An applied social research project for Sahir House
“A research report identifying service users’ key health and well-being outcomes and exploring service users’ views of the Well-being Star as a means of measuring these outcomes”
Megan Claydon
The University of Liverpool
Sociology (BA)
200773084
May 2014
Acknowledgements
Firstly I would like to thank Sahir House, with a special thanks to Elaine Brown, for allowing me to conduct this research, making me feel at home and really welcoming me into the team;it has been a pleasure to work with you all.
I would also like to express my very great appreciation to David Whyte, my academic advisor, who has offered nothing but his utmost guidance, patience, encouragement and support throughout this research. I would also like to offer my special thanks to all those involved with Interchange at The University of Liverpool and The University of Liverpoolitself for giving me this opportunity.
I would finally like to thank all the participants involved in the research that dedicated their time and shared their views with me, without them this research would not have been made possible.
Table of Contents
Acknowledgements
Executive Summary
Introduction
Background information
The Outcomes Star
Research aims
Methodology
Ethical considerations
Findings
The key health and well-being outcomes for service users of Sahir House
Service users’ response to the Well-being Star
Conclusion and Recommendations
Reference list
Appendix-
Appendix 1- Learning agreement
Appendix 2- Risk Assessment
Appendix 3- Participant information sheet
Appendix 4- Participant consent form
Appendix 5- Invitation for focus group
Appendix 6- Focus group schedule
Appendix 7- Theme table (Key health and well-being outcomes)
Appendix 8- Theme table (Response to Well-being Star)
List of Figures
Figure 1- The percentage of females infected with HIV through heterosexual sex in The North West of England (Bellis et al, 2013)
Figure 2- The percentage of cases of HIV in Merseyside in men who have sex with men between 2011- 2012 (Bellis et al, 2013)
List of Tables
Table 1- Focus group 1
Table 2- Focus group 2
Executive Summary
In recent years, policy-makers, funders and commissioners have begun to use an outcome based focus and approach in performance monitoring (Centre for Social Justice, 2010). Sahir House therefore needs to provide robust data to their funders about outcomes that are normally linked to the differences they make for their service users. There is little research into using the Outcomes Star, a self-help measurement tool which helps track change and progress of a service user over the course of time they spend with an organisation, as a means of measuring outcomes for those living with or affected by HIV. This report provides an analysis of the key health and well-being outcomes for service users’ of Sahir House and explores service users’ views of introducing the Outcomes Star to Sahir House as a means of measuring these outcomes.
The research consisted of two focus groups, one with Black African Women and one with Gay Men service users of Sahir House. Service users’ key health and well-being outcomes and their opinions on introducing the Outcomes Star as a means of measuring these outcomes were explored in the focus groups. All data was then transcribed before a thematic analysis was applied. The research followedthe British Sociological Association Guidelines parts 12, 13, 16, 17, 18, 19, 20, 34 and 36 (British Sociological Association, 2002)and was also approved by The University of Liverpool Ethics Committee.
Once the thematic analysis had been applied, three themes emerged from the data ofthe respondent’s key outcomes of attending Sahir House; these were social support, better health and improved life skills. The transcribed data from respondents responses to introducing the Outcomes Star also presented three themes; drawbacks to introducing the Outcomes Star, changes respondents would make to the Outcomes Star and the benefits and advantages of introducing the Outcomes Star as a means of measuring outcomes for service users of Sahir House. There was a clear divide between the responses from the two focus groups, with respondents ofthe Gay Men’s focus group not supporting the introduction of the Outcomes Star as a means of measuring outcomes and making up the majority of the theme drawbacks to introducing the Outcomes Star. In contrast to this, respondents of the Black African Women’s focus group spoke enthusiastically about introducing the Outcomes Star and expressed changes they would make to the Star if it was to be introduced.
The report concludes that Sahir House has made a difference to their service users in a variety of ways. However, the findings do not show that introducing the Outcomes Star as a means of measuring these outcomes would be effectual. Many respondents recognised that the Outcomes Star would be beneficial in accessing funding for Sahir House; however that does not necessary reflect or meet their individual needs. Along with this there were several changes service users would make to the Outcomes Star,which portrayed the individuality and uniqueness of HIV.
The research begins to fill a gap in the body of research available for introducing the Outcomes Star to the sector of HIV and any implications this may have. However, it is important to acknowledge that this research cannot be generalised to other groups that access services at Sahir House; it is evident that more research needs to be carried out on their views in order to create a better understanding of introducing the Outcomes Star as a means of measuring outcomes for service users of Sahir House.
Introduction
Thisresearch report is part of a project between Interchange and Sahir House. Interchange is a registered charity which links Higher Education with voluntary and community organisations from Greater Merseyside for the purpose of research(University of Liverpool, N.D.). Sahir House is a support, information and training centrewhich offers a wide range of services to individuals and families that are living with or, who are affected by HIV in Merseyside. Founded in 1985, funded entirely by Local Authorities and charitable trusts, including the Big Lottery and Comic Relief,Sahir House recognises the stigma and prejudice surrounding HIV and works in partnership towards a greater understanding of HIV amongst the general public, the media and health and social care professions (Sahir House, N.D.) The project looks at the key health and well-being outcomes for service users of Sahir House and introducing the Outcomes Star to Sahir House as a means of measuring these outcomes.
The charity’s objectives include providing safe, welcoming and accessible services both at the Liverpool base and via outreach across Merseyside. Sahir House offer an extensive range of services including counselling, complementary therapies, psychotherapy, welfare rights, volunteer support, peer groups representative of the demographics affected by HIV (Black and Minority Ethnic people (BME), Gay and Bisexual Men, young people, Women, Men and family and friends), peer mentoring projects, service user development activities, asylum and immigration advocacy, health and well-being support and advice, information services, training services, opportunities to volunteer, volunteer support, social worker support, HIV community nurse support, child and family support and HIV information delivery (Sahir House, 2013).
In recent years, policy-makers, funders and commissioners have begun to use an outcomes-based focus and approach in performance monitoring (Centre for Social Justice, 2010).Regulatory bodies need to ensure that their public spending has been successful in delivering results to guarantee effective and efficient programmes. If policy makers can identify failing initiatives they can shift their spending towards programmes that effectively deliver sustainable, long term outcomes (CSJ, 2010). Due to the commissioners of Sahir House, the regulatory authority that monitors and supervises the organisations activities, signing up to thisoutcomes-based focus and approach in performance monitoring, Sahir House need to provide meaningful and robust data to their funders and commissioners about the impact and differences they make. Effective organisations have the integrity and influence to change the spending decisions of regulatory bodies by presenting the value their efforts have on society (CSJ, 2010). As Sahir House services are service-user led Sahir House want to gauge service users views on the introduction of the Outcomes Star to Sahir House as a means of measuring these health and well-being outcomes. Along with this,Sahir House want to gauge service users views on any changes they may make to the Outcomes Star, and explore the feasibility of the development of a new Star solely for those affected by or living with HIV, which could be used across the whole of the HIV sector as a means of measuring health and well-being outcomes for users. Service users’ subjective views on what they are seeking to change, the desired end point of the change process and the model of change that service users take on their journey towards the end point are vital in ensuring the Star is suitable for its users (MacKeith, 2011).
Background information
HIV is currently the world’s leading infectious killer. It is estimated 36 million people have died so far due to the infection and 1.6 million people died of HIV and Aids in 2012 (World Health Organisation, 2013). The report will identify statistics ofthe prevalence of HIV in the United Kingdomand then move on to look at the prevalence of HIV in the North West of England and Merseyside in particular,as this is where Sahir House is based and its clientele are located. Along with this, the report will give specific details of the prevalence of HIV amongst men who have sex with men and Black African Women as these were the key groups for the research’s focus groups.Following on from this the Outcomes Star will be introduced to the report, giving an overview of the Stars history, how the Outcomes Star works and the benefits of using the Outcomes Star as a tool for measuring outcomes. As there are 22 versions of the Outcomes Star, what version of the Star is most fitting to the sector of HIV and why will be addressed.
HIV- United Kingdom statistics
The number of people living with HIV in the United Kingdom has trebled in the last 10 years (Sahir House, 2013). There was an estimated figure of 98,400 people living with HIV in the United Kingdom in 2012 (NHS Choices, 2012), with an estimated 77,610 people being diagnosed and 21,900 infected but undiagnosed (Public Health England, 2013). Figures show that 67%accessing specialist care in the UK for HIV in 2012 were men and 33% women (National Aids Trust, 2012). It is estimated that two thirds of people living with HIV in the UK are men and a third are women. Over half of all people living with HIV are aged between 30 and 49 (Sahir House, 2013).
Men who have sex with men are the most affected by HIV, with an estimated 41,000 men who have sex with men living with HIV in 2012, of which 7,300 were unaware of their infection (Public Health England, 2013). New diagnoses among Men who have sex with men continue to rise and reached an all-time high of 3,250 in 2012 (Public Health England, 2013). Black African Men and Women were the second largest group affected by HIV in 2012 (Public Health England, 2013). Of the 31,800 Black African men and women living with HIV in the UK, 29,700 cases were male and 34,600 female with an estimated 23% of Black African men and women unaware of their infection in 2012 (Public Health England, 2013).
HIV- North West of England statistics
The Centre for Public Health (2013) suggests that the number of people living with HIV and accessing treatment and care in the North West of England in 2012 reached its highest level ever, with 7,329 individuals accessing services, a 5% increase from the 2011 figures of 6,993 individuals. During 2012 there were 772 new HIV cases presented to statutory treatment centres in the North West of England (Bellis et al, 2013).
The majority of new HIV cases in The North West of England, for whom ethnicity is known, were of white ethnicity (62%), with 37% of cases occurring in minority ethnic groups (Bellis et al, 2013). Black Africans account for 73% of minority ethnic cases, with Black Africans exposed through heterosexual sex making up 25% of all new cases reported in 2012 (Bellis et al, 2013). Of all the females which were infected through heterosexual sex in The North West of England, 20% were white, compared to 68% who were of Black African ethnicity (Bellis et al, 2013). Of the counties in the North West of England, Merseyside has the largest prevalence of HIV positive individuals from Black Minority Ethnic groups (Bellis et al, 2013).
The pattern of HIV exposure amongst people living with HIV in the North West of England differs from therest of the UK. The North West of England has a higher proportion of HIV amongst men who have sex with men, with a figure of 50% compared with the UK figure of 44%. The number of men who have sex with men living with HIV in the North West is at an all-time high, with statistics showing a figure of 3,811 in 2012 (CPH, 2013). Of these 3,811cases, 386 were new to services in 2012, a 12% increase on 2011, where there were 344 new cases (CPH, 2013). There has been a noticeable increase in the number of HIV cases in men who have sex with men in Merseyside, with men who have sex with men accounting for a higher proportion of new cases than heterosexual men for the first time in recent years (Bellis et al, 2013). 47% of cases of HIV in Merseyside in 2012 were men who have sex with men, compared to 21% of cases in 2011 (Bellis et al, 2013).
Figure 2- The percentage of cases of HIV in Merseyside in men who have sex with men between 2011- 2012 (Bellis et al, 2013)
The North West of England also has a lower proportion of individuals infected through heterosexual sex, with 41% contracting HIV through heterosexual sex compared to the National UK figure of 45% (Harris et al, 2013). The proportion of individuals exposed to HIV through the receipt of contaminated blood in the North West of England is approximately one third higher than the national figure (Harris et al, 2013). There has also been a 25% increase in the past 5 years of the number of individuals accessing services at a late stage of HIV (being seen at North West services for the first time with symptoms of HIV), with a 75% increase in men who have sex with men accessing services late (CPH, 2013).
It is evident from the figures shown above that the prevalence of HIV is growing, especially in the percentage of cases in men who have sex with men and Black African women and men. This is a challenging matter that needs accommodating for. As Sahir House is a support, information and training centre which offers a wide range of services to individuals and families that are living with or, who are affected by HIV in Merseyside (Sahir House, N.D.), the effectiveness of the organisation and its response to the increasing figures of HIV needs to be examined.
The Outcomes Star
The Outcomes Star is a way of measuring outcomes and supporting and measuring change when working with people. The Outcomes Star was designed, developed and launched over a four year period from 2002-2006 by Triangle Consulting Social Enterprise (Triangle Consulting Enterprise Limited, 2009). Triangle suggest through research that despite policy shifting to services being outcomes-focused and commissioning becoming outcomes-based, tools for measuring outcomes were limited and service providers did not favour existing outcomes focused tools (MacKeith, 2011). For this reason, Triangle began developing the Outcomes Star as a means of supporting and measuring change when working with people (MacKeith, 2011).
History of the Outcomes Star
The first version of the Outcomes Star was developed over a four year period from 2002-2006. St Mungo’s, a London based homeless organisation commissioned Triangle to create an outcome measurement system which would work across all of their services from outreach to floating support (Triangle Consulting Enterprise Limited, 2009). The Star was piloted at St. Mungo’s, and then tested and revised in a variety of other homeless organisations including Thames Reach, The Passage and The Single Homeless Project as part of the London Housing Foundation’s Impact through Outcomes Programme. The work from all of these agencies were collaborated together to create the first Outcomes Star for Homeless which was then published by the London Housing Foundation online in 2006 (MacKeith, 2011).
The Outcomes Star began to be recognised in other sectors and it emerged that it was applicable for other services (Triangle Consulting Social Enterprise Limited, 2009). This resulted in other versions of the Outcomes Star being developed for other sectors, starting with the Mental Health Recovery Star which was developed in collaboration with Triangle and the Mental Health Providers Forum (MacKeith, 2011). There are currently 22 versions of the Outcomes Star for a wide variety of organisations to use with service users. Triangle collaborates with funders, service providers, commissioners, universities and sector umbrella bodies’ world–wide to develop support and research the Star. These include the Department of Health and the Big Lottery Fund (Triangle Consulting Social Enterprise Limited, 2009).
How the Outcomes Star works