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Part 3: Ethical Challenges during Participation in Research: promoting wellbeing and avoiding harm

2019: Overcoming ethical challenges affecting the involvement of people with dementia in research

Part 3: Ethical Challenges during Participation in Research: promoting wellbeing and avoiding harm

Much of the discussion paper so far has focused on how to attract the interest of a diverse set of people with dementia to research and how to go about ensuring a fair and just selection of those people in the context of research. The primary goal of research is not to benefit participants but researchers must consider participants’ wellbeing and not focus on acquiring valuable data at all costs. Also, once people with dementia have agreed to participate in research, it is important that researchers ensure that they are treated with respect and due consideration for their wellbeing. Furthermore, researchers can be considered as having a duty of care towards their participants, which includes taking necessary measures to avoid them coming to any harm.

“When I participate in a research project, please explain what the research is about in clear words and give me a printed version in simple language. Make it easy for me to understand the purpose and aims of this study, and in what way I can contribute. On the one hand, I want to be treated like any other person but on the other hand, I need assistance to participate. I want to be seen holistically as a person with special needs but also as a person who is capable, creative and responsible. To feel well despite my disease, I need empathy, respect, kindness and the opportunity to be heard and understood” (Angela, person with dementia, Austria).

The fact that research participants provided informed consent does not release researchers from the moral obligation to take measures to try to ensure that they have as positive and safe an experience as possible. Researchers’ responsibilities can be perceived not merely as negative obligations (i.e. to refrain from causing them harm) but also in terms of positive obligations towards research participants (Richardson 2008). In some situations, it may be best to take concrete action to promote participants’ wellbeing and protect them from harm, whereas in others it may be best to refrain from doing something[1].

Our interest in Part 3 of this discussion paper is on the wellbeing and safety of people with dementia whilst participating in research, and on any lasting impact of research on wellbeing. People who participate in research are voluntarily contributing to society and irrespective of the importance that they assign to their own wellbeing and safety, researchers have a duty and responsibility to promote their wellbeing and protect them from harm.

Promoting wellbeing and minimising the risk of harm

A positive and safe environment for participants

Perceptions of wellbeing are socially constructed and there may differences from one person and cultural group to the next with regard to how wellbeing is interpreted and the importance attached to it. Wellbeing is a fairly broad concept as the following quote from Naci and Ioannidis (2015) suggests.

“Wellness refers to diverse and interconnected dimensions of physical, mental, and social well-being that extend beyond the traditional definition of health. It includes choices and activities aimed at achieving physical vitality, mental alacrity, social satisfaction, a sense of accomplishment, and personal fulfilment.”

When people with dementia volunteer to participate in research, they often do not know exactly what to expect. Many will be stepping outside their usual comfort zones, going to unfamiliar places and interacting with people they don’t know.

Researchers should treat participants with dementia with the same level of respect as that afforded to other people (e.g. being polite, showing acceptance and behaving in an appropriate and courteous manner), take necessary measures to ensure continuing  respect for participants’ right to self-determination (see sub-section on ongoing consent and the right to withdraw) but in addition, provide all necessary support linked to the specific needs that participants may have as result of having dementia. Some challenges and needs, for which adaptations and flexibility may be required, may be directly linked to cognitive impairments associated with dementia (e.g. related to memory, attention span, handling information, logical thinking, orientation in time and space, calculating, writing, reading and communicating). However, drawing on the concept of disability, the extent to which such impairments become barriers to participation in research also depends on procedures, attitudes and practices within society and to lack of reasonable accommodation. Careful consideration of how, when and where study visits are planned, the adaptation of tools, instruments and activities, the provision of additional time, the use of aids and props to facilitate communication and promote understanding, and the development of creative methodologies are all important issues to consider in order to promote the wellbeing of people with dementia involved in research.

It is important that researchers take into account physical, emotional, relational and interpersonal factors in the context of multiple and complex identities and challenges encountered by a diverse set of participants with dementia. Researchers may need to develop their cultural awareness and sensitivity (knowledge and acceptance of people from different cultures and of cultural differences and similarities between people) and cultural competence (knowledge combined with appropriate attitudes and skills (e.g. openness, respect and acceptance). The acquisition of cultural competence requires some degree of self-reflection (e.g. awareness of one’s own background and a readiness to question one’s own assumptions) and is therefore an important aspect of reflexivity and positioning (see sub-section on this topic). Many researchers would benefit from involving a diverse set of people with dementia in PI and from contacting representatives from different communities so as to ensure that the positive environment they seek to create for research participants is inclusive and responds to the needs, wishes and challenges of a broad group of people with dementia.

The research environment is also made up of researchers with different beliefs and attitudes, but also possessing different virtues which may also impact on participants’ wellbeing. Velasquez, Andre, Shanks and Meyer (1988), like other theorists of the ethics of virtues, argue that the fundamental question should not always be “what should I do?” but “what kind of person should I be?” They suggest that virtues such as honesty, compassion, generosity, fidelity, integrity and fairness, to name but a few (which are also attitudes, dispositions and character traits) can be learned, practiced and developed. This is something that happens through interaction with others within a community and may eventually result in a predisposition to act in ways which reflect those virtues. Certain virtues are likely to be considered more important than others in different cultures and in different contexts, hence the importance of cultural awareness and sensitivity.

Do you consider acceptance of diversity and a desire to promote inclusion as virtues?

Are there other characteristics you would consider as virtues which would be important for researchers to have or cultivate?

The wellbeing of informal carers and supporters

The focus of this discussion paper is on people with dementia but for many people with dementia involved in research, their participation can have an impact on relatives and close friends who support them. Informal carers and supporters may sometimes find themselves with responsibilities they did not necessarily choose (e.g. ensuring that the person with dementia attends study visits, has read and understood relevant documentation and complies with research procedures). Some of them may have specific needs (e.g. linked to language, literacy or mobility etc.), they may have competing obligations (e.g. professional, family and personal responsibilities) and some may lack trust in researchers (especially if from a marginalised group) or simply prefer to spend their time on other things. In cases where study partners are required for research,  this  not only excludes people with dementia who don’t have one but also risks putting pressure on informal carers and supporters who are not able or do not wish to get involved. Such pressure and the impact that this can have on people’s lives, wellbeing and relationships should be considered and alternatives found. Informal carers and supporters should not be taken for granted as without them, much research involving people with dementia would not happen. Neither should they be ignored or denied the possibility support the person with dementia. Terminology such as relatives, families and friends may sometimes exclude people from the LGBTI community, who may not relate to such terms which are not consistent with that of the ‘family of choice’. Similarly, for some people with intellectual disability long-term social care support staff may be more of a constant in their lives than family.

An area of particular concern is that of interpretation. This issue has been discussed in relation to the diagnosis of dementia and assessment for services (Alzheimer Europe 2018) but it is also relevant to participation in research (e.g. in relation to informed consent, interviews and focus group discussions and completing outcomes measures). There are pros and cons to the use of relatives as interpreters. On the positive side, relatives are often familiar with the person’s situation and better able to understand what the person is trying to communicate, they are in many cases trusted (i.e. they will not reveal what the person says outside of the family) and in some cases may be familiar with a particular language or dialect that is not spoken by many people. Their involvement may be essential to the wellbeing of a person with dementia and to their participation in a study. There are, however, some issues to consider in relation to the wellbeing of all concerned. The involvement of relatives may mean overriding the general principles of respect for privacy and confidentiality. Younger people (e.g. second or third generation migrants who sometimes have better language skills than their older relatives) may be uncomfortable with certain issues (e.g. sensitive topics addressed in qualitative research or medical details about the participant). Some people with dementia might also be uneasy talking about issues which could call into question their standing within the family. It could be argued that the use of relatives and friends for interpretation in research increases the risk of obtaining unreliable data.[2]

The prevention of harm

A safe environment also means a place or situation in which people with dementia will not be harmed. Some tests that research participants undergo can be experienced as burdensome, stressful, uncomfortable and even painful. Research participants must be informed of these risks as part of the informed consent process. However, in cases where proxy consent has been provided or consent has been provided in an advance directive, the participant might not currently understand what is being asked of them and why. In addition, pain and discomfort are to some extent subjective. What bothers or is painful to one person, may be experienced quite differently by someone else. The following table provides examples of a few issues linked to various research activities which may result in some people with dementia having a less than positive experience of participating in research.

Action

Potentially negative consequences/experience

Doing tests of perfor-mance (e.g. doing a paper and pencil test or a computer test)

  • Performance anxiety (more so in the case of people with low levels of education or difficulties with language and literacy.
  • Loss of self-esteem or concerns about deterioration of condition because of known or imagined score.
  • Culturally biased questions. Feel discriminated against.

Being involved in a focus group discussion

  • Feeling of not having sufficiently contributed.
  • Feeling of not having been equally valued by the researchers.
  • Feeling of not being sufficiently knowledgeable or eloquent.
  • Concerns about having disappointed the researchers.

Having a scan

  • Claustrophobic feeling.
  • Being disturbed by the noise.
  • Having a complication or lasting side effects.

Having a spinal tap

  • Painful or unpleasant.

Giving a blood sample

  • Painful or unpleasant.

Being interviewed

  • Feeling intimidated by highly educated researchers.
  • Concerns about performance in relation to other people who were interviewed.
  • Concerns that other people will find out what was said (e.g. maybe was too critical about someone).
  • Revival of memories of unpleasant things from the past.
  • Unease linked to the discussion of sensitive topics.   

Survey

  • Difficulty understanding some of the questions.
  • Fear of making mistakes, of letting the researchers down or of not responding in a way that the participant thinks the researcher is looking for.  
  • Arousal of unpleasant emotions and feelings such as anger, frustration and inadequacy.

Observation

  • Concerns about who has access to the information.
  • Concerns about doing or saying something embarrassing.
  • Feeling exhausted. No break from observation, no privacy.

Information provided about what is involved (in terms of the procedure and known risks) is not necessarily sufficient preparation or protection from harm. People may, for example, evaluate whether or not a risk is acceptable on the basis of information provided but burden, has an experiential component (Jongsma and  de Vathorst (2015). People do not necessarily know how they will feel about a particular intervention or procedure until they have experienced it, particularly in the case of repeated invasive procedures like blood tests but also for non-medical procedures which some people might find disturbing (e.g. in-depth interviews on sensitive issues). Having dementia may also alter someone’s experience of certain research procedures because of increased difficulties with language, communication and comprehension. These may be further compounded for people with low levels of education, additional difficulties with language and literacy or from communities which are typically marginalised. A person might, for example, not fully understand or remember what the procedure involves, be unable to express his/her concerns or ask questions, or feel confused, disorientated or overwhelmed. For these reasons, it is vitally important that researchers take an interest in how participants experience what they are asked to do, that researchers provide appropriate support and consideration and that they are attentive to whether participants are happy to continue or wish to end their participation in their research.

With regard to the duty of care mentioned earlier, it is generally accepted that researchers should take precautions to ensure that their participants do not come to any harm during their study, but also to take any necessary measures if they discover that participants in their study are, for example, currently being abused, exploited or suffering from neglect. In some qualitative studies which address sensitive topics and where a relationship of trust is built up over time, interactions may sometimes be mistaken by participants as having a therapeutic quality (i.e. researchers being committed to improving their personal health or situation rather than seeking data to answer a particular research question). Some researchers, especially in the context of advocacy research, argue that researchers have a personal responsibility to resolve such issues. Others argue that it is not the role of researchers to intervene directly in matters for which they lack the necessary expertise and could do more harm than good, and that their role should be limited to alerting relevant professionals. Responses to unethical practice should also be in line with regulatory bodies where appropriate (e.g. in the United Kingdom, this would be the Nursing and Midwifery Council when conducting research with National Health Service patients).

 

Recommendations for researchers

  • Be sensitive to and respect different interests and needs of participants.
  • Recognise the equal value of different types and levels of contribution towards research.
  • Build on advice obtained from PI and from relevant gatekeepers about how to create a supportive, respectful and culturally appropriate environment and manner of interacting with people with dementia from diverse backgrounds. Be aware of expectations surrounding participation in research (including the management of hopes, fears and possible disappointment in relation to people with dementia, carers and the wider network).
  • Be attentive to possible perceptions of a power differential and of actual differences in power (interpersonal and structural).
  • Ensure that you have sufficient experience conducting research with people with dementia and if not, seek the support of researchers who have.
  • If people with dementia are unable to communicate their wishes, consult informal carers/supporters in order to gain a better understanding of what would promote the wellbeing and respect the known wishes of the former with regard to their participation in research.
  • Ensure that procedures and interventions are not unnecessarily or over burdensome and ask for feedback about levels of burden during and after a study.
  • Ensure that sensitive topics are approached with sensitivity and care.
  • Ensure that participants with dementia have someone they can contact after the study should they need support or have any questions. 
  • If unsure about where the boundaries lie with regard to intervention in issues related to the wellbeing of research participants but not directly linked to the research, check with your ethics committee.

Recommendations for research ethics committees

  • Ensure that researchers provide details of provisions to promote wellbeing and protect participants from harm.

 

Summary

Measures to promote wellbeing, respect autonomy, treat people with dementia with respect, and value cultural differences and diversity must continue throughout the whole research process. The aim should be to ensure that participants have a positive experience in return for their personal investment in research and that they are not harmed. This may also contribute towards the retention of participants which is beneficial to the research process. Researchers need to bear in mind that the same research procedure may be experienced differently by different participants and that pain and discomfort are to some extent subjective. The wellbeing of informal carers and supporters should also be considered because not only are they important in their own right but the continued participation of people with dementia in research is often dependent on their continued support.

 

The ongoing right to self-determination  

Regardless of how informed consent was initially provided (e.g. by the participant, by a proxy or in an advance directive), it is important, in terms of respect for autonomy, beneficence and non-maleficence, that informed consent is perceived as a continuous process. The concept of ongoing consent, whereby consent is sought at regular intervals throughout the study, is becoming increasingly common.

Confirmation of the wish to participate in research

The concept of ongoing consent (including indications of assent) when conducting research with people with dementia is particularly important because:

  • participants with dementia who initially provided informed consent themselves may at some point forget that they did so,
  • participants with dementia may not have provided consent themselves prior to the actual study (as consent was either provided by a proxy or by means of an advanced directive some time ago), and
  • participants with dementia might be confused and not realise that they are currently involved in research and/or that they are entitled to withdraw at any time.

The process of ongoing consent provides an opportunity for researchers to verify that participants with dementia still have the capacity to consent to continued participation. Where this is not the case, it provides an opportunity to reflect on whether and if so how, this affects their continued participation and the possible need for additional protective measures. It also provides a regular opportunity to discuss with participants how they feel about various procedures and interventions that they have undergone or that are planned.

The concept of ‘process consent’, which was mentioned earlier, involves re-visiting and re-establishing consent regularly throughout the study with a particular focus on residual capacity and on adapting methods to correspond to participants’ individual abilities (not necessarily cognitive) and their preferred ways of receiving information (Dewing 2008). This might, for example, involve the use of modified, simplified forms, key words with or without pictures, web-based information, images, photosymbols, ‘talking mats’, videos to contextualise the information, extending the evaluation of consent over an extended period and judging consent on the basis of how a person responds and the feelings they express.

Dewing (2008) emphasises that process consent is meant for use with persons with extremely limited capacity who would generally be thought to be lacking competence (i.e. the legal capacity to consent) but that it can also be used in conjunction with other forms of consent, including proxy consent, as a means to include people with dementia in research. However, greater attention needs to be paid to how to maximise the potential of a broad range of people to consent to participate in research. The level of capacity is not the only factor interfering with the ability of people with dementia to consent. Various supports and approaches, including the establishment of a trusted relationship and environment, also need to be culturally appropriate and to correspond to the needs and abilities of people with dementia from various marginalised groups. Dewing (2008) describes the first step of process consent as consisting of establishing basic biographical knowledge of the person and having some ‘clues’ about how each person presents when in a state of relative wellbeing, so as to be able to approach that person for ongoing consent in a favourable context/environment and to build up a relationship of trust.

It is unclear to what extent such an approach would be feasible or accepted by research ethics committee for some types of research (e.g. for randomised controlled trials or in studies involving large numbers of participants). Nevertheless, the general concept of ongoing consent can and is applied in a wide range of research projects in the form of re-assessing informed consent or verifying assent at various stages of the research process, thereby ensuring that the principle of voluntariness is still applicable and that people with dementia can express their self-determination.

The continued right to withdraw

The continued right to withdraw from research is an integral part of the ongoing consent process. Whereas participants need capacity to consent, they do not need capacity to withdraw from research. This can be done at any point and participants should not be asked to justify their reasons for withdrawal. This does not prevent researchers from discussing withdrawal with participants (mainly in case of research that has a high potential to benefit participants) so as to ensure that withdrawal from the study is not based on misunderstandings or on contingent reasons that could be overcome. People with dementia may, however, at some point lack the ability to communicate their desire to withdraw, as mentioned above not understand that they have the choice, and even not be aware that participation is causing them distress. For this reason, it is important that researchers are attentive to signs of distress, discomfort or harm throughout the whole research process, during which participants’ ability to understand and communicate may deteriorate.

Apart from obvious signs of resistance such as turning away, verbal and emotional expressions and non-verbal indications of the desire to withdraw, there may also be very subtle signs which are difficult to interpret, especially in the light of the multiple intersecting identities of both participants and researchers. For this reason, informal carers and supporters may have an important role to play in helping researchers to identify relevant signs of distress, harm or the desire to withdraw.

 

Recommendations for researchers

  • Consider creative, person-centred approaches to ongoing consent which recognise and understand the needs of a diverse group of people with dementia.
  • Be attentive to possible resistance from participants with dementia (gestures, body language, facial expression, emotional expression and verbal indication).
  • Try to gain cultural awareness so as to recognise such signs from people from different cultures and with diverse characteristics.
  • Consult informal carers about possible signs of dissent of people with dementia who are unable to consent. Do not proceed with an intervention in case of doubt.
  • Ensure that approaches and attitudes to ongoing consent and withdrawal are culturally appropriate.
  • Do not make withdrawal dependent on proof of capacity (as in consent); it should be possible at any time and with no justification necessary.
  • Be aware that people with dementia may forget that they are involved in research and not understand that they have a choice to refuse a particular intervention or act.

 

Recommendations for research ethics committees

  • Ask researchers to describe the measures that they will take to verify whether participants wish to continue or withdraw from the study after initial informed consent has been given.

 

Recommendations for funders

  • Recognise the value of small-scale studies where priority is given to seldom heard voices and where capacity may fluctuate.

Reflexivity and positionality

The importance of self-reflection

When striving for more inclusive research, the concepts of reflexivity and positionality are particularly relevant. Reflexivity consists of a continuing process of self-scrutiny on the part of researchers through which they attempt to acquire a greater awareness of the relationship between themselves and research participants. Positionality is about where researchers stand in relation to the people with and on whom they are conducting research.

Through reflexivity and positionality, researchers reflect on the personal factors which may in some way affect their choice of research topic and appropriate methodology, how they analyse their findings, which findings they emphasise and how they frame and communicate their conclusions (Malterud 2001). Reflexivity at a more structural level is also important. This involves reflecting, for example, on the social position of the researcher or on what the researcher represents (e.g. structures like universities or hospitals). Researchers need to be aware of their own degree of power and privilege compared to that of people with dementia involved in PI or as research participants. They need to reflect on how these possible different positions influence their collaboration and the information or data, and on how they can reduce the power gap in this collaboration. In other words, is this research or collaboration a reproduction of structural lines of oppression or have steps been taken to move towards inclusive research?

This involves researchers paying attention to how their perceptions as well as cognitive, theoretical, linguistic, political and cultural characteristics or circumstances, as well as structural factors, might affect their interpretations (Alvesson and Sköldberg 2009). There is no single accepted procedure for reflexivity but it typically consists of reflecting on one’s own background, history and other relevant factors, as well as writing memos of one’s thoughts and observations about the data collection and analysis.

Reflexivity is usually associated with qualitative research methods in that it is grounded in the belief that researchers can never be totally separate/detached from their research participants. Some quantitative researchers, influenced by the positivist paradigm, would be more inclined to consider self-reflection within the research process as too subjective, and as a problem which with the right research design could hopefully be eradicated (Newton 2009). However, according to Lakew (2016), attention to subjectivity may actually increase the likelihood of achieving objectivity by obtaining a more complete and inclusive account of ‘reality’.

 “…models do not build themselves any more than they interpret themselves […] choices are still to be made, and these are frequently based on intuitions, hunches and ideas of what is needed that have not yet been fully rationalized” (Greiffenhagen, Mair and Sharrock 2011, p.103).

Positionality is closely linked to reflexivity in that it rests on the assumption that people have multiple overlapping identities and that a person’s position in society, including their cultural background as well as a range of factors and characteristics which shape and reflect their identities, affects the way they make sense of the world. In the past, it was often assumed that a researcher was either an insider or an outsider (with regard to different groups of potential participants) and that there were certain advantages and disadvantages to being either. Drawing on critical and feminist theory, postmodernism, multiculturalism and participatory and action research, insider/outsider issues are increasingly being reframed in terms of one’s positionality with regard to ethnicity, class, gender, culture and other factors. It is claimed that this is a better approach to understanding the dynamics of research within and across different cultures and sub-groups (Merriam, Johnson-Bailey, Lee, Kee, Ntseane and Muhamad 2001). Aguilar (1981, p.25) emphasises the internal variation and multiplicity of social and cultural characteristics in all cultures and sub-cultures and asks, “What is it that an insider is insider of?” This suggests that there are different levels of insider and outsider status which may be different at different times (Merriam et al. 2001).

Lack of awareness of one’s positionality may affect how certain things are understood, research priorities, sampling strategies and the analysis of results, not only conclusions that are drawn but which specific issues are analysed in the first place. Researchers who fail to address the concepts of reflexivity and positionality may end up with a selective perception, miss intricacies (which fall outside the realm of their experience) and fail to understand the meanings that research participants and people contributing to PI give to their lives.

Knowledge claims and objectivity

The issue of what counts as knowledge represents a fundamental question underlying various research paradigms and is also relevant to the concept of reflexivity. Corbin and Strauss (2008) suggest that knowledge arises through the action and interaction of self-reflective beings, with past memories and recollections entering directly or indirectly into actions. Drawing on a pragmatic approach to the acquisition of knowledge, they suggest that

“….acts of knowing embody perspectives. Thus, what is discovered about ‘reality’ cannot be divorced from the operative perspective of the knower, which enters silently into his or her search for, and ultimate conclusions about, some event” (Corbin and Strauss 2008, p.4).

There may also be differences within a similar methodological approach. Kvale and Brinkmann (2009) describe a key difference of relevance to the issue of reflexivity, in the context of different philosophical approaches to qualitative interviewing, through the metaphors of the miner and the traveller. The miner metaphor describes knowledge as being like a buried valuable metal which the miner unearths without contaminating it in any way. It is there, intact, waiting to be discovered. The traveller metaphor describes knowledge as something that is constructed as a result of the traveller walking along with people, listening to their experience of the world, trying to make sense of it and retelling it on his or her return.

The focus of the positivist paradigm was initially on the discovery of an ‘absolute truth’ which could be objectively observed and measured, and on the need to avoid ‘contamination’ of the data by the researcher (i.e. resulting from attitudes, beliefs or behaviour). It is now widely accepted that researcher reactivity (i.e. the possibility that the researcher might influence the research situation or the participants) and total neutrality or objectivity (in the sense of freedom from bias) cannot be completely ruled out. Researchers may strive for objectivity but people can never be truly divorced from their own subjectivity.

“We can strive to remain objective, but must be ever mindful of our subjectivities. Such is positionality. We have to acknowledge who we are as individuals, and as members of groups, and as resting in and moving within social positions” (Bourke 2014, p.3).

Ritchie and Lewis (2009) suggest that reflexivity is actually important when striving for objectivity and neutrality. It provides a way to reflect on different ways in which bias might occur and can also be useful when seeking to understand and portray the perspectives of research participants.

Power relations and matching

In some feminist approaches to interviewing, reflexivity and positionality are incorporated into the data collection process, which is perceived as a reflective and interactive activity that is non-hierarchical and avoids objectifying the participant. Such approaches reflect a more collaborative approach to research whereby researchers are encouraged to step outside the traditional formal and neutral role, and to share information about themselves. This can also be perceived as a form of reciprocity (Ritchie and Lewis 2009).

It has been suggested that gender matching or matching based on social class, ethnic group or other key socio-demographic characteristics may help provide greater insight into participants’ experience, help address perceived power imbalances and encourage people from such groups to contribute to research (Ritchie and Lewis 2009). Self-reflection on this issue may lead to decisions about whether or not to interview people with different key characteristics to those of the researchers (e.g. whether female researchers should interview women in a particular study or whether researchers should be matched with participants from the same minority group, who speak the same language or with similar key socio-demographic criteria). Sometimes, having certain characteristics in common (e.g. based on ethnicity, gender, disability or age) may mean that researchers have experienced similar forms of oppression and unequal power relations. The perception of an unequal relationship of power in the context of a study would probably not be conducive to open discussion, particularly if issues of oppression or discrimination were highly relevant to the research questions (Ritchie and Lewis 2009). However, as pointed out by Berdai-Chaouni, Claeys and De Donder (2018), presumed proximity, based for example on having a shared ethnicity, may result in overlooking other factors such as social class, which create a distance from the research participants and in failing to seek other ways of challenging barriers.

Reflection and subsequent decisions about possible matching need to be made very carefully to avoid making assumptions and researchers limiting themselves to only conducting research with certain participants. It is important to bear in mind here that there may be power imbalances within certain groups (e.g. based on class, gender, religion, language spoken and ancestry) and that consequently, it will not always be considered as a disadvantage for a researcher to conduct research with people from a group with which he/she does not personally identify.

“Can Whites study Blacks? Straights study gays? The colonized study the colonizer? (…/…) More recent discussions of insider/outsider status have unveiled the complexity inherent in either status and have acknowledged that the boundaries between the two positions are not all that clearly delineated. In the real world of data collection, there is a good bit of slippage and fluidity between these two states” (Merriam et al. 2001, p.405).

Similarly, generalisations about researchers with certain characteristics being either suited or not suited to conduct research with certain groups of participants would amount to negative stereotyping, prejudice and discrimination. Participants may also be inclined to assume that a matched researcher understands certain issues or customs (i.e. wanting to avoid stating the obvious, based on an assumed understanding), and therefore not describe their experience in detail. For some participants, the matched criteria may not be central to their self-identity and some participants may feel more comfortable discussing certain issues with an ‘outsider’.

Self-reflection, with regard to key socio-demographic characteristics, should therefore aim for an increased awareness of one’s own characteristics and how these might be perceived by and have an impact on participants, but without this leading to actions based on generalisations. Ritchie and Lewis (2009) conclude that researchers need to assess the potential risks of cultural collusion versus unhelpful power dynamics. This might result in greater sensitivity to the needs and wellbeing of participants, measures being taken to promote trust and perhaps seeking support from fellow researchers, members of the communities or groups in question or gatekeepers. However, being a member of a particular community does not automatically make someone an expert on the lives of everyone from that group or grant them immediate access to the thoughts and feelings of people from that group (Shaw et al. 2019).

Assumptions, beliefs and attitudes

Researchers, like everyone else in society, have a wide range of beliefs and assumptions about various issues which may impact on their attitudes and behaviour towards people with dementia. This could in turn have an impact on how they conduct research and on the experience that people with dementia have of PI and of participating in research. Areas which would be particularly useful to reflect on include perceptions of dementia, personhood and vulnerability.

Dementia

Reflexivity and positioning enables researchers to become aware of their beliefs and assumptions about dementia and people with dementia, of how these may differ to those held by the people who may contribute to their research and to be attentive and respectful of other ways of making sense of dementia. 

There may be considerable variation amongst researchers, research ethics committees and funders with regard to the extent to which dementia is perceived in a holistic[3] as opposed to a strictly biomedical manner. Literature on lay people’s perceptions of dementia reveal, in addition, beliefs about the origin of dementia, such as it being a natural part of ageing, a divine test or punishment, something that is contagious, a mental disorder (that runs in families) or a result of lack of activity or of neglect by families (Mukadam, Cooper and Livingston 2011, Alzheimer Europe 2013, Parveen et al. 2017). In the context of research, perceptions and beliefs about dementia may affect the opportunities that are offered to and taken up by people with dementia, the choice of research questions which are deemed worthwhile, the methodologies considered possible and appropriate, and the way that people with dementia are treated, which may in turn have an impact on their wellbeing and involvement in research.

Perceptions are often expressed through words and may be associated with images, including metaphors. Words and images can be powerful and affect the way that people think about the concepts and people to which they apply. George (2010) describes this in terms of a moral challenge linked to semantic choice, whereby subtle alterations in the way that people talk about certain conditions may contribute to more humane approaches to them. The term ’demented’, for example, is still used by some researchers (who often have a more medical background) despite frequent objections from people with dementia. Such objections are linked to the term being considered insulting due to its association in Latin with being ‘out of one’s mind’ and in some countries, the term being used in a pejorative manner in much the same way as terms such as ‘crazy’ or ‘mad’.  Similarly, some French and Dutch terms (e.g. dément, Alzheimérien and dementerende) are nouns which denote what a person “is”. This is similar to the practice of calling people with schizophrenia “schizophrenics” in that it reduces a person to a disease state. Referring to people with dementia as patients may make sense in clinical research settings but outside of that context may sometimes be perceived as a focus on the disease and not the person.     

Personhood

Perceptions of personhood were mentioned earlier in relation to advance directives with regard to the moral justification to respect them. They are also important with regard to respect, dignity, wellbeing and equity.

For some people, personhood is dependent on the possession of certain capacities. Others would argue that personhood more or less equates with simply being a human being, whereas the role of interaction has also been highlighted, as has the importance of the physical body. Kitwood (1997, p.8), for example, described personhood as “a standing or status that is bestowed upon one human being, by others, in the context of relationship and social being”. With regard to perceptions of personhood which are linked to the possession of certain cognitive capacities, including the capacity for logical reasoning and memory, Post (2006) criticises what he calls a hyper-cognitive approach which risks denying some people ‘person status’. He also describes the belief that some people have of a kind of “non-material soul that still exists intact underneath all the neurological losses of dementia” (Post 2006, p.231). However, some people believe that this unique inner essence continues beyond human life (e.g. through reincarnation or an after-life), whereas for others, it is something that can be lost.

“But you have to remember, that body is not who the person is. The person is gone.”

“There’s no sense is asking her…. She’s not there…”(Dunham and Cannon 2008, p. 49).

Perceptions of the loss of a human essence are often associated with terms and images such as “off/away with the fairies”, lights on, no-one home”, an “empty shell””, “not being there”, “sitting there like vegetables”, the person just being “a body”, “vegetables in a parallel world”, a “speechless shadow” and (Devlin et al. 2007, Dunham and Cannon 2008, Piehl 2009, Swane 1996) and metaphors evoking monster-like characteristics, a ghostly disappearing self, a living death, natural floods and disaster, fights and crusades, and epidemics. These metaphors, along with others such as a return to childhood, challenge the notion of individuality, human dignity and personhood and disregard people’s individual life course and their values, thereby promoting inadequate understandings of dementia and hence also influencing attitudes and behaviour towards them in ways that are problematic (Jongsma & Schweda 2018).

The changed behaviour and appearance of the person are emphasised at the expense of their personality, character, individuality and identity. Some people may find such metaphors helpful as a means to avoid blaming the person with dementia. Perceiving them as something different may serve to lessen their perceived responsibility for behaving in a certain way and enable carers to retain a positive image of them. However, it is unlikely that this would be helpful to people with dementia in terms of their being treated with consideration and respect. The use of metaphors may affect the way that people relate to others who have dementia and may result in negative stereotyping. Through metaphors, the disease can be given an identity (e.g. of a flood, a monster, an attacker etc.) which can be visualised and emotions projected onto it. It can be blamed, hated and avoided. Stereotypes and images based on metaphors can be fairly powerful and prevent people from recognising the individuality of each person with dementia and their personhood. Beliefs about personhood may have a significant impact on how researchers treat people with dementia. They may affect how researchers relate to people with dementia participating in their research, for example, whether they treat them as individuals with feelings, needs and a unique history or as objects to scrutinise and study. In the case of the latter, there is a risk of people with dementia being used as a means to an end, their dignity not being respected and their needs and physical and emotional wellbeing overlooked.

Not all researchers will have reflected on the issue of personhood but may nevertheless have beliefs about it which are based on taken-for-granted assumptions. In such cases, it may be difficult to know where to start and some background reading about various philosophical approaches may be useful in gaining self-awareness as well as a broader perspective on this issue.

Vulnerability

The issue of vulnerability was discussed earlier in relation to the informed consent procedure. However, it also has implications, more generally, for attitudes and behaviour towards people with dementia involved in research. Some definitions of vulnerability focus on people lacking characteristics or attributes (e.g. insufficient power, education, resources or strength) that are considered necessary to protect their interests (CIOMS 2002) or in a more political sense on people  lacking “basic rights and liberties that make them particularly open to exploitation” (Zion 2002).

In the case of dementia, the main issues which might result in people with dementia being considered as vulnerable are age, cognitive impairment, being dependent on others for care, being a resident in a long-term care institution or having end-stage dementia. Additional factors may co-exist such as being a member of an ethnic minority group, gender, physical or intellectual disability, sexual orientation and living situation (e.g. being homeless or nomadic) (Alzheimer Europe 2011). Categories have also been proposed which focus on the characteristics or situations believed to render people vulnerable, such as cognitive, communicative, legal, deferential, institutional, linked to infrastructure, medical, economic and social (Kipnis 2001, National Bioethics Advisory Commission 2001).

However, as Levine et al. (2004) point out, not everyone who fits into any of these categories is vulnerable, and some people who do not fit into any of these categories could nevertheless be vulnerable in some way. Group-based approaches to vulnerability detract from the perception of all human beings as potentially vulnerable (as being capable of suffering), as well as of the vulnerability of people for reasons which are not immediately evident. Focusing on vulnerable groups may also contribute towards seeing certain groups of people as ‘the problem’ and overlooking similarities and differences between groups and individuals. For example, research participants all require some degree of protection, some people belong to more than one group and some members of a group may need additional protection with regard to certain issues but not others (DuBois 2008). There is a risk of stereotyping vulnerable research participants, devaluing them and this leading to unfair treatment or discrimination rather than appropriate protection of their rights.

An alternative non-group based approach to vulnerability involves assessing people for specific vulnerabilities and heightened risk. A specific condition or diagnosis (e.g. dementia) would alert researchers and justify them in assessing people with that condition for different types of vulnerability insofar as they relate to their study (DuBois 2008). The process of reflexivity and positioning could help researchers to recognise aspects of their own identity and situation for which they might be considered vulnerable, either currently or at some point in the future, how their position might affect someone with dementia who is considered as being vulnerable and the potential impact of their understanding of vulnerability on the research process and on the people with dementia contributing to their research. 

Recommendations for researchers

  • Take time to reflect on your own perceptions and beliefs with regard to dementia, people with dementia and the involvement of people with dementia as research participants (also in PI).
  • Reflect on your positionality in relation to potential participants with dementia from diverse backgrounds and marginalised groups. 
  • Take necessary measures to act on the results of such reflection to improve the research process and/or the experience of participants.

 

Summary

The conduct of inclusive research calls for researchers to examine their own beliefs, perceptions and assumptions about people who may have very different characteristics, lives, histories and cultures to their own. Although researchers may realise that they have certain things in common with participants and may be respectful of possible differences, reflection is often needed to gain insight into how their own social position and personal characteristics might reflect or communicate differences of power and in some way impact on participants’ wellbeing and on the research itself. The solution is not necessarily to match participants with researchers who have similar characteristics. There are advantages and disadvantages to this practice. Similarly, beliefs about the origin, cause and lived experience of dementia, as well as taken-for-granted assumptions about related concepts such as vulnerability and personhood, may affect how researchers behave towards people with dementia and decisions they make about research design and methodology. The concepts and practice of reflexivity and positionality are often associated with qualitative research but we encourage quantitative researchers to also consider their potential value (e.g. as a means to foster respectful relationships with research participants, avoid the potentially harmful impact of perceived power imbalances and reduce bias).

 

[1] Some of the issues, especially in relation to wellbeing, will also be relevant to people with dementia contributing to Public Involvement activities.

[2] For a discussion about issues related to the use of relatives and close friends for interpretation, please see Alzheimer Europe’s report on intercultural care and support (2018).

[3] For example, reflecting a more bio-psycho-social model proposed by Kitwood, including the perception of dementia as a disability.

 

 
 

Last Updated: Friday 13 November 2020

 

 
 

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