Reducing Moral Distress in Nursing Providers of Dementia Care: Knowledge to Action in Continuing Care
The “REMIND-KTAC” Study
FINAL REPORT
January 31, 2019
Principal Investigator
Shannon Spenceley, RN; PhD
Faculty of Health Sciences
University of Lethbridge
Co-Investigators
Sienna Caspar, PhD; CTRS
Faculty of Health Sciences
University of Lethbridge
Sheli Murphy, RN; PhD
Senior Operating Officer
Covenant Health
Olu Awosoga, PhD
Faculty of Health Sciences
University of Lethbridge
Em Pijl, PhD; RN
Faculty of Health Sciences
University of Lethbridge
Community Organization Partner
JoAnn Molloy, RN
Senior Director, Operations
Continuing Care Facility
Covenant Health
Executive Summary
Purpose of the Study
The main objectives of this two-year study were to:
1 Improve a previously validated instrument to measure moral distress in dementia care in residential care settings (Moral Distress in Dementia Care Survey: MDDCS);
2 Develop a concise evaluation instrument based on the MDDCS, for measuring changes in levels, intensity and effects of moral distress (Moral Distress in Dementia Care Evaluation Survey: MDDCES);
3 Use these tools to gather information on the frequency, intensity, triggers and effects of moral distress on the residential care nursing workforce in in two care organizations in Alberta, Canada; and
4 Collaborate with care staff in two sites to design and implement an intervention to reduce moral distress, measure the intervention’s effectiveness, and seek the perspectives of staff who participate in the change.
Method
We conducted this research in three phases, in two affiliated faith-based care organizations in Alberta, across 16 sites. Participants were approximately 600 nursing care providers in three professional designations1 : registered nurses (RN),
Executive Summary licensed practical nurses (LPN) and health care aides (HCA).
Phase One: The MDDCS (validated in an earlier study2) was further revised to include an ‘overall level of moral distress scale’ and piloted in two facilities. The MDDCS was then distributed, and participant recruitment began, across the remaining 14 sites.
Phase Two: Staff member representatives from all sites were invited to one of two “Knowledge Summits” to review Phase One results, connect around the realities of dementia care, share examples of quality care, and discover potential strategies, approaches and interventions that might reduce moral distress in dementia care through supporting staff.
Phase Three: Using the feedback gathered in Phase Two, two interventions were developed in collaboration with caregiving staff at the two pilot sites. The interventions focused on leadership development and communication, were implemented over six months, and changes in moral distress were measured monthly. In addition, we held two focus groups at the intervention pilot sites to capture perceptions of progress. We also selected two control sites, and nursing staff members at these sites were asked to complete moral distress measurements.
Findings
Phase One: Sixty-seven respondents piloted the revised survey. An additional 430 participants completed the final survey from a potential pool of 1,400 eligible caregiving staff members, representing a response rate of 30%. Of these respondents, 60% were HCAs, 24% were LPNs, and 14% were RNs; 90% were female, and 66% had fewer than ten years of experience.
With some ranking variation between nursing role designations, the most frequent situations causing moral distress were:
1_ Seeing care suffer because there are not enough staff to do the work.
2_ Having to rush the care of residents with dementia due to lack of time—even though I know it might upset them.
3_ Having to make a resident with dementia wait for care because another resident needs me just as much, at the same time.
4_ Seeing a low quality of life for residents with dementia because there are not enough activities.
5_ Telling the resident with dementia things that are not true so he/she won’t get upset.
With some ranking variation between nursing designations, the situations causing the highest levels of moral distress were:
1_ Seeing the care suffer for residents with dementia because there are not enough staff to do the work.
2_ Seeing a low quality of life for residents with dementia because there are not enough activities.
3_ Having to rush the care of residents with dementia due to lack of time—even though I know it might upset them.
4_ Having to provide care to aggressive residents with dementia without the supports I need to feel safe.
5_ Seeing care that does not show respect to residents with dementia.
We noted significant overlap in the high frequency of particular situations, and the intensity of moral distress caused by those situations. In particular, the following situations happened at the highest frequency, and also caused the highest levels of distress:
1_ Seeing the care suffer for residents with dementia because there are not enough staff to do the work.
2_ Having to rush the care of residents with dementia due to lack of time—even though I know it might upset them.
3_ Seeing a low quality of life for residents with dementia because there are not enough activities.
4_ Having to make a resident with dementia wait for care because another resident needs me just as much, at the same time.
HCAs reported the highest mean level of moral distress over the past year, with a mean response of 6.5/10 on a scale in which 0 indicates no moral distress at all, and 10 is too much distress to handle. The level of moral distress was significantly higher in HCAs than in either LPNs (mean= 5.8) or RNs (mean=5.3). The mean level of moral distress for the whole sample was 6.1/10.
Moral distress had negative consequences for the emotional, mental and physical well-being of nursing caregivers of people living with dementia (PLWD) in these settings. Participants reported experiencing the following negative effects daily or at least weekly:
__ HCAs: Almost half of health care aides responding to the survey (48%) reported feeling physical pain (headaches or body pain) and physical exhaustion; 39% reported feeling emotionally drained.
__ LPNs: 38% of LPN respondents also reported feeling emotionally drained, and 33% reported feeling physical pain (headaches or body pain) and physical exhaustion.
__ RNs: just over 30% reported feeling emotionally drained and frustrated, and just under 30% reported experiencing feelings of guilt.
Participants also experienced negative effects on job satisfaction, although 88% of respondents reported NO intent to leave their job within the next year.
Phase Two: Summits involved 55 participants, and yielded information that was foundational to the selection of an intervention to trial in Phase Three. Data yielded 23 specific strategies in three general areas: responsive leadership, effective communication and systems to support person-centred care (see Appendix B).
Phase Three: In the survey portion of Phase Three, there were 57 respondents across two intervention groups and two control groups. Of these respondents, 63% were HCAs, 23% were LPNs, and 5% were RNs; 95% were female, and 70% had fewer than ten years of experience (a breakdown that is closely representative of the workforce in these sites). Thirty-three respondents (59%) completed at least three out of four surveys.
There was a significant decrease in the overall level of moral distress over time in the intervention group: the difference between intervention and control increased from -1.0 at baseline to -3.4 after three months, p<0.05. Therefore, although the intervention group began with a lower level of moral distress, this group still reported a significant reduction in moral distress over the three months, as compared to controls.
The greatest reductions in moral distress (reduction of 20-25% of baseline at each of the three measurement points) reported by respondents were in:
1_ The frequency with which they experienced “Having to rush the care of residents with dementia due to lack of time—even though I know it might upset them.”
2_ The intensity of moral distress experienced as a result of: “Seeing poor care for a resident with dementia because of poor communication between staff members”; “Telling the resident with dementia things that aren’t true so that he/she won’t get upset”; and, “Seeing the care for residents with dementia suffer because staff lack the knowledge and skills they need to provide dementia care.”
3_ The frequency with which they experienced some effects of moral distress, namely a decrease in incidence of: feeling withdrawn, physically sick, sad, guilty or like a failure; having bad dreams, losing sleep; and calling in sick, or engaging in unhealthy coping behaviours.
In the focus group portion of Phase Three, all participants reported experiencing less moral distress in their daily work. At mid-phase, we noted improvement in all desired outcomes3, with improvement continuing to the end of the project. The process of change opened up the lines of communication within care teams and with management, encouraged accountability, developed confidence in and comradery among staff members, and created an expectation and commitment to shared leadership. Participants told us that to sustain progress, it was important to: have management support, get all staff engaged in and owning the process, share their work with others to spread their success, and embed their improvements in processes like staff and family orientations and education.
Conclusions
The findings are consistent with other studies that indicate that moral distress is a significant feature of dementia care, has emotional, physical and psychological consequences for nursing caregivers, and significantly reduces job satisfaction in continuing care settings. In our study, HCAs reported the highest overall levels of moral distress, and also reported suffering the effects with greater frequency, as compared to other caregiving role designations. Staffing concerns and feeling rushed in the care of residents with dementia, having to choose between residents who need care at the same time, and observing a lack of activities for residents are reported as frequent occurrences, and as triggers for high levels of moral distress.
The MDDCS and MDDCES were easy to use, valid and reliable measures of the construct of moral distress. The MDDCES was found to be reliable in measuring changes in moral distress over one-month intervals.
Given the opportunity, knowledge and leadership support, care staff are capable of selecting, implementing, and leading practical interventions to improve dementia care and reduce moral distress.