Introduction
In Australia, an aging population, together with changes to the aged care system as a whole, have contributed to an increase in the dependency of people resident in residential aged care facilities (RACFs) (AIHW, 2006; Andrews-Hall et al., Reference Andrews-Hall, Howe and Robinson2007). People with dementia comprise nearly 50% of all residents, the majority of whom receive the highest level of care (AIHW, 2006). With dementia being a progressive degenerative condition characterized by a trajectory of terminal decline, a growing body of international research supports the provision of a palliative approach in caring for this population (Lloyd-Williams Reference Lloyd-Williams1996; Shuster, Reference Shuster2000; Lloyd-Williams and Payne, Reference Lloyd-Williams and Payne2002; Panke and Volicer, Reference Panke and Volicer2002; Mitchell et al., Reference Mitchell, Kiely and Hamel2004; Sachs et al., Reference Sachs, Shega and Cox-Hayley2004; Parker et al., Reference Parker, Grbich, Brown, Maddocks, Willis and Roe2005). In the Australian context this is evident in the Australian Government's funding for the development of Guidelines for a Palliative Approach in Residential Aged Care (Australian Department of Health and Ageing, 2006) (henceforth referred to as the Guidelines (ADoHA, 2006)). The Guidelines are underpinned by an extensive international review of the literature, which supports a palliative approach to care as providing improved quality of life for residents of aged care facilities. The approach is proactive and ideally not delayed until the final stages of the disease trajectory (ADoHA, 2006). In particular, the Guidelines highlight the unique needs both of people with advanced dementia and their family members, who are positioned as key stakeholders in care processes, and whose engagement with staff and involvement in care and decision-making processes is considered best practice (ADoHA, 2006).
However, within RACFs the implementation of the Guidelines has been fraught with difficulties related to resource limitations, poor managerial support, the impact of existing cultures and the professional isolation of staff (Cheek et al., Reference Cheek, Gilbert, Ballantyne and Penhall2004; Moore and Haralambous, Reference Moore and Haralambous2007; Allen et al., Reference Allen, O'Connor, Chapman and Francis2008). Not surprisingly, despite a national roll-out program to support their implementation to date there is limited evidence of uptake of the Guidelines in RACFs (Allen et al., Reference Allen, O'Connor, Chapman and Francis2008). To explore the potential for implementing the Guidelines we undertook an action research project with the aim of investigating possibilities for RACF staff to develop their practice in ways that support a palliative approach to care provision. Central to this approach was an imperative to involve staff in processes whereby they had an opportunity to reflect on and critique their practice (Street and Robinson, Reference Street and Robinson1995; Warelow, Reference Warelow1997; Kim, Reference Kim1999). This paper reports findings of the project which highlighted effective strategies for facilitating staff engagement in a palliative approach to care. A key focus centered on meeting the dementia information needs of residents' family members.
Methods
Action research has a key focus on facilitating changes in “peoples' practices, their understandings of their practices and the conditions under which they practice” (Kemmis, Reference Kemmis2007). This focus highlighted the suitability of action research to our project, as the intent was to take action to develop RACF staff practice in ways that would support an evidence-based palliative approach to care provision. A key focus of action research is to facilitate an examination of taken-for-granted assumptions and habitual actions that constitute clinical practice (Street and Robinson, Reference Street and Robinson1995). To this end the method proceeds through a recurring helical cycle that involves a preliminary investigation and problem identification, planning, taking action and collecting data, analysis and reflection, and replanning (Kemmis and McTaggart, Reference Kemmis and McTaggart1986). Projects will progress through a number of action cycles in an attempt to bring about an improvement in practice.
In contrast to other types of research which are conducted by “outsiders”, in action research the enquiry, problem identification and decision-making processes are the responsibility of the participants whose practice is being examined. As such, action research is the method of choice when people, such as the RACF staff involved in this project, want to better understand and improve a situation (Street and Robinson, Reference Street and Robinson1995). In this project two registered nurses, one enrolled nurse and two unregulated workers employed in a residential dementia special care unit (SCU) comprised an action research group (ARG). Central to the collaborative intent, group members met over a sustained period of time to discuss and reflect on their practice. Each meeting was recorded and transcribed. Transcripts were developed into case notes, which provided a first level analysis of the discussions. The notes were returned to the group prior to each successive meeting, in order to facilitate critical reflection on key emerging issues and provide a marker of progress in the ARG's efforts to facilitate practice change. The meetings provided group members with an opportunity to explore a range of ideas which they considered important to developing their practices to support a palliative approach to care. Significantly, the group members had no prior experience of action research; and within the context of their normal work experience, no previous opportunity to explore their practice systematically.
The ARG engaged in a preliminary investigation (also known as the reconnaissance), to arrive at what Kemmis and McTaggart (Reference Kemmis and McTaggart1986) describe as an “initial diagnosis” of the key issues, where they shared information and understandings about their current practices. The investigation involved ten meetings on a regular basis between April 2006 and October 2007, giving staff an opportunity to share their concerns and, in the process, find a voice (Lather, Reference Lather1991; Street and Robinson, Reference Street and Robinson1995) and to explore possibilities for improvement, where previously they had felt powerless to effect change. Through their discussions the ARG identified a number of concerns which they planned to further explore through the first action cycle. A key focus of the cycle was to elicit family members' understandings of dementia and their perspectives of being involved in care decision-making. Thus, taking action and collecting data involved the conduct of one-hour semi-structured interviews with ten family members (approximately one third) of residents on the SCU. The first author, who worked with the ARG as a research collaborator/facilitator (Street and Robinson, Reference Street and Robinson1995), conducted the interviews which explored: (i) family members' understandings of dementia; (ii) the means by which they acquired information/knowledge about dementia, and (iii) their experiences of being involved in their relative's care. Interview transcripts underwent iterative/thematic analysis (Hansen, Reference Hansen2006) led by the first author, and findings were returned to the ARG for their consideration.
By reflecting on the data from the first action cycle, the ARG developed an agreed position for taking action. Thus, group members progressed to a second action cycle, in which they planned a strategy to better support family members by providing them with information packages about dementia and the SCU. The ARG located and reviewed a range of evidence-based resources and developed an information package which was distributed to relatives of 25 residents on the SCU. The effectiveness of the information package was evaluated by family members completing evaluation forms that were included with the information package. The evaluations contained short answer questions and items on an agree/disagree/not sure scale. The key findings of the preliminary investigation and the two subsequent action cycles are reported below, in conjunction with the reflections of the ARG.
The project was conducted under the auspices of the University of Tasmania Social Sciences Ethics Committee, Approval No. H8633
Results
Preliminary investigation and problem identification
A key concern revealed during the ARGs' initial discussions was their perceptions that family members of residents had a poor knowledge and understanding of dementia. Drawing on their experiences from practice the group suggested that residents' family members often “struggled” to make sense of the changes they observed in their relative because they had little understanding of the progressive nature of dementia. The group argued that the capacity of family members to be involved in care decision-making was undermined by their limited knowledge of the syndrome. Nevertheless, while confident in this position, the group also recognized the importance of gaining insight into the perspectives of other stakeholders. Therefore, in the first instance they planned to investigate how dementia was “understood and experienced” (Street, Reference Street1995) by residents' family members. Thus the first action cycle had a focus on eliciting family members' perspectives of dementia and their experiences of being involved in care decision-making, through semi-structured interviews.
Action Cycle 1
The findings of the interviews validated the group's perceptions that family caregivers had limited knowledge about dementia, with little understanding of the biomedical basis of the condition or the relationship between dementia and death. Moreover, family members expressed equally limited knowledge of the special care environment, and emphasized what they considered to be the largely ineffectual role of staff members on the SCU in assisting them to have a better understanding of the above issues.
ARG reflections
Reflecting critically on the interview data, ARG members recognized that there was no formal process for supporting family members to develop their understandings of dementia on the SCU. Rather, information on dementia had historically been provided on an ad hoc basis. Reflective of these conditions, ARG members described an absence of formal information resources, such as leaflets or fact sheets that addressed dementia and the operation of the SCU. Moreover, their discussion around this issue revealed that only one of the ARG members was aware of the existence of the Guidelines or other evidence-based resources that would assist staff to better support family members, and that the Guidelines were not accessible on the unit. The one member who knew of the Guidelines had attended a workshop associated with their roll-out. However, she argued that their implementation on the SCU was “almost impossible” amidst conditions of heavy workloads, short staffing and resourcing constraints. These conditions were recognized by the group as significant barriers to change.
As the discussions progressed, group members also critically reflected on their own passivity in accepting the status quo. For example, they recognized that as individuals they had previously accepted little responsibility for locating information which would assist family members to arrive at a better understanding of dementia, despite the long-held nature of their concerns. Rather, in the context of a hierarchical work environment, such initiatives were seen as the responsibility of management. Through their critical dialogues on the above issues, the group agreed to take action to address family members' information needs and in doing so to engage proactively with evidence which would assist them to achieve this change in practice. Thus, group members progressed to a second action cycle and developed an information package which was subsequently distributed to family caregivers of all residents on the unit.
Action Cycle 2
Following their reflections within Action Cycle 1 the ARG accessed the Guidelines and other evidence-based resources and developed an information package that was distributed to family members to address their information needs. The package included a booklet entitled “Information for family and friends of people with severe and end stage dementia” (Blue Mountains Division of General Practice, University of West Sydney, and Sydney West Area Health Service, 2006); and a fact sheet developed by group members containing information about specific characteristics of the SCU.
Twenty-one of the 25 family members (84%) who received an information package returned evaluation forms. These forms showed a resounding positive response to the information provided. For example, 100% of respondents agreed that the information package was “helpful” in “assist[ing] their understanding about dementia, changes caused by dementia, and future decisions which may need to be made”. The majority (91%) of respondents indicated that they did not find the booklet “too confronting” or the fact sheet “overwhelming” (100%). Moreover, 100% of respondents agreed that the booklet would be a useful resource for family members of newly admitted residents. Written comments to qualify this opinion included: “I wish I had more information when my aunt was admitted, it was all overwhelming.” Ninety-five percent of respondents held the same opinion about the fact sheet. For example, one family member wrote: “I wish that some one had given me this simple and easy-to-read and understand information when I needed it.” Additionally, 17 of 21 (81%) family caregivers indicated that the information booklet assisted them “to feel more comfortable to approach staff and discuss concerns in relation to their relative”. For example, one family member commented “Now that I fully understand the stages of dementia, I can ask the right questions . . .”
ARG reflections
When findings of the evaluations were returned to the ARG, this provoked members to share accounts of their observations, which indicated that the action had resulted in family members presenting to staff as “less anxious” and “less distressed” by resident behaviors and more “accepting” of specialized care practices on the unit. Additionally, ARG members observed that family were “more responsive” to staff and more confident to engage in discussion about their relatives' condition or care needs. Indeed, in the months following the completion of the action, ARG members remained inspired by what they had achieved. For example, one member described the impact of the action as “unbelievable” after seeing that changes in family members' demeanors and interactions on the unit had been sustained over four months.
Discussion
The findings of this project highlight how family members of people with dementia in a residential SCU had information needs which staff had not addressed. The RACF staff involved in this project had little understanding of available evidence which could assist them to better support family members, especially the existence of the Guidelines (ADoHA, 2006). These findings are consistent with those of Allen et al. (Reference Allen, O'Connor, Chapman and Francis2008), who found that aged care staff in an Australian multi-purpose service did not have access to the Guidelines, had no knowledge of them and had equally little understanding of evidence-based practice. However, our research demonstrated that by engaging staff members in a process whereby they could critically reflect on their practice in order to identify problems and arrive at new understandings of their situation, they were better positioned to engage with evidence within a palliative approach agenda. They could then execute change in their practice to address the information needs of family members. Indeed, the efficacy of this process was demonstrated by the positive outcomes reported by family members and the ARG.
For members of the ARG, their experiences of successfully effecting change on the SCU cannot be overstated – the entire group shared in the knowledge that they had made a real, tangible difference to the care of family members. This was an important transformation from their initial position, where the group had been unable to envisage a situation other than the status quo. Indeed, where aged care staff operate under a multitude of extraneous factors (workloads, staffing, resourcing) which constrain their ability to support an evidence based agenda (Robinson et al., Reference Robinson, Andrews-Hall and Fassett2007), guidelines and education alone will be insufficient to drive practice change. Rather, as our research indicates, staff need support to explore their practice through collaborative and sustained engagement with each other, in order to reframe their understandings and reconfigure their practice to support a palliative approach to care. While this was a small project with findings that cannot be generalized beyond the research setting, the processes employed offer important opportunities for aged care staff to be supported in ways that will assist them to adopt evidence-based practices to improve the care of people with dementia and their family members.
Conflict of interest
None.
Description of authors' roles
S. Andrews designed the study in collaboration with A. Robinson. S. Andrews was responsible for data collection, analysis and took a lead role in writing the paper. A Robinson and F. McInerney assisted with writing the paper and the development of successive drafts.
Acknowledgments
The authors thank those staff who were members of the action research group and family members who gave their time to participate in the project. The authors would also like to acknowledge the financial support provided by Southern Cross Care (Tas.) Inc. to conduct this research.
