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Anne McNall - Senior Lecturer,

A ligning the service user perspective with public health targets to develop sexual health services: Informing educational and practice preparation of sexual health advisers through participatory action research. Anne McNall - Senior Lecturer,

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Anne McNall - Senior Lecturer,

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  1. Aligning the service user perspective with public health targets to develop sexual health services: Informing educational and practice preparation of sexual health advisers through participatory action research Anne McNall - Senior Lecturer, School of Health, Community and Education Studies, Northumbria University Newcastle upon Tyne anne.mcnall@northumbria.ac.uk 0191 215 6139

  2. This presentation covers… • The rationale for the doctoral proposal • The ethical challenges presented by sexual health research • The ethical challenges presented by participatory action research • The proposal and how it seeks to address these issues.

  3. My background • Nurse & Midwife, specializing in Sexual Health since 1994 • Pathway Leader to BSc (Hons) Sexual Health here within the CiPD framework • Providing one of 3 Sexual Health Adviser (SHA) courses nationally, working with DH and NMC to develop national standards for SHA education • Working collaboratively with trusts across the North East region to develop workforce to respond to sexual health need. • DNSc student at Northumbria

  4. Partnershipand participation – why bother? • Service user and carer participation in the development, delivery and evaluation of services and care is a major component of contemporary health and social care policy • Section 11 of the Health and Social Care Act (DH 2001): • places a legal duty on the NHS to involve and consult patients and public in the planning and development of health services and in making decisions that affect the way those services operate • this duty has been a legal requirement since January 2003 • Reiterated in Section 242 of the National Health Service Act (2006)

  5. Partnership & participation – why bother? MedfASH standards for sexual health services(2005) • “Commissioners and Services should: • Promote active user participation and involvementin the planning and organization of services • Develop their understanding of the various communities they serve • Recognise and respond to social exclusion, discrimination and power imbalances (such as those between genders or individuals) in a way that enhances access, and promotes effective use of services • Ensure all staff involved in sexual health services are committed to non-discriminatory working practices and delivery of care” (MedfASH 2005, p33)

  6. Review of the literature • Little evidence of service users and carers views being sought in the sexual health context • Mostly studies failed to explore perceived need – focused on satisfaction with what was offered • Some evidence of unmet need • Some useful qualitative studies which explored lived experience :–sexual health service patients can feel responsible that their problems result from their own behaviours, feel stigmatized and reluctant to give negative feedback. • Sexual health services offer extra confidentiality (DH,2000) • Established methods of PPI unlikely to be appropriate for sexual health context

  7. Developing Sexual Health Practice - Which approach? • Existing medical model of sexual health practice, separation of services, discourses of sexual health crisis, upstream /downstream conflict – need for more consultants • Public health targets highly visible in sexual health context and services and interventions must be explicitly linked to them (48 hour access target to GUM) • Current evidence base must inform practice development – might conflict with user preferences • Service providers also have insight and their views must be incorporated into decision making • Diversity of need, multiple views, no one answer

  8. How to do it…. • How can the service user view be accessed in the context of sexual health services? • How can those who don’t use services be accessed to elicit their views? • How can other relevant issues be considered? • What are the barriers? • Will the findings impact on service delivery? (DH, Getting over the wall 2004)

  9. A hierarchy of participation(Hart 1996)

  10. Participatory Action Research • Enhancement or emancipatory approach (Holter & Schwartz- Barcott, 1993) • Empowerment model (Hart & Bond, 1995) • Consciousness raising • Shifting the balance of power • Enhance user control • Negotiated definition of problems • Negotiated definition of improvement • Collaborative decision making • Boog, B. (2003) The emancipatory character of action research, its history and the present state of the art. Journal of Community & Applied Social Psychology 13 426-438

  11. What is participatory appraisal? • A flexible and practical participatory action research approach • Provides a framework to bring together communities and decision makers • Uses simple visual tools to increase inclusion • Is interactive rather than extractive • It is a rapid way of moving from insight to action at low cost

  12. Is about: Research Education Collective action It involves: Dialogue Empowerment Understanding Participatory Appraisal www.northumbria.ac.uk/peanut

  13. So how? • Look for key informants, individuals and groups - not randomly selected, purposive sampling- large numbers • Uses a variety of tools to gather information/gain insight/make suggestions for change • Multiple perspectives • Triangulation of data • Findings must be fed back and verified by the community themselves • Result in action/ policy change

  14. Mapping Time lines Force field analysis Pie charts Venn diagrams Daily schedules Flow charts Causal impact diagrams Criteria ranking Impact ranking Evaluation wheel Spider diagram Card sorting Completing statements Tools

  15. Mapping

  16. Spider Chart

  17. Causal Impact Diagram

  18. Daily Activity Chart

  19. Force Field Analysis

  20. North Tyneside PCT • Commissioned study – neighbourhood renewal funding • Recruited 3 teams of 3 co researchers – 3 public health practitioners, 6 volunteers from voluntary sector, community development, social work, local authority, community health council • 18 days in total • 5 days training in PA • Ethical approval • 10 week study • 3 days for development of reports

  21. Research informing practice development • Practice development is a continuous process of improvement towards increased effectiveness in patient centred care. This is brought about by helping healthcare teams to develop their knowledge and skills and to transform the culture and context of care. It is enabled and supported by facilitators committed to systematic, rigorous continuous processes of emancipatory change that reflect the perspectives of service users. • Garbett & McCormack (2002, p88 my emphasis)

  22. Research informing curriculum proposal/ workforce development • Idea of a sexual health practitioner who could “work in new ways” emerged • Proposal commissioned by Department of Health to recommend how sexual health practitioners should develop to respond to current “sexual health crisis” (McNall 2005) • Other issues became priority – regulation of health care professions (Sexual health advisers not registered as a professional group)

  23. The aims of initial sexual health adviser education A practitioner able to work in new ways….. • Work in partnership to impact on sexual health through the • Search for health needs in relation to sexual health and wellbeing • Stimulation of awareness of sexual health needs • Influence on policies affecting sexual health • Facilitation of sexual health enhancing activities • Rather than a sexual ill health model • Fits well with Specialist Community Public Health Nursing, also allows registration and regulation • Required negotiation and agreement with Nursing and Midwifery Council, Society of Sexual Health Advisers Council, support from DH (Action point of the National strategy for Sexual health & HIV (DH, 2001) • Agreed September 2007, • Guidance document on national implementation November 2007(McNall 2007)

  24. National Curriculum and essential skills cluster proposal with DH/NMC/SSHA North Tyneside PA study to develop Sexual Health services Discourse analysis of PA process, Development of curriculum to equip practitioners with required PAR skills National Dissemination of curriculum content and approaches and organisational learning that occurred Source: Zuber-Skerritt, O. Perry, C. (2002) Action research within organisations

  25. Research informing theory development • McCormack et al (2004, p44) “As with emancipatory action research, emancipatory practice development results in personal theory and through the vehicle of systematic evaluation it can also generate public theory and knowledge.”

  26. Ethical challenges • Whilst PA offers a potentially innovative way to develop practice, it has ethical considerations and challenges common to AR and PAR • Williamson & Prosser (2002) AR • Khanlou & Peter (2005) PAR • - offer a framework for evaluating studies • Social or scientific value • Scientific validity • Fair subject selection • Informed consent • Respect for potential and enrolled participants • Favourable risk/benefit ratio • Independent review

  27. Social or scientific value • Aim is to improve public health & wellbeing • Acknowledge the political and power imbalances involved in stigmatized areas of practice • Emancipatory – gives those disempowered or without influence the opportunity to contribute at individual and service development level (THT 2004, 2005 1/3 of PCTs have not undertaken a sexual health needs assessment) • Philosophy of PA

  28. Scientific validity • Peiro et al (2002) see PA as enabling comparison of health strategies in a way that can be understood by lay people as well as professionals. • Provides insight into participants beliefs and value systems through their perception of their needs. Wide reaching. • Range of qualitative data collection methods and triangulation of questions and tools

  29. Fair subject selection • Must include diverse population to be representative, specifically those with greatest sexual health need and/or excluded from involvement • Young people, children in the looked after system, MSM, refugee and asylum seekers, those with MH problems, physical impairment or learning difficulty. • Must use large number of participants until saturation of data is reached

  30. Fair subject selection – how? • Target established community groups, using co researcher community knowledge • (3 co-researcher teams, approx 3 groups per day x 10 days = 90 groups) • Some streetwork (2 hours, 90 responses) • Staff working in sexual health services • Decision makers in the Sexual Health Implementation Group

  31. Respect for potential and enrolled participants • Co researchers: • Informed consent, time involvement, political & professional implications of questioning current practice. • Research involvement contract (Involve, 2005) • Reimbursement of expenses or payment, and implications if in receipt of benefits (DH 2006) • Beebe (1995) PA tools are powerful, quickly uncover important and potentially sensitive information, and requires the co researcher to give information. • Co-researcher training, philosophy and tools of PA, applied to SH context. • Working in co researcher teams of 3, one of whom is a registered accountable practitioner with subject specific and local service knowledge, and interpersonal skills to manage situations arising - stay within sight of each other.

  32. Respect for potential and enrolled participants/Informed consent • Research participants • Informed consent • Groups.Written information in a range of accessible formats sent to established groups 1 -2 weeks in advance. NB. Not being accessed as service users (although some will be) Choice of attending group session for PA study. • Streetwork. Verbal information given, written info if appropriate • Staff Usual information & consent forms with signature • Anonymity & Confidentiality • Sexual health service users are given the choice of whether to provide personal identifying data (DH 2000) • Principles of informed consent read again at group meeting - co researchers verify that this was done. No individual signatures requested • Reminded of confidentiality risk of sharing personal information in group – individual option to provide feedback..

  33. Respect for potential and enrolled participants/ informed consent • Research participants • Vulnerable groups • Exclude under 13’s (not able to consent under sexual offences Act 2003) • 13-16 Year olds assessed using the North Tyneside assessment tool (Based on Fraser/DH guidelines 2004) for their competence to consent. • If deemed competent, would be given access to information and sexual health services without parental consent. • Those with learning difficulty, mental health problems also assessed using same tool

  34. Favourable risk/ benefit ratio • PAR – potential for raising awareness and consciousness, but also expectations • PA asks participants to identify issues, solutions and prioritise actions, therefore is realistic in what it can achieve, and highlighted in information sheets. • Service user perspectives are required aspect of contemporary practice– little evidence of this occurring in SH – transferable approach for other areas of practice. • Potential risk to research participants - CRB checks, training, support of co researcher team.

  35. Independent review • North Tyneside R& D • HCES ethical review • What are your concerns?

  36. References • Department of Health (2000) National Health Service Trusts and Primary Care Trust (Sexually Transmitted Diseases) Directions. • Department of Health (2001) The National Strategy for Sexual Health & HIV. London, DH. • Department of Health (2003). Strengthening Accountability. Involving patients and the public. London. DHMcCormack, B. Manley,K. Garbett, B (Eds)(2004)Practice Development in Nursing. Blackwell Publishing. Oxford • Department of Health (2004). Getting over the Wall: How the NHS is improving the patient’s experience. London. DH • Hart, E. Bond, M. (1995) Action Research for Health and Social Care : A Guide to Practice. OU Press • Holter, I.M. & Schwartz-Barcott (1993) Action research:what is it? How it has been used and how it can be used in nursing? Journal of Advanced Nursing18 (2) p298-304 • Khanlou, N. Peter, E. (2005) Participatory action research: considerations for ethical review. Social Science and Medicine 60, 2333-2340 • McNall, A. (2005) A Second Draft of the Consultation Paper on • Initial Sexual Health Adviser Education and Preparation The Society of Sexual Health Advisers (SSHA) Funded by the Department of Health. Unpublished Paper • Medical Foundation for AIDs and Sexual Health (2005) Recommended Standards for Sexual Health Services. MedFash/DOH. London. • Nursing & Midwifery Council (2007)Circular 34/2007 Criteria for migration via portfolio to the SCPHN part of the NMC register for sexual health advisers. • http://www.nmc-uk.org/aFrameDisplay.aspx?DocumentID=3426 accessed November 2007 • Nursing & Midwifery Council (2007) Circular 35/2007 Programme requirements for registration as a SCPHN – Sexual Health Advisers • http://www.nmc-uk.org/aFrameDisplay.aspx?DocumentID=3427 accessed November 2007 • Peiro, R. et al. (2002) Rapid appraisal methodology for ‘health for all’ policy formulation. Health Policy 62 (3), 309-328. • Terence Higgins Trust, British HIV Association, Providers of AIDS Care and Treatment (2004) Clinical Trials. THT, BHIVA, PACT, London. • Terence Higgins Trust (2005) Achieving the 48 hour access target. THT , London. • Zuber- Skerritt, O. Perry, C. (2002) Action research within organisations and university thesis writing. The Learning Organisation 9 (4) 171-179

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