Editorial: A Call to Action—Voice and Influence of People with Experiences of Social and Health Care in Social Work Knowledge and Social Services

During the recent International Federation of Social Workers’ (IFSW) Seminar Series on Social Work and political conflict,¹ Dr Ana Radulescu, the newly appointed IFSW Global Vice-President, spoke about her work with the Ukrainian refugees in Romania. Highlighting the difference between the emergency humanitarian interventions and those of social workers working with the refugees in Romania, she provided an example of support provided by social workers to an unaccompanied female teenage refugee. The work started with two activities. First, a social worker listened to the young teen and her experiences. Second, they asked her, ‘What do you need?’ The work begun with a clean slate, building on the wishes and needs of the young person in need of support, and in partnership with her.

In social work practice, practitioners seldom start with a ‘clean slate’. We aim to build a relationship with each person, group or community whose needs may be met through access to health and social care services. However, our work in most contexts across the globe already takes place with the practitioner’s awareness of the (diminishing) resources and the (limited) existing services which frame, guide and/or represent their work. There are also the pressures of ever-increasing caseloads for each practitioner.

Major and extreme crises—such as political conflict, influx of refugees or displaced people, natural disasters—represent rare occurrences where our work starts at the margins or outside of the boundaries of existing resources and frameworks. We start from scratch and build a new, with limited resources, creativity and lateral thinking. Most importantly, the work is predominately built through partnership with people who require support. We navigate the limited resources and the chaos around us, together.

This, however, doesn’t translate into social work knowledge. A review of the limited existing research on social work and political conflict suggests that most of it is developed and focused on experiences of social workers, rather than experiences of people requiring or using social services (Maglajlic, 2022). Similar happens to be the case with this Issue of the Journal, which mainly builds on the practitioner or expert perspectives within the profession. During the preparation of the issue, this led to a critical reflection on how much this may be the case beyond the boundaries of this Journal. How much of social work knowledge is based on the experiences and views of people who have experience of health and social care as service users and/or carers, rather than practitioners, managers or other professionals and/or experts?

To inform this reflection, we conducted a very quick review of the articles published in the 2021 volumes of four social work journals ranked amongst the top twenty social work journals on Scimago, namely, ‘Journal of Marriage and Family’, ‘Health and Social Care in the Community’, ‘Journal of Social Work’ and ‘British Journal of Social Work’. The content and the target audiences of the four Journals vary. Although not rigorous, the review indicates that approximately 80 per cent of the articles published in the ‘Journal of Marriage and Family’ focus on the analysis of the existing survey, demographic and service data sets from different countries as well as broader family and parenting practices and experiences.² Nearly 50 per cent of the articles published in the ‘Health and Social Care in the Community’ are based on primary research where people with lived experience of (predominately health) care, conducted in the research tradition and methodology which is common place in health services.³

This number is far lower for the generic social work Journals, such as the ‘Journal of Social Work’ and the ‘British Journal of Social Work’. In both Journals, just over two-third of the published articles (excluding book reviews) are based on the primary research, with approximately the quarter of all articles in the 2021 Volume based on primary research with people with lived experience of health and social care are study participants.⁴ In the remaining three quarters of the published primary research in the 2021 Volumes of both Journals, study samples are comprised of practitioners, managers, experts or, in the minority of cases, a sample of the general population. Only one study amongst those reviewed across the four journals focused on the social work identity or role sought views of service users, as well as practitioners and managers, namely, the Yang et al. (2021) study on professional identity construction amongst social work agencies in China. Similarly, a review of literature on the role of mental health social worker within community mental health teams for working age adults by Boland et al. (2021) also notes that the role is predominately defined from a professional viewpoint.

There is a growing research and policy impetus to ensure meaningful collaboration and co-production with people with lived experience in health and social care (see, e.g. Fisher et al., 2018; Biddle et al., 2021). However, the 2021 Volumes of the four reviewed Journals, except for the British Journal of Social Work, hardly published any studies which include collaboration or co-production with care experienced individuals, communities or researchers throughout the research process.⁵ The number of articles published in 2021 which include such collaboration is still well below 5 per cent of the overall published articles in the four reviewed Journals.

Where used, the choice of the research paradigm is influenced by the authors ‘insider knowledge’ and experiences and professional values, such as the Borenstein et al. (2021) critical participatory study exploring formal kinship care in Victoria, Australia, conducted with service users and practitioners. The authors note that their methodological choices are based on their ‘personal experience as a carer and service user in another system, and professional orientation as a social worker’ (ibid., p. 747). The authors stressed how the chosen critical and participatory approach helped them to create nuanced knowledge on the complexities related to the experiences of formal kinship care—something required and longed for by people who use services and practitioners alike.

Such examples also emphasise the importance of long-standing, rather than ad-hoc partnerships. One example of this is an article by Mann-Jackson et al. (2021) utilised community-based participatory research within a long-standing partnership of community members, community organisation representatives and academic researchers. Within the partnership, they conducted a community-driven needs assessment to inform an intervention aimed at addressing STI/HIV disparities and social determinants of health amongst the young gay, bisexual and other men who have sex with men and transgender women of colour in North Carolina, USA. Beyond rare studies which explore experiences of a particular group of people based on their sexuality, gender, disability, ethnicity or race and in a particular local context, such demographic data seem to be seldom sought or considered in social work research with the broader population of service users, carers, practitioners, managers, experts or decision-makers.

The review of four social work Journals is far from comprehensive and the reasons for the paucity of primary research or greater and more democratic engagement with the service user and carer experiences can be many. The Covid-19 pandemic impacted the knowledge production. Researchers in some countries also face complex and multiple ethics procedures and pressure to either obtain funding or conduct small scare studies which are easier to manage through direct engagement with social workers. Equally, it is important to create the evidence about the complex and difficult work conditions social workers face (Ravalier et al., 2021).

Building knowledge for policy and practice based on service user and carer experiences is far from straightforward (for a good reflective analysis in relation to adult safeguarding, see Sherwood-Johnson and Mackay, 2021). MacKinnon et al. (2021, p. 888) highlight how research co-production or other forms of engagement of researchers with lived experience is often ‘lauded for: “democratising” the research process; providing “capacity building” and facilitating opportunities to coproduce knowledge’. The study presented in their article aimed to evaluate such claims through ‘empirical investigation into the socio-material work conditions of peer researchers’ (ibid.), conducted by peer researchers as the project research assistants. Echoing the work conditions of research-only staff in general, their findings highlight the precarious working conditions of people with lived experience who work as social work researchers. The authors note that, on the one hand, such conditions ‘amplify rather than challenge injustice’ (ibid., p. 899), but also may be preferable if they don’t disrupt other forms of material support people with lived experience receive, in parallel to their role as peer researchers.

Whilst such challenges need to be thought through and navigated with due concern for ethics and care, social work knowledge present and future needs to build on the experiences of people with insider knowledge of health and social care beyond social work practitioner experience alone. If social services are to both meet the needs of local populations and retain social work staff, they need to be shaped by the knowledge generated with people who they are expected to serve. A qualitative study exploring stakeholder views on developing pharmacist-facilitated medicines review services for community-dwelling Māori older adults in New Zealand, led by a Māori pharmacist, Dr Joanna Hikaka (Hikaka et al., 2021). This approach assumes the right of Māori people to participate in service development and research, privileging Māori knowledge with an aim to create positive and transformative change for the Māori (Curtis, 2016; Pihama, 2010; Smith, 2012, in ibid.). The approach also acknowledges and aims to redress the existing power and control relationships embedded in the knowledge production (Smith, 2012, in Hikaka et al., 2021). It is hoped that the future social work knowledge production will embrace an approach which echoes ‘Kaupapa Māori’, privileging experience and knowledge by people with lived experience of health and social care.

Footnotes

1

https://www.ifsw.org/continuous-professional-development-international-short-course/ (accessed May 25, 2022).

2

Overall number of articles assigned to the 2021 Volume of the ‘Journal of Marriage and Family’ (excluding book reviews): 84. Number of articles based on primary research studies published in the 2021 Volume: 17 (20.24 per cent of the total number of articles published in 2021 Volume, excluding book review), as studies are predominately based on the analysis of the existing survey, demographic and service data sets from different countries. Number of primary research studies published in the 2021 volume where people with lived experience of health and social care are study participants: 3. Studies focused on the broader family and parenting practices and experiences, without focus on their engagement with health or social care services; see in-text details regarding the León-Pérez et al. (2021), O’Neal and Mancini (2021) and Straut-Eppsteiner (2021) participant recruitment.

3

Overall number of articles assigned to the 2021 Volume of ‘Health and Social Care in the Community’, excluding book reviews: 228. Number of primary research studies published in the 2021 Volume: 179 (78.51 per cent of the overall number of articles published in the Volume). A section of each Issue focuses on different types of reviews. Proportion of the articles also is based on the analysis of the existing data sets. Number of primary research studies published in the 2021 Volume where people with lived experience of health and social care are study participants: 112 (49.12 per cent of the overall number of articles published in the volume). This number (112) excludes any articles on health care use within general population. It does include studies which utilised observation of practice as a research method, either solely or within a mixed-methods approach.

4

Journal of Social Work – Overall number of articles assigned to the 2021 Volume: 77. Number of primary research studies published in the 2021 Volume: 51 (66.23 per cent of the total number of articles in the Volume, excluding book reviews). Number of primary research studies published in the 2021 Volume where people with lived experience of health and social care are study participants: 18 (23.38 per cent of the total number of articles in the Volume, excluding book reviews). British Journal of Social Work – Overall number of articles assigned to the 2021 Volume: 175. Number of primary research studies published in the 2021 Volume: 116 (66.29 per cent of the total number of articles in the Volume, excluding book reviews). Number of primary research studies published in the 2021 Volume where people with lived experience of health and social care are study participants: 46 (26.29 per cent of the total number of articles in the Volume, excluding book reviews).

5

Number of the primary research studies published in the 2021 Volume of the four reviewed Journals which enable people with lived experience of health and social care to shape the study design, data gathering, analysis and/or dissemination: Journal of Marriage and Family: 0; Health and Social Care in the Community: 2 (0.88 per cent of the total number of articles published, excluding book reviews); Journal of Social Work: 1 (1.30 per cent); British Journal of Social Work: 8 (4.57 per cent).