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

Abstract

The aim of this study was to identify a process to assist care providers in dealing constructively with their troubled conscience generated by a difficult situation in elderly care relating to spitting behaviour. Our idea was, with help from participatory action research (PAR), that sharing and reflecting with others upon the voice of conscience, may support care providers to find ways to deal constructively with troubled conscience. Care providers in municipal elderly care participated in intervention sessions over one year, and with support from PAR, they were able to learn to ease the burden of a troubled conscience. They dealt with their troubled conscience constructively by sharing their thoughts and feelings, and gaining more knowledge about behavioural symptoms. They were trying to take relevant measures when caring for the resident, and perceiving the behaviour as unintentional. In this study PAR contributes with increased understanding of the necessity to listen to one’s conscience and of the possibility of using conscience as a driving force, to develop clinical practice. This contribution of PAR may in the long run increase quality of care and work-related health.

Keywords

Behavioural symptom conscience elderly care participatory action research stress of conscience

Introduction

This study is a part of the ‘Stress of Conscience Study’, in which an intervention is implemented aimed at finding ways to deal constructively with stress of conscience (stress related to troubled conscience) in residential elderly care. In interviews care providers have expressed feelings of troubled conscience when they feel unable to provide the care they want and believe is their duty (e.g. Rasmussen, 1999; Söderberg, 1999; Sørlie, 2001; Strandberg, 2002).

An interview study in residential elderly care shows that situations that generated troubled conscience in the daily care of residents were, among other things, described as being part of providing care that is or feels wrong (Ericson-Lidman, Norberg, Persson, & Strandberg, 2012). Troubled conscience may generate stress of conscience, and Glasberg, Eriksson, and Norberg (2007) found a statistically significant correlation between stress of conscience and burnout among general healthcare personnel. Stress of conscience may obviously and seriously jeopardize care providers’ health, and together these findings therefore point to a need to take action and intervene in order for care providers to learn to constructively deal with their troubled conscience. In this study, the care providers in interviews and during the first intervention session said that they struggled with troubled conscience in the care of an old man with spitting behaviour living at the unit of intervention. With support from participatory action research (PAR), care providers and researchers together decided to learn more about this difficult situation in order to deal with it constructively, and thereby both increase the quality of care and decrease stress of conscience among the care providers. Thus, the aim of this study is to identify a process to assist the care providers in dealing constructively with their troubled conscience generated by a difficult situation in elderly care relating to spitting behaviour. The PAR-process was performed with help from a ‘model of problem processing’ inspired by Silén (2004).

Literature review: Conscience, troubled conscience and behavioural symptoms

Conscience can be regarded as central to a person and has important tasks within the person as a whole (Aldén, 2002, p. 161). Conscience refers to cognitive, volitional and emotional acts or psychological processes belonging to a person’s thought, volition and emotional life (Wermlund, 1966, p. 179). In a questionnaire study, general healthcare personnel perceived conscience as an authority, a warning signal, a demand for sensitivity, an asset, a burden, and dependent on culture (Dahlqvist et al., 2007). About 70 percent of nursing staff (n = 146) in residential elderly care perceive that the voice of conscience must be interpreted; 71 percent that conscience requires inner peace to be heard; and 86 percent that conscience cannot be avoided (Juthberg, Eriksson, Norberg, & Sundin, 2010). The perception of conscience as a warning signal against hurting others and the inability to follow one’s conscience at work has been associated with stress of conscience in healthcare personnel (Glasberg, Eriksson, & Norberg, 2008). To deaden one’s conscience in order to keep working has in elderly care been found to be associated with stress of conscience (Juthberg, Eriksson, Norberg, & Sundin, 2007). Experiencing stress of conscience, generated from perceiving one’s work as so demanding that it influences home life, and from perceiving oneself as unable to live up to others’ expectations at work, is also found to be associated with ‘emotional exhaustion’, that is, the core dimension of burnout (Juthberg et al., 2010). Studies reveal that burnout among healthcare personnel negatively affects quality of care (e.g. Holmqvist & Jeanneau, 2006; McHugh, Kutney-Lee, Cimiotti, Sloane, & Aiken, 2011; Shinan-Altman & Cohen, 2009; Vahey, Aiken, Sloane, Clarke, & Vargas, 2004).

Caregiver burden has been related to behavioural symptoms in persons with dementia (Miyamoto, Tachimori, & Ito, 2010), such as picking behaviour (Johansson, 2005), aggression (Graneheim, Norberg, & Jansson, 2001), screaming (Hallberg & Norberg, 1990), wandering (Zingmark, Norberg, & Sandman, 1993), or spitting (Koopmans, van der Molen, Raats, & Ettema, 2009). In a study performed in psychiatric care, care providers regarded spitting as the most insulting patient behaviour. Feelings of disgust in turn raised feelings of guilt and pangs of conscience in the care providers, who stated that their feelings towards the patient were not acceptable in the care of a sick person (Hellzén, Asplund, Sandman, & Norberg, 1999). Strategies adopted by nurses who care for so-called ‘difficult’ patients are persuasion, compromise and emotional distance (Michaelsen, 2012).

In summary, troubled conscience and stress of conscience are studied to a limited extent. However, it is known that spitting and other behavioural symptoms among residents in, for example, residential elderly care may generate troubled conscience in care providers. Care providers’ conscience can serve as a guide and be an asset in the daily care of the elderly; however, care providers may find it difficult to understand what their conscience is saying in such difficult situations. Our idea was, with help from PAR, that sharing and reflecting with others upon the voice of conscience, enlightening and interpreting it, may through increased awareness and knowledge support care providers to find ways to deal constructively with troubled conscience. This awareness and knowledge may support care providers to decrease their stress of conscience and thus increase the opportunity to stay healthy, and equally important, to improve the quality of care.

Methodology

In this study a qualitative approach was used. The study is part of an intervention study in which the design is grounded in PAR. Participatory action research aims to help participants, with support from researchers, to extend their understanding of their situation and find solutions to problems through a systematic process (Day, Higgins, & Koch, 2009; Stringer, 1999, p. 10). In PAR, researchers and participants work together in a systematic way to look, think and act upon different kinds of problems (Day et al., 2009). Participants are seen as experts on their own needs and preferences, and PAR can be regarded as a quality assurance strategy that simultaneously provides participants with opportunities to become collectively and individually empowered in their daily work (Quixley, 2008). PAR has been used in nursing research with clinicians to illuminate abstract concepts and complex situations (Petersson, 2009). The PAR process is described as being democratic, equitable, liberating, meaningful, useful, life enhancing (Stringer, 1996), inducing human flourishing (Koch & Kralik, 2006, p. 1), and has been found to lead to the preservation of practice changes (e.g. Koch, Selim, & Kralik, 2002). According to Dick (2009), action research has during the years been developed to fit the situation under study, rather than following a template. In this study, the ‘model of problem processing’ was considered to fit the situation, a process inspired from problem-based learning (PBL) (e.g. Silén, 2004). PBL has been found useful in higher education (Maudsley, 1999) and has attracted great interest around the world (Hård af Segerstad, Helgesson, Ringborg, & Svedin, 1997, p. 9). PBL builds on prior knowledge, integration, critical thinking, and reflection on learning (Maudsley, 1999). Distinctive to PBL is the explorative approach and responsibility for learning, and it is of interest to identify the learning needs, and to manage and evaluate one’s learning. Motivation as a driving force in learning is also central to PBL (Silén, 2004, pp. 1–2, 12, 16). In PBL the learning process is active which means to reflect, take a stand and to intervene (Silén, 2004, p. 17), which may be compared to ‘look, think and act’, phases described by Koch and Kralik (2006, p. 28). The outlook on learning and knowledge in PBL is associated with a humanity that regards each person as actively creative, with a willingness and ability to acquire knowledge and skills. Learning may give possibilities to discover new perspectives and result in alternative ways of interpret and handle various situations (Silén, 2004, pp. 15–16). In this study, participant’s motivation was to learn more about a difficult situation that generated troubled conscience, that is, to uphold work-related health and to provide good quality of care. Theories of conscience are not the focus of this study and therefore not further elaborated.

The model of problem processing began with individual interviews, published elsewhere, where participants narrated situations that generated troubled conscience in their daily practice (see Ericson-Lidman et al., 2013), and the findings were used to identify areas which could be fruitful in learning more about PAR. Using the model of processing (phases in italics), the participants, together in the work-group, prioritized among the situations that generated troubled conscience according to their narrations in the interviews.

When the work-group had decided on a situation to learn more about, that is, an older man’s spitting behaviour, they brainstormed about it together with the researchers to describe the problem in a deeper sense (see Findings domain 1–2). Then the group inventoried their knowledge and their learning needs, which were planned to be fulfilled (see Findings domain 3, 5). When learning needs were fulfilled, a discussion about reasonable possibilities of change started, and a plan for meaningful and possible interventions (the action plan) in the care of the man with spitting behaviour was worked out (see Findings domain 4), and after working through the model of processing, actions were evaluated (see Findings domain 6). The model of processing is not linear and static, that is, the group may discover their needs to go back and forth in the process, which were evident in this study. PAR is thought to involve a ‘spiral of self-reflective cycles’, wherein participants are moving back and forth in the process (see Kemmis & Taggart, 2008, p. 276). During the forthcoming intervention sessions, the action plan was revised and new actions were implemented. The role of the researchers was to act as group facilitators and observe group dynamics. It was important to listen to the participants, to let them decide the direction of the conversations, and to support them in staying focused on possible actions (see Day et al., 2009). The researchers are experienced within the field of residential elderly care and have knowledge about theories of conscience.

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.

The intervention sessions

As described above, PAR was used to assist the care providers in extending their understanding of the difficult situation. The researchers and the participants worked together to find solutions to the problem. Intervention sessions were held once a month from January 2010 to March 2011 (with no sessions during July and August). Two researchers were present at every session, which lasted for about 90 minutes.

Non-participant observations

To obtain descriptions of the interactions between Carl, his care providers and co-residents, 12 non-participant, open observations were conducted from May 2010 to January 2011. The number of observations was not decided on in advance, but when no new information was noticeable the observations were terminated (see Merriam, 1994, p. 106). Each observation lasted for a maximum of two hours, a time limit which was decided on in advance and based on ethical considerations. Observational and mental notes, unlimited by predetermined foci (compare Patton, 2002, p. 260; compare Polit & Beck, 2010, p. 354), were written during the observations. During the intervention sessions, the care providers were given the opportunity to read the complete observational notes and to reflect on the observed situations in order to learn more about the situations together in the work-team.

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).

Findings

The findings – the process of dealing constructively with the care providers’ troubled consciences relating to spitting behaviour – are presented in six domains: 1) brainstorming and the care providers’ descriptions of the problem; 2) initiating the action phase through sharing one’s thoughts and feelings; 3) actions taken through gaining more knowledge about behavioural symptoms; 4) actions taken in order to reduce the spitting behaviour; 5) gaining more knowledge about what specifically troubles their consciences through observations, a) researchers’ observations, b) the care providers’ reflections on observations; and 6) evaluation of actions.

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

a) Researchers’ observations

The observations showed that the care providers excluded and isolated Carl. In their efforts to distract Carl from spitting in public spaces, the care providers rejected and sometimes even banished him from these areas. When Carl wanted contact with the care providers who rejected him, they often tried to distract him with food or snacks, while continuing to withhold their company. Examples from the observations include: ‘Carl comes into the staff room. One care provider reacts immediately and stands up. Care provider: ‘‘Come on, Carl, we are having a coffee break now, wait here.’’ The care provider follows Carl back to the multipurpose room and gives him a couple of biscuits.’ Another way to distract Carl from spitting in public spaces was to pay him compliments, which he often rejected.

The care providers protected co-residents by rejecting Carl, and in their efforts to do so they used the same strategy of rejecting and sometimes even banishing him. From observations: ‘Carl is sitting in an arm chair and spits on the floor. A care provider notices his behaviour and acts immediately by saying to him, ‘‘Come on Carl, the others have not finished their supper yet’’, and taking him to his room.’ In these situations, the care providers’ reactions were both indirect and direct as they not only tried to prevent the spitting behaviour, but also tried to prevent Carl from disturbing the co-residents by arranging an area which he was forbidden from entering. Without intervening, the care providers observed co-residents when they rejected and insulted Carl. The co-residents did not allow Carl to come near them, and if he did, they yelled at him and called him unpleasant names. From observations: ‘A co-resident yells at Carl when she sees him spitting on the floor: ‘‘Stop spitting, you heard me! You blasted dirty old man!’’’

The observations also showed that the care providers struggled but failed to show Carl consideration. They sometimes tried to initiate small talk with him, but he was often unresponsive or ended the small talk by laying his head in his hands and shutting his eyes, as if to signal that he was no longer available for communication: ‘A care provider approaches Carl, who sits asleep in an arm chair in the multipurpose room. Care provider: ‘‘How are you today?’’ Carl: ‘‘Feeling bad. . .’’ Care provider: ‘‘Are you in pain?’’ Carl: ‘‘No. . .’’ (putting his face back into his hands).’

b) The care providers’ reflections on observations

When reflecting on observational notes, together with researchers and their understanding of the situation, the care providers became aware that they were involved in excluding and isolating Carl. One care provider reflected thus: ‘It was depressing and shocking to read the observational notes. It was horrible to see ‘‘on paper’’ what we are doing [rejecting him] and how extensive his spitting is.’ They said they were filled with remorse and an increased understanding that rejecting Carl or banishing him to his apartment generated feelings of troubled conscience. It became obvious that they strived to initiate contact through dialogue and conversation, but they also realized that they were struggling but failing to show him consideration. Carl also seemed to crave physical proximity, which aroused feelings of disgust in the care providers, and their inability to respond to him in the way he needed generated further troubled conscience. They had become aware of and learned that it was a ‘no way out’ situation.

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.

Reflections

Participatory action research facilitated the care providers’ way to learn to deal constructively with their troubled consciences in a difficult care situation. As a practical contribution, our findings show that it is important for care providers to increase their awareness of what their troubled consciences are telling them. During the intervention, with assistance from the PAR design, the care providers found relief when they learned that they were not alone in their frustration with the spitting behaviour. Knowing that it was easier to cope with the behaviour if it was perceived as unintentional made it easier to care for Carl. As care providers felt it easier to care for Carl, it is logical to believe that the quality of care he received improved, even if he was not able to give his opinion due to his cognitive impairment.

Troubled conscience is the focus of this study. Conscience in the philosophical and theological literature is described as Dasein’s call of itself (Heidegger, 1927/1962), as coming from within the human being simultaneously coming from a higher instance (Ricoeur, 1992), and as related to natural law, that is, conscience is God’s voice in the human being (Hoose, 1999). In the present study, the care providers learned with help from PAR that they needed to ‘know together’ and to ‘share knowledge’ in the sense of the Latin word conscientia (see Langston, 2001) in order to relieve their consciences. Noel (1999) writes that the Latin word phronesis may include practical reasoning and practical wisdom. The concept of phronesis concerns the way people act in everyday situations by asking: ‘What is the right thing to do in this situation?’ Ratzinger (2007) writes that our conscience needs information and education acquired with the help of our fellow human beings, and that conscience may be understood as ‘co-knowledge’ (pp. 27, 51, 62). Conscience is an authority that may help care providers to reflect upon and learn from their mistakes. Transforming one’s own and others’ mistakes into new knowledge may create meaning, pride and a feeling of positive power to be used in doing one’s best for the patient, and thus contribute to one’s development as a human being (Dahlqvist, 2008, pp. 47, 51). Our conscience may provide enlightenment in the moment and guide us to do good and to avoid evil, that is, our conscience may foster us (Katolska Kyrkans Katekes, 2011). PAR is a social process of collaborative learning (Kemmis & McTaggart, 2008, p. 277), that is, researchers and co-researchers co-create knowledge, which may be compared to the Latin word conscientia mentioned above. Practical reasoning shared with co-workers may give care providers wisdom to be used in difficult care situations, increasing their awareness of what generates troubled conscience and thus learning to deal with their consciences constructively. Thus, conscience enlightened through discussion and analysis may be an important asset to both the long-term health of the care provider and the quality of care the resident receives.

When every attempt to solve the problem of Carl’s spitting behaviour was unsuccessful, the care providers felt they had no way out. The situation was serious and burdensome for the care providers, as well as for the co-residents. The severity of this situation highlights an organizational gap in elderly care, which we suggest may be filled by both appropriate care of the elderly with behavioural symptoms and appropriate work environments. According to Sherrell, Anderson, and Buckwalter (1998), elderly people with chronic mental ill-health deserve to have treatment interventions tailored to their specific, individual needs, indicating that special forms of accommodation, ‘profile housing’, are sometimes needed. The care in profile housing would be designed to avoid disturbing co-residents, and meeting the individual’s specific needs with the help of specially tailored day schedules taking precedence over group activities (Vårdsamverkan FyrBoDal, 2011). Research has shown the advantages of special living arrangements for the elderly, such as group dwellings for people suffering from dementia (e.g. Helgesen, Larsson, & Athlin, 2010). Arranging profile housing may be a visionary and wise initiative and a resource which elderly persons with severe behavioural symptoms should be able to take advantage of.

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.

Footnotes

Acknowledgements

We would like to thank the participants in the study and our research colleagues in the ‘Stress of Conscience Study’. We would also like to thank Professor Emerita Astrid Norberg for valuable comments.

We also thank Svante Lifvergren for leading the review process for the author of this article. Should there be any comments/reactions you wish to share, please bring them to the interactive portion (Reader Responses column) of the website: .

Funding

This work was supported by the Swedish Council for Working Life and Social Research [2010-0296]; the Swedish Research Council [K 2011-70X-21823-01-3]; and the AFA Insurance [090136].

Author biographies

Eva Ericson-Lidman, RNT, PhD, is senior lecturer at Department of Nursing, Umeå University, Sweden.

Gunilla Strandberg, RNT, is Professor in the Department of Nursing, Umeå University, Sweden.

References

Aldén, M. (2002). Samvete och samvetsfrihet. En analys av samvetskonflikter i det svenska samhället och av begreppen samvete och samvetsfrihet [Conscience and freedom of conscience. An analysis of conflicts of conscience in Swedish society and the concepts of conscience and freedom of conscience]. PhD thesis, University of Lund.

Burnard

(1996) Teaching the analysis of textual data: An experimental approach. Nurse Education Today 16(4): 278–281.

Dahlqvist, V. (2008). Samvete i vården. Att möta det moraliska ansvarets röster. [Conscience in healthcare. To meet the voices of moral responsibility]. Department of Nursing, Umeå University Medical Dissertations, New Series No. 1149. ISSN 0346-6612.

Dahlqvist

Eriksson

Glasberg

A.-L.

Lindahl

Lützén

Strandberg

Norberg

(2007) Development of the perceptions of conscience questionnaire. Nursing Ethics 14(2): 181–193.

Day

Higgins

Koch

(2009) The process of practice redesign in delirium care for hospitalized older people: A participatory action research study. International Journal of Nursing Studies 46(1): 13–22.

Dick

(2009) Action research literature 2006–2008: Themes and trends. Action Research 7(4): 423–441.

Ericson-Lidman

Norberg

Persson

Strandberg

(2013) Health care personnel's experiences of situations in municipal elderly care that generate troubled conscience. Scandinavian Journal of Caring Sciences 27(2): 215–223.

Fangen

(2005) Deltagande observation [Participant observations], Lund: Liber.

Glasberg

A.-L.

Eriksson

Norberg

(2007) Burnout and stress of conscience among healthcare personnel. Journal of Advanced Nursing 57(4): 392–403.

10.

Glasberg

A.-L.

Eriksson

Norberg

(2008) Factors associated with ‘stress of conscience’ in healthcare. Scandinavian Journal of Caring Sciences 22(2): 249–258.

11.

Graneheim

U. H.

Lundman

(2004) Qualitative content analysis in nursing research: Concepts, procedures and measures to achieve trustworthiness. Nurse Education Today 24(2): 105–112.

12.

Graneheim

U. H.

Norberg

Jansson

(2001) Interaction relating to privacy, identity, autonomy and security. An observational study focusing on a woman with dementia and ‘behavioural disturbances’ and on her care providers. Journal of Advanced Nursing 36(2): 256–265.

13.

Hallberg

I. R.

Norberg

(1990) Staffs’ interpretation of the experience behind vocally disruptive behavior in severely demented patients and their feelings about it. An explorative study. International Journal of Aging and Human Development 31(4): 295–305.

14.

Heidegger

(1927/1962) Being and time [Original title: Sein und seit], Oxford: Blackwell Publisher.

15.

Helgesen

A. K.

Larsson

Athlin

(2010) ‘Patient participation’ in everyday activities in special care units for persons with dementia in Norwegian nursing homes. International Journal of Older People Nursing 5(2): 169–178.

16.

Hellzén

Asplund

Sandman

P.-O.

Norberg

(1999) Unwillingness to be violated: Carers’ experiences of caring for a person acting in a disturbing manner. An interview study. Journal of Clinical Nursing 8(6): 653–662.

17.

Holmqvist

Jeanneau

(2006) Burnout and psychiatric staff’s feelings towards patients. Psychiatry Research 145(2–3): 207–213.

18.

Hoose

(1999) Conscience in world religions, Leominster: Gracewing.

19.

Hård af Segerstad

Helgesson

Ringborg

Svedin

(1997) Problembaserat lärande. Idén, handledaren och gruppen [Problem-based learning. The idea, the supervisor and the group], Stockholm: Liber.

20.

Johansson, K. (2005). Picking behavior in persons with dementia. Department of Nursing, Umeå University Medical Dissertations, New Series 949, ISBN 91-7305-947-1.

21.

Juthberg

Eriksson

Norberg

Sundin

(2007) Perceptions of conscience in relation to stress of conscience. Nursing Ethics 14(3): 329–343.

22.

Juthberg

Eriksson

Norberg

Sundin

(2010) Perceptions of conscience, stress of conscience and burnout among nursing staff in residential elder care. Journal of Advanced Nursing 66(8): 1708–1718.

23.

Katolska Kyrkans Katekes [Catholic Church Catechism]. (2011). Artikel 6. Samvetet. § 1777, 1783 [Article 6. Conscience]. Retrieved 13 May 2011, from: http://www.katekesen.se/.

24.

Kemmis

McTaggart

(2008) Participatory action research. Communicative action and the public sphere. In: Denzin

N. K.

Lincoln

Y. S.

(eds) Strategies of qualitative inquiry, 3rd ed. Los Angeles, CA: SAGE, pp. 271–330.

25.

Koch

Kralik

(2006) Participatory action research in health care, Oxford: Blackwell Publishing.

26.

Koch

Selim

Kralik

(2002) Enhancing lives through the development of a community-based participatory action research programme. Journal of Clinical Nursing 11(1): 109–117.

27.

Koopmans

van der Molen

Raats

Ettema

T. P.

(2009) Neuropsychiatric symptoms and quality of life in patients in the final phase of dementia. International Journal of Geriatric Psychiatry 24(1): 25–32.

28.

Langston

(2001) Conscience and other virtues, University Park, PA: Penn State University Press.

29.

Lennie

(2006) Increasing the rigour and trustworthiness of participatory evaluations: Learning from the field. Evaluation of Australasia 6(1): 27–35.

30.

Lincoln

Y. S.

Guba

E. G.

(1985) Naturalistic inquiry, Beverly Hills, CA: SAGE.

31.

Löfman

Pelkonen

Pietilä

A. M.

(2004) Ethical issues in participatory action research. Scandinavian Journal of Caring Sciences 18(3): 333–340.

32.

Maudsley

(1999) Do we all mean the same thing by ‘Problem-based learning’? A review of the concepts and a formulation of the ground rules. Academic Medicine 74(2): 178–185.

33.

McHugh

M. D.

Kutney-Lee

Cimiotti

J. P.

Sloane

D. M.

Aiken

L. H.

(2011) Nurses’ widespread job dissatisfaction, burnout, and frustration with health benefits signal problems for patient care. Health Affairs 30(2): 202–210.

34.

Merriam

S. B.

(1994) Fallstudien som forskningsmetod [Case study research in education], Lund: Studentlitteratur.

35.

Michaelsen

J. J.

(2012) Emotional distance to so-called difficult patients. Scandinavian Journal of Caring Sciences 26(1): 90–97.

36.

Miyamoto

Tachimori

Ito

(2010) Formal caregiver burden in dementia: Impact of behavioral and psychological symptoms of dementia and activities of daily living. Geriatric Nursing 31(4): 246–253.

37.

Noel

(1999) On the varieties of phronesis. Educational Philosophy and Theory 31(3): 273–289.

38.

Patton

M. Q.

(2002) Qualitative research and evaluation methods, 3rd ed. London: SAGE.

39.

Petersson, P. (2009). Att göra abstrakta begrepp och komplexa situationer konkreta. En avhandling om deltagarbaserad aktionsforskning i svensk vård och omsorg [Concretizing abstract concepts and complex situations in Swedish health and social care by using participatory action research]. Örebro Studies in Care Sciences 26, Örebro University. ISSN 1652-1153.

40.

Polit

D. F.

Beck

C. H.

(2010) Nursing research. Appraising evidence for nursing practice, 7th ed. Philadelphia, PA: Lippincott, Williams & Wilkins.

41.

Quixley, S. (2008). Participatory action research: An outline of the concept. Retrieved 6 September 2012, from: http://www.suziqconsulting.com.au/free_articles_files/CD%20-%20PAR%20Detailed%20Overview%20-%20Aug08.pdf.

42.

Rasmussen, B. H. (1999). In pursuit of a meaningful living amidst dying: Nursing practice in a hospice. Department of Nursing, Umeå University Medical Dissertations New Series 592. ISSN 0346-6612.

43.

Ratzinger

(2007) On conscience, San Francisco, CA: The National Catholic Bioethics Center and Ignatius Press.

44.

Ricoeur

(1992) Oneself as another, Chicago, IL: The University of Chicago Press.

45.

Sherrell

Anderson

Buckwalter

(1998) Invisible residents: The chronically ill elderly in nursing homes. Archives of Psychiatric Nursing 12(3): 131–139.

46.

Shinan-Altman

Cohen

(2009) Nursing aides attitudes to elder abuse in nursing homes: The effect of work stressors and burnout. The Gerontologist 49(5): 674–684.

47.

Silén, C. (2004). Problembaserat lärande – pedagogisk idé och metod [Problem-based learning – pedagogical idea and method]. Hälsouniversitetet, Linköpings Universitet, Pedagogiska enheten.

48.

Strandberg, G. (2002). Beroende av vård – Innebörden av fenomenet som det visar sig genom patienters, deras anhörigas och vårdares berättelser [Dependency on care: The meaning of the phenomenon as disclosed by patients’, intimates’ and carers’ narratives]. Umeå University Medical Dissertations, New Series 768. ISSN 0346-6612.

49.

Stringer

(1996) Action research: A handbook for practitioners, Thousand Oaks, CA: SAGE.

50.

Stringer

(1999) Action research, 2nd ed. London: SAGE.

51.

Söderberg, A. (1999). The practical wisdom of enrolled nurses, registered nurses and physicians in situations of ethical difficulty in intensive care. Department of Nursing, Umeå University Medical Dissertations New Series 603. ISSN 0346-6612.

52.

Sørlie, V. (2001). Being in ethical difficult care situations. Narrative interviews with registered nurses and physicians within internal medicine, oncology and paediatrics. Umeå University Medical Dissertations, New Series No 727. ISSN 0346-6612.

53.

Vahey

D. C.

Aiken

L. H.

Sloane

D. M.

Clarke

S. P.

Vargas

(2004) Nurse burnout and patient satisfaction. Medical Care 42(2): 57–66.

54.

Vårdsamverkan FyrBoDal. (2011). Vårdkedjeprogram/Demens. Flik 8.4 Särskilt boende [Program of care-chain/Dementia]. Retrieved 27 February 2011, from: http://vardsamverkanfyrbodal.se/sv/Vardsamverkan-FyrBoDal/Vi-arbetar-med/ARKIV/2004/Demens/.

55.

Wermlund, S. (1966). Samvetets uppkomst. En socialpsykologisk studie [The origin of conscience. A social psychological study]. Stockholm: Almqvist & Wiksell.

56.

Zingmark

Norberg

Sandman

P.-O.

(1993) Experience of at-homeness and homesickness in patients with Alzheimer’s disease. Journal of Alzheimer’s Care and Related Disorders and Research 8(3): 10–16.