ORIGINAL ARTICLE

Losing connections and receiving support to reconnect: experiences of frail older people within care programmes implemented in primary care settings Jill Bindels

MSc

PhD Student, CAPHRI School for Public Health and Primary Care, Department of Health Services Research, Maastricht University, Maastricht, The Netherlands

Karen Cox

PhD

Senior Researcher, CAPHRI School for Public Health and Primary Care, Department of Health Services Research, Maastricht University, Maastricht, The Netherlands and Fontys University of Applied Sciences, School of Nursing, Eindhoven, The Netherlands

Jean De La Haye Co-researcher, House for the care, Sittard, The Netherlands

Ger Mevissen Co-researcher, House for the care, Sittard, The Netherlands

Serv
e Heijing

MSc

Co-researcher, House for the care, Sittard, The Netherlands

Onno C.P. van Schayck

PhD

Professor, CAPHRI School for Public Health and Primary Care, Department of Family Medicine, Maastricht University, Maastricht, The Netherlands

Guy Widdershoven

PhD

Professor, Department of Medical Humanities, VU University Medical Centre, Amsterdam, The Netherlands

Tineke A. Abma

PhD

Professor, Department of Medical Humanities, VU University Medical Centre, Amsterdam, The Netherlands

Correspondence: Jill Bindels Maastricht University Health Services Research CAPHRI School for Public Health and Primary Care P.O. Box 616 Maastricht Netherlands E-mail: [email protected]

© 2014 John Wiley & Sons Ltd

BINDELS J., COX K., DE LA HAYE J., MEVISSEN G., HEIJING S., VAN SCHAYCK O.C.P., WIDDERSHOVEN G., ABMA T.A. (2015) Losing connections and receiving support to reconnect: experiences of frail older people within care programmes implemented in primary care settings. International Journal of Older People Nursing 10, 179–189. doi:10.1111/opn.12066

Aims and objectives. The objective of this study was to evaluate whether care provided in the care programmes matched the needs of older people. Background. Care programmes were implemented in primary-care settings in the Netherlands to identify frail older people and to prevent further deterioration of health. Design and methods. In total, 23 older people participated in in-depth interviews. Within this study, three older people participated as co-researchers; they gathered and analysed the data together with the academic researchers. Content analysis was used to analyse the data. 179

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Results. Two categories emerged from the data: ‘Losing connections’ and ‘Receiving support to reconnect.’ ‘Losing connections’ reflects the needs of older people and ‘Receiving support to reconnect’ reflects their experience and the appreciated aspects of the provided care. A relationship of trust with the practice nurse (PN) appeared to be an important aspect of care, as it fostered the sharing of feelings and issues other than physical or medical problems that could not be shared with the general practitioner. The PNs are experienced as connectors, who help to restore feelings of connectedness and older peoples’ access to resources in the community. Conclusions. The relationship with the PN was experienced as valuable because of the feelings of ‘connectedness’ it created. Through this connectedness, older people could discuss feelings of loneliness, depression and frustration in receiving and acquiring the appropriate resources and services with the PNs. Furthermore, the relationship with the PN helped the older people to gain access to other health professionals and services. Implications for practice. The results imply that care for frail older people should include an awareness of the importance of the trusting relationship. Nurses can play a vital role in creating a trusting relationship and are able to bridge the gap between older people and other professionals and services. Key words: care programmes, caring relationship, frail older people, frailty, home visits, practice nurses

Introduction What does this research add to existing knowledge in gerontology?

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A proactive approach to detect health problems in community-dwelling older people can lead to an increased detection of problems in the social domain, including feelings of losing connections. Care programmes including home visits by a practice nurse for frail older people in the community can help to restore feelings of connectedness and older peoples’ access to resources in the community.

What are the implications of this new knowledge for nursing care with older people?

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A trusting relationship between a practice nurse and a frail older person is crucial for the receptiveness of care and functions as the basis of care for frail older people. Nurses can fulfil an essential role in community-based care for frail older people by restoring feelings of connectedness.

How could the findings be used to influence policy or practice or research or education?

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Besides the physical aspects of frailty, well-being should be included in the care programmes for frail older people.

Increased longevity and fewer children being born leads to an increasing number of older people worldwide and with this development more people will be frail, suffer from chronic diseases and disabilities (World Health Organization, 2004). Frailty in old age is a growing phenomenon and is seen as an accumulation of risk factors leading to adverse health outcomes such as disabilities, diseases and mortality (Fried et al., 2001). Problems experienced by frail older people can remain undetected due to fragmented care and the lack of optimal instruments to identify problems in frail communitydwelling older people (Lowenstein, 2000; Clarfield et al., 2001; Mathoulin-Pelissier et al., 2013). To prevent a decline in daily functioning, frail older people should be identified in the community to assess physical, psychological and social functioning at an early stage (Health Council of the Netherlands, 2008). The WHO recognises that primary health care plays a central role in the care for older people and should be adapted to the needs of the older people (World Health Organization, 2004). Studies that evaluated the effectiveness of interventions for frail older people show conflicting results (Beswick et al., 2008). Integrated and coordinated care and interventions for frail older people included multiple elements such as an assessment, home visits and follow-up (Eklund & Wilhelmson, 2009), and programmes executed by an interdisciplinary © 2014 John Wiley & Sons Ltd

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team appeared most effective (Gustafsson et al., 2009). Home visits alone appeared to have no significant effect on the health status of older people (Bouman et al., 2008); however, when combined with a multidimensional assessment and follow-up home visits significant effects were seen (Stuck et al., 2002). In fact, only a minority of the interventions that focussed on disability prevention in communitydwelling older people showed positive effects (Daniels et al., 2010). It is unclear whether results are caused by an (in)effective intervention set-up or (un)successful implementation, and little is known about the feasibility and implementation of care programmes for frail older people (Gustafsson et al., 2009). Information about programme outcomes and information about the implementation process are necessary to justify the use of resources in health care (Bryant et al., 2006). The experiences of frail older people with interventions can provide a deeper insight into the way in which the interventions are applied in practice and also offer an understanding of why certain results are (not) achieved. Experiences of older people provide information regarding whether or not the interventions match their needs. Insight into the perspective of the older people can reveal concerns about interventions in health care which go overlooked by professionals, policymakers and researchers (Davies & Nolan, 2003). Therefore, this study evaluates the experience of frail older people within care programmes that focussed on the identification and support for frail older people. The research question was: how do frail older people experience care, and does the provided care match the needs of frail older people who participated in the programmes? To make sure the research questions and methods in this study were suitable for the target population, three older people as co-researchers collaborated with academic researchers. The blending of scientific knowledge with experiential knowledge in research is becoming more accepted as a method to attune ageing research agendas and the research process to the needs of the target population (Davies & Nolan, 2003; Barnes & Taylor, 2007; Reed et al., 2008; Abma & Broerse, 2010).

Research setting The movement from hospital care to community-based care is a trend in most Western countries (Royal College of Nursing, 2013). Due to this development, nurses have a growing role in primary care. In the Netherlands, practice nurses (PNs) are involved in disease prevention, chronic care management, mental health services, assessments of older people and care of families with young children (van Weel © 2014 John Wiley & Sons Ltd

et al., 2012). Three regions, in the southern part of the Netherlands, implemented care programmes in which the PN fulfils a central role (Metzelthin et al., 2010; Stijnen et al., 2013). The care programmes were implemented in primary-care practices and aimed at proactively identifying frail older people and detecting health problems – in the physical, psychological and social domains – to prevent further deterioration of health. Although the programmes differ slightly in the three regions, the main elements are the same. The steps of the care programmes are described in Table 1.

Method The study is part of a responsive evaluation in which the perspectives of all programme stakeholders (e.g. older people, professionals, informal care takers and policy makers) are taken into account. The aim of this evaluation approach was to enhance the dialogue between those different stakeholders and to create a mutual understanding (Stake, 1975; Abma, 2005). In a responsive evaluation, it is assumed that interventions have different meanings for the stakeholders involved and therefore each perspective should be considered (Abma, 2006). In this paper, we gathered the experiences of older people via semi-structured interviews. Other perspectives are gathered too and published elsewhere (Bindels, et al., 2014a). Central methodological notions in a responsive evaluation are a focus on experiential knowledge and involvement of the stakeholder group with least influence (Abma et al., 2009). Therefore, three older people participated as co-researchers (third, fourth and fifth author). This study obtained approval of the medical ethics committee of the University Hospital Maastricht/Maastricht University. User involvement in our study To conduct this research, the academic researchers cooperated with older people. By including the older people as coresearchers, they can become active participants who can help to produce relevant research that is important for older people. Furthermore, they can help researchers to understand what ageing means to older people (Barnes & Taylor, 2007). Including older people as co-researchers enables them to influence the research process, and in this way, academic researchers and co-researchers can learn from each other by sharing experiences (Ward & Gahagan, 2012; Nierse et al., 2012). The academic researchers selected the co-researchers based on their experiential knowledge of ageing and frailty, knowledge of the experiences of other frail older people in their surroundings, enthusiasm for scientific research and 181

J. Bindels et al. Table 1 Description of the care programmes 1. Selection and screening

2. Assessment

3. Multi-disciplinary consultation 4. Care plan

5. Providing care

6. Follow-up

The practice nurse (PN) and general practitioner (GP) screen or select the older persons for the care programme. In one of the three regions, the Groningen Frailty Index (GFI), a self-reported postal, 15 item questionnaire, was used to screen people of 70 years of age and older on frailty. The GFI contains questions that focus on the physical and psychosocial aspects of frailty (Steverink et al., 2001). In the two other regions, people of 75 years and older are selected by the GP and PN based on the knowledge they already have about the older person. Selection criteria for the inclusion of older people in the programme are: people with comorbidity or polypharmacy or people whose psychological and social condition are unknown, and people who have not been in the primary-care practice for a long period After inclusion in the programme, the PN conducts a multidimensional assessment of the older person during a home visit. The multidimensional assessment consists of topics on the physical domain and lifestyle, psychological functioning, social functioning and quality of life If needed, other professionals can be consulted by the PNs and multidisciplinary meetings with the involved professionals are organised by the PN After the assessment, the PN and GP develop a care plan together with the professionals involved, and the older person. In each programme, the older person and their informal caregiver are involved in the development of the care plan, and the care plan should be based on the wishes and needs of the older person The developed care plan is executed by the PN, GP or other professional involved in the care plan. The PN remains case manager and monitors this process. In one region, a toolbox is included in the protocol. This toolbox supports the PN in developing a care plan in which care is delivered by the PN, GP or other professional. The toolbox includes elements such as ‘meaningful activities’ in which the PNs cooperate with an occupational therapist in order to support older people in defining which activities are meaning full and performing those activities (Daniels et al., 2011). The care in the other two regions consists of further or additional diagnoses, preventive care or advise, treatment by GP or PN, or referral to other professionals (Stijnen et al., 2013) Finally, the PNs organise a follow-up meeting and evaluate the care plan

research activities and their ability to travel independently. Three senior men (aged 60–65) applied for the position and after a group interview, the academic researchers decided to collaborate with these three senior men as co-researchers (Bindels et al., 2014b). In monthly meetings, the co-researchers and the academic researchers met and discussed the research questions, topic lists and later, the progress of the study and analysis of the interviews. One co-researcher and one academic researcher (first author), in duo teams conducted the interviews with older people. The academic researchers expected that the presence of an older person during the interviews would help the respondents feel at ease and talk openly, as the co-researchers could understand and perhaps share experiences (Bindels et al., 2014b). Participants In total, 23 older people participated in the study. Purposeful sampling was used to select the participants. Participants were selected based on the degree and the type of care received in the care programmes. The PNs who worked in the care programmes approached the older people and indicated whether or not they felt an older person could participate in an interview. Older people who had recently been admitted to hospital or to whom the interview would be too much of a burden were excluded. 182

After receiving permission via the PNs, the primary researcher contacted the older people by telephone and explained the study. The older people gave verbal consent and the researcher explained to them that they could withdraw from the study any time. Table 2 shows the characteristics of the study sample. The largest proportion of respondents was widowed (52.2%). For 11 of the interviews, a partner or daughter was present because the interviews were conducted in the homes of the older adults where the partner, and in some cases the daughter, was living as well. At the beginning of those interviews, it was explained that we wanted to gather the experiences and the perspectives of frail older people only. The experiences of the spouse or child who was present during the interviews were not included in the analysis. Data collection and analysis Data collection took place over a 16-month period in 2011 and 2012. The interviews lasted from 60 to 90 minutes and after consent, all interviews were tape-recorded and transcribed verbatim. Semi-structured interviews were conducted at the older people’s homes using a topic guide. Table 3 shows the full topic guide. The researchers encouraged the older people to recount their experiences in their own words, and to discuss issues that were important to them. Due to a © 2014 John Wiley & Sons Ltd

Losing connections and receiving support to reconnect Table 2 Participant characteristics Age 71–75 76–80 81–85 >85 Sex Women Men Marital status Married/Partnership Widowed Single Present during interview Partner Daughter N/A

6 (26.1%) 11 (47.8%) 4 (17.4%) 2 (8.7%) 13 (56.5%) 10 (43.5%) 9 (39.1%) 12 (52.2%) 2 (8.7%) 8 (34.8%) 3 (13.0%) 12 (52.2%)

cycle of data gathering and data analysis, the topic list was adjusted as a result of the first interviews. As the researchers, and especially the co-researchers, felt they were necessary to understand the situation and needs of the older people, the topics former and current day-to-day routines, social ties and participation in society were included in the topic list after analysis of the first interviews. Conventional content analysis was used to gather and analyse the data making use of constant comparative analyses (Strauss & Corbin, 1990; Hsieh & Shannon, 2005; Charmaz, 2006). Two researchers read the entire interview transcripts to identify emerging themes and subthemes and allocated descriptive labels to text fragments relating to a specific (sub) theme (open coding). Each interview was first analysed separately to understand each case. In the next step, the two researchers presented their first analysis to the research team after which the co-researchers and academic researchers together compared the data and grouped the sub-themes into categories (axial coding). The academic researchers and coresearchers replaced the descriptive labels by interpretive codes that refer to the meaning of an experience (Charmaz, 2006). Ensuring rigour To avoid potential bias in the analysis due to the translation of the extracts – the language spoken during the interviews was Dutch or in some cases a dialect – the researchers took several steps. The researchers that conducted the interviews (JB, JD, SH, GM) could understand and speak that same dialect as the interviewees. The researchers kept the data in their original language as long as possible, during the analysis phase and the writing of this article. By involving a professional translator, and comparing the translations with © 2014 John Wiley & Sons Ltd

the original extracts, the meaning of the quotes were preserved and the translations validated (Nes et al., 2010). To enhance the quality of the research, several procedures to increase trustworthiness were used. First, the primary researcher stayed within the research setting for a considerable time, known as prolonged engagement (Lincoln & Guba, 1985). The researcher (first author) observed participants during home visits (totalling 16 hours) to gain insight in the delivered care in the care programmes, prior to the interviews. This helped the researchers prepare the topic list and understand the older people experiences. To further enhance credibility, the researcher worked with older people as co-researchers; this helped to ensure that the perspective of older participants was respected during analysis and interpretation. The researcher kept a logbook to reflect systematically on her subjectivity and how her positions, stance and frameworks influenced analysis and interpretation. The reliability of the findings was further enhanced through coanalyses of the data by a group of researchers. For transferability, thick description, which provides opportunities for readers to vicariously experience the events described and be able to estimate to what extent the context and thus the results are applicable to their own situation, was used. This is what Abma and Stake (2001) call the need for naturalistic generalisation.

Findings Analysis revealed two main categories: ‘losing connections’ and ‘receiving support to reconnect.’ Those two categories reflect the needs of the older people and their experiences with the care provided.

‘Losing connections’ Interview participants suffered from many health problems. However, the older people prior to participation in the care programme, already were aware of most of their problems in the physical domain; many patients were already under the care of a GP, physical therapist or one or more specialists. Most of the older people received domestic support, or personal care assistance, prior to participation in the care programme. The needs that were still present and unfulfilled are related to the process of losing connections. Losing connections was interpreted as the loss of connection to friends and relatives resulting in feelings of loneliness and/or feelings of depression. Losing connections also refers to the problems that older people perceive in connecting to the care and resources that they need. 183

J. Bindels et al. Table 3 Topic guide Context information Former and current day-to-day routines Social ties Participation in society Health care status Experienced health problems Received care (prior to the care programme) Informal support Experienced quality of life Participation in the programme Reasons for participation Expectations of the care programme Care Received care in the programme Practice nurse Experience with the assessment that was carried out by the PN Relation with the PN Role of the PN Experience with the care offered by the PN Other professionals Relation with other professionals Experiences with the care offered by other professionals Results of participation in the programme Experienced results

she lives far away. And if she comes, she has to drive for four hours.’ Furthermore, some respondents were reluctant to ask for or accept help from their relatives. They expected their children or other relatives to be too busy to support them and were afraid that asking for help would be a burden to them. Several widowed older people expressed feelings of loneliness related to missing their spouse. They expressed that they used to participate in social activities with their partner and stopped participating in those activities after the death of their partner, which also resulted in a dwindling social network. Furthermore, the feelings of loneliness, as a result of the death of a partner, were still present long time after this death, even if the respondent had a larger social network: Uh, you can also be lonely in a group of people, can’t you? If I have to go to a wedding, for example, I feel quite awful on my own, everyone around me, but you still miss him, yeah, that’s just the way it is. (80-year-old woman)

Many of the people who had lost their partner in the last years reported having feelings of depression. Some of them experienced problems long after the death of their partner: I am a little depressed but I’m not naturally so, and so I’ll come out of

Feeling alone and down Feelings of loneliness were frequently reported in the interviews. Many of the older people indicated that they had a decreasing social network and not many contacts with others. An 80-year-old woman describes this as: ‘I am certainly alone often. There are days when I don’t see anyone, and Sunday’s are the worst for me, it’s way too quiet really.’ Some participants indicated that they were housebound because of a handicap or illness. Most of them were dependent on others and needed additional resources to leave the house. Often determinants such as the weather and public transportation influenced social participation and number of social contacts.

it. It’s three years ago now since my husband passed away, but I never expected it to have such a big impact on a person. We were married for 53 years and that’s quite something really. (80-year-old woman)

In a few interviews, older people even expressed that they are ‘waiting to die;’ feeling that they were not useful to others anymore was indicated as the main reason. One older woman expressed this in the following manner: Could they please turn the switch off up there? My daughter has her own thing, I don’t need to take care of her, and she has her family. So there’s no one here who’ll miss me. Yes, my coffee friends who come to drink coffee but well, they’ll just have to find someone else. No, but really, uh, I wouldn’t mind if I uh, I’ve had my time. It’s all right, and I’ll wait until it comes. (76-year-old woman)

I mean look, I don’t go anywhere in this weather. It’s way too cold if you have to drive too far on that thing [mobility scooter]. You have a blanket but that goes straight through the blanket, that’s too cold . . . I spend the winter months inside. It’s like being in a prison. (77-yearold man)

Although many of the older people had good contact with their children or other family members, and some of the older people even lived with their children, several respondents did not have frequent contact with their children or relatives. Less contact with relatives was often caused by conflicts in the family or physical distance. An 80-year-old man states: ‘Our daughter lives in Germany. She is a good daughter, but 184

Frustrations about resources In addition to problems in the health domain, older people experienced problems and frustrations in receiving the care and resources that they need; resources are too expensive or are not being reimbursed by the health insurance or the Social Support Act (Dutch: WMO). The Social Support Act is implemented by the local municipalities and aims at supporting the social participation of citizens. Thus, citizens should be compensated for the consequences of impairments through the provision of services or resources. Examples of these services or resources include modes of transport and

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resources to make homes suitable for people with impairments. Many people experienced the process of applying for resources and services as complex. It was often unclear which services and resources are available:

man was frail himself and still caring for his wife who suffered from dementia: ‘I don’t know what she [the PN] did exactly but she was an amazing support. She called in home-care and arranged the relief in a nursing

I don’t understand. I received a mobility scooter from the munici-

home for her [respondent’s spouse], because she had to go

palities, they provided me with the grab rails in the bathroom but

somewhere.’ (77-year-old man)

they do not give me a card to use transport service. (74-year-old woman)

A 74-year-old man described his frustrations: ‘The municipality does not want that. And I am not going to pay for it [mobility scooter], it is very expensive, 6000 Euro, I don’t have that much money.’ In many of the interviews, the older people discussed the problems they experienced when applying for those resources. Often they did not know if they could apply and how to apply for resources. Those that did apply expressed having problems with the required paper work: That’s such nonsense, they [the municipalities] need so many things, I applied for that twice at the municipality, and then I was given the wrong papers again and when something like that happens I think: Get lost. I’ll pay for it myself. (83-year-old man)

‘Receiving support to reconnect’ The care that the older people received from the PN included administrative support and advice, medical advice and treatment, social talk and referrals to other professionals. The participants described the PN as a ‘connector.’ Furthermore, they described the ‘social aspect of the care’ as a key feature of the care. Practice nurse as a connector The respondents indicated that the PNs performed medical tasks such as measuring blood pressure and monitoring medication intake. However, many older people also described the PN as a connector. In some cases, the PN took over the tasks of family members in looking after frail older people. In one case, the PN went with an older person to the municipalities to pick up a passport. One 74-year-old man described this: ‘If I think I’ve got one thing or another, I can call her [PN], she can arrange everything. She actually does what my daughter would normally do.’ The participants described the PN mainly as a connector or an intermediate between them and services or other professionals. One older man described a crisis situation in which the PN arranged all the contacts with home care and a nursing home for a short-term stay for his spouse. The older © 2014 John Wiley & Sons Ltd

Many of the participants indicated that the PN had helped them to ‘get things done’ in requesting resources via the Social Support Act: ‘We had already been working on that; we had been thinking that those thresholds need to go, but I can’t actually do anything yet. So when she came, we let her know and things did speed up then.’ (79-year-old woman)

Furthermore, the PN involved other professionals in the care of the frail older people to make adjustments in the home situation and to ensure that the home environment was suitable for older people with disabilities. Some of the older people also felt safe because they were ‘monitored’ by the PNs and many of the older adults saw the PN as a first contact point if they experienced problems. They mentioned that the PN was very approachable and easily accessible, and they believed that the GP was too busy for ‘small problems’ and, therefore, preferred to contact the PN: ‘The added value is that you have a contact person if something happens; beside the GP. . . the GP is too busy for that. I don’t like to bother him.’ (76-year-old woman)

Some respondents indicated feeling ‘safer’ because they knew there was a nurse they could contact if problems occurred. Furthermore, the PNs were seen as a connection between the older people and the GP. The fact that the PN would discuss and evaluate the results and conclusions of the home visits with the GP was found to be reassuring for many participants. The social aspect of care The analyses of the interviews revealed that the social aspect of care is very important for the older people. They appreciated the opportunity to talk with the PN during the home visits. The older people could discuss issues with the PNs that did not concern medical problems: She asked, is there anything else I can do for you? I said she could drop by regularly, and she does. We don’t just talk about medical issues but also about everyday things. We just have a chat. You’re alone so often and you’re glad when someone drops by from time to time and you can have a chat. (77-year-old man)

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For the respondents who were lonely and missed social contact with others, the PN fulfilled the role of active listener to whom the participants could express their problems and share their stories. When the interviewer asked an 82-yearold man why it was so important for him that the PN visited him, he answered: ‘So that I can pour my heart out now and then.’ The older people further indicated that it was important to ‘click’ with the PN. This could be achieved if the older people knew the PN already: O : Well she said, I’ll put you on Jessica’s list. I said, wait a minute, I said Jessica? Yes, she said. I was so happy, I know her from back in ‘91, you see. And uh, yeah you could see that it clicked straight away, we clicked back then and we did now too, didn’t we? Interviewer : Yes. So you knew Jessica because of. . . she counselled you when your husband passed away, right? O : She came to take care of my husband two or three times a week, he was paralysed, you see. (76-year-old woman)

Discussion The findings shed light on the needs and the experiences of older people within the care programmes and the relation with the practice nurse. Our findings showed that the home visits by the PNs provided the older people the opportunity to discuss feelings of loneliness, depression and frustrations about resources and services. Furthermore, the older people appreciated the PN as a connecter, a contact person who could be called on in case of emergencies and who could help them to get access to other professionals and services. Feelings of loneliness were not uncommon among our participants. This related to a declining number of relationships and social networks due to dying family members and friends. Also, the quality of the relationships changed because of mobility problems, visual impairments and other physical problems, which hindered older people in maintaining the still existing relationships. Feelings of being not useful or being a burden to others were also mentioned and can be found in the literature as influencing feelings towards living and dying (Alpass & Neville, 2003). Depressions, poor quality of life due to illness or ageing and traumatic life events such as the death of a partner, are identified as triggers of the development of a wish to die (Rurup et al., 2011). The fact that the older people discussed problems such as loneliness, and feelings of being not useful with the PN in the care programme, instead of during a consult with the GP (care as usual), can be explained by the stigma that still exists

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around loneliness. Other studies reported older people themselves can have a negative attitude towards loneliness and can even feel ashamed to admit this loneliness to another person (Dahlberg, 2007; Hauge & Kirkevold, 2010). Our study showed older people build a relationship of trust with the nurse and this fostered an open dialogue about their vulnerability. The recurrent contact and the time the PN took for the home visit also facilitated the development of an interpersonal relationship of trust. In the literature, this interaction and relationship is described as connectedness. Connectedness is defined as the person’s perception of having a close, intimate, meaningful and significant relationship with someone or a group of people (Phillips-Salimi et al., 2012). This need for connectedness and interaction can be seen as a fundamental human characteristic to desire the respect and attention of others (Tronto, 1993). The trusting relationship between nurses and older persons is one of the leading aspects that determine quality of care (Fosbinder, 1994). Closely related to trust are attentiveness, competence, responsibility and responsiveness, described by Tronto (1993) as key elements of good care. Attentiveness relates to being open and listening to the older person’s needs. Competence relates to the knowledge and skills of the PNs to perform their task. Responsibility relates to the desire of the PNs to fulfil needs of older people, and responsiveness relates to the ability of the PNs to assess if those needs are met. The PNs were experienced and appreciated as connectors to other health professionals and health facilities and could, therefore, meet the needs of the older people who experienced frustrations in receiving and accessing the appropriate services and care. The PNs were appreciated because they restored lost and faded connections and established new connections. Other researchers have shown that information about services and linkages to services are found to be important qualities in the care for frail older people and can motivate older people to take measures and engage in health promotion activities (Browne & Braun, 2001; Behm et al., 2013). Furthermore, a single contact or entry point into healthcare is described as an important factor in communitybased interventions (Kodner, 2006). Our study showed that older people appreciated the home visits by the PN. There is growing evidence that nurses can reduce the GP workload by taking over tasks, without reducing the quality of care (Wilson et al., 2002). The PNs in the care programmes fulfilled the older people needs by creating a trusting relationship in which they could discuss emotional problems and frustrations in receiving the appropriate care. Taken together, the positive experiences of older people with the home visits performed by the PNs and the challenges caused by an ageing population imply that nurses © 2014 John Wiley & Sons Ltd

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fulfil a central role in community-based care for older people and increase their well-being.

Collaboration with co-researchers Collaborating with older people as co-researchers was found to be suitable for gathering rich and relevant data (Bindels et al., 2014b). The co-researchers made the respondents feel at ease during the interviews and helped the academic researchers in gaining rapport. A challenge encountered in working with co-researchers was the difficulty of selecting and recruiting older people who could represent the target population, namely frail older people. The co-researchers in our study were three men and slightly younger than the target population; however, they did have personal experiences of frailty because of their own health situation and the situation of relatives. We realise that the co-researchers were perhaps not able to represent women, or the frailest oldest old. Being aware of the relative novelty of this collaboration, we made this collaboration itself subject of an evaluation, the results of which are published elsewhere (Bindels et al., 2014b).

Study limitations The presence of a spouse or child, during the interviews, could have influenced the outcomes of our study because older people might have felt inhibited in talking openly about problems or care needs that were related to family relationships (Hertz, 1995; Boeije, 2004). A check of the interview transcripts in our study revealed that the respondents asked their partner or daughter for confirmation or support during the interviews, because some respondents could not recall everything that occurred, for example the sequence of home visits or the name of the doctor. Furthermore, our experience is that if the third party was a partner, in some cases both older people seem to be in a frail situation, and both provide caring tasks for each other. This is also described by one of the respondents in our study, a frail older man who is the main caregiver for his spouse and is a care recipient himself and enrolled in the care programmes for frail older people. The older people in our study were all of Dutch descent, so the results may not be representative for older people of different cultural or ethnic backgrounds. The programmes were implemented within a Dutch setting and the findings of this study cannot be automatically transferred to another context. Yet, on the basis of our ‘thick description’ of the context and meaning of experiences, readers may recognise and transfer patterns of insights outside the studied context (Abma & Stake, 2001). © 2014 John Wiley & Sons Ltd

Conclusion The care provided to frail older people was experienced as contributing mainly to the problems in the psychosocial domain, especially loneliness, depression and frustrations in receiving and acquiring the appropriate resources and services. A relationship of trust with the PN appeared to be an important and appreciated aspect of care, as it fostered the sharing of feelings of loneliness and problems other than physical or medical that could not be shared with the GP. The PN helped to restore feelings of connectedness and older peoples’ access to resources in the community.

Implications for practice To be prepared for an ageing population, health care systems worldwide should reconsider the role of nurses within primary-care systems. Nurses can play an important role in community-based care for older people due to the trusting relationship they can build up with older people. The trusting relationship between the practice nurse and the frail older person is crucial and is the basis for care, especially in situations were older people are not demanding care themselves. Furthermore, nurses can help older people to connect to other professionals and services. Nurses can act as casemanager organising and managing the care for frail older people.

Acknowledgements The authors thank the respondents for their willingness to participate. Sincere thanks are given to Floor Koomen, Ine Hesdahl and Astrid Dello for transcribing the interviews. This study was part of a project funded by ZonMW - the Netherlands Organisation for Health Research and Development (grant 311070201).

Contributions Study design: JB, KC, GW, OS, TA. Preparations of interviews: JB, KC, GM, SH, JD. Data collection: JB, KC, GM, SH, JD. Data analysis: JB, KC, TA, GM, SH, JD. Manuscript preparation: JB, KC, GM, SH, JD, GW, OS, TA.

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