Published for the British Institute of Learning Disabilities
Journal of Applied Research in Intellectual Disabilities 2015, 28, 296–306
Understanding the Implementation Process of a Multi-Component Health Promotion Intervention for Adults with Intellectual Disabilities in Sweden Elinor Sundblom†, Helena Bergstr€ om* and Liselotte Sch€afer Ellinder* *Public Health Sciences, Karolinska Institutet, Stockholm, Sweden; †Centre for Epidemiology and Community Medicine, Solna, Sweden
Accepted for publication 29 July 2014
Background There is a need to better understand implementation processes of health interventions. This study describes the implementation of a multicomponent intervention to improve diet and physical activity among adults with intellectual disabilities, viewed from the perspectives of staff and managers. Materials and Methods All health ambassadors (n = 12), appointed among staff and managers (n = 5) taking part of a health intervention in community residences in Sweden, were interviewed with a focus on barriers and facilitators regarding implementation of the intervention. Data were analysed using content analysis. Results The overarching theme describes the importance of supporting motivation for change among managers,
Introduction People with disabilities carry a higher burden of chronic diseases compared to the general population (World Health Organization 2011), partly due to behavioural risk factors such as poor dietary habits (Draheim et al. 2007; Adolfsson et al. 2008), low physical activity (Robertson et al. 2000) and obesity (Rimmer & Yamaki 2006). Social circumstances and living conditions differ from the general population including lower rate of employment and a more restricted social life (UmbCarlsson & Sonnander 2005). According to research in both the United States and Sweden, changes in the physical and social environment, due to deinstitutionalisation, have brought about unintentional body weight changes and nutrition-related problems (Bryan et al. 2000; Gabre et al. 2002). Among people with intellectual disabilities, impaired health – not primarily © 2015 John Wiley & Sons Ltd
caregivers and residents. The experiences of the implementation process are described in four main categories: intervention characteristics, individual commitment, organizational capacity and societal factors. Conclusion The implementation can be facilitated by a programme meeting perceived needs, a flexible and participatory approach, external input and an extensive preparation phase. Keywords: community residences, content analysis, health promotion, implementation, intellectual disability, intervention
due to their intellectual disability – is common and health promotion actions targeting this vulnerable group are rare (Swedish National Institute for Public Health 2013). In Sweden, the municipalities are responsible for offering housing for this group and many adults with intellectual disabilities live in community residences where they receive support from staff in their daily living. According to Swedish law, the support should be based on self-determination and integrity (Ministry of Health & Social Affairs 1993). Interventions targeting health behaviours of people with intellectual disabilities often focus on education, and there is some evidence of health benefits from community-based programmes (Heller et al. 2011; Jinks et al. 2011). In a review by Hamilton et al. (2007) on weight loss interventions, it was concluded that multicomponent interventions targeting diet and physical activity as well as staff involvement were 10.1111/jar.12139
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successful in changing behaviours. Knowledge about health promotion is important among staff, as they can have a strong influence on both dietary and physical activity patterns of adults with intellectual disability living in community residences. Caregivers are often confronted with situations in which there is a conflict between providing good care and respecting the residents0 autonomy, for example when eating unhealthy food. Supporting the individual constitutes an act of balance and poses an ethical dilemma (Bergstrom & Wihlman 2011). Against this background, it is crucial to develop interventions where both caregivers and people with intellectual disabilities have the possibility to acquire necessary skills and become empowered to make healthy choices. Designing and improving interventions involves not only expertise in specific behaviour, but also knowledge of the target group and the context in which an intervention is implemented (Fraser et al. 2009). For successful implementation in different settings, a better understanding of the organisation’s culture and climate is needed, including how people involved perceive their own roles and their support needs to effectively implement new routines (Glisson 2007). According to a systematic review of factors affecting the implementation process of health programmes, Durlak & DuPre (2008) identified five factors: community-level factors, provider characteristics, characteristics of the innovation, organisational capacity and factors related to the prevention support system. ‘Community-level factors’ refers to the community context, and ‘provider characteristics’ deals with the provider’s self-efficacy and skill proficiency. ‘Characteristics of the innovation’ refers to the compatibility and adaptability of the programme, whereas ‘organisational capacity’ deals with the work climate, norms and existing practices and routines. Finally, ‘factors related to the prevention support system’ involve technical assistance and training given to staff. To our knowledge, implementation studies focusing on community residences are lacking, and therefore, we wanted to explore aspects important to implementation of a health promotion intervention within this specific setting. This study is part of a multicomponent health promotion intervention to improve diet and physical activity among adults with intellectual disabilities living in community residences in Stockholm County, Sweden, the design of which has been published (Elinder et al. 2010). The intervention resulted in a positive effect on physical activity among participants (P = 0.045) as well © 2015 John Wiley & Sons Ltd, 28, 296–306
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as on work routines (P = 0.016) among staff in the intervention group compared to the control group. However, no significant effects were found on dietary quality, weight-related outcomes or satisfaction with life (Bergstrom et al. 2013). The aim of this study was to explore aspects important to the implementation process of this intervention, as perceived by health ambassadors and managers.
Methods Description of the intervention This complex health promotion intervention aimed at strengthening knowledge and skills among participants and staff, as well as building a supportive environment (Elinder et al. 2010). The intervention was based on social cognitive theory (SCT; Bandura 1986) according to which behaviour, personal factors and environmental influences all interact in a dynamic process. The intervention consisted of three components: (i) A health course for residents, (ii) appointment of a health ambassador in each residence and (iii) a study circle for the staff in each residence.
Health course for residents The aim of the course was to improve health literacy and health-related behaviours, and it covered five areas: diet, physical activity, culture/aesthetics, mental health and relaxation. The course included ten sessions with 2– 7 participants in each course. The sessions were conducted according to a manual and were led by a course leader from a national educational association for adults. Caregivers could participate in the course if needed by the participants, but were not encouraged to do so.
Health ambassadors By choice of the manager and caregivers, a health ambassador was appointed among the staff in each residence. The ambassadors’ role was to provide relevant health information to their colleagues in the residence and to organise activities for the participants. To facilitate knowledge exchange, the ambassadors were invited to six network meetings where they took part in lectures or workshop activities based on their own requests. They also received regular coaching by the research team.
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Study circle for caregivers The caregivers in each residence were encouraged to participate in a study circle, which included ten sessions. Written material was developed for this purpose, and a discussion leader was appointed to lead the sessions. The aim of the study circle was to increase staff knowledge and skills of health and health promotion and to empower them to improve work routines as well as to make improvements in the social and physical environment.
Implementation strategies Implementation strategies included a 2-h introductory meeting for managers and caregivers, a 1-day education for course leaders of the health course for the residents, regular newsletters and coaching on demand. Each residence was asked to complete the programme within 12–16 months and had the possibility to schedule the intervention components to fit their routines.
Setting and participants A total number of 33 community residences were recruited for the intervention, with 17 randomized to the intervention group and 16 in the control group. Due to heavy work load or organisational changes, three of them dropped out before starting the intervention, leaving 14 residences to complete the intervention. Within the 14 intervention residences, which comprise the material for this study, lived 95 individuals with mild or moderate intellectual disability, among which 64 chose to participate in the intervention. The community residences were located in both apartments and detached houses in the city of Stockholm and in surrounding municipalities. Most of the residents had their own kitchens, providing the opportunity to cook their own meals besides being able to eat common meals together with the other residents and staff a few times during the week. Most of the residents had supported employment. Thirteen health ambassadors and eight managers were involved in the intervention, and they were all invited to participate in this study. All of the health ambassadors and six of the managers agreed to participate (Table 1). Two of the health ambassadors were men, and all of the managers were women. Ages ranged from about 30 to 60 years old. In two residences, the health ambassador task was shared between two caregivers. Two managers began their employment after
the start of the intervention, and as we considered their opinions regarding factors for implementation valuable, we included them in the study.
Data collection The use of a qualitative method was found appropriate for this study as this method permits the evaluator to study selected issues in depth and detail (Patton 1990). Interviews were chosen to collect data by giving the investigator access and understanding of the perceptions of the participants (Berg & Lune 2012). The informants were contacted by phone and thereafter by a letter with information about the purpose of the study, and how data were going to be used. The first author (ES) performed all the interviews. The interviewer had not met the respondents prior to the interviews, with exception for a brief meeting with one of the health ambassadors. The interviews lasted from about 30 to 70 min and were conducted in offices or other places by choice of the respondents. Neither the health ambassadors nor the managers were given any incentives or rewards. In the two residences where the health ambassadors shared the task, they preferred to be interviewed together. In total, 21 interviews were planned for, but three of them were not carried out. One manager did not agree to be interviewed, another one was not reachable, and one health ambassador missed the appointment. Due to a technical problem, data from one interview with a manager were of insufficient quality to be analysed; therefore, 17 interviews were included in the analysis (Table 1). Table 1 Participating residences, health ambassadors and managers Residence
Health ambassador
1 2 3 4 5 6 7 8 9 10 11 12 13 14
a b c d e Vacancy f92 g h Missing i j k92 l
Manager A B Vacancy C C C D Missing Missing Missing E E Not valid Not valid
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Two different semistructured interview guides were used during the interviews, one for the health ambassadors and another one for the managers. The questions in both guides covered five factors affecting implementation described by Durlak & DuPre (2008) with a focus on barriers and facilitators. Although the two guides were similar, the interview guide used for the managers had more focus on organisational issues than the one used for the health ambassadors, as the managers were expected to know more about issues concerning administration and management. The guides were developed using laddered questions that help the interviewer to select questions and responses while taking into account the needs of the respondents (Price 2002). Probing was used to explore perceived problems, as well as positive and negative experiences. The interviews were carried out between November 2011 and February 2012. The study was approved by the Regional Ethical Review Board in Stockholm County, No. 2009/1332-31/ 5. Prior to each interview, the participants were informed about their right to call off the interview and were promised confidentiality.
Data analysis All interviews were transcribed verbatim and read through several times to obtain a sense of the content. The interviews from the health ambassadors and the managers were first analysed separately, and then, the analyses were integrated into a coherent whole. Data were analysed using qualitative content analysis according to the procedure described by Graneheim & Lundman (2004). Content analysis is a research method where you draw important information from your data with the aim to attain a broad description of phenomena, creating new insights and knowledge (Elo & Kyngas 2008). Initially, meaning units were identified and labelled with codes. The codes were identified, compared based on differences and similarities and finally sorted into categories and subcategories. Analysis was performed by the first author (ES). The second author (HB) read three of the interviews and commented on the coding and the development of categories, subcategories and themes.
Results In this qualitative study, we identified one overarching theme and four main categories that captured aspects important to the implementation process of a © 2015 John Wiley & Sons Ltd, 28, 296–306
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multicomponent health promotion intervention among adults with intellectual disabilities living in community residences, as perceived by health ambassadors and managers. An overview of the findings is given in Table 2.
Supporting motivation for change The overarching theme emerged out of the contents of the main categories. It describes the importance of supporting motivation for change among managers, caregivers and residents when implementing a health intervention in community residences. The intervention needs to be designed to support the participants to find their own motivation to engage in the project, as stated by one of the health managers; I would say this is the key, I mean to be able to make someone else feel motivated. (Health ambassador in Residence 5) From the perspectives of managers and health ambassadors, both caregivers and residents have to find their individual motivation to make changes. Furthermore, the support has to be tailored to each residence as well as for each individual, taking their specific needs and preferences into account.
Intervention characteristics The implementation of the programme was affected by the content and characteristics of the intervention. The compatibility with existing work procedures in the residences, as well as the perceived needs among the staff influenced the implementation process. Other factors that seemed to enhance the uptake of the programme were the inbuilt flexibility and participation of both staff and residents as to the content of the intervention components, the external course leader, and finally, support from the research team.
Compatibility and perceived needs According to both health ambassadors and managers, discussions concerning diet and healthy lifestyle were common in the community residences even prior to the intervention, implicating a fit for the programme with the staff0 s priorities. A recurring topic was how to best motivate the residents while respecting their autonomy. The interviewees expressed a need for support
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Table 2 Aspects important in the implementation process of a health intervention in community residences according to health ambassadors and managers Supporting motivation for change Intervention characteristics
Individual commitment
Organisational capacity
Societal influences
Compatibility and perceived needs
Work routines
Local policies and sanctions
A flexible and participatory approach
Competence and interest among staff Interest among residents
Financial and staffing resources
External input to staff and residents Support and preparation
Attitude of trustees and relatives
Work climate and leadership
Accessibility to a healthy environment Trends and media messages
regarding how to cope with daily situations that for them constituted an ethical dilemma. The health ambassadors aimed at achieving good cooperation among staff, thus leading to increased awareness and shared goals. Sometimes you maybe just go on and on and you don’t think about how and then you cannot change anything either, so it’s great to get a reminder about these things and discuss in the group so all of us can do the same stuff. (Health ambassador in Residence 12) The broad perspective of health and quality of life that was encompassed in the health course for the residents was well received by the residents according to the staff and seemed to be a relevant approach in this setting.
A flexible and participatory approach The inbuilt flexibility of the content of the intervention components facilitated adaptation to local needs. During the network meetings, the health ambassadors received information based on their own needs and interests which, according to them, led to an open and flexible atmosphere. Also, in situations where it was not possible to implement all components of the programme, parts of it could still be implemented. For example, when the residents in one residence chose not to participate in the health course, the staff was still able to conduct the other components. The participatory approach chosen implied that during the study circle, the staff was able to discuss topics of importance to them and to take an active part in finding solutions. Regarding the health course, the residents were perceived to be encouraged in their
autonomy and to get the opportunity to influence the content of the health course. I found it very exiting from the first time I heard about it, the fact that you had focus on the residents, after all, part of it is about the possibility they have to participate and be able to influence. (Manager in Residence 1)
External input to staff and residents The fact that the health course for the residents was led by an external course leader was often mentioned by the respondents. Using practical and creative exercises such as painting and preparing breakfast, the course leader influenced the residents’ autonomy. The health ambassadors felt relieved and inspired by the external course leader and expressed dissatisfaction and frustration in trying to influence and motivate the residents themselves. It0 s been good. . .to put some focus on it and not just from the staff but that it was someone else that led the circle. (Manager in Residence 2) Some of the health ambassadors and managers expressed a wish to be able to take part in the health course for the residents to better support the participants, even if this was declared with a concern that it might change the relations and the dynamics in the group.
Support and preparation Support and attention from the project team during the intervention was considered important. Being part of a © 2015 John Wiley & Sons Ltd, 28, 296–306
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research study ‘with the potential to change the situation for people with intellectual disabilities’ as it was described by one health ambassador, was perceived as being a task of importance, giving a feeling of exclusivity. Some programme modifications and improvements were suggested, including information meetings for the entire workgroup in each residence, preferably well ahead of the start of the intervention. The importance of establishing the programme in the residences and preparing the staff well in advance of the programme was emphasised. I think you should start preparing the staff a long time before you involve the residents, so when they know what it’s all about and what’s going to happen, then you go at it – but now it has all come at once. (Manager in Residences 4–6)
Individual commitment Competence and skills among the staff as well as responsiveness among the residents influenced the possibilities of implementing the intervention. A general interest in health-related issues among staff, residents and their relatives also facilitated the implementation.
Competence and interest among staff Competence among the staff, as well as personal interest in and attitudes towards health-related issues, seemed to be issues affecting the process of implementation. Among the staff, self-efficacy was expressed as knowledge, joy, and skills concerning meal planning and cooking, as well as the importance of having a professional attitude towards healthy eating and daily physical activity. The advantage of having one person in the team with deeper interest and motivation for these issues was highlighted. The qualification is that there is a motivation and that not everybody needs to be that motivated, but at least a few. As a manager you cannot decide and point out this should be done. . .there must be a motivation in the group for this kind of work. (Manager in Residence 7)
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support and influenced what sort of activities was best suited within the framework of the intervention. This is a group that you can take for a walk and engage with them in activities. . .maybe if you work in a residence with only autistic persons it will be different. . . (Manager in Residences 11–12) Motivation and interest among the participants were considered important. The respondents mentioned feelings of happiness and satisfaction among the residents to do things together. In one residence, no health course for the residents was conducted, as the residents were not interested according to the interview with the health ambassador. Another important aspect brought up by the respondents was the financial situation of the participants. As many of them had a tight budget, the staff had to find and offer leisure activities that were not too expensive.
Attitude of trustees and relatives The role of trustees and relatives in the implementation was perceived to be modest. Although the involvement of the trustees and relatives was varying, most of them seemed to be positive concerning the health project. This was, according to one manager, despite some of the trustees and relatives not really understanding the intention of the programme. I don’t know – they have such high expectations on the outcome. They considered it foolish in some way, yet they haven’t seen the joy of the participants; this is for their sake and they think it’s quite fun. (Manager in Residences 4–6)
Organisational capacity The implementation of the intervention was influenced by the organisational capacity. Work routines, resources including staffing considerations, work climate and leadership were factors facilitating or hindering project implementation.
Work routines Interest among residents The physical and intellectual abilities of the residents were perceived by staff and managers to affect the © 2015 John Wiley & Sons Ltd, 28, 296–306
The health ambassadors stressed that their main task as staff was to support the residents in their daily lives; and therefore, they had to prioritise everyday activities. Then, if there was any time left, they had the
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opportunity to spend it on health promotion activities within the framework of the intervention. For example, it was sometimes difficult to find time for the study circle sessions. We do a lot of work alone, so during the two hours when we all meet there will be a lot of talk of matters concerning the residents. . .it can be difficult to get the time needed. . .so we extended some meetings to be able to catch up. (Health ambassador in Residence 12) Having flexibility in the work schedule and supportive colleagues seemed to be pre-requisites to participating in the network meetings for health ambassadors. Well-functioning routines for collaboration between staff in neighbouring residences were a facilitating factor when trying to implement different parts of the intervention. In residences where collaboration between residences was missing, it was requested.
Financial and staffing resources Resources important when implementing the intervention included staffing considerations and financial resources. Adequate staffing was important as the staff had to be available to accompany the residents to activities like working-out or going swimming. On the other hand, the work teams could not be too big, as smaller teams facilitated group discussions. A high turnover among the staff as well as among the managers was an impeding factor, especially when starting up the project. In one residence, a high staff turnover led to a situation where the health project was set aside for a while. One of the health ambassadors described a situation where the project had landed in her lap because a colleague and former health ambassadors had quit her job. Time issues, mostly time constraints, were highlighted by the health ambassadors, and one manager brought up limited financial resources and expectation to implement the project within the existing budget. We had to do this project within the confines of the existing budget; at the same time as you are required to make savings. You are supposed to do things that other residences don0 t, and these things take time; you don0 t do them just like that. (Manager in Residences 4–6)
Work climate and leadership The support of an engaged manager and a warm work climate where colleagues share responsibilities were described as important factors contributing to the implementation of the programme. Managers emphasized that health ambassadors were not meant to carry out the project by themselves. The role of the health ambassadors was, in some situations, perceived as being a kind of leader for their colleagues. This appeared to be a challenge, and something that the health ambassadors should have been better prepared for. They end up in an uncomfortable position – kind of leading their colleagues, and not everybody thinks that’s so fun. (Manager in Residences 4–6)
Societal influences Local policies, municipality sanctions and aspects of the physical environment were not addressed in this intervention, but nevertheless, they seemed to be determinants that influenced implementation as judged by the respondents.
Local policies and sanction From the interviews, it was obvious that the opinion and agenda of the politicians in the municipality influenced the motivation of the staff and hence the implementation of the intervention. In one of the municipalities, where the project was sanctioned on a political level, this support seemed to increase the motivation for implementing the programme even though resources were lacking. When we started the project, for a moment I thought it was very depressing. . .but after a while we got support from the municipality [. . .] and the manager engaged in the project (Health ambassador in Residence 4) The respondents brought up aims concerning health activities run by the municipality. Two of the health ambassadors were already engaged in health promotion initiatives initiated by the municipality, which increased the motivation and engagement of the ambassadors.
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Accessibility to a healthy environment Access to parks and green areas in the neighbourhood was perceived to facilitate daily physical activity for both the residents and the staff. The proximity of food stores, coffee shops and gym facilities also affected the implementation of the health intervention, by offering opportunities as well as barriers to implement healthy activities initiated within the intervention. So here we’ve got the grocery store only two minutes away, and we have more of them. . .and cafes and drugstores and hot dog stands. . ..so it’s close to all sorts of things. (Health ambassador in Residence 7) One residence was located close to a gym offering special classes for individuals with intellectual disabilities. Unfortunately, these classes were held during daytime while the residents were at work, leaving them only with options late at night on the other side of the city.
Trends and media messages A general health interest by society and media attention concerning overweight, dietary habits and physical activity were brought up by both groups of respondents. According to them, this resulted in a broad awareness yet sometimes in confusion as well, especially regarding healthy eating and dietary recommendations. One health ambassador mentioned that the work team got into arguments concerning what is a healthy diet, which caused confusion affecting some of the participants negatively. When it comes to ideas concerning diet and health, it is total (sigh). . .here we sometimes can disagree. . . everyone has their own theories on how to lose weight and which diet is good or bad for you. It0 s like the rest you see in the paper – total chaos with the Atkins diet and GI, and all of that. (Health ambassador in Residence 8)
Discussion This study for the first time presents aspects important in the implementation process of a health promotion intervention targeting persons with intellectual disabilities, viewed from the perspectives of health © 2015 John Wiley & Sons Ltd, 28, 296–306
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ambassadors and managers in community residences in a Swedish setting. The main findings imply that supporting motivation for change is needed at all levels during the implementation process. Other findings imply that it is important to have a supportive work environment together with an intervention that fits the needs and values of the residences, as well as a political will expressed by the municipality. The health ambassadors believed that work routines could be improved through the programme, hoped that contributing to a consensus and more professionalized routines. According to Durlak & DuPre (2008), a perceived need is a fundamental requirement when planning to implement a programme and thereby increases the participants’ willingness to do what is expected of them. Compatibility of a programme with the administering organisation’s culture and norms is essential, as it is suggested that providers and organisations implement programmes more effectively if they fit with the organisation’s priorities and existing practices (Durlak & DuPre 2008). When comparing implementation in various settings, one must notice that a community residence differs from other workplaces in some important aspects. Staff is working in someone’s home where they have to respect the autonomy and integrity of their clients; yet at the same time, they should have a professional attitude when supporting them in everyday life. The fact that the intervention involved both staff and residents was perceived as a facilitating factor. The importance of including staff is supported by results of an intervention targeting women with intellectual disabilities in the United States in which the authors conclude that without being part of the experience, the staff cannot support their clients in practicing new skills (Lunsky et al. 2003). Ethical dilemmas and conflicts between providing support and respecting autonomy are well-known challenges in this setting (van Hooren et al. 2002; Spanos et al. 2013), and also in this study, there was a great need to discuss these issues. The inclusion of the external course leader was indeed a success story according to both health ambassadors and managers. They brought in creativity, widening the health concept with culture and relaxation. Compared to mainstream health promotion with an over-reliance on written material, new ways of providing information about health can be of better use to individuals with learning disabilities (Hawkins & Look 2006). The health course for the residents was mainly conducted without the presence of caregivers, which
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meant that the caregivers did not support the participants during the course. This was emphasized as an excellent opportunity for the residents to autonomously take part in and, together with the other course participants, share the experience of a group activity. On the other hand, it made it difficult for the staff to support the participants not knowing what they had learnt. One way to solve this dilemma would be through regular contacts between the course leader and the staff. There was a request for more support from the research team during the initial implementation phase. According to a Swedish report regarding competence and developmental needs among staff in the area of functional impairments, general training is requested by staff themselves, regarding, for example health promotion, nutrition and communication (Carpe 2010). Staff training and additional preparation and involvement of the relatives and trustees to increase their interest for the project might also support the residents and have an impact on health-related conditions in the residences. In a study comparing dietary intake in three different community settings for adults with intellectual disabilities, one conclusion made was to include nutrition training for family members along with the persons that they support (Draheim et al. 2007). To increase the motivation to comply with lifestyle changes, it is important to include caregivers and participants in the planning and delivery of programmes (Jinks et al. 2011). A challenge when addressing this particular population includes developing programmes that take intellectual limitation into account (Heller et al. 2011). Some managers pointed out that the level of intellectual capacity among the residents is crucial and that it determines to what extent and in what way the intervention can be delivered. The impact of intellectual deficits among the participants and lack of understanding of the benefits of lifestyle-related changes has been highlighted in several studies (Hawkins & Look 2006; Spanos et al. 2013). To meet the needs of the target group, it is important that health programmes include adequate support for the staff as well as having flexibility in schedule and content. It is well known that organisational capacity is important for successful programme implementation, and developing adequate capacity among local providers is essential to conducting new programmes (Durlak & DuPre 2008). In this study, having a warm work climate, staff stability and a flexible work schedule
together with an engaged manager were all factors that were reported as important for the implementation. As in many intervention studies, a key issue seemed to be prioritizing and providing the intervention with ‘space’ and resources such as staffing. Comparable to Messent et al. (1999), it was reported that poor staffing levels hindered opportunities for physical activity of the residents. Non-programme factors such as politics, policies and local conditions can influence fidelity or at least explain some variation in implementation. One hindering factor was not having access to a gym or other opportunities for adopting a more active lifestyle in the neighbourhood. Limited options for being physically active in combination with unclear policy guidelines has also been noticed in a study by Messent et al. (1999). The findings indicate that reinforcement from the municipality level is essential to maintain awareness and commitment to this kind of programme. As pointed out in the review by Heller et al. (2011), agency structure can impact involvement in health promotion activities. The findings of this study might, in several aspects, be relevant to other settings, such as schools and work places. Supportive leadership, a positive work climate and a programme meeting perceived needs are implementation factors applicable in a range of settings (Durlak & DuPre 2008). What is specific in this setting, is that the target group has a cognitive disability, which makes it even more difficult to understand long-term consequences of behaviour, and why and how to make healthy choices in everyday life. The staff has to guide the residents through a jungle of choices without encroaching on their autonomy. Although this task is difficult and delicate, the staff might be poorly educated and, in some cases, unmotivated themselves. In situations where there are time constraints and a heavy work load, it is even more important that staff has access to external support, for example by nurses, physiotherapists or dieticians.
Methodological considerations To our knowledge, this is the first study describing aspects important during the implementation process of a universal multicomponent health intervention targeting people with intellectual disabilities. The setting and the intervention are described in detail, and therefore, the results should be transferable to similar contexts. The credibility of the data was increased by comparing the perspectives of both health ambassadors © 2015 John Wiley & Sons Ltd, 28, 296–306
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and managers. By intersubjective agreement in the coding and analysis of the data, trustworthiness of the study was increased (Patton 1990). The first author (ES), working as a public health nutritionist with some experience from this setting, has considerable knowledge about issues concerning healthy diets and challenges in health promotion in community residences, but was not involved in the planning or implementation of this particular intervention. The second author (HB), who was also a project manager, had a different kind of pre-understanding. Prior knowledge may impact the interpretations, but knowledge and insights can help the researcher to understand events and actions better than a researcher without experience (Corbin & Strauss 2008). In this case, pre-understanding was judged useful, yet the potential for bias was kept in mind during interpretation of the data. A strength of this study is that a high proportion of the health ambassadors and managers interviewed represented a strategic sample that enabled variation. The reason for not interviewing the residents in this study was that the focus was on factors affecting the implementation of the programme, rather than the programme itself. However, in another study focusing on the health course for the residents, observations were used to capture what was happening during the group activities (Bergstr€ om et al. 2014). In this way, attention was given to all participants, including those who had difficulties expressing themselves verbally. Given the influences from the municipality as the administrator of the community residences, in the future, one approach could be to address local policies and sanctions, when planning implementation strategies. Implementation research that includes the policy environment could at the same time reveal more information about potential policy barriers and facilitators that influence the health and lives of adults with intellectual disabilities living in community residences.
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can be facilitated by meeting perceived needs, as in this case, when the staff wanted advice in how to balance between promoting healthy behaviour and at the same time supporting autonomy. Another facilitator is a flexible and participatory approach, allowing tailoring of the content to local needs as well as external support, which can act as an inspirational source for both residents and caregivers. An identified barrier was the preparation phase, which was not extensive enough to get all staff on board. Therefore, it is important to prepare and motivate staff well ahead of the intervention. These findings can be of great value in the further development of this or similar health promotion programmes intended for community residences for adults with intellectual disabilities. However, this study has shown that there is room for further improvement of implementation strategies regarding the preparation phase and policy development to support health promotion. Furthermore, the programme should be evaluated during real-life conditions when it is run by the municipalities instead of the research team.
Acknowledgments The authors would like to thank the managers and health ambassadors for their participation. We also thank Dr. Anneli Marttila and Dr. Maria Hagstr€ omer for critically reviewing the manuscript. The study was funded by The Public Health Fund, Stockholm County Council grant no. 0802-0339 and the S€ avstaholm Foundation.
Correspondence Any correspondence should be directed to Elinor Sundblom, Centre for Epidemiology and Community Medicine, Box 1497, Solna 171 29, Sweden (e-mail: [email protected]).
References Conclusion Implementation of a complex programme in the context of group homes for adults with intellectual disabilities poses several challenges, which need to be addressed to reach full effect. To achieve higher fidelity to the programme components, that is the extent to which the intervention is carried out as intended, it is important to support the motivation for change among managers, caregivers and residents. The implementation process © 2015 John Wiley & Sons Ltd, 28, 296–306
Adolfsson P., Sydner Y. M., Fjellstrom C., Lewin B. & Andersson A. (2008) Observed dietary intake in adults with intellectual disability living in the community. Food & Nutrition Research 52, DOI: 10.3402/fnr.v52i0.1857 Bandura A. (1986) Social Foundations of Thought and Action: A Social Cognitive Theory. Prentice-Hall, Englewood Cliffs, NJ. Berg B. L. & Lune H. (2012) Qualitative Research Methods for the Social Sciences. Pearson International Edition, New Jersey. Bergstrom H. & Wihlman U. (2011) The role of staff in health promotion in community residences for people with
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intellectual disabilities: variation in views among managers and caregivers. Journal of Intellectual Disabilities 15, 167–176. Bergstrom H., Hagstromer M., Hagberg J. & Elinder L. S. (2013) A multi-component universal intervention to improve diet and physical activity among adults with intellectual disabilities in community residences: a cluster randomised controlled trial. Research in Developmental Disabilities 34, 3847–3857. Bergstr€ om H., Elinder L. S. & Wihlman U. (2014) Barriers and facilitators in health education for adults with intellectual disabilities – a qualitative study. Health Education Research 29, 259–271. Bryan F., Allan T. & Russell L. (2000) The move from a longstay learning disabilities hospital to community homes: a comparison of clients’ nutritional status. Journal of Human Nutrition and Dietetics 13, 265–270. Carpe (2010) Verksamhetsanalys- kompetens- och utvecklingsbehov. Sammanst€allning av analyser i 19 kommuner [Activity analysis, competence- and developmental needs, review from analysis in 19 municipalities]. Available at: http://www.projectcarpe.se (accessed on 13 October 2014). Corbin J. & Strauss A. (2008) Basics of Qualitative Research. Sage, New York. Draheim C. C., Stanish H. I., Williams D. P. & McCubbin J. A. (2007) Dietary intake of adults with mental retardation who reside in community settings. American Journal of Mental Retardation 112, 392–400. Durlak J. A. & DuPre E. P. (2008) Implementation matters: a review of research on the influence of implementation on program outcomes and the factors affecting implementation. American Journal of Community Psychology 41, 327–350. Elinder L. S., Bergstrom H., Hagberg J., Wihlman U. & Hagstromer M. (2010) Promoting a healthy diet and physical activity in adults with intellectual disabilities living in community residences: design and evaluation of a clusterrandomized intervention. BMC Public Health 10, 761. Elo S. & Kyngas H. (2008) The qualitative content analysis process. Journal of Advanced Nursing 62, 107–115. Fraser M. W., Richman J. M., Galinsky M. J. & Day S. H. (2009) Intervention Research Developing Social Programs. Oxford University Press, New York. Gabre P., Martinsson T. & Gahnberg L. (2002) Move of adults with intellectual disability from institutions to communitybased living: changes of food arrangements and oral health. Swedish Dental Journal 26, 81–88. Glisson C. (2007) Assessing and changing organizational culture and climate for effective services. Research on Social Work Practice 17, 736–747. Graneheim U. H. & Lundman B. (2004) Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness. Nurse Education Today 24, 105–112. Hamilton S., Hankey C. R., Miller S., Boyle S. & Melville C. A. (2007) A review of weight loss interventions for adults with intellectual disabilities. Obesity Reviews 8, 339–345. Hawkins A. & Look R. (2006) Levels of engagement and barriers to physical activity in a population of adults with
learning disabilities. British Journal of Learning Disabilities 34, 220–226. Heller T., McCubbin J. A., Drum C. & Peterson J. (2011) Physical activity and nutrition health promotion interventions: what is working for people with intellectual disabilities? Intellectual and Developmental Disabilities 49, 26– 36. van Hooren R. H., Widdershoven G. A. M., van den Borne H. W. & Curfs L. M. G. (2002) Autonomy and intellectual disability: the case of prevention of obesity in Prader-Willi syndrome. Journal of Intellectual Disability Research 46, 560–568. Jinks A., Cotton A. & Rylance R. (2011) Obesity interventions for people with a learning disability: an integrative literature review. Journal of Advanced Nursing 67, 460–471. Lunsky Y., Straiko A. & Armstrong S. (2003) Women be healthy: Evaluation of a women’s health curriculum for women with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities 16, 247–253. Messent P. R., Cooke C. B. & Long J. (1999) Physical activity, exercise and health of adults with mild and moderate learning disabilities. Disability and Rehabilitation 21, 409–419. Ministry of Health and Social Affairs (1993) Lag om st€ od och service till vissa funktionshindrade [Act concerning Support and Service for Persons with Certain Functional Impairments]. Stockholm (1993:387). Patton M. Q. (1990) Qualitative Evaluation and Research Methods. Sage Publications, Londan. Price B. (2002) Laddered questions and qualitative data research interviews. Journal of Advanced Nursing 37, 273–281. Rimmer J. H. & Yamaki K. (2006) Obesity and intellectual disability. Mental Retardation and Developmental Disabilities Research Reviews 12, 22–27. Robertson J., Emerson E., Gregory N., Hatto C., Turner S., Kessissoglou S. & Hallam A. (2000) Lifestyle related risk factors for poor health in residential settings for people with intellectual disabilities. Research in Developmental Disabilities 21, 469–486. Spanos D., Hankey C. R., Boyle S., Koshy P., MacMillan S., Matthews L., Miller S., Penpraze V., Pert C., Robinson N. & Melville C. A. (2013) Carers’ perspectives of a weight loss intervention for adults with intellectual disabilities and obesity: a qualitative study. Journal of Intellectual Disability Research 57, 90–102. Swedish National Institute for Public Health (2013) Uppdrag om delm al m.m. inom ramen f€ or “En strategi f€ or genomf€ orande av funktionshinderspolitiken 2011–2016 [Strategy for implementation of politics concerning Functional € Impairments]. Ostersund: 2013 Dnr VERK 2011/442 Umb-Carlsson O. & Sonnander K. (2005) Comparison of the living conditions of adults with intellectual disabilities in a Swedish county and in the general population. Journal of Policy and Practice in Intellectual Disabilities 2, 240–248. World Health Organization (2011) World Report on Disability. Available at: http://whqlibdoc.who.int/publications/2011/ 9789240685215_eng.pdf. Geneva. (accessed on 13 October 2014).
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Understanding the Implementation Process of a Multi-Component Health Promotion Intervention for Adults with Intellectual Disabilities in Sweden Elinor Sundblom†, Helena Bergstr€ om* and Liselotte Sch€afer Ellinder* *Public Health Sciences, Karolinska Institutet, Stockholm, Sweden; †Centre for Epidemiology and Community Medicine, Solna, Sweden
Accepted for publication 29 July 2014
Background There is a need to better understand implementation processes of health interventions. This study describes the implementation of a multicomponent intervention to improve diet and physical activity among adults with intellectual disabilities, viewed from the perspectives of staff and managers. Materials and Methods All health ambassadors (n = 12), appointed among staff and managers (n = 5) taking part of a health intervention in community residences in Sweden, were interviewed with a focus on barriers and facilitators regarding implementation of the intervention. Data were analysed using content analysis. Results The overarching theme describes the importance of supporting motivation for change among managers,
Introduction People with disabilities carry a higher burden of chronic diseases compared to the general population (World Health Organization 2011), partly due to behavioural risk factors such as poor dietary habits (Draheim et al. 2007; Adolfsson et al. 2008), low physical activity (Robertson et al. 2000) and obesity (Rimmer & Yamaki 2006). Social circumstances and living conditions differ from the general population including lower rate of employment and a more restricted social life (UmbCarlsson & Sonnander 2005). According to research in both the United States and Sweden, changes in the physical and social environment, due to deinstitutionalisation, have brought about unintentional body weight changes and nutrition-related problems (Bryan et al. 2000; Gabre et al. 2002). Among people with intellectual disabilities, impaired health – not primarily © 2015 John Wiley & Sons Ltd
caregivers and residents. The experiences of the implementation process are described in four main categories: intervention characteristics, individual commitment, organizational capacity and societal factors. Conclusion The implementation can be facilitated by a programme meeting perceived needs, a flexible and participatory approach, external input and an extensive preparation phase. Keywords: community residences, content analysis, health promotion, implementation, intellectual disability, intervention
due to their intellectual disability – is common and health promotion actions targeting this vulnerable group are rare (Swedish National Institute for Public Health 2013). In Sweden, the municipalities are responsible for offering housing for this group and many adults with intellectual disabilities live in community residences where they receive support from staff in their daily living. According to Swedish law, the support should be based on self-determination and integrity (Ministry of Health & Social Affairs 1993). Interventions targeting health behaviours of people with intellectual disabilities often focus on education, and there is some evidence of health benefits from community-based programmes (Heller et al. 2011; Jinks et al. 2011). In a review by Hamilton et al. (2007) on weight loss interventions, it was concluded that multicomponent interventions targeting diet and physical activity as well as staff involvement were 10.1111/jar.12139
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successful in changing behaviours. Knowledge about health promotion is important among staff, as they can have a strong influence on both dietary and physical activity patterns of adults with intellectual disability living in community residences. Caregivers are often confronted with situations in which there is a conflict between providing good care and respecting the residents0 autonomy, for example when eating unhealthy food. Supporting the individual constitutes an act of balance and poses an ethical dilemma (Bergstrom & Wihlman 2011). Against this background, it is crucial to develop interventions where both caregivers and people with intellectual disabilities have the possibility to acquire necessary skills and become empowered to make healthy choices. Designing and improving interventions involves not only expertise in specific behaviour, but also knowledge of the target group and the context in which an intervention is implemented (Fraser et al. 2009). For successful implementation in different settings, a better understanding of the organisation’s culture and climate is needed, including how people involved perceive their own roles and their support needs to effectively implement new routines (Glisson 2007). According to a systematic review of factors affecting the implementation process of health programmes, Durlak & DuPre (2008) identified five factors: community-level factors, provider characteristics, characteristics of the innovation, organisational capacity and factors related to the prevention support system. ‘Community-level factors’ refers to the community context, and ‘provider characteristics’ deals with the provider’s self-efficacy and skill proficiency. ‘Characteristics of the innovation’ refers to the compatibility and adaptability of the programme, whereas ‘organisational capacity’ deals with the work climate, norms and existing practices and routines. Finally, ‘factors related to the prevention support system’ involve technical assistance and training given to staff. To our knowledge, implementation studies focusing on community residences are lacking, and therefore, we wanted to explore aspects important to implementation of a health promotion intervention within this specific setting. This study is part of a multicomponent health promotion intervention to improve diet and physical activity among adults with intellectual disabilities living in community residences in Stockholm County, Sweden, the design of which has been published (Elinder et al. 2010). The intervention resulted in a positive effect on physical activity among participants (P = 0.045) as well © 2015 John Wiley & Sons Ltd, 28, 296–306
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as on work routines (P = 0.016) among staff in the intervention group compared to the control group. However, no significant effects were found on dietary quality, weight-related outcomes or satisfaction with life (Bergstrom et al. 2013). The aim of this study was to explore aspects important to the implementation process of this intervention, as perceived by health ambassadors and managers.
Methods Description of the intervention This complex health promotion intervention aimed at strengthening knowledge and skills among participants and staff, as well as building a supportive environment (Elinder et al. 2010). The intervention was based on social cognitive theory (SCT; Bandura 1986) according to which behaviour, personal factors and environmental influences all interact in a dynamic process. The intervention consisted of three components: (i) A health course for residents, (ii) appointment of a health ambassador in each residence and (iii) a study circle for the staff in each residence.
Health course for residents The aim of the course was to improve health literacy and health-related behaviours, and it covered five areas: diet, physical activity, culture/aesthetics, mental health and relaxation. The course included ten sessions with 2– 7 participants in each course. The sessions were conducted according to a manual and were led by a course leader from a national educational association for adults. Caregivers could participate in the course if needed by the participants, but were not encouraged to do so.
Health ambassadors By choice of the manager and caregivers, a health ambassador was appointed among the staff in each residence. The ambassadors’ role was to provide relevant health information to their colleagues in the residence and to organise activities for the participants. To facilitate knowledge exchange, the ambassadors were invited to six network meetings where they took part in lectures or workshop activities based on their own requests. They also received regular coaching by the research team.
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Study circle for caregivers The caregivers in each residence were encouraged to participate in a study circle, which included ten sessions. Written material was developed for this purpose, and a discussion leader was appointed to lead the sessions. The aim of the study circle was to increase staff knowledge and skills of health and health promotion and to empower them to improve work routines as well as to make improvements in the social and physical environment.
Implementation strategies Implementation strategies included a 2-h introductory meeting for managers and caregivers, a 1-day education for course leaders of the health course for the residents, regular newsletters and coaching on demand. Each residence was asked to complete the programme within 12–16 months and had the possibility to schedule the intervention components to fit their routines.
Setting and participants A total number of 33 community residences were recruited for the intervention, with 17 randomized to the intervention group and 16 in the control group. Due to heavy work load or organisational changes, three of them dropped out before starting the intervention, leaving 14 residences to complete the intervention. Within the 14 intervention residences, which comprise the material for this study, lived 95 individuals with mild or moderate intellectual disability, among which 64 chose to participate in the intervention. The community residences were located in both apartments and detached houses in the city of Stockholm and in surrounding municipalities. Most of the residents had their own kitchens, providing the opportunity to cook their own meals besides being able to eat common meals together with the other residents and staff a few times during the week. Most of the residents had supported employment. Thirteen health ambassadors and eight managers were involved in the intervention, and they were all invited to participate in this study. All of the health ambassadors and six of the managers agreed to participate (Table 1). Two of the health ambassadors were men, and all of the managers were women. Ages ranged from about 30 to 60 years old. In two residences, the health ambassador task was shared between two caregivers. Two managers began their employment after
the start of the intervention, and as we considered their opinions regarding factors for implementation valuable, we included them in the study.
Data collection The use of a qualitative method was found appropriate for this study as this method permits the evaluator to study selected issues in depth and detail (Patton 1990). Interviews were chosen to collect data by giving the investigator access and understanding of the perceptions of the participants (Berg & Lune 2012). The informants were contacted by phone and thereafter by a letter with information about the purpose of the study, and how data were going to be used. The first author (ES) performed all the interviews. The interviewer had not met the respondents prior to the interviews, with exception for a brief meeting with one of the health ambassadors. The interviews lasted from about 30 to 70 min and were conducted in offices or other places by choice of the respondents. Neither the health ambassadors nor the managers were given any incentives or rewards. In the two residences where the health ambassadors shared the task, they preferred to be interviewed together. In total, 21 interviews were planned for, but three of them were not carried out. One manager did not agree to be interviewed, another one was not reachable, and one health ambassador missed the appointment. Due to a technical problem, data from one interview with a manager were of insufficient quality to be analysed; therefore, 17 interviews were included in the analysis (Table 1). Table 1 Participating residences, health ambassadors and managers Residence
Health ambassador
1 2 3 4 5 6 7 8 9 10 11 12 13 14
a b c d e Vacancy f92 g h Missing i j k92 l
Manager A B Vacancy C C C D Missing Missing Missing E E Not valid Not valid
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Two different semistructured interview guides were used during the interviews, one for the health ambassadors and another one for the managers. The questions in both guides covered five factors affecting implementation described by Durlak & DuPre (2008) with a focus on barriers and facilitators. Although the two guides were similar, the interview guide used for the managers had more focus on organisational issues than the one used for the health ambassadors, as the managers were expected to know more about issues concerning administration and management. The guides were developed using laddered questions that help the interviewer to select questions and responses while taking into account the needs of the respondents (Price 2002). Probing was used to explore perceived problems, as well as positive and negative experiences. The interviews were carried out between November 2011 and February 2012. The study was approved by the Regional Ethical Review Board in Stockholm County, No. 2009/1332-31/ 5. Prior to each interview, the participants were informed about their right to call off the interview and were promised confidentiality.
Data analysis All interviews were transcribed verbatim and read through several times to obtain a sense of the content. The interviews from the health ambassadors and the managers were first analysed separately, and then, the analyses were integrated into a coherent whole. Data were analysed using qualitative content analysis according to the procedure described by Graneheim & Lundman (2004). Content analysis is a research method where you draw important information from your data with the aim to attain a broad description of phenomena, creating new insights and knowledge (Elo & Kyngas 2008). Initially, meaning units were identified and labelled with codes. The codes were identified, compared based on differences and similarities and finally sorted into categories and subcategories. Analysis was performed by the first author (ES). The second author (HB) read three of the interviews and commented on the coding and the development of categories, subcategories and themes.
Results In this qualitative study, we identified one overarching theme and four main categories that captured aspects important to the implementation process of a © 2015 John Wiley & Sons Ltd, 28, 296–306
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multicomponent health promotion intervention among adults with intellectual disabilities living in community residences, as perceived by health ambassadors and managers. An overview of the findings is given in Table 2.
Supporting motivation for change The overarching theme emerged out of the contents of the main categories. It describes the importance of supporting motivation for change among managers, caregivers and residents when implementing a health intervention in community residences. The intervention needs to be designed to support the participants to find their own motivation to engage in the project, as stated by one of the health managers; I would say this is the key, I mean to be able to make someone else feel motivated. (Health ambassador in Residence 5) From the perspectives of managers and health ambassadors, both caregivers and residents have to find their individual motivation to make changes. Furthermore, the support has to be tailored to each residence as well as for each individual, taking their specific needs and preferences into account.
Intervention characteristics The implementation of the programme was affected by the content and characteristics of the intervention. The compatibility with existing work procedures in the residences, as well as the perceived needs among the staff influenced the implementation process. Other factors that seemed to enhance the uptake of the programme were the inbuilt flexibility and participation of both staff and residents as to the content of the intervention components, the external course leader, and finally, support from the research team.
Compatibility and perceived needs According to both health ambassadors and managers, discussions concerning diet and healthy lifestyle were common in the community residences even prior to the intervention, implicating a fit for the programme with the staff0 s priorities. A recurring topic was how to best motivate the residents while respecting their autonomy. The interviewees expressed a need for support
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Table 2 Aspects important in the implementation process of a health intervention in community residences according to health ambassadors and managers Supporting motivation for change Intervention characteristics
Individual commitment
Organisational capacity
Societal influences
Compatibility and perceived needs
Work routines
Local policies and sanctions
A flexible and participatory approach
Competence and interest among staff Interest among residents
Financial and staffing resources
External input to staff and residents Support and preparation
Attitude of trustees and relatives
Work climate and leadership
Accessibility to a healthy environment Trends and media messages
regarding how to cope with daily situations that for them constituted an ethical dilemma. The health ambassadors aimed at achieving good cooperation among staff, thus leading to increased awareness and shared goals. Sometimes you maybe just go on and on and you don’t think about how and then you cannot change anything either, so it’s great to get a reminder about these things and discuss in the group so all of us can do the same stuff. (Health ambassador in Residence 12) The broad perspective of health and quality of life that was encompassed in the health course for the residents was well received by the residents according to the staff and seemed to be a relevant approach in this setting.
A flexible and participatory approach The inbuilt flexibility of the content of the intervention components facilitated adaptation to local needs. During the network meetings, the health ambassadors received information based on their own needs and interests which, according to them, led to an open and flexible atmosphere. Also, in situations where it was not possible to implement all components of the programme, parts of it could still be implemented. For example, when the residents in one residence chose not to participate in the health course, the staff was still able to conduct the other components. The participatory approach chosen implied that during the study circle, the staff was able to discuss topics of importance to them and to take an active part in finding solutions. Regarding the health course, the residents were perceived to be encouraged in their
autonomy and to get the opportunity to influence the content of the health course. I found it very exiting from the first time I heard about it, the fact that you had focus on the residents, after all, part of it is about the possibility they have to participate and be able to influence. (Manager in Residence 1)
External input to staff and residents The fact that the health course for the residents was led by an external course leader was often mentioned by the respondents. Using practical and creative exercises such as painting and preparing breakfast, the course leader influenced the residents’ autonomy. The health ambassadors felt relieved and inspired by the external course leader and expressed dissatisfaction and frustration in trying to influence and motivate the residents themselves. It0 s been good. . .to put some focus on it and not just from the staff but that it was someone else that led the circle. (Manager in Residence 2) Some of the health ambassadors and managers expressed a wish to be able to take part in the health course for the residents to better support the participants, even if this was declared with a concern that it might change the relations and the dynamics in the group.
Support and preparation Support and attention from the project team during the intervention was considered important. Being part of a © 2015 John Wiley & Sons Ltd, 28, 296–306
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research study ‘with the potential to change the situation for people with intellectual disabilities’ as it was described by one health ambassador, was perceived as being a task of importance, giving a feeling of exclusivity. Some programme modifications and improvements were suggested, including information meetings for the entire workgroup in each residence, preferably well ahead of the start of the intervention. The importance of establishing the programme in the residences and preparing the staff well in advance of the programme was emphasised. I think you should start preparing the staff a long time before you involve the residents, so when they know what it’s all about and what’s going to happen, then you go at it – but now it has all come at once. (Manager in Residences 4–6)
Individual commitment Competence and skills among the staff as well as responsiveness among the residents influenced the possibilities of implementing the intervention. A general interest in health-related issues among staff, residents and their relatives also facilitated the implementation.
Competence and interest among staff Competence among the staff, as well as personal interest in and attitudes towards health-related issues, seemed to be issues affecting the process of implementation. Among the staff, self-efficacy was expressed as knowledge, joy, and skills concerning meal planning and cooking, as well as the importance of having a professional attitude towards healthy eating and daily physical activity. The advantage of having one person in the team with deeper interest and motivation for these issues was highlighted. The qualification is that there is a motivation and that not everybody needs to be that motivated, but at least a few. As a manager you cannot decide and point out this should be done. . .there must be a motivation in the group for this kind of work. (Manager in Residence 7)
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support and influenced what sort of activities was best suited within the framework of the intervention. This is a group that you can take for a walk and engage with them in activities. . .maybe if you work in a residence with only autistic persons it will be different. . . (Manager in Residences 11–12) Motivation and interest among the participants were considered important. The respondents mentioned feelings of happiness and satisfaction among the residents to do things together. In one residence, no health course for the residents was conducted, as the residents were not interested according to the interview with the health ambassador. Another important aspect brought up by the respondents was the financial situation of the participants. As many of them had a tight budget, the staff had to find and offer leisure activities that were not too expensive.
Attitude of trustees and relatives The role of trustees and relatives in the implementation was perceived to be modest. Although the involvement of the trustees and relatives was varying, most of them seemed to be positive concerning the health project. This was, according to one manager, despite some of the trustees and relatives not really understanding the intention of the programme. I don’t know – they have such high expectations on the outcome. They considered it foolish in some way, yet they haven’t seen the joy of the participants; this is for their sake and they think it’s quite fun. (Manager in Residences 4–6)
Organisational capacity The implementation of the intervention was influenced by the organisational capacity. Work routines, resources including staffing considerations, work climate and leadership were factors facilitating or hindering project implementation.
Work routines Interest among residents The physical and intellectual abilities of the residents were perceived by staff and managers to affect the © 2015 John Wiley & Sons Ltd, 28, 296–306
The health ambassadors stressed that their main task as staff was to support the residents in their daily lives; and therefore, they had to prioritise everyday activities. Then, if there was any time left, they had the
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opportunity to spend it on health promotion activities within the framework of the intervention. For example, it was sometimes difficult to find time for the study circle sessions. We do a lot of work alone, so during the two hours when we all meet there will be a lot of talk of matters concerning the residents. . .it can be difficult to get the time needed. . .so we extended some meetings to be able to catch up. (Health ambassador in Residence 12) Having flexibility in the work schedule and supportive colleagues seemed to be pre-requisites to participating in the network meetings for health ambassadors. Well-functioning routines for collaboration between staff in neighbouring residences were a facilitating factor when trying to implement different parts of the intervention. In residences where collaboration between residences was missing, it was requested.
Financial and staffing resources Resources important when implementing the intervention included staffing considerations and financial resources. Adequate staffing was important as the staff had to be available to accompany the residents to activities like working-out or going swimming. On the other hand, the work teams could not be too big, as smaller teams facilitated group discussions. A high turnover among the staff as well as among the managers was an impeding factor, especially when starting up the project. In one residence, a high staff turnover led to a situation where the health project was set aside for a while. One of the health ambassadors described a situation where the project had landed in her lap because a colleague and former health ambassadors had quit her job. Time issues, mostly time constraints, were highlighted by the health ambassadors, and one manager brought up limited financial resources and expectation to implement the project within the existing budget. We had to do this project within the confines of the existing budget; at the same time as you are required to make savings. You are supposed to do things that other residences don0 t, and these things take time; you don0 t do them just like that. (Manager in Residences 4–6)
Work climate and leadership The support of an engaged manager and a warm work climate where colleagues share responsibilities were described as important factors contributing to the implementation of the programme. Managers emphasized that health ambassadors were not meant to carry out the project by themselves. The role of the health ambassadors was, in some situations, perceived as being a kind of leader for their colleagues. This appeared to be a challenge, and something that the health ambassadors should have been better prepared for. They end up in an uncomfortable position – kind of leading their colleagues, and not everybody thinks that’s so fun. (Manager in Residences 4–6)
Societal influences Local policies, municipality sanctions and aspects of the physical environment were not addressed in this intervention, but nevertheless, they seemed to be determinants that influenced implementation as judged by the respondents.
Local policies and sanction From the interviews, it was obvious that the opinion and agenda of the politicians in the municipality influenced the motivation of the staff and hence the implementation of the intervention. In one of the municipalities, where the project was sanctioned on a political level, this support seemed to increase the motivation for implementing the programme even though resources were lacking. When we started the project, for a moment I thought it was very depressing. . .but after a while we got support from the municipality [. . .] and the manager engaged in the project (Health ambassador in Residence 4) The respondents brought up aims concerning health activities run by the municipality. Two of the health ambassadors were already engaged in health promotion initiatives initiated by the municipality, which increased the motivation and engagement of the ambassadors.
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Accessibility to a healthy environment Access to parks and green areas in the neighbourhood was perceived to facilitate daily physical activity for both the residents and the staff. The proximity of food stores, coffee shops and gym facilities also affected the implementation of the health intervention, by offering opportunities as well as barriers to implement healthy activities initiated within the intervention. So here we’ve got the grocery store only two minutes away, and we have more of them. . .and cafes and drugstores and hot dog stands. . ..so it’s close to all sorts of things. (Health ambassador in Residence 7) One residence was located close to a gym offering special classes for individuals with intellectual disabilities. Unfortunately, these classes were held during daytime while the residents were at work, leaving them only with options late at night on the other side of the city.
Trends and media messages A general health interest by society and media attention concerning overweight, dietary habits and physical activity were brought up by both groups of respondents. According to them, this resulted in a broad awareness yet sometimes in confusion as well, especially regarding healthy eating and dietary recommendations. One health ambassador mentioned that the work team got into arguments concerning what is a healthy diet, which caused confusion affecting some of the participants negatively. When it comes to ideas concerning diet and health, it is total (sigh). . .here we sometimes can disagree. . . everyone has their own theories on how to lose weight and which diet is good or bad for you. It0 s like the rest you see in the paper – total chaos with the Atkins diet and GI, and all of that. (Health ambassador in Residence 8)
Discussion This study for the first time presents aspects important in the implementation process of a health promotion intervention targeting persons with intellectual disabilities, viewed from the perspectives of health © 2015 John Wiley & Sons Ltd, 28, 296–306
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ambassadors and managers in community residences in a Swedish setting. The main findings imply that supporting motivation for change is needed at all levels during the implementation process. Other findings imply that it is important to have a supportive work environment together with an intervention that fits the needs and values of the residences, as well as a political will expressed by the municipality. The health ambassadors believed that work routines could be improved through the programme, hoped that contributing to a consensus and more professionalized routines. According to Durlak & DuPre (2008), a perceived need is a fundamental requirement when planning to implement a programme and thereby increases the participants’ willingness to do what is expected of them. Compatibility of a programme with the administering organisation’s culture and norms is essential, as it is suggested that providers and organisations implement programmes more effectively if they fit with the organisation’s priorities and existing practices (Durlak & DuPre 2008). When comparing implementation in various settings, one must notice that a community residence differs from other workplaces in some important aspects. Staff is working in someone’s home where they have to respect the autonomy and integrity of their clients; yet at the same time, they should have a professional attitude when supporting them in everyday life. The fact that the intervention involved both staff and residents was perceived as a facilitating factor. The importance of including staff is supported by results of an intervention targeting women with intellectual disabilities in the United States in which the authors conclude that without being part of the experience, the staff cannot support their clients in practicing new skills (Lunsky et al. 2003). Ethical dilemmas and conflicts between providing support and respecting autonomy are well-known challenges in this setting (van Hooren et al. 2002; Spanos et al. 2013), and also in this study, there was a great need to discuss these issues. The inclusion of the external course leader was indeed a success story according to both health ambassadors and managers. They brought in creativity, widening the health concept with culture and relaxation. Compared to mainstream health promotion with an over-reliance on written material, new ways of providing information about health can be of better use to individuals with learning disabilities (Hawkins & Look 2006). The health course for the residents was mainly conducted without the presence of caregivers, which
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meant that the caregivers did not support the participants during the course. This was emphasized as an excellent opportunity for the residents to autonomously take part in and, together with the other course participants, share the experience of a group activity. On the other hand, it made it difficult for the staff to support the participants not knowing what they had learnt. One way to solve this dilemma would be through regular contacts between the course leader and the staff. There was a request for more support from the research team during the initial implementation phase. According to a Swedish report regarding competence and developmental needs among staff in the area of functional impairments, general training is requested by staff themselves, regarding, for example health promotion, nutrition and communication (Carpe 2010). Staff training and additional preparation and involvement of the relatives and trustees to increase their interest for the project might also support the residents and have an impact on health-related conditions in the residences. In a study comparing dietary intake in three different community settings for adults with intellectual disabilities, one conclusion made was to include nutrition training for family members along with the persons that they support (Draheim et al. 2007). To increase the motivation to comply with lifestyle changes, it is important to include caregivers and participants in the planning and delivery of programmes (Jinks et al. 2011). A challenge when addressing this particular population includes developing programmes that take intellectual limitation into account (Heller et al. 2011). Some managers pointed out that the level of intellectual capacity among the residents is crucial and that it determines to what extent and in what way the intervention can be delivered. The impact of intellectual deficits among the participants and lack of understanding of the benefits of lifestyle-related changes has been highlighted in several studies (Hawkins & Look 2006; Spanos et al. 2013). To meet the needs of the target group, it is important that health programmes include adequate support for the staff as well as having flexibility in schedule and content. It is well known that organisational capacity is important for successful programme implementation, and developing adequate capacity among local providers is essential to conducting new programmes (Durlak & DuPre 2008). In this study, having a warm work climate, staff stability and a flexible work schedule
together with an engaged manager were all factors that were reported as important for the implementation. As in many intervention studies, a key issue seemed to be prioritizing and providing the intervention with ‘space’ and resources such as staffing. Comparable to Messent et al. (1999), it was reported that poor staffing levels hindered opportunities for physical activity of the residents. Non-programme factors such as politics, policies and local conditions can influence fidelity or at least explain some variation in implementation. One hindering factor was not having access to a gym or other opportunities for adopting a more active lifestyle in the neighbourhood. Limited options for being physically active in combination with unclear policy guidelines has also been noticed in a study by Messent et al. (1999). The findings indicate that reinforcement from the municipality level is essential to maintain awareness and commitment to this kind of programme. As pointed out in the review by Heller et al. (2011), agency structure can impact involvement in health promotion activities. The findings of this study might, in several aspects, be relevant to other settings, such as schools and work places. Supportive leadership, a positive work climate and a programme meeting perceived needs are implementation factors applicable in a range of settings (Durlak & DuPre 2008). What is specific in this setting, is that the target group has a cognitive disability, which makes it even more difficult to understand long-term consequences of behaviour, and why and how to make healthy choices in everyday life. The staff has to guide the residents through a jungle of choices without encroaching on their autonomy. Although this task is difficult and delicate, the staff might be poorly educated and, in some cases, unmotivated themselves. In situations where there are time constraints and a heavy work load, it is even more important that staff has access to external support, for example by nurses, physiotherapists or dieticians.
Methodological considerations To our knowledge, this is the first study describing aspects important during the implementation process of a universal multicomponent health intervention targeting people with intellectual disabilities. The setting and the intervention are described in detail, and therefore, the results should be transferable to similar contexts. The credibility of the data was increased by comparing the perspectives of both health ambassadors © 2015 John Wiley & Sons Ltd, 28, 296–306
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and managers. By intersubjective agreement in the coding and analysis of the data, trustworthiness of the study was increased (Patton 1990). The first author (ES), working as a public health nutritionist with some experience from this setting, has considerable knowledge about issues concerning healthy diets and challenges in health promotion in community residences, but was not involved in the planning or implementation of this particular intervention. The second author (HB), who was also a project manager, had a different kind of pre-understanding. Prior knowledge may impact the interpretations, but knowledge and insights can help the researcher to understand events and actions better than a researcher without experience (Corbin & Strauss 2008). In this case, pre-understanding was judged useful, yet the potential for bias was kept in mind during interpretation of the data. A strength of this study is that a high proportion of the health ambassadors and managers interviewed represented a strategic sample that enabled variation. The reason for not interviewing the residents in this study was that the focus was on factors affecting the implementation of the programme, rather than the programme itself. However, in another study focusing on the health course for the residents, observations were used to capture what was happening during the group activities (Bergstr€ om et al. 2014). In this way, attention was given to all participants, including those who had difficulties expressing themselves verbally. Given the influences from the municipality as the administrator of the community residences, in the future, one approach could be to address local policies and sanctions, when planning implementation strategies. Implementation research that includes the policy environment could at the same time reveal more information about potential policy barriers and facilitators that influence the health and lives of adults with intellectual disabilities living in community residences.
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can be facilitated by meeting perceived needs, as in this case, when the staff wanted advice in how to balance between promoting healthy behaviour and at the same time supporting autonomy. Another facilitator is a flexible and participatory approach, allowing tailoring of the content to local needs as well as external support, which can act as an inspirational source for both residents and caregivers. An identified barrier was the preparation phase, which was not extensive enough to get all staff on board. Therefore, it is important to prepare and motivate staff well ahead of the intervention. These findings can be of great value in the further development of this or similar health promotion programmes intended for community residences for adults with intellectual disabilities. However, this study has shown that there is room for further improvement of implementation strategies regarding the preparation phase and policy development to support health promotion. Furthermore, the programme should be evaluated during real-life conditions when it is run by the municipalities instead of the research team.
Acknowledgments The authors would like to thank the managers and health ambassadors for their participation. We also thank Dr. Anneli Marttila and Dr. Maria Hagstr€ omer for critically reviewing the manuscript. The study was funded by The Public Health Fund, Stockholm County Council grant no. 0802-0339 and the S€ avstaholm Foundation.
Correspondence Any correspondence should be directed to Elinor Sundblom, Centre for Epidemiology and Community Medicine, Box 1497, Solna 171 29, Sweden (e-mail: [email protected]).
References Conclusion Implementation of a complex programme in the context of group homes for adults with intellectual disabilities poses several challenges, which need to be addressed to reach full effect. To achieve higher fidelity to the programme components, that is the extent to which the intervention is carried out as intended, it is important to support the motivation for change among managers, caregivers and residents. The implementation process © 2015 John Wiley & Sons Ltd, 28, 296–306
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