Journal of Aging Studies 31 (2014) 45–53

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Journal of Aging Studies journal homepage: www.elsevier.com/locate/jaging

“Small” things matter: Residents' involvement in practice improvements in long-term care facilities Femke Boelsma ⁎, Vivianne E. Baur, Susan Woelders, Tineke A. Abma VU University Medical Center, EMGO + Institute for Health and Care Research, Department of Medical Humanities, Van der Boechorststraat 7, 1081 BT Amsterdam, The Netherlands

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Article history: Received 27 March 2014 Received in revised form 8 August 2014 Accepted 8 August 2014 Available online xxxx Keywords: Agenda-setting Practice improvements Resident involvement Long term care facilities Qualitative research

a b s t r a c t Purpose of the study: The process of involving older clients with regard to their care arrangements has been the subject of previous studies. However, a more general overview of the issues addressed by older people living in long-term care (LTC) facilities, in order to inform practice improvements, is missing. This article explores which aspects of care that older people in LTC facilities want to improve, by means of a collective policy agenda-setting project, during which the participants voice their own experiences and concerns regarding LTC. Design and methods: Seven LTC facilities for older people in the Netherlands joined a collective agenda-setting project in which a total of 58 residents participated. Qualitative methods were used: participant observations (80 h in total) and semi-structured interviews (n = 16), which were analysed according to the principles of a qualitative content analysis. Findings: There were many similarities between the seven organisations with regard to the proposed practice improvements. Nine topics were found to be important in improving the lives of older residents: a sense of community, feeling at home, social contacts between residents, independence, maintaining own hobbies and lifestyle, interpersonal conduct between residents and caregivers, being informed, security within the LTC facility, and food. Implications: Narratives about the daily lives and experiences of residents provided a rich understanding of what living in a LTC facility means, as well as the changes the residents wish to see. We found that according to the residents, the relatively ‘small things’ in life may have a big influence on improving the quality of life within LTC facilities. © 2014 Elsevier Inc. All rights reserved.

Introduction The involvement of clients has become a key principle in improving and designing healthcare services (Bate & Robert, 2006; Crawford et al., 2002). In order to attune care to the client's needs, it is essential to understand the perspectives and life-worlds of clients. While some client groups are very capable of voicing their own concerns, this can be more problematic for older people living in long term care (LTC) and assisted living settings. Physical and cognitive decline complicates their active ⁎ Corresponding author. Tel.: +31 20 44 48217; fax: +31 20 44 48394. E-mail addresses: [email protected] (F. Boelsma), [email protected] (V.E. Baur), [email protected] (S. Woelders), [email protected] (T.A. Abma).

http://dx.doi.org/10.1016/j.jaging.2014.08.003 0890-4065/© 2014 Elsevier Inc. All rights reserved.

involvement. Also, residents are in a vulnerable position and their dependence on others creates unequal power relations between themselves and the professionals. Furthermore, residents can feel that they lack personal control due to an institutionalised environment (Baltes & Wahl, 1992; Kane & Wilson, 2001; McDermott, 1989). In several countries, older people living in LTC facilities can influence decision-making processes through resident councils. In the Netherlands, for instance, the involvement of clients has been regulated by legislation since 1996 (Wet Medezeggenschap Cliënten Zorgsector) (Van der Voet, 2005). Resident councils work on the basis of representation, and council members are chosen as representatives for the total population of residents. They are expected to speak on behalf of other residents and

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thereby represent the concerns and interests of the group. Their input should encourage the management of the organisation to make decisions that reflect the wishes and needs of the residents. While resident councils have a legal right to advise the health care organisation on matters that concern the residents, studies on the functioning of resident councils have shown that the actual influence of resident councils is limited (Baur & Abma, 2011b; Devitt & Chechoway, 1982; O'Dweyr & Timonen, 2010). A friction was found between the life-world issues raised by the residents (often short term, practical matters), and the more strategic and policy-oriented (long term) views of the management (Baur & Abma, 2011b). Besides formal involvement based on democratic representation, alternatives have been developed that are grounded in notions of deliberative democracy. In these deliberative approaches, residents have a direct say in decision-making processes. Deliberative democracy is not based on voting or election of representatives as in the case of resident councils, but rather on a form of democracy in which residents debate directly with each other without the mediation of elected representatives (Abma & Baur, 2012). The point of departure is that the experiential knowledge of laypersons is necessary, in addition to technical or expert knowledge, to develop solutions that acknowledge context, value and meaning. These examples of more direct involvement of residents of LTC facilities have also been a subject of study, and reveal that empowering residents to speak up for themselves can lead to a more active involvement in their homes (McDermott, 1989; Mok & Mui, 1997), and foster a culture change in the organisation (Shura, Siders, & Dannefer, 2011). By using a narrative approach, older people can share and reinforce their own stories within a group, and explore similarities and common concern (Barnes, 2005; Barnes & Bennett, 1998). A facilitator can help to guide this group process (Barnes, 2005). The main focus of studies concerning the involvement of residents in LTC is on the process of involving people, but a thorough analysis of the topics that residents want to address and improve is lacking. Shura et al. (2011) provide valuable insights into the aspects that mixed groups of people (residents, staff, family and friends) want to change in LTC settings. The studies that focus on the process of involvement provide us with some insights into relevant topics that residents in LTC settings would want to improve, such as food (Baur & Abma, 2011a; Mok & Mui, 1997), practical facilities (Mok & Mui, 1997), information and complaint procedures (Barnes & Bennett, 1998), moving to the home, passing the time, links with the community (Boldy & Bartlett, 1998), social contacts (Baur, Abma, Boelsma, & Woelders, 2013; Shura et al., 2011) and communication between staff and residents (Shura et al., 2011). However, these case studies reported on specific themes relevant to residents in one particular LTC setting, and did not include a comparison of topics that arise across several separate LTC settings. So, if residents are involved in developing practice improvements in LTC, what do they put on the agenda? In this article, we explore all topics that residents find important for improving their quality of life in LTC facilities. We studied seven collective agenda-setting projects, which were conducted over the period of five years in seven separate LTC settings spread over the Netherlands. These collective agendasetting projects aimed at improving the lives of the residents by actively involving the residents themselves in setting their own

collective agenda for improvements within the LTC facility. Collective agenda-setting in our study means that older people who live in a residential care home formulate an agenda for practice improvements, firstly through deliberating amongst themselves as a group, and then collaborating with professionals in order to realise the proposed changes. This agenda-setting process uses the principles and systematic steps of the PARTNER approach, which has been described in detail elsewhere (Abma & Baur, 2012; Baur & Abma, 2011b; Baur et al., 2013). PARTNER refers to participation as partnership development and collaboration amongst residents and between residents and professionals. To describe in brief, one group of residents was formed in each participating residential care home (seven groups in total). The groups commenced by getting acquainted, narrating their personal experiences and exchanging ideas for possible adjustments in their lives. Through telling and re-telling their stories in these homogeneous (converging interests) meetings, they formulated their own agenda on practice improvements (step 1 of the PARTNER approach). This agenda was then brought into a separate deliberation with other stakeholder groups, such as healthcare professionals and management (step 2). In a heterogeneous (diverging interests) meeting, residents and professionals then engaged in a dialogue on the ideas for practice improvements generated from the homogeneous meetings (steps 3 and 4), resulting in agreements on actions to be taken by residents and professionals in order to realise the practice improvements (step 5). In this article, we explore which topics for improvement came up during the meetings with the residents (step 1 of PARTNER approach), and how these have informed practice improvements. Design and methods Design The research design of this study was guided by the theory of responsive evaluation as developed by Stake (1975) and Stake & Abma (2005). Various stakeholders – residents, facilitators and managers – were interviewed during this research project, which corresponds with the aim of responsive evaluation by giving various stakeholders a say with regard to the subject (Abma, 2005). For this article, only the data regarding the residents' perspectives and experiences were used and described in the following paragraphs. Setting and participants In the period 2008–2013, seven LTC facilities, focused on care for older people, joined a project on agenda-setting and resident involvement, in which the PARTNER approach was implemented and investigated. The seven homes were located in various parts of the Netherlands and had between 30 and 150 residents living in their facility. Six of the LTC facilities were an assisted living facility/residential care home: the residents were indicated to have relatively light somatic and cognitive impairments. For example, they needed help with their personal care, getting dressed and preparing meals, but they were relatively independent and lived in their own apartments within the LTC facility. One LTC facility was a nursing home: residents had more heavily

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cognitive and physical impairments and had 24-hour care available. The PARTNER approach projects were guided by two facilitators per group, who were professionals or volunteers of the care facility and had a non-hierarchical relationship with the residents as much as possible. For instance, these facilitators could be volunteers, from the chair of the client council to those who were involved in helping with activities or serving coffee. Some were paid staff, such as the coach of the resident council, occupational therapists and spiritual counsellors. It was important for this project that the facilitators were not part of the management staff or responsible for the personal care of the residents (i.e., nursing staff), so that the residents felt that they could speak their minds freely without repercussions. Having people from within the LTC facility to be facilitators of the PARTNER approach was a conscious choice, in order to anchor the gained skills and expertise of these facilitators in the participating LTC facilities. An exception formed one organisation where the facilitator was one of the researchers (VB), as this was the first pilot of the PARTNER approach. During the project, there were no signs that residents were uncomfortable in speaking their minds during the group meetings. The facilitators recruited residents for this project through flyers, posters and personally asking the residents if they wanted to join this project. Inclusion criteria for the residents were: being able to voice a personal opinion, and being able to participate in a group. The groups were relatively stable in membership. In two groups, one of the participating residents quits the project due to cognitive problems. One resident left one of the groups due to a personal conflict with one of the other members. Also, in two facilities we found that one or two other residents, who initially had not joined the project, decided that they wanted to join the group after a few meetings, and they were welcomed by the facilitators and the other group members. The facilitators of the groups used various methods to enable all residents in the group to participate. In all groups, minutes were written after the meetings, which were used in the next meeting to refresh the comments that had been made in the previous session. Also, flipcharts were used as a means of recollection. For people with hearing problems, a microphone was used during the group meetings, and residents who seemed quiet or insecure were asked explicitly for their opinions. A group of residents was formed in each LTC facility with 4–11 participating residents. The group meetings were held once every month, with a total of eight meetings per group. In total, 58 people, with an average age of 85 years, joined an agendasetting project in their respective homes and were therefore included in this research. In this sense, the sample of residents was a convenience sample, because the residents were the ones who chose whether or not they wanted to participate in the programme and adjoining research, and there was no selection by the researchers. Data collection Data was collected using qualitative research methods: participant observations and semi-structured interviews. We chose qualitative methods because we aimed for an in-depth understanding of the residents' lives, by providing a rich

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description of what they wanted to change in their homes and why. During the meetings with the seven groups (56 meetings in total), participant observations were made (totalling approximately 80 h). A semi-structured observation list was used by the researchers which included duration of the meeting, behaviour and input of participants, and content of the topics that were discussed, personal remarks by the residents, tenor, atmosphere, role of the facilitator, and group dynamic. Field notes were made by the researcher at the time of the observation; afterwards, an extensive report was written, as well as the researcher's personal reflection on the meeting; both were used for analysis. While selecting some of the residents of the groups for an interview, a convenience sample was used: the researcher asked in the group meetings who would like to participate in an interview, and interviewed the residents who raised their hands. The interviews (n = 16 in total) were conducted by the researchers (FB, VB, SW), and had a narrative approach in order to elicit personal memories and to get an impression of the participants' lives. People were invited to talk openly about their lives, children, previous occupations, their life within the LTC facility, and other topics that they might bring forward. Also, a topic list was used as a checklist to make sure that all the themes were covered during the interview. Major themes on this topic list were the personal background of the residents, hobbies, experiences in the LTC facility, relationships with other people, and their choice to join the project. The interviews took between 45 and 120 min in the apartment of the resident, and all interviews were recorded and transcribed after consent. Data analysis A team of three researchers (FB, VB, SW) collected the data. To familiarise themselves with the setting and the residents, each researcher focused on two or three LTC facilities, thus becoming a regular and familiar face during the group meetings and establishing a personal relationship with the participants. Two researchers (FB, VB) analysed all data independently of each other, according to the principles of a conventional content analysis (Hsieh & Shannon, 2005) and inductive category development (Mayring, 2000). They extracted and coded all topics relating to complaints, ideas and possible improvements mentioned by the residents from the participant observations and interviews. After that, the researchers each formed clusters and categories based on the initial coding, and compared and discussed their findings. As there were no major differences, consensus was reached. Considering the small number of residents in each group, no attempt was made to compare or contrast data across characteristics of residents such as gender, age, education or financial situation. Quality procedures Triangulation was achieved using two forms of qualitative data collection: participant observation and semi-structured interviews (Mays & Pope, 2000). All interviews were memberchecked to enhance the credibility of the interviews (Burke Johnson, 1997). This member-check involved a summary of one to two pages of the interview, which were given to the residents on paper; they were then invited by the researchers (FB, VB, SW) to respond to this summary. All residents agreed

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with the interpretations of the interview as described by the researcher in the member-check. As described above, two researchers analysed the data independently and compared their findings to reduce personal bias. Also, personal reflections that were written down in a personal log were shared between the researchers and discussed to avoid bias. Ethical considerations The research ethical committee of the VU University Medical Center in Amsterdam approved the project. All three researchers explained their presence and the research objectives to the residents. The residents were informed that participation in the research project was anonymous, and that they had the opportunity to withdraw comments from the research data collection or to withdraw from the PARTNER approach project in general. All participants consented to their voluntary participation in this study. Findings The inductive category development (Mayring, 2000) resulted in nine themes that represent the topics that residents want to reinforce: a sense of community, feeling at home, social contacts between residents, independence, maintaining own hobbies and lifestyle, interpersonal conduct between residents and caregivers, being informed, security within the residential care home, and food. Sense of community By ‘sense of community’, we mean that the residents regarded their LTC facility as a separate community, detached from the ‘outside world’. A male resident (aged 84) said in this regard: ‘Outside are all kinds of things, all kinds of people, young and old. Children are playing. In here everyone is old. Everything that happens outside is being taken away.’ Also, the residents expressed the wish to feel part of the community within the residential care home. In an LTC facility, people live in close proximity to each other. They are neighbours and share meals and activities. Feelings of exclusion occurred, for example, when other residents talked in a dialect which could not always be understood by others, or when residents kept chairs for absent friends, stopping other people from sitting there. The wish to improve social cohesion was a topic that was mentioned in all the residential houses. Whereas social cohesion was found to be important, some residents also stated that there was a need for privacy and the possibility of ensconcing themselves in their own rooms without disturbance from other people. Because the residents lived in close proximity to one another, they seemed to stress the importance of having a place for themselves within the community as well. The residents also expressed the importance of being engaged with the social aspects of life. For example, in one LTC facility the residents asked for a message board with information about birthdays, newcomers and deceased residents. They explained that they wanted to wish someone a happy birthday or welcome someone to the home, thereby showing an active interest in others and an involvement in their community. In another home, it was a rule of the house that the residents were not allowed to help each other, and this was the subject of

discussion amongst the residents. They wanted to be able to occasionally help others, which was not always allowed, as one woman (aged 77) explained: ‘Sometimes I cut the meat for my neighbour, and I have to make sure they don't see me. […] I find it strange that something is forbidden, which is normal in the outside world.’ The interview findings demonstrated that it was important for these groups to be able to play a more active role within the community of the residential care home, by supporting others and contributing something. While living in a LTC facility enhanced feelings of belonging to a community, at the same time it excluded the residents from the rest of society and submitted them to the rules of the houses, which were set by management staff. Feeling at home For older people living in a care facility, feeling at home is not something that is taken for granted. As one woman put it: ‘It will never really be like home.’ Most residents talked about their previous houses, their furniture that they had to leave, and how they cried when they had to move to an LTC facility. Material surroundings aside, there was something fundamental about feeling at home. They did not simply move from one house to a new house; they left a previous life and surroundings where they felt comfortable. When trying to explain what feeling at home meant and how it could be reinforced, they described it as a nice ambience, good atmosphere and the typically Dutch word ‘gezelligheid’, translated as ‘cosiness’. Feeling at home meant having a place of their own, with their own familiar things, and where they could just be themselves and feel safe. Feeling at home while living in an institutional setting proved to be difficult. For example one resident (male, aged 80), who had recently moved to the care facility, said during one of the meetings that he felt that the LTC facility was like a well-run industry, where all the functions are set to meet the central task: that the facility is operating efficiently and that all residents are all right. He noticed that the LTC facility was functioning as an institution, and remarked, ‘There is a lot of staff, but it feels as if they have nothing to do with me.’ The human aspect was missing: ‘I miss the true soul.’ Rules, regulations, the presence of staff, and loss of personal contacts all had a negative effect on one's ability to feel at home. Social contacts between residents Closely related to feeling part of a community was the topic of improving social contacts between residents. The older people found it difficult to maintain contact with their former friends and acquaintances, and some noticed that the friends they used to have seemed reluctant to visit them at the LTC facility. They found it difficult to make new contacts, and they often spoke of a lack of interesting conversations with others about similar interests. The limited number of contacts or friends made some residents feel alone. For example, one man (aged 85) said during an interview that he had made a new friend, and found that wonderful because they had both felt lonely before. The residents did describe the LTC facility as a community within itself. However, it was not so easy to become part of that community. Many of the residents did not know their neighbours and there was little informal conversation as one woman (age unknown) explained: ‘When I first

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came here, I noticed to my astonishment that no-one greeted each other. I always greet people and make small talk. It bothered me.’ In one of the care facilities, this lack of social contact was the reason for the residents organising a small party for each of the units. This was a great success and one woman said (age unknown) afterwards: ‘Actually, I found it pleasant to finally meet some people. I have been living here for a year and didn't know a lot of people. At least I have seen them now. In the meantime others will come and some will leave, so I think it would be a good idea to repeat this. Then people can get a little bit acquainted.’ Independence Being cared for by others can lead to feelings of being dependent. Some residents felt lucky, as they were able to wash themselves and did not need a lot of help. Others relied heavily on the nurses to help them and found that very hard. One woman (age unknown) explained how challenging it was to depend on others for care: ‘In the morning you just have to wait for them to come, if someone comes. I cannot get out of bed when I need to use the toilet, and I have to call. It is very difficult.’ Besides the physical care, most residents depended on others in order to join activities or go outside. Some residents found that their home lacked the resources to facilitate activities outside, for example, a woman in a wheelchair noticed that the bus used for trips and activities was not wheelchair accessible, so she was not able to join fellow residents. Optimising the facilities for people to be independent was considered very important. During one of the group meetings, a woman (aged 93) said in this regard, ‘We are all dependent people’, and that she wanted to do the things she could still do on her own. These examples show the need for independence. However, at the same time, people indicated that they wanted to be connected to other residents and to be able to help other residents, as the previous paragraphs have shown. These seemingly contradictory feelings and wishes seemed to alternate from moment to moment, reflecting that personal needs change and differ from person to person as well. How ambivalent these needs are can be illustrated by an example from one of the care facilities: the residents of the action group wanted the staff to intervene when there was a quarrel between residents. In response, the staff members explained during a meeting that they felt that they should not intervene in a quarrel between residents. Staff members felt that they had no right to intervene because the residents were ‘regular grown-ups’ and they should not depend on the staff to solve problems amongst each other. In this case, the residents asked for ‘compassionate interference’ (Verkerk, 2001) while the staff's reaction was an example of a classic autonomy approach, in which the relational dimension of being an autonomous human being is overlooked. Maintaining own hobbies and lifestyle Activities and entertainment in the LTC facilities are usually designed to suit the majority of the residents. Some residents with specific interests, such as music preferences, expressed their wish for a more diverse programme. Other residents wanted to celebrate national celebrations together with other residents, because that was how they used to celebrate it when

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they were still living in the community: together with others. For example, one of the residents explained during one of the meetings that she wished for a celebration of ‘Sinterklaas’, a traditional Dutch celebration of Saint Nicholas: ‘Just like in the old days.’ Others wanted to be able to join an activity outside the nursing home, or expressed their love for nature and walks in the fresh air. Being able to enjoy their own hobbies and leisure pursuits was closely connected to their lifestyles. By maintaining their own hobbies, their identities were being reconfirmed. For instance, a man (aged 88) found great joy in painting and drawing, and his paintings were used in an exhibition, for which he gave an opening speech. He was therefore given the nickname ‘The Artist’ in the LTC facility. As most activities within LTC facilities are targeted at the general public, the specific wishes and preferences of individuals are easily neglected, and it may even be impossible for care organisations to fulfil the conditions in order for every individual to flourish. Before moving to a LTC facility, residents experienced autonomy with regard to how they spent their day, but within LTC settings, options seemed to be limited.

Interpersonal conduct between residents and caregivers When the residents talked about the staff, specifically the nurses, they rarely mentioned the medical care that they received. What really mattered to them was the way that they were treated by the caregivers. Sometimes the resident narrated an experience that seemed to refer to physical care, but actually exposed to what happened in the interpersonal conduct between the resident and caregiver. Two aspects for improvements were named on this subject: a respectful approach and personal attention. The residents found a respectful approach by staff very important. Some behaviour by the caregivers was described as patronising and sometimes lacking common courtesy, such as knocking and greeting when entering the room. For example, a woman (aged 93) remembered an incident when she had gone to the toilet in the morning, and the nurse started to unbutton her pants while she was still walking. When she was on the toilet, the nurse took all the rest of her clothes off in preparation for taking a shower. More residents shared these kinds of experiences and asked for more respectful treatment. The residents talked about the lack of time for a chat with the staff, or to listen to someone's personal story. The residents who did not need a lot of physical care expressed their wish for more personal attention. They felt that they were overlooked because they could mostly take care of themselves, but it did not mean that they felt no need for a chat or check-up. The fact that they needed little care may have contributed to feelings of being independent, as we described in previous paragraphs, but at the same time there was a need to be recognised by the staff as well. Also, empathy for a person's situation or feelings was sometimes missing, as a group of blind residents who lived in a care home especially for blind older people explained. They noticed that during dinner the staff explained what was on their dinner plate: ‘Soup, vegetables, meat.’ But the residents stressed the importance of knowing what kind of soup, meat or vegetables they were eating. By simply saying that it was soup they were having, the staff overlooked the personal preferences and needs of the residents.

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Being informed Another topic that came up in the dialogue between residents was a need to inform the residents about the rules of the house, current in-house affairs and activities. The residents wanted to know if someone had moved into the house, and about the hiring of new employees, and what effects any new policies or cutbacks meant for them. This was an issue in all of the participating residential houses, and ranged from the wish to be properly informed before moving into the residential house and to being informed about the passing of neighbours. Sometimes it was seemingly small things that they wanted to be told. For example, in one of the residential houses the number of incontinence pads available for the older people was reduced, but after a few weeks that decision was withdrawn without an explicit announcement to the people living in the care facility. A woman (aged 77) remarked about that: ‘Then I think: Why? Why don't they tell us? […] People are wondering what they are going to do, and then it turns out they don't have to. They [the staff] should tell and make it known to everybody, or put a note in the mailbox.’ Another example occurred during a group session in which a group of residents mentioned an occasion when the elevator had broken down during the holidays. The manager of the building was on holiday and the residents had no idea how long they would have to wait for the elevator to be fixed, or what was being done about it. When, after a few weeks, the managing director spoke to the residents about the elevator during lunch, a woman stood up and said: ‘We felt so lonely, just left alone here.’ The managing director was shocked and explained that she had not realised that. During an interview the resident spoke about the lift incident and said: ‘We are not little children, we are adults who want to know what is going on.’ Being informed gives residents the opportunity to make informed decisions and to take control and avoid feelings of dependency and helplessness. This wish can cause tension with the institutional setting and the attitude of the staff, who are officially responsible for the wellbeing of residents, which can sometimes lead to an overprotective or paternalistic approach.

Security within the LTC facility Optimising a sense of security proved to be important for the residents. This feeling of being secure was decreased, for instance, by the fact that an alarm bell to alert the staff in times of need did not work outside the rooms of the residents. The fewer nurses around during the night also made the residents feel uncomfortable and insecure: ‘When the nurse is helping someone in the night at the other side of the building, it can take a long time for her to get to me’ (female resident, age unknown). Also, the occurrence of theft in various residential houses made the residents frightened and one woman (age unknown) said after things had been stolen from her room: ‘That sense of security is now gone.’ In some of the LTC facilities, the nurses did not wear a white uniform but instead casual clothes. The residents found that very confusing because they could not distinguish guests and family from the caregivers, which also fostered a feeling of insecurity. The care organisations had chosen casual clothing for staff in order to give the facility a more homely feel. However, it diminished one of the

other preconditions for residents to feel at home, namely, feeling safe. Food The importance of food was a recurring theme in all group sessions with residents. They talked about the quality of the food: (‘Does the cook eat this himself? I don't think so!’) and their wish for fresh ingredients and home-cooked meals. The residents worried about the nutritional value of the food that they were having, as it had an impact on their overall health. Mostly, though, the social importance of food was discussed. Having dinner together was seen by the residents as a social happening: ‘It is the only time that you are all together. Having dinner together is the most important event of the day.’ This also illustrates the wish to live in a community in which meaningful relationships can be developed. Taking time for a meal, and having a nice conversation during and after eating one's meal, was seen as essential to the enjoyment of one's dinner. The residents also found a good ambience during dinner to be meaningful, such as the presentation of the food and decoration of the table. For example, in one of the groups, a resident started to talk about the Indonesian food that she used to prepare in the past, which led to an exchange of recipes within the group. Food proved to be a trigger for memories of the past and of happy occasions. Food – that is, preferences regarding what to eat as well as the social aspect of food – disclosed something about the individual identities of the residents and revealed certain cultural and social practices. As one woman (aged 92) said when a treat was being served during the meetings: ‘It reminds me of earlier times, when we all ate a doughnut at New Year's Eve.’ In two of the LTC facilities, the food was such an important issue for the residents that they made plans for improvement in collaboration with the staff, which led, in one LTC facility, to the reopening of a kitchen on site instead of bringing the food in from outside. The theme of food is connected to maintaining one's own lifestyle or identity as well. For example, dinner times are set and there is little choice in food, table seating or the company at the dining table. When there is little opportunity for residents to influence these variables, they feel that they have little influence in living their lives the way they want. Practice improvements After having exchanged ideas regarding all issues that, according to the residents, should be changed or improved (as described above), each group of residents from the seven LTC facilities focused on one or two themes to improve within their facility, and worked towards practice improvements together with the staff. The PARTNER approach aims to develop partnerships between residents and staff, but this process towards collaboration does not come naturally. The inherent nature of a residential care home often enhances power dynamics, hospitalisation and a domination of system-world over life-world (Habermas, 1987). The steps of the PARTNER approach, which have been described in the introduction, are meant to guide the process of collaboration and to work towards relational empowerment (VanderPlaat, 1999). By exchanging the perspectives of residents and staff, similar underlying values became clear, creating commitment to the

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practice improvements by all parties. In other articles, we have explored the process of the PARTNER approach, relational empowerment amongst residents, and partnerships between residents and professionals (Abma & Baur, 2014; Baur & Abma, 2011a, 2011b; Baur et al., 2013). Table 1 shows an overview of the practice improvements that were formulated by the residents, and subsequently were brought into practice in collaboration with professionals. Discussion This study sheds light on experiences of residents in LTC facilities, related to practice improvements in these settings. Even though the participating LTC settings had their own individual characters and were spread over the country, remarkable similarities were found with regard to the topics that the residents put on the agenda for practice improvements. Nine topics were found to be most important in improving the lives of these residents: a sense of community, feeling at home, social contacts between residents, independence, maintaining own hobbies and lifestyle, interpersonal conduct between residents and caregivers, being informed, security within the LTC facility, and food. These topics also proved to be interconnected. From earlier studies, we know that resident involvement is beneficial to developing a ‘voice’ and collective empowerment (Barnes & Bennett, 1998; Barnes & Warren, 1999; Baur & Abma, 2011a; Baur et al., 2013). By joining the PARTNER approach project, the residents were not only able to influence practice improvements, but the process itself proved to be valuable as well. It promoted a sense of community, of being informed, and improved the social contacts between the residents within their groups, as has been shown by earlier PARTNER approach projects (Baur & Abma, 2011a; Baur et al., 2013). By being invited to share their stories and experiences with each other, as well as with the facilitators, researchers and professionals, the participating residents felt listened to and respected. This study demonstrates that the involvement of residents in developing possible practice improvements is essential in order to align improvements with their preferences and underlying values. While quantitative evaluations, or measurements of the satisfaction of residents, can provide insights into how positively or negatively this is rated (Attkisson & Greenfield, 1994; Edelman, Guihan, Bryant, & Munroe, 2006),

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it provides little knowledge as to how these topics could be reinforced in order to meet the wishes of residents. Our study highlights the fact that according to residents in LTC facilities, it is often the little things in life that impact their lives largely, and that in seemingly small changes, improvements can be found. Greeting a neighbour, or knocking on the door before entering the room may seem to be minor social interactions, but it is expected that these can have a significant effect on someone's well-being and quality of life. The personal experiences and stories reflected underlying values, which provided us with a better understanding of the meaning behind a request or wish for improvement. The broken-down elevator, for example, was about more than repairing a mechanical error: it evoked, amongst the residents, feelings of being neglected, feeling inferior and being forgotten. What these residents really wanted was to have someone tell them personally about the situation regarding the elevator. They wanted to be taken seriously. The residents' wish to be informed about current affairs is an illustration of the shift from a dependent client to an autonomous human being. Most of the conversations within the groups of residents expressed dissatisfaction, but these complaints and negative experiences also exposed a positive formulation of what the residents wanted and needed in their lives. Our study indicates that learning to listen to the story is very important in order to understand the meaning behind a complaint. This is a crucial difference from the use of quantitative surveys, such as client satisfaction scales. Most of the topics that were mentioned were not about physical or material adjustments or medical treatments. Instead, the social dimension of the residents' lives has been highlighted in this study. The residents rarely talked about their individual physical problems, disabilities or impairments as issues that should be solved. When a physical disability such as blindness was mentioned, they did not discuss the impact of blindness on them personally, but stressed the ways in which other people dealt with it: how the staff forgot to mention the kind of vegetables that were on the menu, or how people who could see ignored them during a conversation. What really mattered to them was the extent to which other people were able to place themselves in their shoes and act responsively. The residents felt a need for more emphatic understanding by other people, such as staff, friends, neighbours and family. We also found that the improvements sought by residents are very much in line with the quality of life domains that have

Table 1 Overview of practice improvements. Topic Social contacts

Sense of community Feeling at home

Being informed

Food

Practice improvements – Gallery parties: a party with residents of the same division – Organising more activities together with residents in order to enhance the contacts between residents: the residents of the action group interviewed the other residents about preferences – Season parties: a party with the residents and staff of the same division, four times a year – Message board with information about residents, such as birthdays and other anniversaries and passing of residents – Introduction of new residents to fellow residents at the dinner table – Photo-board of all staff members – Introduction tour of new residents around the house – Monthly meeting with the manager of the house during coffee – Message board with information from the management – Nametags for the staff with the function of the staff-member on it – Informing residents by letter when someone has passed away, as well as informing residents personally at the coffee break – Cooking and eating together as a group: seeking out recipes, getting groceries, setting the table, etc. – Re-opening the kitchen, and therefore facilitating freshly cooked meals

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been identified by other scholars, such as feeling at home (Andersson, Hallberg, & Edberg, 2008; Prieto-Flores, Fernandez-Mayoralas, Rosenberg, & Rojo-Perez, 2010), social contacts (Chao & Roth, 2005; Clark & Bowling, 1990; Farquhar, 1995; Forsman, Herberts, Nyqvist, Wahlbeck, & Schierenbecks, 2012; Gabriel & Bowling, 2004; Kane et al., 2003), independence (Ball et al., 2000; Gabriel & Bowling, 2004), hobbies or activities (Ball et al., 2000; Clark & Bowling, 1990; Farquhar, 1995; Kane et al., 2003), security (Gabriel & Bowling, 2004; Kane et al., 2003), and interpersonal conduct between caregivers and care-receivers (Andersson et al., 2008; Chao & Roth, 2005). This suggests that the improvements that residents seek are very much in line with the overall human life domains that are needed to lead a life of quality. A limitation of this study is that, due to the qualitative approach and relatively small data sample, our findings cannot be generalised to other contexts, and further research on experiences of residents in LTC settings remains necessary. However, between the seven organisations that were included in this study, many similarities were found in the topics of improvements. This may indicate that these nine themes give a good indication of which practice improvements contribute most to the quality of life of residents. By regulating client involvement by law in the Netherlands (Van der Voet, 2005), many care organisations have taken on a vision that emphasises the central roles and voices of residents, with regard to their needs. Moreover, organisations in the Netherlands seek additional ways of involving residents, other than resident councils (Baur & Abma, 2011b). The fact that the care organisations that participated in this project were willing to listen to residents and improve their practices based on the perspective of residents was a precondition for this kind of project to take place. This is a development that is innovative and that challenges the existing barriers around the empowerment of clients in institutional contexts, such as structural dependency, depersonalisation, disengagement and frailty (Abbott, Fisk, & Forward, 2000; Agich, 1993; Baltes & Wahl, 1992; Johnson & Barer, 1992; Mitchell & Koch, 1997; Townsend, 1981). Therefore, institutional structures that allow residents to have a voice and develop empowerment are an important prerequisite for participation processes. Our most recent research concerns an analysis of the barriers and success factors for resident involvement and collective action in the context of LTC settings (Boelsma, Baur, Abma, submitted for publication). Another limitation is that the collective nature of the project required specific communication skills from the participants, such as the ability to listen and to understand each other, and to join the group deliberation. LTC facilities for people with heavy cognitive impairments, such as dementia, were therefore excluded from this research. Also, some residents from the participating organisations who had a cognitive impairment turned out to be unable to join the group conversations. Because we worked with cognitively able residents in this study, we are careful not to generalise these results to LTC settings in which the residents experience more cognitive problems and are in need of significant care assistance. We believe that the PARTNER approach can also be valuable for informal care-givers/family members who may represent people with a psycho-geriatric impairment, with regard to improvements in nursing homes. Therefore, we are currently working on a pilot project in which informal care-givers of people with dementia will be involved in

setting the agenda for practice improvements and working together with professionals. Conclusion As a conclusion, we hope to contribute to the awareness that, as one resident put it, ‘the small things really matter’ in the lives of older people in LTC facilities. Residents have a unique and valuable perspective on LTC facilities, and their experiential knowledge should be involved in the development of practice improvements that are in line with their values. A lesson for practitioners is that seemingly small changes can make a big difference in the quality of life of residents. Furthermore, we have seen that residents themselves can have an active and meaningful role in developing these practice improvements. The opportunity to set the agenda, instead of having professionals define what needs to be done and how, is a valuable experience for people who reside in LTC settings (Baur et al., 2013; McDermott, 1989; Mok & Mui, 1997). Practice improvements can start, therefore with creating room for residents to set the agendas themselves. Acknowledgments This work was supported by: Cliëntenbelang, Amsterdam, The Netherlands Interkerkelijke Stichting Zorgvoorzieningen De Brug, Driebergen, The Netherlands Landelijk overlegorgaan cliëntenraden, Utrecht, The Netherlands Mosae Zorggroep, Maastricht, The Netherlands Reade, Amsterdam, The Netherlands Sevagram, Heerlen, The Netherlands Sigra, Amsterdam, The Netherlands Stichting Vughterstede, Vught, The Netherlands Zorg Onderzoek Nederland/Medische Wetenschappen, The Hague, The Netherlands. References Abbott, S., Fisk, M., & Forward, L. (2000). Social and democratic participation in residential settings for older people: realities and aspirations. Ageing and Society, 20, 327–340. Abma, T. A. (2005). Responsive evaluation: Its meaning and special contribution to health promotion. Evaluation and Program Planning, 28, 279–289. Abma, T. A., & Baur, V. (2012). Seeking connections, creating movement: The power of altruistic action. Health Care Analysis, 1–19. Abma, & Baur (2014). User involvement in long-term care. Toward a care ethics approach. HEX. http://dx.doi.org/10.1111/hex.12202. Agich, G. J. (1993). Autonomy and long-term care. New York, Oxford: Oxford University Press. Andersson, M., Hallberg, I. R., & Edberg, A. -K. (2008). Old people receiving municipal care, their experiences of what constitutes a good life in the last phase of life: A qualitative study. International Journal of Nursing Studies, 45, 818–828. Attkisson, C. C., & Greenfield, T. K. (1994). Client Satisfaction Questionnaire-8 and Service Satisfaction Scale-30. In M. E. Maruish (Ed.), The use of psychological testing for treatment planning and outcome assessment (pp. 402–422). Hillsdale, NJ: Erlbaum. Ball, M. M., Whittington, F. J., Perkins, M. M., Patterson, V. L., Hollingsworth, C., King, S. V., et al. (2000). Quality of life in assisted living facilities: Viewpoints of residents. Journal of Applied Gerontology, 19, 304–325. Baltes, M., & Wahl, H. -W. (1992). The behavior system of dependency in the elderly: Interaction with the social environment. In M. Ory, R. Abeles, & P.

F. Boelsma et al. / Journal of Aging Studies 31 (2014) 45–53 Lipman (Eds.), Ageing, health and behavior (pp. 83–104). Newbury Park, London, New Delhi: Sage Publications. Barnes, M. (2005). The same old process? Older people, participation and deliberation. Ageing and Society, 25, 245–259. Barnes, M., & Bennett, G. (1998). Frail bodies, courageous voices: Older people influencing community care. Health and Social Care in the Community, 6(1), 102–111. Barnes, M., & Warren, L. (1999). Paths to empowerment. Bristol: Policy Press. Bate, P., & Robert, G. (2006). Experience-based design: From redesigning the system around the patient to co-designing services with the patient. Quality and Safety in Health Care, 15(5), 307–310. Baur, V. E., & Abma, T. A. (2011a). The taste buddies': Participation and empowerment in a residential home for older people. Ageing and Society, 32(6), 1055–1078. Baur, V. E., & Abma (2011b). Resident councils between lifeworld and system: Is there room for communicative action? Journal of Aging Studies, 25, 390–396. Baur, V. E., Abma, T. A., Boelsma, F., & Woelders, S. (2013). Pioneering partnerships: Resident involvement from multiple perspectives. Journal of Aging Studies, 27(4), 358–367. Boelsma, F., Baur, V. E., & Abma, T. A. (2014). Collective Action in Residential Homes. (submitted for publication). Boldy, D., & Bartlett, H. (1998). Residents' views and quality improvement in homes for older people. Managing Community Care, 6(5), 200–206. Burke Johnson, E. (1997). Examining the validity structure of qualitative research. Education, 118(2), 282. Chao, S. -Y., & Roth, P. (2005). Dimensions of quality in long-term care facilities in Taiwan. Journal of Advanced Nursing, 52(6), 609–619. Clark, P., & Bowling, A. (1990). Quality of everyday life in long stay institutions for the elderly: An observational study of long stay hospital and nursing home care. Social Science & Medicine, 30(11), 1201–1210. Crawford, M., Rutter, D., Manley, C., Weaver, T., Bhui, K., Fulop, N., et al. (2002). Systematic review of involving patients in the planning and development of health care. British Medical Journal, 325, 1263–1268. Devitt, M., & Chechoway, B. (1982). Participation in nursing home resident councils: Promise and practice. The Gerontologist, 22(1), 49–53. http://dx. doi.org/10.1093/geront/22.1.49. Edelman, P., Guihan, M., Bryant, F. B., & Munroe, D. J. (2006). Measuring resident and family member determinants of satisfaction with assisted living. The Gerontologist, 46(5), 599–608. Farquhar, M. (1995). Elderly people's definitions of quality of life. Social Science & Medicine, 41(10), 1439–1446. Forsman, A. K., Herberts, C., Nyqvist, F., Wahlbeck, K., & Schierenbecks, I. (2012). Understanding the role of social capital for mental wellbeing among older adults. Ageing and Society. http://dx.doi.org/10.1017/S0144686X12000256. Gabriel, Z., & Bowling, A. (2004). Quality of life from the perspectives of older people. Ageing and Society, 24, 675–691. http://dx.doi.org/10.1017/ S0144686X03001582. Habermas, J. (1987). Volume 2: Lifeworld and system: A critique of functionalist reason. Cambridge: Polity Press.

53

Hsieh, H. -F., & Shannon, S. E. (2005). Three approaches to qualitative content analysis. Qualitative Health Research, 15, 1277–1288. Johnson, C. L., & Barer, B.M. (1992). Patterns of engagement and disengagement among the oldest old. Journal of Aging Studies, 6(4), 351–364. Kane, R. A., Kling, K. C., Bershadsky, B., Kane, R. L., Giles, K., Degenholtz, H. B., et al. (2003). Quality of life measures for nursing home residents. Journal of Gerontology, 58A(3), 240–248. Kane, R. A., & Wilson, K. B. (2001). Assisted living at the crossroads: Principles for its future. Portland, Oregon: Jessie F. Richardson Foundation. Mayring, P. (2000). Qualitative content analysis [28 paragraphs]. Forum Qualitative Sozialforschung/Forum: Qualitative Social Research, 1(2) (Art. 20, http://nbn-resolving.de/urn:nbn:de:0114-fqs0002204). Mays, N., & Pope, C. (2000). Assessing quality in qualitative research. British Medical Journal, 320(1), 50–52. McDermott, C. J. (1989). Empowering the elderly nursing home residents: The resident rights campaign. Social Work, 34, 155–157. Mitchell, P., & Koch, T. (1997). An attempt to give nursing home residents a voice in the quality improvement process: The challenge of frailty. Journal of Clinical Nursing, 6, 453–461. Mok, B. -H., & Mui, A. (1997). Empowerment in residential care for the elders. Journal of Gerontological Social Work, 27(1–2), 23–35. O'Dweyr, C., & Timonen, V. (2010). Rethinking the value of residents' councils: Observations and lessons from an exploratory study. Journal of Applied Gerontology, 29(6), 762–771. Prieto-Flores, M. -E., Fernandez-Mayoralas, G., Rosenberg, M. W., & Rojo-Perez, F. (2010). Identifying connections between the subjective experience of health and quality of life in old age. Qualitative Health Research, 20(11) (14941-11499). Shura, R., Siders, R. A., & Dannefer, D. (2011). Culture change in long-term care: Participatory action research and the role of the resident. The Gerontologist, 51(2), 212–225. Stake, R. E. (1975). To evaluate an arts program. In R. E. Stake (Ed.), Evaluating the arts in education: A responsive approach (pp. 13–31). Colombus Ohio: Merrill. Stake, R. E., & Abma, T. A. (2005). Responsive evaluation. In S. Mathison (Ed.), Encyclopedia of evaluation (pp. 376–379). Thousand Oaks: Sage. Townsend, P. (1981). The structured dependency of the elderly: a creation of social policy in the twentieth century. Ageing and Society, 1, 5–28. Van der Voet, G. W. (2005). De kwaliteit van de WMCZ als medezeggenschapswet [The quality of the WMCZ as co-determination law]. Rotterdam: Erasmus University Repub. VanderPlaat, M. (1999). Locating the feminist scholar: Relational empowerment and social activism. Qualitative Health Research, 9, 773–785. Verkerk, M.A. (2001). The care perspective and autonomy. Medicine, Health Care and Philosophy, 4(3), 289–294.