Independent Advocacy Services Research Articles

The Fundamentals of Advocacy: Designing an online learning course for health and social care staff

Abstract Background The Health Information and Quality Authority (HIQA) develops national standards for health and social care services and tools to assist with implementation. In 2023, HIQA developed resources to help health and social care staff support advocacy in their work. This followed a recommendation of the COVID-19 Nursing Homes Expert Panel Report (2020). As this project is founded in human rights-based practice and in lessons learned from COVID-19, it is relevant across health and social care. Objectives We wanted to know: 1. the barriers to advocacy in health and social care services; 2. how best to address this. We found knowledge and understanding of advocacy to be a significant barrier, and therefore developed an online course. The course was informed by focus groups with health and social care staff, service-users and inspectors, and by user-testing. The objectives are that learners understand: • what advocacy is • the role of health and social care staff in advocacy • how to support people to have their will and preference met • the boundaries of their role as advocates, including any conflicts of interest • how to raise awareness of independent advocacy services, and when to support people to access these services. The course includes case studies, interviews and self-assessment. We are measuring impact through surveys, interviews and focus groups. Results Through stakeholder engagement and a review of evidence we identified knowledge and understanding as a significant barrier to advocacy. Since the course was launched in April 2023, 90% of participants report that, based on the course, they will make changes to the way that they work. A selection of these participants will be interviewed after six months to measure impact. Conclusions Our research identified a need to improve knowledge and understanding of advocacy among health and social care staff. The course evaluations to date have shown that the course has achieved this. Key messages • There is a need to improve knowledge of advocacy among health and social care staff. HIQA has developed an online learning course to address this, informed by extensive stakeholder engagement. • Advocacy is about supporting and empowering people to communicate their will and preference, secure their human rights, or represent their interests.

Treating Vulnerable Consumers ‘Fairly’ When They Make a Complaint About Banking or Finance in Australia

The Australian Financial Services Reform Act 2001 (Cth) requires that licenced banking and financial services providers establish internal dispute resolution (‘IDR’) systems complying with requirements promulgated by the Australian Securities and Investments Commission (‘ASIC’). In addition, licence holders are required to be members of an ASIC approved External Dispute Resolution (‘EDR’) scheme so that if a complaint is not resolved following the use of internal mechanisms, an external dispute resolution facility is available for most banking consumers. In late 2018, a new EDR body was established, the Australian Financial Complaints Authority (‘AFCA’), to deal with external complaints. The 2018 Royal Commission into the banking and finance sector uncovered significant issues in terms of the banking and financial sector and raised a number of serious concerns that were largely linked to how consumers contracted with banks and other organisations however information about existing complaint handling arrangements was limited. In particular, there was little demographic information about consumers who use IDR and EDR arrangements or what factors may be relevant in terms of the settlement of complaints and disputes. In this regard, currently sections 912A(1)(g), (2) of the Corporations Act direct the form of AFSL holders’ IDR and EDR systems, but they do not impose any obligations on AFSL holders in terms of conduct when providing the systems. In terms of consumers more generally, it is unclear how many consumers could be classified as ‘vulnerable’ and may settle a dispute on less favourable terms because the impact of proceeding may place them in an even more disadvantageous position. It is suggested that better reporting in relation to IDR and EDR activity together with targeted independent advocacy services and training of relevant staff in respect of the Australian Consumer Law could assist consumers and enable more effective reporting of misconduct issues.

The Role of Advocacy in children's palliative care

‘Role of advocacy in Irish Children’s Palliative Care. What would parents of children with life limiting conditions like?’ Introduction: This presentation will highlight the role of advocacy in children’s palliative care (CPC) and share findings from an Irish small scale parent survey. Recent Irish prevalence figures of 3,840 life-limited children in Ireland published by Ling, O’Reilly, Balfe, Quinn and Devins Oct (2015), infer there must be a need for the role of formal CPC family advocacy within this growing population. The literature helped to inform the design of a survey to identify if Irish parents wish for both formal and informal independent advocacy services in children’s palliative care. The definition of advocacy within CPC is ‘Promoting the concept that care of babies, children and young people who are life-limited should include services, therapies and medicines that will reduce pain and suffering and encompass all their physical, social, emotional and spiritual development needs and that of their families, allowing for the best quality of care.’ (ICPN? date) Research Aims: Previous literature on advocacy (O’Connor & Gwyther 2014 and Shockney 2010), focused mainly on the nurse as the primary advocate for terminally ill children. Yet Simms and Cole (2007), highlighted the role parents can play as advocates for their own children. The Omega Journal of Death and Dying (2015) noted qualitative studies with mothers of severely ill children and how parents became informed and helped others to advocate for their children. Meeker (2004) explored the use of a family surrogate (someone to objectively make decisions/speak for the family) in decision making and Schafer (2006) took the perspective of patient autonomy and family-based decision making. Martin (2013) stresses the advocacy barriers and missed opportunities in the delivery of palliative care and Seal (2007) explains the role of patient advocacy in Advance Care Planning. Also, Turner (2010) and Whitty Rodgers et al (2009) highlight ethical dilemmas in relation to advocacy of a child’s best interests when in conflict to parental preference. This presentation presents the findings from a small scale exploratory survey conducted with parents to explore the requirements for formalised and informal advocacy services for children with LLC and their families. Study Design: A randomised sample of 10 parent respondents who had children with LLC. The data was analysed thematically. Ethical approval was not required as the survey was exempt under service evaluation/ improvement criteria. Statements utilised within this evaluation included for example: ‘I feel listened to about my child’s care needs’. ‘I feel very informed about palliative care. I feel equipped to promote all necessary care and services for my child’. Scale of ‘Fully Agree –Fully Disagree’. Results: Results demonstrate the appetite for advocacy in this field and how the views of parents and families warrant the future design of informal and formal advocacy services within Irish children’s palliative care.

Independent advocacy services for looked-after children and young people: evidencing the impact

This article considers the data collection practices of voluntary sector advocacy organisations and the impact that poor recording of referral and outcome information can have on the future of independent advocacy services for looked-after children. The article draws on research conducted by the author exploring the characteristics of young people using voluntary sector advocacy services. The study involved the collection of information from 11 voluntary sector advocacy organisations during the year April 2010 to March 2011 on the young people using their independent advocacy services. While the data provided gives some important information, a lack of systematic recording by organisations meant that we were unable to get a detailed picture of service use and effect. The article argues that a lack of available evidence may hamper the long-term future of this important area of voluntary sector support for looked-after children.

Conflict of roles: A conflict of ideas? The unsettled relations between care team staff and independent mental health advocates

Drawing on a national study of independent mental health advocacy, we explored the social relations of independent advocacy. The study was commissioned by the Department of Health (England), and involved a case study design covering eight different geographies and service configurations, and interviews or focus groups with a total of 289 stakeholders across two phases of inquiry. This paper focused on the analysis of qualitative data relevant to the relationship between mental health-care services and independent advocacy services, drawn from interviews with 214 participants in phase two of the study. Discussion of these particular findings affords insights into the working relations of independent advocacy within mental health services beset by reorganizational change and funding cuts, and increasing levels of legally-sanctioned compulsion and coercion. We offer a matrix, which accounts for the different types of working relationships that can arise, and how these are associated with various levels of understanding of independent advocacy and appreciation for the value of advocacy. The discussion is framed by the wider literature on advocacy and the claims by practitioners, such as nurses, for an advocacy role as part of their professional repertoire.

Advocacy, Social Justice and Children's Rights

The emergence of independent advocacy services for children and young people has had an impact on promoting the rights of children and young people. Historically, advocacy has been considered an important social work skill underpinned by principles of human rights and social justice. However, the development of independent advocacy and changes in the delivery of health and social care services have had an impact on how far social workers now feel able to directly advocate for service users. This paper interrogates the tensions faced by social workers in managing their advocacy role through a discussion of advocacy in relation to children and young people. By examining the concepts of ‘best interests’ and the welfare of the child the paper considers dilemmas for social workers committed to advocating for children and young people. It argues that if principles of social justice are to be upheld practitioners need to actively consider ways to reclaim a culture of advocacy.

'The Tip of the Ice Berg': Children's Complaints and Advocacy in Wales--An Insider View from Complaints Officers

This paper is based on findings of a Welsh Assembly Government funded review of children’s independent advocacy services in Wales with reference to their involvement in complaints made by children, or by their parents or carers on their behalf, about local authority social services. It draws, primarily, upon qualitative interviews with local authority children’s complaints officers, whose task is to receive complaints or concerns, field these to appropriate social services staff, maintain oversight of their progression and keep complainants informed of developments. The paper describes the challenges that complaints officers perceive children encounter in moving complaints forward, especially in a context where independent advocacy services are involved and where these services are viewed with some suspicion by social services staff. It suggests that complaints officers play a pivotal part in managing the sometimes contested and complex interface between service provider and child and may do so from a position of limited authority and influence. The role of complaints officers in engaging with complainants and their advocates, and with those colleagues implicated in complaints, has rarely been the topic of research. This paper provides accounts from these key staff that help illuminate the tensions and difficulties that can enter the children’s complaints process.

The views and experiences of learning disability nurses concerning their advocacy education

A mixed methods project [Llewellyn, P., 2005. An investigation into the advocacy role of the learning disability nurse. University of Glamorgan, unpublished PhD Thesis] investigated the advocacy role of learning disability nurses. This paper discusses the section concerned with nurses' advocacy education. Focus groups, interviews and a questionnaire survey enabled nurses from a wide range of grades, seniority and experience to explore their received education in advocacy and their educational requirements concerning their advocacy role. Findings revealed that nurses' received education in advocacy varied according to the syllabus under which they qualified, with those whose education was influenced by the 1979 Jay Report having the highest incidence of advocacy training. Many learning disability nurses who had received theoretical education did not feel confident to advocate for their clients. Many were also unsure of their ability to access independent advocacy services and when it was permissible to do this. Nurse informants expressed a need for ongoing support and training in advocacy relating to The Human Rights Act (1998) and The Disability Discrimination Act (1995); and also specifically in relation to advocacy for clients within their own work area. Most nurses had definite ideas regarding how and by whom their advocacy education and training should be provided.

An investigation into the advocacy role of the learning disability nurse

This paper discusses the interaction between the first and second stages of a three-stage grounded theory study that investigated the advocacy role of learning disability nurses in Wales. Definitions of advocacy and their advocacy support needs obtained from people with learning disabilities in the first stage informed the design of focus groups in which nurses compared their own perceptions of advocacy with those of people with learning disabilities. The nurses also discussed barriers to advocacy, independent advocacy services and their requirements for advocacy education. Findings revealed that all nurse participants advocated for their clients, but some definitions of advocacy by people with learning disabilities were not considered relevant to their current practice by some nurses. Nurses’ advocacy role varied with their work situation and was influenced by adherence to either the individual/medical or the social model of disability. All nurses recognised barriers to advocacy, but ability to access independent advocacy services was inconsistent, as was participants’ attitude towards and willingness to use these. Nurses’ received education in advocacy varied, but they expressed a need for ongoing support and training in advocacy related to their own work area and had specific requirements regarding how and by whom this should be provided.

Moving from Long-Stay Hospitals

A cohort of 68 persons had been resettled from a long-stay hospital over a 5 year period, with over 90 percent moving to residential and nursing homes. Interviews were conducted with 39 residents and 34 relatives. Residents had more likes and fewer dislikes about their present accommodation than about the hospital. Nearly all were happy to have moved. A minority of families had been unhappy before the move. After the move, all families felt the residence was at least equivalent to the hospital, with most rating it as much better. Families liked the staff, the atmosphere, the buildings, and the individual rooms. They disliked the congregated living models, the failure of people to move on, and the dearth of social networks. Recommendations include increased awareness of new housing and support options, regular reviews of clients' needs and aspirations, and opportunities for access to independent advocacy services.

Regulation and Reform: Promoting Residents' Rights in Australian Nursing Homes

The residents' rights movement has a relatively recent history in Australia, although it is well established in the United States. The recent Ronalds consultancy (1988-1989) established a national policy agenda for the residents' rights movement in Australia, including a Charter of Residents' Rights and Responsibilities, a Resident/Proprietor Agreement, independent advocacy services and complaints units with the Department of Health, Housing and Community Services. A less well publicised aspect of recent reforms to the aged care system also converges significantly on the issue of residents' rights. In 1987, a new and sophisticated system of nursing home regulation was introduced by the Australian government. The standards monitoring program, which is at the forefront of international developments in this field, is resident centred and outcome oriented. The data presented here suggest that the program has contributed toward the development of residents' rights in nursing homes, via improved commitment amongst management, and greater participation by residents. Yet overall progress in residents' rights remains precarious. Several conflicts of interest and sources of constraint are identified.