Ethics and Integrity in Research with Older People and Service Users: Volume 9

The application of user involvement in the design and implementation of research has progressed through various frameworks and is an increasingly recognized and expected as a key element of ethical research methodologies. The practice of engaging users (the public, patients, service recipients, etc.) beyond the traditional scope of subject, and elevating their role as partner or co-designer of the research process, is theoretically rooted in civil rights and social justice ideologies. The success of these types of models are influenced by various factors including the people involved, their capacities and values; the physical and funding environment in which the research occurs and the approaches used to engage. In theory, user involved research is most successful when the people, approaches and environment are genuinely interested and centralized around inclusive methods that posit that populations researched have the right to contribute to research done and researchers have the ethical responsibility to engage them using measurable strategies. User involved research frameworks have the potential to create a space that both values and uplifts historically marginalized voices, while touting the demonstrated advantage of improved effectiveness in research outcomes and implications. Yet there exists a dissonance between theory and practice in the field, due to a lack of consistent understanding, practices and standards tied to the approach.

Exploring subjective experiences of people living with dementia through qualitative research has become increasingly common in recent decades. Nonetheless, researchers have shared a number of ethical challenges in involving people living with dementia in research. A concept that has been influential in discussions about ethics within the field of dementia care, in particular, is person-centredness. A person-centred approach reflects values of respect for personhood and the rights of a person and of building mutual trust and understanding. This chapter presents my experience of adopting person-centred ethical practices in a sensory ethnographic study involving older adults living with dementia. I highlight person-centred ethical considerations at the design stage of my study and occasions during the conduct of my research when research methods and processes were adapted to further meet the needs of the participants. A person-centred approach required that I continually assessed the need to make ethical decisions in every aspect of the research process throughout its duration. Building and drawing on positive researcher–participant relationships to inform those decisions and an adaptable research design allowing research practices to be adapted in situ were therefore essential.

Incorporating the voice of older adults into all phases of research has the potential to make findings more relevant and impactful. Beyond the direct benefit, researchers have an ethical obligation to elicit the contributions of older adults into their work. Recently, organizations such as the Patient Centered Outcomes Research Institute in the United States, the Canadian Institutes of Health Research and the National Institute of Health Research in the United Kingdom have stepped up to accelerate the incorporation of public and patient voice into research, resulting in innovative engagement strategies for involving stakeholders, including older adults in research. However, those who are physically and mentally capable are more often included in research than those with multiple chronic conditions or living with disabilities. The ability to incorporate older adult voice into research is possible and has provided tangible benefits to researchers. Older adults have expertise based on their lived experiences that can provide invaluable insights on how to conduct research with real-world applications. Programmes such as the Bureau of Sages have worked to implement and disseminate best practices and guidelines for incorporating the voice of older adults into research. Principles for engaging older adults include flexibility, mutual engagement of the older adult and the researcher, time for rapport building and partner development and increased focus on accessibility. By working to understand these principles and overcome challenges to incorporating older adult voice into research, research will be more meaningful and relevant to the public, and will inherently include a focus on translation of research into practice.

Research ethics and integrity stipulates that research must be conducted with responsibility towards the research community and should benefit the intended population. This chapter will share insights from an ongoing research programme to reduce family conflict in the context of dementia care while discussing the accompanying ethical considerations. Research into dementia care has primarily focused on improving outcomes for the care dyad, leaving the influence and input of the wider family unit under investigated. Family conflict can detrimentally impact the quality of care provided and leave caregivers vulnerable to psychosocial difficulties. Family conflict occurs in the context of dementia care but there is little research on how to reduce, or prevent, such conflict occurring. In this research programme, a systematic review investigated the effectiveness of interventions that include the wider family unit to reduce family conflict; only one study was included which evidenced the lack of interventions in this area. A qualitative scoping review was then conducted to explore the lived experiences of caregiving families with experience of family conflict and reported solutions. It was found that conflict occurred due to factors including care decisions and role transitions which impacted relationships and affected care provision. Solutions to conflict were less often reported, indicating an important gap in the literature. Interviews with Alzheimer's Society staff and volunteers revealed that stigma and denial surrounding dementia were prevalent, and families were often reluctant to seek external help. This research programme is currently establishing public patient involvement (PPI) to develop the research methodology and interview questions for people with dementia (PWD) and their family caregivers to explore their lived experiences and potential solutions to family conflict. To conclude, this research programme will propose a family-focused intervention aimed at systemic family conflict for those caring for someone with dementia.

Research with vulnerable groups is crucial to get their input into public policy design that will directly impact on them. However, there are many methodological and ethical challenges involved in encouraging participation from groups with a wide range of intellectual, cognitive and physical capacities while ensuring that the rights and well-being of participants are protected. Rather than exploring ethical theories, this chapter is a case study describing the practical ethical considerations that were involved in designing and holding a series of focus groups with adult health and social care service users from vulnerable cohorts. It is based on a series of focus groups which the Institute of Public Health (IPH) held with specified cohorts as part of a policy development process on adult safeguarding for the Department of Health (DOH) in Ireland. The four cohorts were people with intellectual disability, cognitive impairments, significant mental health challenges and nursing home residents. This chapter does not describe the findings of the focus groups but outlines the ethical and methodological considerations that arose in designing and conducting this research, and the practical ethical safeguards employed to mitigate risk and comply with Irish and EU General Data Protection Regulation (GDPR) legislation governing health research. It outlines the ethical issues around protecting confidentiality and using incentives to encourage participation, how individuals' capacity to give informed consent was maximized, the risk-assessment and mitigation procedures used to prevent harms arising and the measures put in place to provide follow-up emotional support to participants.

Both authors have been involved as lay members in research and other activities for a number of years, ensuring they represent the views of members of the public. This chapter identifies what is, and what is not, patient and public involvement as well as highlighting the importance of involving members of the public in all aspects of the research process. Best practice is explored as identified in the UK Standards for Public Involvement 2019 and the UK Policy Framework for Health and Social Care Research 2020. The implications of the Mental Capacity Act and its wording on research matters are also considered. Case studies have been incorporated to highlight the impact of involving patients and members of the public in all aspects of the research process. These include the lessons learnt by researchers and lay members of the team. The aspiration is to move towards more collaboration between members of the public and researchers; therefore, we discuss co-production of research or community-based participatory research (CBPR). We highlight the need for a better partnership between researchers and members of the public. The benefits of this are explored along with the consequences for all involved.

Science is too important to be left solely to scientists, and so the public need to be involved in the design, funding, delivery and implementation of health research, and in discussions about the ethics of research. Since the 1960s, the United Kingdom and many other countries have included scientists from outside health care in various roles in health care research, as well as nonscientists, ordinary citizens, patients and carers. In the last 20 years, these roles have increased in number and range, but significant challenges remain in ensuring that research is always conducted in an ethical fashion. Errors arise when it is assumed that research is ethical because it has passed a single test rather than being subject to constant vigilance; when academic training on its own is regarded as sufficient to guarantee ethical conduct; when pontification about sophisticated dilemmas ignores fundamental matters of equity and helpfulness and when there is an absence of curiosity about the value positions of others (Boaz et al., 2016). We argue in this chapter that in every setting, citizens have the potential to contribute to ethical debates, whether they assist in establishing priorities for research funding, serve as research funding co-applicants, take the lay member places on Research Ethics Committees and Steering Committees, collect and analyze data or co-author academic papers.

Current research about American Indians of all ages is in short supply, yet design and allocation of public services and resources are increasingly guided by ‘evidence’ provided by research. The health and wellness of this population is persistently poorer than that of other marginalized populations. American Indian tribes have been beset progressively since the earliest arrival of European settlers by both malevolent and well-intentioned assaults on their cultures and peoples. This long history of cultural and physical genocide continues into the present and undermines the effectiveness of Eurocentric processes for research that have been shaped by values and beliefs antithetical to those of most tribes (e.g. individualism, proprietary ownership, science as the way of knowing). Individual and collective historical trauma is present in all of the more than 500 federally recognized tribes in the United States of America, and a lack of trust further compromises the validity and positive impact of most research. This chapter describes the roots and foundations of flawed and successful research and identifies practical resources and approaches that are valid and beneficial for conducting research with indigenous people. The processes described in this chapter are grounded in the experiences of tribes in the United States of America; however, parallel experiences of indigenous populations that have a continuing legacy of trauma are found in many other countries (such as in Brazil and New Zealand) and the insights and approaches found in this chapter may be applicable to some degree.

In this chapter, we consider collaborative models of engaged research in comparison to models of team science that include persons with lived experience of the topic area as team members. ‘Co-led’, ‘co-design’ and ‘co-research’ are all terms used in the literature with distinct, but not precise, definitions and approaches. These collaborative models tend to describe methods that allow those with lived experience to be treated differently than other academic members of the research team. Power imbalances between those with lived experiences and researchers persist in such models, in spite of researcher efforts. For example, persons with lived experience are often described as being compensated with gift cards which may be welcomed but can be perceived as diminishing their role and contribution. In contrast, participatory team science involves persons with lived experience as full members of the research team. In the model that we propose, power is balanced through mutual planning and consensus-based decision-making. We contend that using participatory team science advances research through egalitarian consideration of team members' perspectives of the research problem and the designs necessary to knowledge development.

In the spirit of the theme of this current volume, this chapter offers a contribution to care/user-involved research in terms of a personal experience. It is argued that while recognizing how difficult it is for patients/care users to be ‘fully informed’, they should at least be ‘adequately’ informed. Full information can be confusing, daunting, anxiety-inducing and not necessarily helpful to the patient or service user. But adequate information can reduce uncertainty, return some power and sense of control to the user and consequently improve the patient experience. This experience is reflected by a former educator of health professionals who is now a full-time service user – hence the ‘expertise’ offered comes from both sides of the engagement. The focus is on problems associated with waiting for treatment.