother, C.W. (2008) Body mass index in adults with intellectual disability: distribution, associations and service implications: a population-based prevalence study. Journal of Intellectual Disability Research 52 (4), pp. 287–298.

Cooke, L.B. (1997). Cancer and Learning Disability. Journal of Intellectual Disability Research 41, pp.312-316.

Cooper, S.A. (1998) Clinical Study of the Effects of Age on the Physical Health of Adults with Mental Retardation. American Journal on Mental Retardation 102, pp.582-589.

Creswell, J.W. (2009) Research Design: Qualitative, Quantitative and Mixed Methods Approaches. Third Edition. Sage Publications. Los Angeles

De, S. Small, J. & Baur, LA. (2008) Overweight and Obesity among children with developmental disabilities, Journal of Intellectual & Developmental Disability 33 (1), pp. 43-47.

Health Care in Adolescents with Intellectual Disability, Journal of Applied Research in Intellectual Disabilities 21, pp.484-489.

Healthcare Commission (2006) Joint investigation into the provision of services for people with learning disabilities at Cornwall Partnership NHS Trust. Available at: http://www.equalpeopleinstoke.org/Libraries/Local/698/Docs/Documents/News/cornwall_investigation_report_Easy_read.pdf (Accessed 29 August 2012).

Healthy Aging and Wellness Working Group (2006) Healthy Aging in Canada: A New Vision, A Vital Investment. Available at: http://www.gov.mb.ca/shas/agefriendly/vision_paper.pdf (Accessed 3 August 2012).

Healthcare Commission (2007b) Investigation into the service for people with learning disabilities provided by Sutton and Merton Primary Care Trust, Available at: http://archive.cqc.org.uk/_db/_documents/Sutton_and_Merton_inv_sum_Tag.pdf (Accessed 29 August 2012)

Lennox, N., Rey-Conde, T. and Faint, S. (2008) A Pilot of Interventions to Improve

MENCAP (2007) Death by Indifference-Following up the Treat me right! Report. Available from: http://www.mencap.org.uk/document.asp?id=284 (Accessed 20th April 2009) Internet.

MENCAP (2004) Treat me right! Better healthcare for people with a learning disability. Available from: http://www.library.nhs.uk/learningdisabilities/ViewResource.aspx?resID=51823 (Accessed 19th April 2009) Internet.

Muthen, L. K. and Muthen, B. O. (1998-2010) MPlus: Statistical Analysis with Latent Variables 6th edn. Los Angeles, CA : Muthen & Muthen.

Newell, R. and Burnard, P. (2006) Research for Evidence-Based Practice. Oxford: Blackwell Publishing.

Nutbeam, D. (1998) WHO Health Promotion Glossary. World Health Organisation, Geneva. Available at: http://www.who.int/hpr/NPH/docs/hp_glossary_en.pdf (Accessed on 26 August 2010).

Oppenheim, A.N. (2003) Questionnaire Design, Interviewing and Attitude Measurement. New Edition. London: Continuum.

Owen, F. and Griffiths, D. (2009) Challenges to the Human Rights of People with Intellectual Disabilities. London: Jessica Kingsley Publishers.

Oxford Institute of Aging (2009) Health behaviours among older and younger workers with chronic illness - Working Paper 109. Available at: http://www.ageing.ox.ac.uk (Accessed 2 February 2010).

Parahoo, K. (2006) Nursing Research: Principles, Process and Issues 2nd edn. England: Palgrave Macmillan.

RCN (2007) Meeting the health needs of people with learning disabilities- Guidance for Nursing Staff. Published RCN, London. Available at: http://www.rcn.org.uk/__data/assets/pdf_file/0004/78691/003024.pdf (Accessed 3 November 2009).

Slevin, E. & Sines, D. (2000) Enhancing the Truthfulness, Consistency and Transferability of Qualitative Study. Nurse Researcher, 7 (2), pp.79-97

Tyrer, F. and McGrother, C. (2009) Cause-specific mortality and death certificate reporting in adults with moderate to profound intellectual disability. Journal of Intellectual Disability Research 53, (11) pp.898-904.

Wilkinson, J.E. and Cerreto, M.C. (2008) Primary Care for Women with Intellectual Disabilities. Journal of the American Board of Family Medicine 21 (3), pp.215-222.

World Health Organisation (2012) The Ottawa Charter for Health Promotion. Available at: http://www.who.int/healthpromotion/conferences/previous/ottawa/en/index1.html (Accessed 15 July 2012).

World Health Organisation (1978) Declaration of Alma-Ata, International Conference on Primary Health Care, Alma-Ata, USSR. Available at: http://www.who.int/hpr/NPH/docs/declaration_almaata.pdf (Assessed on 12 February 2009).

World Health Organisation (1946) Constitution of the World Health Organization. International Health Conference, New York, 1946; No. 2, pp. 100 Available at: http://whqlibdoc.who.int/hist/official_records/constitution.pdf (Assessed on 12 February 2009).

Young, A.F., Chesson, R.A. and Wilson, A.J. (2007) People with learning disabilities, carers and care workers awareness of health risks and implications for primary care. Family Practice 24 (6), pp.576-584.