Care providers learning to deal with troubled conscience through participatory action research

Participants and settings

The study took place in a municipal elderly care facility in northern Sweden. Of 21 housing facilities, one was randomized and staff agreed to participate in the intervention study. Opening interviews were held with six registered nurses (RNs), six enrolled nurses (ENs), and eight nurse assistants (NAs) (n = 20), all of whom were women. Two of the RNs had positions as first line managers. Of the 20 individuals who participated in the interviews, 14 nurses and one manager participated in the intervention. The number of participants in the intervention sessions varied between 10 and 14 care providers owing to, for example, illness-related absence from work or days off. Group size is of great importance when using PBL. The size of the group should make it possible to build a climate of sufficient security to show ‘who you really are’, where feedback is not threatening and where it is possible to give space for different perspectives and knowledge (Silén, 2004, p. 13). The participants had known each other after several years of teamwork. The researchers had only met the participants once in the individual interviews. The care providers had a mean work experience of 22.1 years in health care, and 8.6 years at the present unit. The man with the spitting behaviour, who was 89 years old at the beginning of the study, had moved into the unit 10 years earlier. His wife was deceased and he had three children. He had been diagnosed as suffering from cognitive impairment, but not dementia or any other severe diseases. The only medication he took was painkillers. He had worked as a farmer, had regularly used snuff for several years, and spat constantly throughout the day. In this study, the focus was mainly on care providers and their perspective. Carl’s perspective is therefore not equally illuminated. Owing to his cognitive impairment, Carl was not able to communicate about his spitting behaviour or the care provided, and he usually seemed unconscious of his spitting behaviour. However, when sick and older people are unable to communicate, it is important to raise their voices, that is, care providers can be their mouthpieces in such difficult situations. In the interests of confidentiality, the man has been given the fictitious name of ‘Carl’ and any distinguishing marks mentioned in the text have been altered, although their importance has been retained. The unit where the study took place consists of 13 occupied single-resident apartments. During the week, four to six care providers are on duty in the daytime, two in the evening and at night one care provider is responsible for two units (23 residents). At weekends, staffing levels are lower.

Data collection

The data in this study consisted of multiple sources: tape-recorded intervention sessions, observations, and the care providers’ reflections on observational notes.

Data analysis

The tape-recorded intervention sessions, containing both problem processing and reflections on observational notes, and handwritten observational notes were transcribed verbatim into text documents. All text documents were analysed with inspiration from content analysis. Content analysis focuses on textual data, aiming to group together similar types of utterances and ideas (Burnard, 1996). In order to deal with the different types of qualitative data and thus present the findings in an appropriate manner, a domain analysis, that is, an analysis of content areas illustrating the problem processing, was performed. A content area illuminates a specific area of content identified with minor interpretation (see Graneheim & Lundman, 2004). The domains are presented under six headings in line with the phases in the model of processing, and quotations from the intervention sessions and the observation notes are also presented.

Ethical considerations and approval

The care providers involved were informed about the purpose of the study and gave their informed consent. A daughter of the man being studied gave her oral permission for her father’s participation. Every effort was made to avoid worrying or disturbing the resident who was the subject during the observations (see Fangen, 2005, p. 156). According to Löfman, Pelkonen, and Pietilä (2004), it is of great importance in PAR to ensure equal balance between researchers and participants and hence proceed according to the participants. The study was approved by the Ethics Committee of the university (reference number 09-099).

1. Brainstorming and the care providers’ descriptions of the problem

During the first intervention session, the care providers described the care situation with Carl’s spitting behaviour as very difficult; they felt powerless to deal with it, and troubled conscience was generated when they felt that they behaved badly in interactions with Carl and thus provided him with poor care. As one care provider said, ‘He provokes feelings inside me which I don’t want to admit that I have; I’m ashamed at my feelings.’ The care providers said that Carl was constantly spitting and that speaking to him did not make him stop. The most common way to deal with Carl was ‘taking him to his apartment where he could spit almost freely’. Examples of statements made during one of the intervention sessions include: ‘We are rejecting him constantly and that’s not fun.’ ‘I’m doing a bad job.’ ‘We always say to him: go to your room, it hurts me. . .’

However, the care providers acted in different ways with regard to Carl’s spitting behaviour. Some tried to make Carl stop spitting, while others did not. They had also tried several times to reduce his spitting behaviour by encouraging him to read a book or a newspaper or watch television, but without success. A change in food consistency was also tried in the hope that it would stop him from spitting, but that was not effective either. They also described troubled conscience regarding Carl’s co-residents, who were also affected by his spitting behaviour. The care providers felt guilty about their feelings against him, and they did not like to see themselves as such terrible human beings. On the one hand, they had an aversion to Carl; on the other hand, they expressed pity for him. It was a very burdensome situation for each of them, which was difficult to talk about.

2. Initiating the action phase through sharing one’s thoughts and feelings

During the next intervention sessions, the care providers started to share their thoughts and feelings about Carl’s behaviour. The care providers came to realize that they expressed different thoughts about Carl as a person. Some thought he was a charming person apart from his spitting behaviour, while others found him totally disgusting. Through discussions it also emerged that they had different thoughts about Carl’s behaviour. Some considered his behaviour to be intentional, while others did not. One care provider said: ‘You feel sorry for him, he’s sick and he’s so lonely. . . His life must be a tragedy. . . I’ve heard that he was a charmer once, I think he’s charming and handsome.’ Another care provider said: ‘He’s disgusting and mean. . . He’s challenging us.’

When some care providers were bold enough to express that they felt soiled, disgusted and angered by Carl’s repeated spitting, others felt able to follow. Even if such feelings troubled their conscience, since they felt that they were not supposed to react like that, the possibility of sharing such dark feelings relieved their burden. To take an example from one of the intervention sessions: ‘It is very important for us to talk about this awful situation. It’s too hard for us to understand why he’s doing this.’

Together, they eventually also came to understand that many of them lacked knowledge about spitting behaviour.

3. Actions taken through gaining more knowledge about behavioural symptoms

Because the care providers needed to deepen their knowledge about behavioural symptoms, researchers shared with them knowledge gained from recent research in the area during subsequent intervention sessions. Such knowledge included the facts that spitting behaviour, like other behavioural symptoms, is due to illness, not to bad intentions, and that some behavioural problems may be unsolvable. The care providers were also informed of studies showing that care providers encountering behavioural symptoms like spitting often express powerlessness, frustration and anger, and that it is common not to find any solution to the problem.

During the intervention sessions, the care providers reflected on the information provided. They felt relief that studies confirmed their experiences, that is, that they were not ‘horrible’ human beings to react the way they did. Based on their newly gained knowledge, they became aware that it was easier to cope with Carl’s behaviour when they viewed him as sick and not as being intentionally offensive. They became aware of the importance of working with their own attitudes and supporting each other in order to maintain an attitude that Carl’s spitting was not intentional. As one care provider said: ‘He’s sick. I don’t believe he’s aware of what he’s doing.’ (The rest of the group confirmed the statement by saying ‘I agree.’) On the basis of their collective attitude, they were now ready to take the initiative to use verbal and tangible action to reduce the spitting behaviour. One example of a statement from one of the intervention sessions is: ‘We are trying to think in new directions.’

4. Actions taken in order to reduce the spitting behaviour

The care providers and researchers decided together that all the care providers should take a common approach and be as clear as possible in their interactions with Carl, and they should ask him to try to stop spitting. It was also decided that he should eat all his meals in his apartment in order to prevent him from spitting in the multipurpose room where most of his co-residents ate their meals. The care providers had noted that when males were caring for Carl, he often stayed calm and his spitting behaviour seemed to decrease. During the time of the study, a younger man was temporarily employed at the unit. It was decided that this man should pay extra attention to Carl to see if the spitting behaviour declined. Medications such as scopolamine were prescribed in cooperation with the elderly psychiatric team, but were discontinued almost immediately because of Carl’s over-sensitivity to the drugs. Antidepressant drugs were also tried without success. These measures were all performed and evaluated continuously. Viewing Carl’s behaviour as unintentional made it easier for the care providers to care for him and cope with his behaviour. Unfortunately, none of the other actions were successful in reducing the behaviour. The care providers still found it difficult to care for Carl, and they still had troubled consciences as they wanted to do more for him. One exchange during an intervention session was as follows: ‘Researcher: How are things with Carl and his spitting? Care provider: Nothing of what we decided has helped (to reduce the spitting behaviour). . . It’s more disgusting than ever. . .’

A decision was taken to perform non-participant observations of the spitting behaviour and generate new ideas for how to act in the situation.

5. Gaining more knowledge about what specifically troubles their consciences through observations

6. Evaluation of actions

The care providers now knew that there was no way of changing or stopping Carl’s spitting behaviour, and they described a growing insight into the need to share their thoughts with each other in order to cope with the situation. They found relief when they realized that they were not alone in their frustration with the spitting behaviour. They came to realize that they were trying to do their best despite their feelings of shortcomings in this ‘no way out’ situation. They also described that gaining more knowledge about behavioural symptoms and having the opportunity to share their sometimes contradictory feelings about Carl in the intervention sessions helped them to relieve their burdened consciences. As none of the measures taken reduced the spitting behaviour, they finally reached an understanding that Carl’s spitting behaviour seemed to be impossible to solve, but possible to relate to. It was easier to cope with the behaviour if it was perceived as unintentional. In the intervention sessions, this was expressed thus: ‘We have now reached the conclusion that we cannot usually do anything to stop him from spitting. . . We cannot rush up to him every time he spits – it doesn’t help. . . We can only relate to the behaviour.’ During the intervention sessions, and with help from the model of processing, they found ways to work systematically with a problem that generated troubled conscience in their daily work. ‘Researcher: Have your perceptions of your job changed? Care provider: Yes . . . The possibility of influencing our working conditions. You [the researchers] have been supporting us. We wouldn’t have been able to do that on our own.’ Carl continued to spit, but the care providers’ consciences were eased and they did not pay attention to his behaviour as they did before the intervention.

Study strengths and limitations

In this study, the intention was to comply with standards for establishing trustworthiness according to Lincoln and Guba (1985) and Lennie (2006). Multiple sources of data and multiple methods of data collection were used, which may be a way to achieve trustworthiness in PAR. The process of PAR meant in this study an ongoing meta-evaluation and critical reflections of actions were undertaken. It was of great importance to perform a rigorous data analysis, and the analysis is illustrated with quotations from the intervention sessions and the observations, in order to achieve and convey trustworthiness (see Lennie, 2006). All steps in the analysis process were discussed in an open and critical dialogue within the research group to ensure consistency of the findings. PAR is a useful research method for studying difficult situations in elderly care. The strength of the method is that researchers and participants strive together to solve problems, making the process concrete and grounded in the daily work of care. The model of processing was successfully supporting the process of PAR. During the intervention sessions, it was important to let the care providers decide the areas of discussion based on their experiences of troubled conscience, and many participants narrated their feelings of being heard and listened to for the first time. In line with Lennie (2006), the emergent understanding from the intervention sessions (PAR) was, through a reciprocal process, constantly validated with the participants. According to Patton (2002, p. 291), the researchers’ presence at the unit may have influenced the events during the observations. There is always a risk that participants will behave differently with an observer present.

Implications and conclusion

In this study PAR contributes, through reflection and learning, with increased understanding of the necessity to listen to one’s conscience and the possibility of using conscience as a driving force to develop clinical practice. Our conscience has something to teach us, and PAR may be a suitable method for working with this learning process. The findings show an important situation, requiring action and research to increase knowledge about ways to deal constructively with troubled conscience. The study reveals that an enlightened conscience can be an important asset, that is, a driving force, which may help the care provider to stay healthy and the resident to receive appropriate care. The use of PBL in the PAR-process is suggested as a fruitful combination; reflection and extending one’s understanding are central concepts in both processes. PBL may contribute to the PAR-process in clinical practice with its systematic and investigative approach to process a problem. Combining PBL and PAR may provide participants with a tool for handling problems in daily work, which is important to elaborate in further studies. Although this study focused on changes at individual and group levels, the need for changes at an organizational level are also suggested, for example, arranging profile housing in elderly care for residents with severe behavioural symptoms in order to facilitate high quality care and work-related health. It is also suggested that clinical supervision featuring ‘sharing one’s conscience’ should be provided regularly. Further research in the area should target the process of care providers learning more about different kinds of behavioural symptoms.