Taking the dynamics of everyday life into account is important for health behavior change. Surveys were conducted to gain insight into available health promoting physical activity and nutrition initiatives in the everyday life of people with intellectual disability (ID). Researchers considered characteristics of the initiatives and the attention they give to resources and hindering factors of healthy living for people with ID. The 47 initiatives mostly focused on physical activity and consisted of regularly organized, stand-alone activities. Care professionals, rather than health professionals, were involved. Organizational resources and hindering factors received relatively little attention. Health promotion for people with ID could benefit from incorporating health behavior into routines of daily living, focusing more attention on organizational resources, and improving the collaboration between health professionals and care professionals.
To support healthy lifestyles, it is important to take the dynamics of everyday life into account (Van Woerkum & Bouwman, 2014). For people with intellectual disability (ID), everyday life is largely influenced by service providers (Ras et al., 2013). However, studies on health promotion for people with ID provide little insight into lifestyle support in everyday life (Steenbergen et al., 2017). The studies focus primarily on interventions in program settings, i.e., interventions that are provided as separate programs participants can attend, sometimes organized as temporary projects (Naaldenberg et al., 2013). Knowledge of factors that facilitate or hinder health promotion for people with ID helps to prevent lifestyle related health problems and to improve quality of life (de Winter et al., 2012; Straetmans et al., 2007. These factors need to be taken into account when developing programs to facilitate healthy living (Helleret et al., 2011).
The socio-ecological model (Rimer & Glanz, 2005) can be useful as a theory-based framework to understand the multifaceted and interrelated factors influencing health behavior for people with ID. Five levels are distinguished: (1) the individual level, including resources and factors such as motivation, cognitive functioning, and physical abilities (Bergstrom et al., 2014; Caton et al., 2012); (2) the interpersonal level, addressing support from the social environment (Bergstrom et al., 2014); (3) the organizational level, including time, money, and prerequisites (Sundblom et al., 2015); (4) the physical environment and community level, with available facilities and transportation options, stress, and safety (Brooker et al., 2015, Caton et al., 2012, Kuijken, et al., 2016); and (5) the public policy level, including health policies and insurance systems (Sundblom et al., 2015).
Health promotion for people with ID is becoming increasingly important to service providers and the topic gains interest among policymakers. As a result, many small scale and ad hoc initiatives are organized in care settings. Although these small scale initiatives are an important part of the everyday life of people with ID and a significant source of practical knowledge, these initiatives are often not part of health promoting interventions and evaluations, and not visible in scientific or white paper publications. To gain more insight into ways that people with ID are supported to live healthfully in their everyday life settings and how this can be improved, this study aimed to explore the myriad of health promoting initiatives delivered by service providers. The following research questions needed to be answered:
Which everyday health promoting initiatives, focusing on physical activity and nutrition, are available to people with ID receiving support from Dutch service providers?
What are the characteristics of these initiatives, as well as the extent to which these initiatives take into account the context with known resources and hindering factors of healthy living?
This study was performed in the Netherlands within settings in which service providers working with people with ID provided ambulatory support (intermittent support based on a needs assessment given to people who live (semi-) independently, day support (weekly support provided during scheduled daytime hours, including recreational or (un)paid labor activities) and 24-hour support in small-scale accommodations. Recent national government regulations lead to increasingly more people with ID living semi-independently in the community. In the Netherlands, people with varying levels of ID are mainly supported by daily care professionals who are trained in social work and/or assistant nursing. Tasks include assisting people with ID in personal, daily, social, and health care (Heutmekers et al., 2016).
The first selection focused on a convenient representative sample of service providers who provide support to approximately 2,000 people with ID in three different regions of the Netherlands. Next, a representative sample was taken of professionals working in these settings and with the initiatives under research. Given the different organizational structures of the included service providers, snowball sampling was chosen as the appropriate method to select all potentially relevant respondents in this second step. Managers of the service providers referred employees who could provide information on specific initiatives that (1) were run within the past three years, and (2) focused on nutrition, physical activity or both. The initiatives were the unit of analysis in this study. Respondents were asked to focus on one or more initiatives provided to people with ID who received support from the service provider for whom the respondents worked.
A structured questionnaire with pre-defined answers was used to gain information on the initiatives. The questionnaire consisted of two parts (Table 1). Part I was based on general health promotion literature, including criteria for well-substantiated and effective interventions (Centrum Gezond Leven [Healthy Living Center], 2013), and steps in adoption, implementation, sustainability, and evaluation of a program (Bartholomew et al., 2011). Example questions of Part I are “What is the focus of the initiative?” (answer options: physical activity /nutrition / both) and “Who executes the activities that are part of the initiative?” (answer options: family / friend / care professionals providing support in residential settings / care professionals providing support in day activity settings / personal care professional / dietician / physiotherapist / remedial therapist / sports instructor / volunteer / other / I don't know).
Part II was based on literature describing the resources and impeding factors of healthy living for people with ID (Bergstrom et al., 2014; Brooker et al., 2015; Caton et al., 2012; Kuijken et al., 2016; Sundblom et al., 2015) and the socio-ecological model (Rimer & Glanz, 2005). The public policy level of the socio-ecological model was not included in this study, since the focus of this study was if and how service providers for people with ID provide health promoting initiatives. This could have been by working together with public initiatives. Public policy is a more overarching level, in which the facilitating or hindering factors influence the instigation of initiatives rather than the execution of provided initiatives within service providers.
The questions of Part II were measured on a 6-point summated rating scale, 0 being strongly disagree and 5 strongly agree (Jamieson, 2004). An even scale was chosen to avoid neutral responses and an option for I don't know was included to avoid guessing. Examples of questions in Part II include, “To what extent does the initiative take into account physical disabilities of participants of the initiative?” and “Do the executers of the initiative have enough knowledge and skills to execute the initiative?” A pilot survey was conducted among three employees of the service providers to check for possible misinterpretation of the questions. As this resulted in only minor amendments, it was decided to include the rich information of this pilot in the analyses.
Telephone surveys among employees were used to collect data between March and June 2015. During each telephone conversation the researcher (KV) entered the answers to the survey questions into an online survey application (Lime-Survey). The conversation was audio recorded for future reference and validation of the survey answers, after which the audiotapes were destroyed. To increase validity, clarification was allowed and available documentation of initiatives was cross-checked with survey answers.
Prior to participation in the telephone survey, respondents were informed about the aim of the study, voluntary participation, estimation of the length of the telephone conversation, and anonymity of respondents. Informed verbal consent was obtained from all respondents and recorded. Only the answers to the structured questions were recorded; personal identifying information of the respondent was not recorded. This study gathered information and opinions of professionals on health promoting initiatives and did not include sensitive, personal data regarding people. Nor did this study influence respondents. This study was conducted in conformance with the Declaration of Helsinki and did not need ethical approval in The Netherlands as confirmed by the accredited Medical Research Ethics Committee (MREC) (Registration Number 2018-4977).
Descriptive statistics (SPSS version 20.0) were used to quantitatively describe the answers to the questions of the survey. Answers of the open-ended questions (Part I) were quantified based on commonalities in the answers. To provide insight into the extent to which initiatives take into account known resources and hindering factors of healthy living for people with ID, median and mode were calculated for the answers to the questions of Part II.
In total, 82 employees responded, of which 44 (12 managers / policymakers, 14 health professionals and 18 care professionals) were able to provide information on one or more initiatives that met the inclusion criteria. Health professionals who responded were movement teachers (+ two interns), physiotherapists, dieticians, an occupational therapist, and a behavioral scientist). These health professionals were active in the initiatives in addition to their usual professional activities. Figure 1 provides an outline of the response, and inclusion and exclusion of initiatives. Non-response was very low and data collection was extended until all potential respondents were contacted and no new initiatives were mentioned.
Characteristics of the Initiatives
Initiatives predominantly focused on physical activity (n = 33); only a few focused on nutrition (n = 5) or both (n = 9). Aims of the initiatives and the means to accomplish these aims were often discussed interchangeably by respondents. Initiatives could have multiple aims, of which stimulating physical activity was mentioned most often, followed by social contact.
The top five most mentioned activities were all sports-related: (1) sport and game activities, (2) group sports, and individual sports like (3) swimming, (4) working out in the gym, and (5) horseback riding. Most initiatives consisted of stand-alone activities and were organized on a regular basis (n = 39), such as a weekly walking group.
The majority of the initiatives (n = 37) was offered by the service providers, while six were organized by other organizations, such as the municipality. Four initiatives mentioned collaboration between a service provider and another organization in the development and/or implementation of the initiative.
Daily care professionals and trainees/volunteers were most often mentioned as implementers of the initiatives (in 37 and 18 initiatives respectively), while health professionals (e.g., physiotherapists, sport instructors, movement teachers, dieticians) were mentioned 22 times. Invitations to participate came from daily care professionals (n = 33) through personal contact. Newsletters or emails were also used. For 15 initiatives, mainly physical activities at external venues such as the gym, swimming pool or sports club, the participants needed to pay in order to participate.
Active participation of people with ID in the development of the initiatives was described 22 times. The level of participation varied between considering wishes and needs at the start of the developmental phase, to giving feedback and/or deciding on the proposition of activities. Sometimes people with ID assisted in further development of the initiative.
The initiatives primarily sought to include individuals (n = 30). Eight initiatives aimed at existing groups of people with ID (e.g., residential group homes), four aimed at both individuals and groups, and five at the social environment of people with ID (e.g., family, peers, volunteers, and care professionals). Mostly tailored support (n = 29) or some support (n = 28) was needed to be able to participate; 14 initiatives could be used without support. Next to initiatives developed for people receiving 24-hour care (n = 43), initiatives could be used by people who lived independently with ambulatory support (n = 14), lived with family (n = 10) or lived independently without support (n = 6).
On average, 49 people participated in an initiative (range 2–250). A session usually lasted between 60 to 90 minutes (n = 23), but varied from 15 minutes to more than 90 minutes. In most initiatives, people participated once a week (n = 25).
Table 2 shows the extent to which the initiatives gave attention to resources and hindering factors of healthy living. The N in Table 2 varies due to respondents choosing the “I don't know.” option. For two factors, financial situation on the individual level and transport options on the physical environment and community level, more than 70% of the respondents chose the “I don't know.” option. These factors were not included in the analysis.
Overall, respondents reported that the initiatives gave attention to most factors as they scored a 4 or 5 for the majority of them. Looking at each level separately, most attention is given to individual and interpersonal factors. The organizational and environmental level scored somewhat lower. The individual factors level of ID, physical disabilities, support needed to participate, and preference all scored a 5. As for type of support given by caregivers, friends, and family (interpersonal level) emotional and instrumental support stood out positively. Least attention was given to the participant's knowledge of healthy living (individual level), time and money provided by the organization, and information for employees on healthy living and health promoting initiatives (both organizational level). E xisting norms and values in the living environment (physical environment and community level) also scored relatively low. When differentiating for level of ID of the targeted audience, the more severe the level of ID, the less attention was given to knowledge and preference of the participant.
Most of the 47 identified initiatives were individually oriented and consisted of stand-alone activities organized on a regular basis. This shows a lack of attention for healthy behavior in the everyday life of people with ID, which is in line with Steenbergen et al. (2017). Taking an everyday life perspective in health promotion and incorporating health behavior into routines of daily living, while including the social environment of people with ID, may be much more effective (Van Woerkum & Bouwman, 2014).
The focus of the majority of the initiatives in this study was on increasing physical activity. Previous research on health promotion for people with ID found a substantial focus on physical activity as well (Naaldenberg et al., 2013; Steenbergen et al., 2017; Willems et al., 2017). However, these studies also found many initiatives focused on combining physical activity and healthy nutrition. An explanation for the significant focus on physical activity in the initiatives in our study could be that many initiatives in our study were organized bottom-up as stand-alone activities, while initiatives focused at nutrition need a change in financial and organizational routines, requiring a more top-down approach.
Individual factors, such as disabilities and support needs, received much attention in the organization of the initiatives which helped to increase the accessibility (Kuijken et al., 2016). The knowledge of healthy living of people with ID themselves, however, received little attention. People at the mid- to –upper end of the ID spectrum do have knowledge about healthy living, but have trouble translating this knowledge into behavior; therefore, they need others to support them (Kuijken et al., 2016). Customizing the initiative to the participant's level of knowledge may enable them to apply the new health-related information to their everyday lives.
Organizational resources and hindering factors, such as time and money provided by the organizations, received little attention, which impeded profound embedment within organizational structures and routines. The frequent use of trainees and volunteers to execute initiatives might have impeded the sustainability of the initiatives as well, since they often work in an organization on a temporary basis. In addition, daily care professionals were often involved, while support from health professionals in the implementation of initiatives was lacking. Though daily care professionals are in a good position to support people with ID in everyday life, their knowledge and skills regarding the promotion of healthy behavior are limited (Cardol et al., 2012; Leser et al., 2018; Sundblom et al., 2015). Health professionals do have the necessary knowledge and skills to motivate people and support good dietary habits (Hilgenkamp, 2012; Van Riper & Wallace, 2010). This implies that health professionals should be more involved in health promotion efforts for people with ID (Van Schijndel-Speet, Evenhuis, Van Wijck, Empelen, & Echteld, 2014), however, our study indicates that health professionals are only marginally involved in the prevention of health problems through health promotion.
For people with ID, everyday life in residential and day activity settings often takes place in groups (Ras et al., 2013). Therefore, more attention to existing norms and values among peers and professionals is important (Van Woerkum & Bouwman, 2014). Besides individually oriented activities, lifestyle interventions at the group level could be more effective, as they benefit from modelling and social support (Heller et al., 2014; Van Schijndel-Speet, M., Evenhuis, H. M., van Wijck, R., & Echteld, 2014).
Our study is one of the first studies providing insight into the characteristics of current everyday life health promotion for people with ID. Since the service providers involved in our study provided different types of support to people with ID in three different regions of the Netherlands, we think the study included a representative sample of (1) employees in support of people with ID and (2) health promoting initiatives for people with ID in the Netherlands. It is, however, important to recognize that our findings are based on the organization and use of health promotion initiatives by Dutch service providers. The participants were enthusiastic about the initiatives which might have led to a positive bias. However, their close involvement in the initiatives resulted in rich information. Validity was enhanced by using telephone surveys to minimize interviewer effects (Phellas et al., 2011); allowing clarification (Jones et al., 2013), and data triangulation by cross checking with available documentation.
Health promotion for people with ID could benefit from an integrated focus on both physical activity and nutrition, with an everyday life perspective taken by all stakeholders involved. At the organizational level, service providers could benefit from a mission-statement on creating a supportive environment for healthy behavior, which includes incorporating healthy behavior in routines of daily living and paying more attention to existing norms and values of people with ID and their social environment. To ensure sustainable health promotion in everyday life – i.e., supporting people with ID to become more active, improve their diet, and maintain these changes in the long term – resources on the organizational level could be better utilized in initiatives and greater involvement of health professionals for collaboration with care professionals is needed.
This manuscript was orally presented at the 15th IASSIDD World Congress Global, Partnerships: Enhancing Research, Policy and Practice, Melbourne, 15–19 August 2016. This study was funded by academic collaborative ‘Stronger on your own feet' in which the Radboud university medical center collaborates with nine service providers for people with ID. The authors have no conflicts of interest to declare. The authors are very grateful to all respondents for their help in obtaining an overview of available health promoting initiatives.