SCIE research briefing 2: Access to primary care services for people with learning disabilities - references
Click here for a full alphabetical list of the references.
(1) Department of Health (2001) Valuing People: A New Strategy for Learning Disability for the 21 st Century. London, Department of Health.
Central government policy document covering England only.
(2) Martin D.M. Roy A. Wells M.B. Lewis J. (1997) Health gain through screening - users' and carers' perspectives of health care: Developing primary health care services for people with an intellectual disability. Journal of Intellectual & Developmental Disability 22(4): 241-249.
Research involved the following consultative strategies: a forum of 60 people, a questionnaire to carers which had 104 responses, service users' focus groups involving 31 PLD, interviews with 53 PLD following a health check and a carers' focus group of 7 people. The aim was to identify the experiences, expectations and opinions of PLD using primary health care services.
(3) Turner S. Moss S. (1996) The health needs of adults with learning disabilities and the Health of the Nation strategy. Journal of Intellectual Disability Research 40(5): 438-450. Abstract available.
A review of mortality and morbidity for people with learning disabilities within the context of the five Health of the Nation Key Areas.
(4) While A. (2001) Learning disability and equity of access. British Journal of Community Nursing 6(2): 94.
Editorial comment.
(5)Lennox T.N. Nadkarni J. Moffat P. Robertson C. (2003) Access to services and meeting the needs of people with learning disabilities [Abstract]. Journal of Learning Disabilities7(1): 34-50.
Research involved an interview-based survey, consisting of quantitative and qualitative questions, being administered to 49 PLD concerning service access, health needs, meeting needs and quality of care. Abstract available
(6) Coyle D. Northway R. (1999) Promoting health: the challenge for the community learning disability nurse. Mental Health Care 2(7): 232-235.
An overview of how access to primary health care services for PLD can be improved.
(7) Curtis J. Taylor B. Bartlett E et al (1999) Pharmacist support for people with learning disabilities.The Pharmaceutical Journal 263(7072):826-831.
A briefing paper to enable pharmacists to provide support to PLD, their relatives and carers. Full text available
(8) Gordon S.M. Dionne R.A. Snyder J. (1998) Dental fear and anxiety as a barrier to accessing oral health care among patients with special health care needs. Special Care in Dentistry 18(2): 88-92. Abstract available.
A questionnaire survey of people with special health care needs on dental fear and anxiety: there were 536 responses.
(9) Paxton D. Taylor S. (1998) Access to Primary Health Care for Adults with a Learning Disability. Health Bulletin 56(3): 686-693.
Research involved the completion of health assessment screening forms (by researchers) and interviews of 71 PLD to enable a system to be set up for accessing primary health services.
(10) World Health Organisation (2004). Primary health care and community health.
WHO definition of primary care.
(11) Large J. Jenkins L. (1999) Don't overlook a special group of patients. Practice Nurse 17(3): 178-181.
Research involved the health screening (with measurable outcomes) of 11 PLD.
(12) Hogg J. (2001) Essential healthcare for people with learning disabilities: barriers and opportunities.Journal of the Royal Society of Medicine 94: 333-336. Abstract available.
An overview healthcare for PLD, concentrating on the quality of primary health services, education and information.
(13) Nightingale C. (2000) Barriers to health access: a study of cervical screening for women with learning disabilities. Clinical Psychology Forum 137: 26-30
Research involved a qualitative study with staff from 62 general practices about attitudes to females with LD and cervical screening.
(14) Whitfield M. Langan J. Russell O. (1996) Assessing general practitioners' care of adult patients with learning disability: case-control study. Quality in Health Care5: 31-35. Abstract available.
Research involved a case-control study with 78 adult patients and 78 controls with a structured interview study of 62 general practitioners.
(15) Allison P.J. Hennequin M. Faulks D. (2000) Dental care access among individuals with Down syndrome in France.Special Care in Dentistry 20(1): 28-34. Abstract available.
Research involved a cross-sectional survey of parents of individuals with Down's Syndrome (DS) and whether there were differences in treatment between the DS individuals and other siblings: 204 questionnaires were returned.
(16) Pratelli P. Gelbier S. (1998) Dental services for adults with a learning disability: care managers' experiences and opinions. Community Dental Health 15(4): 281-285. Abstract available.
Descriptive survey collecting qualitative and quantitative data by semi-structured interviews with 75 managers of 80 long term homes for people with learning disabilities.
(17) Sutton J.P. DeJong G. (1998) Managed Care and People With Disabilities: Framing the Issues. Archives of Physical Medicine and Rehabilitation 79: 1312-1316. Abstract available.
An overview of access to health care for people with disabilities in the US.
(18) Parrish A. (1998) Community care for people with a learning disability. British Journal of Community Nursing 3(7): 352-355.
An overview of service access for PLD and the role of specialist nurses.
(19) Martin D.M. (1999) A Comparative Review of Primary Health Care Models for People With Learning Disabilities: Towards the Provision of Seamless Health Care. British Journal of Learning Disabilities27: 58-63.
A comparison of a number of primary care health check models for PLD.
(20) Department of Health (2000) The NHS Plan. London, Department of Health.
Central government policy document.
(21) Parrish A. Markwick A. (1998) Equity and access to health care for women with learning disabilities.British Journal of Nursing 7(2): 92-96. Abstract available.
An assessment of the main issues relating to health care access for women with LD.
(22) Broughton S. (2002) A review of the literature: interventions to maximise capacity to consent and reduce anxiety of women with learning disabilities preparing for a cervical smear test. Health Services Management Research 15(3): 173-185. Abstract available.
Literature review.
(23) McCarthy M. (2002) Responses to Women with Learning Disabilities as they go Through the Menopause. Tizard Learning Disability Review 7(1): 4-12. Abstract available.
Research involved analysis of questionnaires sent to: GPs (73 returned), day and residential services staff (66 returned) and family carers (15 returned) and semi-structured interviews with 30 women with LD on experiences of the menopause amongst women with LD and the available support.
(24) Davies N. Duff M. (2001) Breast cancer screening for older women with intellectual disability living in community group homes. Journal of Intellectual Disability Research 45(3): 253-257.
A postal survey of women aged ≥ 50 years with intellectual disability living in community group homes.
(25) Wells M. Turner S. Martin D. Roy A. (1997) Health gain through screening - coronary heart disease and stroke: developing primary care services for people with intellectual disability. Journal of Intellectual Disability Research, 22(4): 252-263.
Report of the findings of health checks of 120 people with intellectual disability.
(26) Department of Health (2003) Our Inheritance, our future - realising the potential of genetics in the NHS. London, Department of Health.
White Paper produced by the Department of Health
(27) McCray J. Carter S. (1999) Access unrestricted. Nursing Times 95(23): 47-49.
A review of how primary care staff can give PLD full access to health care services.
(28) Beange H. (1996) Caring for a vulnerable population. Medical Journal of Australia 164: 159-160.
An assessment of the services available to PLD in Australia. Full text available
(29) Kenny C. (1999) The gentle touch. Nursing Times 95(24): 36-37.
Four brief case studies about the work of learning disability nurses.
(30) Dodd K. Brunker J. (1999) " Feeling Poorly': Report of a Pilot Study Aimed to Increase the Ability of People with Learning Disabilities to Understand and Communicate About Physical Illness. British Journal of Learning Disabilities 27: 10-15.
Research involved a pilot study with questionnaires of 10 PLD to test the effectiveness of communication aids.
(31) McCrae D. (1997) Health care for women with learning disabilities. Nursing Times 93(15): 58-59.
Research involved administering a questionnaire to 24 women with LD about their knowledge and use of a number of health care services.
(32) Joseph Rowntree Foundation (1999) Adults with learning difficulties' involvement in health care decision-making. Findings October 1999 - Ref 029.
A summary of the report "Best practice? Health care decision-making by, with and for adults with learning disabilities"
(33) Martin D.M. Roy A. Wells M.B. (1997) Health gain through health checks: improving access to primary health care for people with intellectual disability. Journal of Intellectual Disability Research 41(5): 401-408. Abstract available.
Research involved an assessment of a forum discussion involving 60 people, a questionnaire to carers (104 responses), service users' focus groups (36 people), interviews with PLD following a health check (52 people) and a questionnaire on physical activity to 110 participants and 46 people from the general population. The aim was to identify PLD in need of health care services and encourage GP's to offer comprehensive health checks.
(34) Thornton C. (1999) Effective health care for people with learning disabilities: a formal carers' perspective. Journal of Psychiatric & Mental Health Nursing 6(5): 383-390.
Research involved a qualitative approach and the use of descriptive analysis of 6 focus group and 11 one-to-one interviews of health care professionals and carers about the perceptions and experiences of accessing primary health care for PLD.
(35) Bond L. Kerr M. Dunstan F. Thapar A. (1997) Attitudes of general practitioners towards health care for people with intellectual disability and the factors underlying these attitudes. Journal of Intellectual Disability Research 41(5): 391-400. Abstract available.
Research involved a questionnaire about intellectual disability attitudes being sent to GPs in two areas: there were a total of 257 responses.
(36) Chambers R. Milsom G. Evans N. Lucking A. Campbell I. (1998) The Primary Care Workload and Prescribing Costs Associated with Patients with Learning Disability Discharged from Long-stay Care to the Community. British Journal of Learning Disabilities 26: 9-12.
Study with a control group of 136 patients with a learning disability at 21 practices of workloads, health checks and medication reviews.
(37) Bollard M. (1997) Promoting the health care needs of people with learning disabilities. British Journal of Community Health Nursing2(1): 46-50.
Research involved a postal survey of GP's of healthcare issues for PLDs: 25 replies were received.
(38) Harrison S., Plant A., Berry L. (2004). Valuing People: developing health visiting practice for people with learning disabilities. Practice Development in Health Care, 3, 210-215.
This article describes a project to improve access to mainstream primary care services for PLDs.
(39) Leyshon S., Clark L.L., Epstein L., Higgins S. (2004). Learning Disabilities. Caring for people with learning disability using care management. British Journal of Nursing, 13 (14), 845-847.
This article proposes a care management approach to supporting PLDs in accessing primary care. Abstract available
(40) Giraud-Saunders A. et al (2003). Action Guide: Valuing Health for All; primary care trusts and the health of people with learning disabilities, London.
The guide reports on a project evaluating health outcomes for PLDs who need to access primary care.
(41) Harrison S., Berry L. (2005). Improving primary care services for people with learning disability. Nursing Times, 1 January, 38-40.
This article describes a project to develop inclusive primary health care for PLDs. Abstract available
