potential participants will be emailed or handed as appropriate a Project Information Sheet and Consent Form (Appendices 6, 12, 13 and 19). Potential participants will be provided with contact details and an opportunity to ask questions and discuss any aspect of the study with the researcher.
Ongoing consent will be checked prior to any research conversation and all participants reminded of their right to withdraw at any time without explanation or to withdraw consent to use photographs that include them in publications or presentations about the research.
Participant(s)
This research will not provide a direct or measurable therapeutic benefit for resident, family and staff carer participants. This research does, however, provide the participants with an opportunity to describe their personal experiences and give their perspective about how the design of aged care homes that they live in, visit and work in impacts their relationships and their personal well-being to a wider audience. It has been argued that aged care residents, particularly those with a cognitive impairment, are one of the most under- researched groups within our community. There is also minimal research to date from the perspective of the family and staff carers.
Indirect therapeutic benefits may include a sense of inclusion for a group that often does not have a ‘voice’, a sense of positively contributing to research and that may improve the design for future care homes and the lives of others. The spirit of the research engagement is one of a collaborative approach where all involved are valued as equal conversation partners working together for a common goal to make things better for others (Nolan et al. 2002). Participants may feel valued and there may be some benefit in sharing their stories with an attentive listener.
The opportunity to share personal stories in a welcoming, familiar environment, supported by others has been shown to contribute to a strengthening of self-identity for residents that staff have identified as having a cognitive impairment (Hellström, I, et al. 2007).
Organisation: The research may provide insight into how residents, family and staff carers feel about or perceive a specific aged care environment. This may be of benefit when considering new aged care developments, renovations, or alterations. The researcher has agreed with the organisation to assist with architectural advice or suggestions for future design interventions if required.
At a practical level, by working voluntarily the researcher will provide companionship for residents, and their families and some assistance to care staff within a health care sector that is often under-resourced.
Community: Without in-depth understanding of the lived experience of people dying with dementia or their carers, the reported dissatisfaction of RACF design will remain. This research platform provides a perspective for people that are rarely heard. The study will provide a level of in-depth qualitative understanding that few if any architects have the resources to achieve in normal professional practice and has implications for improving design of future aged care facilities and educating future architects and providing a design resource for existing architects. There are also implications for policy and funding which are currently under review as our
community starts to come to terms with the challenges of changing demographics, higher care needs, and community expectations that are currently unmet.
(b) What are the possible risks or harms of this research to the participants? (NS 2.1)
Could your research evoke anxiety or lead to the recall of painful memories? Yes No
Will participants be asked to provide any information or commit any act, which might diminish self-respect or cause them to experience shame, embarrassment, or regret?
Yes No
Will any procedure be used which may have an unpleasant or harmful side effect? Yes No
Does the research use any stimuli, tasks, or procedures, which may be experienced
by subjects as stressful, noxious, or unpleasant? (NS 2.1) Yes No
Will you induce or create physical pain beyond mild discomfort? Yes No
Does your research explore potentially confidential business practices or seek to
Are there any other possible risks or harms of this research to the participants? Yes No If yes, please list other possible risks or harms.
If you answered yes to any of the above, please describe how your research will comply with the National Statement (2.1). In addition, please describe the process (es) you will use to manage possible risks (e.g. if interviews may cause distress, provide details of support processes that will be put into place). If
participants are to be referred to support services, contact details for these services must be included on the participant information sheet.
Resident participants- It is acknowledged that conversations about lived experiences and personal relationships may sometimes trigger the recall of sad, distressing, or traumatic memories.
The research conversations do not require recall of facts or accurate reporting of events or lived experiences. The researcher will be particularly sensitive to word questions or prompts to reduce the risk of resident participants perceiving the conversation as a test of their memory capabilities, as this may cause
embarrassment or anxiety and possibly emotional distress. Concerns regarding increased susceptibility to distress are addressed by taking all precautions possible to minimise discomfort and create a conversational situation in a familiar and comfortable environment. Every effort will be made to maintain a conversational approach and to keep the prompted conversation focused on personal stories and lived experiences, rather than the quality of the participant’s memory. Personal stories are not required to be factually accurate. A family member will be present at all staff identified cognitively impaired resident prompted conversations. While all questions will be in keeping with valuing the person and directed to the resident, the family member provides a safeguard and can cease, postpone or change the topic of the conversation if there is perceived to be an intrusion or resident distress.
A biography of each resident will be developed in conversation with staff and family members prior to commencing the prompted conversations with residents. This will facilitate a tailored means of
communication including a list of potentially distressing topics to avoid and a personal understanding of each participant resident’s usual signs of well and ill-being, or distress.
However, is possible that during conversations the recollection of memories and personal stories of lived experiences that are distressing to the resident participant may arise. If participants report or appear distressed by mentioning such information, the line of questioning will cease.
In addition to the participant having the option to cease or postpone a conversation, the researcher, family, and staff carers will also be monitoring the resident for any signs of ill-being. In the eventuality that a resident participant becomes emotionally distressed, a registered nurse overseeing the care of the resident will be available to monitor the participant while the interviews are occurring and to intercede should any signs of distress occur and provide debriefing and counselling to the participant.
A further risk is that in the length of time taken due to the part-time nature of the researcher’s study, consenting frail and elderly research participants may suffer from deteriorating health, or die. The care staff and family will advise if conversations with individuals remain possible. As a further safeguard, prior to commencing each prompted conversation, the researcher will check the current health, fatigue, and general well-being of each resident at the time. Should the resident be asleep, being attended by a staff carer or in any way more than usually fatigued or unwell, the prompted conversation will be rescheduled. The researcher has built flexibility into the research design to accommodate these needs.
The researcher has given careful consideration to the issue of elder abuse and advice sought from the aged care organisation, supervisory team, and Professor Fran McInerney at UTASWDREC. In the unlikely event during the course of research, that elder abuse is reported to or suspected by the researcher, the following steps will be taken.
The first step is to immediately report to and seek advice from the supervisory team and the Professor of Ageing at Aged Care Inc.
Assaults are addressed under the Aged Care Act, 1997. The Australian Government has an Aged Care
Complaint scheme in place that identifies reportable assaults and the subject aged care organisation is required by law to have documented procedures and staff education programs in place to deal with reportable assaults. It is compulsory for the researcher to report assaults even if the alleged or suspected assault occurred between family members or spouses.
If Aged Care Inc. receives an allegation that unreasonable use of force or unlawful sexual contact on a resident has taken place, they must report the allegation or suspicion as soon as reasonably practicable and within 24 hours to the Police and the Department via the Aged Care Complaints Scheme.
If the reported or suspected abuse is not an assault, but of a potentially minor nature, the researcher has a duty of care based on the principle of reasonableness to report to the Facility Manager and the supervisory team. Aged Care Inc. has an organisational protocol for the researcher to report to the resident’s aged care Facility Manager. If the manager does not appear to be taking appropriate action or the abuse is within the subject unit, the researcher will then report to the Manager of Residential Care or the Deputy CEO of Aged Care Inc.
Family Participants: The prolonged and degenerative nature of dementia makes the context of care-giving complex and variable. Family carers are likely to experience long-term grief, including each time they notice a deterioration in their family resident’s condition. Family members, particularly spouses, may themselves be elderly and frail. In order not to contribute to increased anxiety carers will be excluded from the study if staff identify that family members are under undue external stress.
There is the potential that talking about their experiences of caring for a family member who is frail, elderly and who may have a cognitive impairment may cause distress to some family participants. Should family carers exhibit any signs of distress or fatigue during prompted conversations; the researcher will gently change the subject or cease the conversation.
If any family participant becomes distressed during either the prompted conversations or focus group, they will be encouraged to contact the counselling service available through Alzheimer’s Australia on 1800 100 500 or a registered nurse caring for their resident family member may provide debriefing and counselling to the participant.
Potential anxiety of family carers has been identified as a possible area of concern in other studies with participants expressing nervousness that potential complaints or negative reporting may impact adversely on the care of their family member living in the care homes. Family carers will be assured of identity
confidentiality to alleviate this concern. Carers will be advised that they are free to withdraw from the study at any time should they have concerns.
Particular sensitivity by the researcher will be essential and assurances provided that research will have little if any impact on care provision or their time together with their resident family member. Prior to commencing each prompted conversation, the researcher will check if care tasks or other activities have been scheduled for the resident at the time with family and staff carers. If appropriate, the research conversation will be re- scheduled. Families are likely to have precious little time with the person with dementia and may be concerned that the research will impact on patient care or time with the family.
Staff carers and the organisation: Staff carers and the organisation may consider that care of residents will be impacted by the research. Every care will be taken so that the researcher fits in with the care home regime and there is minimal disruption to care or visits. The researcher has built in flexibility and will happily reschedule as required. Staff research questions have been minimised, as the researcher is mindful of time constraints within care organisations.
Staff carers may feel concerned that potential complaints or negative reporting may impact adversely on their employment in the care home or relationship with other staff. Staff carers will be assured of identity
confidentiality, and that this study in no way assesses or reports on their performance or quality of care provision to alleviate this concern. Staff will be advised that they are free to withdraw from the study at any time should they have concerns.
All Participants: Every effort will be made to minimise resident, family and staff carer participant burden. Travel is not required by any participants. The well-being and interests of the participants will be privileged over research outcomes. The researcher will converse with residents in their own rooms or if preferred, one of the small sitting nooks in the wing of the RACF. A familiar environment with minimum distractions is essential for people with a cognitive impairment as they have a considerably higher environmental sensitivity than other people do. The environment has been shown to assist capability and will serve as a cue in prompted
conversations.
Conversations with family and staff carers will be held privately in an appropriate space within the subject unit or wing such as sitting nook, lounge, kitchen, or garden as preferred by the participant
Participants may leave any aspect of the study early (e.g. leave a focus group early), postpone or cease a research conversation, or withdraw from the study altogether at any time if they wish, without acrimony and with no explanation necessary. Any sign of fatigue, distress, or dissent of the resident participants recognised by either the researcher or family member present at the prompted conversation will be immediately acted on and the conversation ceased, or the subject changed if appropriate.
Privacy will be protected during observations. The researcher will not observe bathing, toileting, or medical care tasks.
While the focus of the research is about exploring the architecture of well-being for ageing, dementia, and dying-in-place, the researcher has been sensitive to the use of language to minimise distress for participants. The term ‘dementia’ will not be used directly with participants. Participants may be unaware of a dementia diagnosis, and if any reference is made at all to cognitive impairment, the more commonly used term ‘memory issues’ may be used. The researcher will not ask direct questions about dying-in-place as this may be
distressing. The researcher intends to approach the topic of dying-in-place through the well-accepted notion of ageing-in-place.
This research platform study provides all participants with ‘permission’ or opportunity for talk, and there may be a benefit or at least usefulness in talking to someone especially an attentive, unhurried, and interested listener. Research conversations have not been designed to be purposefully therapeutic but are unlikely to cause distress, rather to provide an opportunity to ‘unburden’ or express the stresses of their lived
experiences. Participants may find freedom in a non-judgemental and confidential environment that is not afforded in everyday life to many. The researcher has consciously designed research methods based on briefing and professional practices used in her daily work as an architect practitioner. She is both comfortable and experienced with these research methods and expects this will help participants to feel comfortable talking to her. In addition, the researcher will have been working within the care home for some months prior to commencing the research interviews allowing time to build trust and rapport with participants.
The opportunity to share thoughts and opinions, to have practical ideas and experiences validated, may contribute to a sense of well-being for all participants. Several studies that have included people with a cognitive impairment have found that if research is conducted in a safe context, it can be an enriching experience for all involved (Hellstrom, I et al 2007).