Theorising Social Work Research
Social Work:Who owns the research process 20th September 1999, Belfast Peer research :involving young people leaving care as peer researchers project: lessons learnt Bob Broad Reader in Social Work Studies, Department of Social and Community Studies, De Montfort University, Leicester Chair of the Social Work Research Association This article specifically describes the significant methodological issues arising from a research project entitled The Health Needs of Young People Leaving Care (Saunders and Broad, 1997) to which readers are referred for the full research findings of that project (1).
Background to the study
In 1992 the government launched 'The Health of the Nation' (Department of Health, 1992) to create a balance between curing illness and promoting health by setting out a strategy to meet key targets within a specified time frame. Three years later, in 1995, 'The Health of the Young Nation' initiative re-presented some of these initial targets with a particular focus on young people. Soon after, the Mid-Surrey Stepping Out Project (hereafter called 'the leaving care project') carried out an informal assessment of its clients' health needs. On the basis of provisional and worrying statistics indicating that 65 per cent (n=66) had unmet specialist or general health needs, a successful funding application was made to the East Surrey Health Authority Health Gain Fund to explore the health needs of young people leaving care in Mid-Surrey in greater depth. De Montfort University was commissioned to undertake the research.
Research aims and management
The main aims of the research were to identify the met and unmet health needs of young people leaving care, to explore the health experience of young care leavers and to suggest ways in which health service provision to this group may be improved.
Within these aims, the specific objectives were:
- to involve a group of young people leaving care as members of the research steering group
- to develop, with young people, a health needs interview schedule for use with their peers;
- to train a group of young care leavers as peer interviewers;
- to carry out a survey of young people leaving care in the mid-Surrey area who were involved with the Stepping Out Project, either as current or recent clients;
- to produce a profile of the care leavers involved in the study for comparison purposes;
- to identify the health needs, both met and unmet, of young people leaving care, as well as the strengths and weaknesses of health service delivery to this client group;
- to identify the benefits and drawbacks of young people's participation in the research process;
- to make recommendations to improve the delivery of health services to young people leaving care.
Beresford and Croft (1993) have written extensively about involving users more in all aspects of social service planning and delivery. In 1990, for example, Beresford and Harding produced a comprehensive report on the nature, extent, and influence, of user participation in policy and practice in voluntary and statutory agencies, mapping out the progress made as well as the untapped potential for greater involvement. Alongside this continuing interest in identifying, clarifying, and co-ordinating 'users' concerns there have been signs that the involvement of users in the research process, beyond being passive 'subjects', is also a growing area of interest.
Users' involvement in research, and the various forms it can and might take, has tended to concentrate on certain vulnerable groups, namely: people with learning difficulties (for example, Sample, 1996; Simons, 1994), people with mental health problems (Nettle et al., 1993), elderly people (Tozer and Thornton, 1995), and children and young people (Hayden, 1994; Hill, 1997). With some notable exceptions, for example Barnes (1990) and Mullender et al. (1994), the call for user involvement in research has mostly focused on these particular groups. Barnes (1990) argues that the research process should change the balance of power between service users and providers by creating a different type of relationship between the researcher and research 'subjects'. Lloyd et al. (1996) found that issues of power, expertise, authority and accountability, which applied as much to the research process as to greater user involvement in service planning, emerged as recurrent themes in their examination of the practice of partnership.
In relation to involving children and young people in research, and the issues that such involvement raises or could raise, guidelines have been produced by the National Children's Bureau (1993) on conducting research which involves children. These follow on from the British Sociological Association's ethical statement, with additional suggestions emphasising, for example, the duty of researchers to pass on disclosures of potential 'risk of significant harm' to a professional who can take the necessary steps.
The limited literature on the most suitable research methods for involving users emphasises, unsurprisingly perhaps, more qualitative research methods and approaches. Cocks and Cockram (1995) advocate a participatory research paradigm as a powerful and liberating strategy for delivering meaningful services to people with disabilities. This can include peer interviews (Saunders and Broad, 1997), participatory research (Cocks and Cockram, 1995; Sample, 1996; Ritchie, 1996), anti-discriminatory research (Broad, 1994), and group research (Walmsley, 1990). There have been a number of approaches in relation to research and development with children. Berridge and Wenman (1995), for example, describe how they worked with residents in a children's home to help recruit a researcher prior to the research being undertaken. In the health research initiative described here a social action approach to research was employed involving young people leaving care (Saunders and Broad, 1997).
The literature about children and research has mainly concentrated on issues concerning younger children: in the ESRC research initiative 'Growing into the 21st Century', for example, the term children referred to 5-16 year olds rather than to young people (Prout, 1997). Indeed, the latter term is not always consistently defined, although it is often taken to describe a post-school period from sixteen or eighteen years up to 21 or, increasingly, to 25 years of age (now often the extended upper age limit for youth clubs and associated activities). Morrow and Richards (1996:103) point to three important issues that require special consideration when actively involving children in research. These can also apply to young people:
- because children's competencies are different, this has implications for the consent process as well as data collection methods and interpretation;
- children are potentially vulnerable and adults must fulfill their adult responsibilities;
- at data interpretation stage, researchers have the power to interpret data in any way they see fit.
Children can give a lively and accurate account of their condition and should be heard by adults, particularly by health professionals who might help them cope in a more enlightened way (1996:162).
Research method, strategy and process
Here the study was both exploratory and evaluative, in that it sought to clarify the complex issues and processes involved in identifying the health needs of young people leaving care, as well as to explore the benefits and drawbacks of involving young people in that process. The primary target group was 50 local authority care leavers, aged between 16 and 25 years of age, in the transition from care who had been in contact with the leaving care project. In the event 48 young people were interviewed, a result of the researcher's considerable efforts and the young people's commitment to the research project. Pinkerton and McRae have also involved young people leaving care, to complete their own 'outcome' interviews (1999: 34) as part of their wider research study about young people leaving care in Northern Ireleand, and pointed to the practical difficulties of contacting many of these young people to conduct these interviews. In this Surrey based project it was envisaged at the outset that young people would be involved as both steering group members and as peer interviewers. Some young people had been involved in the research development stage through the user consultative group, where they had argued strongly that peer interviewers would be able to access much more comprehensive and detailed data than yet another 'professional'. The researcher was also interviewed by a young person, although it was never quite clear whether the researcher would have been rejected had the young person found her unacceptable. There was a somewhat belated attempt to involve young people in the analysis stage, but the lack of planning from the outset meant that this proved impossible within the research resources and timescales, as did their inclusion in the writing of the report. Sadly, their main involvement in these two stages was some preliminary input in developing a framework for the analysis, and an opportunity to comment on the draft report. If similar work was to be undertaken in future, these two aspects would need to be considered much earlier on.
Two main data gathering methods were used in the study. Focus group interviews were undertaken in the early stages with the young people in the research team to identify areas to be covered in a health needs questionnaire and, later on, to explore the effects of young people's involvement in the study. A 20 page interview schedule was drawn up based on the early focus group information and additional input from the young interviewers during training. The main data was obtained from confidential and anonymised peer interviews. Arranging these interviews proved to be complex and time consuming, as did, at least initially, the recruitment of young people for the research team.
Early plans were to recruit six women and four men to the interview team to give each interviewer five interviews. That ratio reflected the proportions of young men and women working with the leaving care project, the main source of interviewees. This enabled 'same-sex interviews' to be offered, an important consideration given the likely personal nature of the interview and the histories of potential participants (see Hill, 1997). Interviewer/ interviewee matching was undertaken on pragmatic grounds including availability, age and sex preferences, geographical location, availability of transport and evenness of distribution across interviewers. A further five young people were recruited to the research steering group to allow a balance between professionals and young people, to avoid tokenism and to encourage young people's ownership of the research. The mechanism for recruitment was an information flyer which was circulated to 76 young people who were currently working, or had recently worked, with the leaving care project. It described the requirements for steering group members, interviewers and interviewees and set out rates of pay for all aspects of the work.
In the event 14 young people were invited for interviewer training as members of the research team. The training had four elements: to develop young people's interview skills; to develop a model of health which would provide a framework for understanding the health needs and priorities of young people leaving care; to design a structured health needs questionnaire for use in one-to-one peer interviews and finally to develop a mutual support network among interview team members.
Training methods used were primarily small (3-6 people) and large (12-13 people) experiential and discussion groups. Initial plans were for two full day and three half day sessions. Of the fourteen young people selected for training only thirteen were able to make the compulsory two full day sessions. After these two days, however, it was recognised that three further half day sessions would be insufficient to build up the young people's confidence in their ability to do the work. One of these sessions was therefore replaced by an individual session for each young person, with the researcher and a health promotion worker. A second young person dropped out of the training at this individual session stage. To avoid the possibilities of fragmenting the team spirit that had built up during the first two days, the two final half day meetings were replaced by a full day session. The training thus took the form of three full group days and one half day individual session over a period of just over two months.
Days one and two focused on team building, practising interviewing skills, developing a model of health and identifying the questions to be asked. The one-on-two sessions offered each member of the interview team an opportunity to practice a 'real' interview with one of the health promotion workers, become comfortable with the structure and form of the draft questionnaire, comment on any problems with the questions, receive individual feedback from the researcher about performance, talk over with the researcher and a health promotion worker any anxieties or concerns, and give the researcher information about preferences in relation to the practicalities of interviewing, for example availability, sex of interviewees, and preferred venues. The third and final day focused on shortening the interview, team building, support, personal safety, payment, resources, and confidentiality. At least one of the trainers/ facilitators was available at all times during and immediately after the sessions for anyone needing to talk things over privately.
A first draft of the interview schedule was produced by the researcher after the second training day. Interviewers were invited to comment on the draft during their individual sessions, and again on the final training day. In addition, the schedule was piloted on a young person who had not been involved in the project development, and circulated for comment to project staff, the health promotion workers and the research supervisor. A second draft was piloted and subsequently amended. The interviews were divided into six main sections covering personal details, practical issues, emotional well-being, physical health, social relationships and mental health. Whilst the questions were largely open-ended, there were a few closed ones, two of which focused on determinants of health and were central to the survey analysis.
Research findings- key issues
Compared with the general young population of Surrey (Bradford et al., 1995) the young care leavers' responses in relation to physical health, mental health and lifestyles, suggest that the seeds of post-care ill health were sown whilst the young people were in or leaving care or, if sown prior to being placed in care, were exaggerated by the care process itself. For the majority the effects of being in care were alarming, creating stress and insecurity and prompting various responses including drug taking, depression, and ill health. High levels of movement between placements undermined the young peoples' ability to form effective social, educational and emotional networks. A lack of understanding at school about their situation, combined with low expectations by teachers made this situation worse.
Basic 'survival measures' of maintaining satisfactory social relationships and meeting the daily demands of life with very little financial support were of a significantly higher order of importance than physical health issues, such as acquiring healthier eating habits or drinking less. In terms of emotional health, the feelings of isolation and unhappiness arose from living alone in unsatisfactory accommodation, often with no money, no work, minimal if any support, and little prospect of improvement in their circumstances. It seems the young people felt that the immediate short-term emotional gain, satisfaction or benefit of not living as healthily as they might, outweighed their objective knowledge about the negative long-term consequences of certain less healthy activities (excessive drinking being one example).
Improvements in the provision of emotional support from social care staff at the time the young people are leaving care and changes to the perceived unhelpful attitudes of professionals in the mental health services are highlighted as being of significant importance. Both sources of support were highly valued when available and responsive.
Involving young people as peer researchers
The young people highlighted a number of areas for improvement and learning in terms of future peer research. These concerned training and support issues, and other practical matters such as interview venues and child-minding. Certainly more time could have been usefully spent on the training and development stages of the study. Specifically the young interviewers would have appreciated more training on controlling the interview, keeping people focused and probing techniques to get people to open up more. They also felt that the training should have addressed the issue of confidentiality in a more in-depth way than was the case. This was experienced as problematic, especially in relation to interviewee reports of abuse in care which interviewers had not always noted on the questionnaire nor discussed with the researcher in the debriefing session. Training or preparation for coping with the after effects of interviews would also have been helpful.
Conducting interviews was experienced by many as a huge responsibility. In terms of support, all interviewees were given a resources sheet at the interview listing organisations and telephone numbers that they could contact for advice, assistance and support. Although all were offered support from the project if they needed help or if anything arose from their participation, many interviewers felt that this was not enough. They felt badly about bringing up the past and then leaving people, and thought that a counsellor should have been provided. Interviewers felt responsible for interviewees who became upset, and wanted to ring them later to see how they were. They felt frustrated at not being able to help people with their problems or situations, and did not know what to say to some people to support them. Moreover, some of the things the interviewers were told affected them, brought certain things up for them, and they found it hard just to swallow their feelings and carry on. A formalised, rather than ad hoc, approach to dealing promptly and honestly with problems arising during or after the interview would be helpful.
Critical practical learning points included the securing of more appropriate private space to conduct interviews and, again, systematic de-briefing and support systems. Sub zero temperatures, interviewer/interviewee nervousness and/or compassion, and a need for someone to occupy the occasional infant, meant that in some cases the researcher was in the room whilst the interview took place.
In terms of the consequences of the peer approach the involvement of young people as peer researchers and steering group members undoubtedly resulted in the research being more 'user' than commissioner led, with a resultant emphasis in the recommendations on agency 'should-do-more/must-do-better' conclusions rather than users' behaviour/lifestyles. There was a real temptation at the writing up stage for the researcher to streamline the recommendations, to adjust the young people's ideas into a framework that would lend itself to a clear and feasible implementation structure. There was pressure too to include ideas from other sources. However, integrity prevailed in the sense that the report presents the views of the young people, in their own words. Yet this may produce a measure of conflict at the implementation stage. In China the word for conflict is made up of two characters - danger and opportunity. If the professionals can hear the passion and creativity behind the apparently naïve words of the participants, then perhaps they can seize the opportunities offered in working with young people, rather than sensing the threat and turning away from meaningful change.
Concluding comments about peer research
As Morrow and Richards (1996) acknowledge there are general issues when involving children (or indeed young people) which are similar to research with other groups. These are concerned with devising appropriate ways of collecting data, drawing up appropriate and honest ways of analysing and interpreting data, disseminating findings and protecting, in the sense of anonymising, the identity of the research participants. Here the young people involved in the research proved themselves thoughtful, articulate, creative, sensitive, resourceful and, surprisingly, hopeful. Yet we cannot escape the fact that this sort of peer research has both benefits and costs.
The key benefits of conducting peer research
The research team considered that the range and quality of the data, specifically its relevance and reliability, was enhanced by peer research. The young people felt that certain people had been more truthful than they would have been with a 'professional researcher'. By involving young people in the interview schedule certain subject areas and nuances (for example the way services were accessed and received) were brought in which might otherwise have been overlooked. Moreover the involvement of peer interviewers and the payment for participation meant that no-one felt used or thought that others were used. Another important benefit of peer research is that when users feel a sense of ownership and conviction about the research, presentations by them, at conferences or to local agencies/authorities, are very persuasive. At an individual level the interviewers welcomed the opportunity to have something to do, to meet different people, and found it valuable to concentrate on someone else and forget about themselves. They saw the point of the research, and felt they were contributing to changing things for the better. They were encouraged by seeing people 'getting on' and challenging the generally poor public image of care leavers. Another benefit of peer research, at least in the way it was conducted here, is that the users' were paid for their input, and possibly gained kudos as a result of their membership of the research team.
Looking at the wider picture about peer research itself, it can, to coin a phrase, 'reach parts which other research does not meet'. This specifically refers to the wide(r) range of subjects which social researchers can cover through peer research, with its in-built consultation, peer review and checking mechanisms. Peer research not only accommodates but facilitates subject diversity in research, rather than subject familiarity. Potentially the peer research approach opens up more subject areas to those researchers who adopt the role, not of expert, but of participatory-facilitator as well as researcher.
The costs of conducting peer research
There is a range of costs of learning to do this sort of research with the accompanying role ambiguity and uncertainty such learning involves. Briefly, these are:
- the emotional costs to the researcher (what do I do with the information/the feelings?) can be quite considerable as young people's troubled stories are told again and again;
- the emotional costs to the young people arising from the disclosure of private/personal information (the experience might be cathartic or, more usually, bring up painful memories);
- the financial costs of conducting peer research. A research budget which includes the additional costs of conducting peer research (training etc.) needs to be drawn up;
- it takes longer to train, recruit, and supervise young peer researchers, to maintain integrity, standards and consistency;
- peer-led recommendations, however discreetly put, for 'more improvements now' from service providers, may make the agencies concerned defensive, possibly fuelling fears that research findings will be used against the project(s) involved in some way.
(1) A full report of this project can be obtained from the Centre for Social Action, De Montfort University, Leicester, or the RPS Rainer, Kent, or East Surrey Health Promotion, Epsom. An earlier version of this article was published in the journal Research, Policy and Planning 16 (1) (1998) 'Involving young people leaving care as peer researchers in a health research project: a Learning experience' by Bob Broad and Lesley Saunders.
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