Background
Adults with intellectual disabilities have significant health inequalities when compared with the general population [
1]. They have higher rates of mortality [
2,
3], obesity [
4,
5], and experience greater physical and mental health needs [
6,
7]. As well as the implications for individual health, these inequalities translate into a significant challenge for both health and social services [
8].
Increased barriers to physical activity lead the majority of adults with intellectual disabilities to be physically inactive and engage in sedentary behaviour [
9,
10]. They are significantly less active than adults without intellectual disabilities [
11,
12], with one study suggesting individuals with intellectual disabilities walk on average 15 minutes per week [
11].
Walking is widely acknowledged as a feasible activity to engage inactive and sedentary individuals in physical activity [
13]. It requires minimal training, resources or expense [
14] and can be an appropriate activity for adults with a range of intellectual disabilities. It is encouraged as a method of achieving the current physical activity guidelines of 150 minutes of moderate activity per week [
15]. Activity can be accumulated in minimum bouts of 10-minutes or more, making short episodes of walking a feasible way of integrating physical activity into daily life [
15].
One recommended step target for healthy adults is 10,000 steps per day [
16]. Research suggests that adults with a disability or chronic illness should aim for a reduced daily step count of 6500-8500 steps per day, with 3000 of these steps performed at moderate to vigorous intensity [
17]. Despite these recommendations there is limited research exploring the intensity or cadence of walking for adults with intellectual disabilities. Previous studies suggest that adults with intellectual disabilities walk between 6481 and 11,101 steps per day [
11,
18,
19]. This wide range in daily step count may reflect a recruitment bias, where individuals who were already active were more likely to participate in the physical activity interventions [
20].
Walking is the most common form of physical activity in adults with intellectual disabilities [
11]. However, despite its feasibility and potential for health benefits only one study has published findings from a walking intervention [
21]. Moss (2009) delivered a 12-week walking intervention to one hundred adults with intellectual disabilities. Participants walked three times per week around the grounds of the residential institution where they lived, with an increasing duration of 20-30minutes over the course of the 12-week intervention. Participants increased their level of physical activity and reduced their percentage of body fat, demonstrating the potential of walking as a method of eliciting health benefits in adults with intellectual disabilities. The relevance of this one study was limited by the institutional setting, its lack of follow-up and comparison with a control group. There is therefore a research gap to be addressed in the effectiveness of walking interventions for adults with intellectual disabilities.
This paper presents process evaluation findings from the
Walk Well intervention, a randomised controlled trial (RCT) aimed at promoting physical activity via a 12-week evidence based walking progamme. The protocol and main findings of Walk Well have been published elsewhere [
22,
23]. This complementary paper explores the processes and potential mechanisms of impact of the intervention. Process evaluations are one such method, as recommended by the Medical Research Council [
24] and World Health Organisation [
25]. They enable researchers to identify elements of intervention delivery which were effective or ineffective, and under what circumstances [
26]. Publication of process data also informs the development of similar interventions by other researchers or service providers.
Aim
The aim of this process evaluation was to explore the feasibility of a 12-week walking intervention for adults with intellectual disabilities in relation to context, recruitment and retention, reach, implementation and fidelity.
Methods
The study was granted ethical approval from the Scotland A Research Ethics Committee (Reference 13/SS/229) and was registered as a trial with ISRCTN (ref: 50494254). In keeping with the Adults with Incapacity (Scotland) Act 2000, a participant with capacity provided their own informed consent, otherwise consent was provided by the nearest relative or welfare guardian.
The study design and methods have been published in detail as a protocol paper [
22]. A brief outline of the Walk Well intervention is provided here followed by methods used for the process evaluation.
The Walk Well intervention
Walk Well was a single-blind cluster RCT exploring the efficacy of a 12-week community based walking intervention for adults with intellectual disabilities (
n = 102). The intervention consisted of three physical activity consultations (PAC) over a 12-week period with a walking advisor. The PAC method was refined and simplified to focus on four core behaviour change techniques: goal setting; self-monitoring; developing self-efficacy; and mobilising social support [
22]. In addition to these four core elements the walking advisor tailored additional behaviour change techniques to the individual needs of each participant. In line with current physical activity recommendations [
27] the walking advisor supported participants to develop a walking programme which aimed to increase walking by 30-minutes on at least five days per week, by week 12. Walk Well resources, including education booklets, a pedometer and step diary, were provided. The waiting list control group were advised to continue with their daily activity for 12-weeks, following which they were invited to participate in the Walk Well intervention. Data were collected at baseline, 12 and 24-weeks to assess change in: average steps walked per day; time spent in sedentary, light activity or moderate-vigorous intensity activity; Body Mass Index (BMI); waist circumference; and measures of subjective wellbeing [
28‐
30].
Context
The Walk Well study was designed, delivered and managed by a multidisciplinary team experienced in working with adults with intellectual disabilities. Team members included a manager within the local intellectual disability service and researchers experienced in walking interventions and behaviour change techniques. The manager of the local service provision played a key role in the study team, harnessing support from local day centres and provider organisations.
The process evaluation
A process evaluation was conducted based on guidance from Steckler and Linnan [
26], the Medical Research Council [
24], the RE-AIM framework [
31], and the World Health Organisation [
25]. The evaluation was performed by two researchers not directly involved in delivery of the intervention.
Five key elements were explored by the process evaluation, including: the intervention context; recruitment and retention; reach; implementation; and fidelity (defined in Table
1).
Table 1
Definition of the process evaluation outcome measures [
24-
26,
31]
Context | How external factors influence the delivery and functioning of an intervention. |
Recruitment and retention | The factors associated with uptake and ongoing engagement with the intervention. |
Reach | The extent to which the target audience comes into contact with the intervention. |
Implementation | The structures, resources and processes through which delivery is achieved, and the quantity and quality of what is delivered. |
Fidelity | The extent to which the intervention is delivered as conceived. |
These factors were addressed using three methods on an ongoing basis during delivery of the intervention: (i) interviews with a variety of stakeholders; (ii) interviews with participants; and (iii) collation of miscellaneous information on a data input spreadsheet.
(i)
Interviews with stakeholders: Firstly, in-depth semi-structured interviews were undertaken with a range of stakeholders (n = 6). The aim of these interviews was to gain insight from a variety of individuals involved in the study and included: the health professional delivering the intervention; the researcher responsible for delivery and day-to-day management of the intervention; two participants (one with positive study outcomes, one with no significant outcomes); the carer of a participant; and a manager from one of the local authority day centres. These 1-hour face-to-face interviews explored issues related to context, fidelity, and implementation, including the experiences of participating and/or supporting participation in the walking intervention.
(ii)
Interviews with participants: Secondly, relevant process data were extracted from semi-structured interviews and focus groups conducted with 20 participants as part of a separate qualitative aspect of the study [
32]. Interviews were undertaken with participants who did and did not have successful outcomes. Participants were asked to share their attitudes towards physical activity and walking, perceived benefits, drawbacks and impact of increased activity, subjective feelings of wellbeing, and any changes in view over the 12-week intervention. Overall, this qualitative data provided additional insight into the context and implementation of the intervention.
(iii)
Data input spreadsheet: Finally, additional process data were extracted from the Walk Well data input spreadsheet which recorded multiple elements including: attendance, reasons for withdrawal from the study etc. This provided insight regarding recruitment, retention and reach of the intervention.
Analysis
Interviews and focus groups were recorded and transcribed verbatim. Transcripts were analysed using criteria from a combination of process evaluation guidelines [
24‐
26,
31]. This involved extracting key points related to the delivery of the intervention in practice. This data was interpreted in combination with information from the data input spreadsheet to present meaningful and useful information in relation to context, recruitment and retention, reach, implementation and fidelity.
Discussion
This is the first process evaluation of a community-based walking intervention for adults with intellectual disabilities. Although Walk Well was not effective in increasing physical activity or improving health outcomes, our process evaluation has identified several important considerations for future interventions.
Firstly, a multipoint recruitment strategy employing personal one-to-one interaction with potential participants was a feasible and effective method of recruitment for adults with intellectual disabilities. Accessing participants via day centres and service providers recruited a sample representative of the wider adult intellectual disability population [
34]. In addition to gender, age and health status the Walk Well sample also reached vulnerable adults at high risk of health problems i.e. high BMI, physically inactive and sedentary lifestyle. Retention of 80.4 % was similar to that of other 12-week walking studies in the general population [
35] and lifestyle interventions for adults with intellectual disabilities [
36]. Retention may also have been supported by reducing the participant burden of data collection questionnaires. A previous systematic review of recruitment strategies for walking interventions found that publications lacked information on the effectiveness of their recruitment methods making it difficult for researchers to use appropriate methods in future studies [
37]. Our findings address this gap by demonstrating that a multipoint recruitment strategy for community based walking interventions can reach individuals who may benefit from physical activity behaviour change.
Secondly, consistent input and engagement from carers was a key factor in the success of participants’ behaviour change. Walk Well was designed to harness autonomy and motivation of the individuals with intellectual disabilities. However, to effectively engage in walking behaviour the majority of participants required support from family or paid carers. Melville et al [
38] suggests that carers may have limited knowledge of healthy lifestyles and therefore require information and support to effectively support participants. Although social support was a key component of the programme model, and a specific written resource was developed for carers, perhaps a more formal strategy, or specific programme components, were needed to inform day centres, paid carers or family carers on how to effectively support participants in their walking programme. Carers who were not involved in the PAC also received limited feedback from participant’s consultations with the walking advisor. This led to only the most engaged carers exploring participant goals, action plans and resources. Low morale and significant changes in service provision also appeared to negatively impact carer engagement, highlighting the importance of the social and environmental context of community based interventions. In contrast to Walk Well, which focused on engaging participants in their own behaviour change, a study undertaken in Sweden focused on changing the behaviour of paid carers in group care homes [
39]. Their findings demonstrated a significant intervention effect on the physical activity levels of adults with intellectual disabilities (increase of 1203 steps/ day,
p = 0.039). Although the characteristics of the sample and intervention are not directly comparable to Walk Well they do highlight the need for effective methods of engaging carers in the behaviour change process. This is an important consideration for future research.
Thirdly, physical activity consultation had variable success engaging adults with intellectual disabilities in discussion about behaviour change. Consultations worked well for the majority of participants who demonstrated good communication skills (
n = 48), but were challenging for the few individuals with more severe intellectual disabilities (
n = 5). Overall, this was an encouraging finding to be explored with further research. Despite the consultations being generally well received the intervention was not effective. Although there were no significant changes in daily step count or physical activity levels it was challenging to interpret the frequency, duration and intensity of
individual walking bouts. This would be interesting to explore to help assess whether there were any such changes. It is possible that the level of cognition required for effective behaviour change requires an intervention of longer than 12-weeks duration. Twelve week interventions have been effective in improving physical activity levels within the general population [
35,
40], however, adults with intellectual disabilities do experience greater and more complex barriers [
41,
42]. Although Walk Well is ineffective over 12-weeks it is worth exploring longer durations to give time for the walking consultations to address the greater barriers faced by this population. A greater frequency of contact between the walking advisor and participant could also be explored. This was observed by the walking advisor who suggested that participants could benefit from an additional consultation between baseline and 6-weeks to reinforce goal setting and action plans.
Fourthly, pedometers complemented the core components of the physical activity consultation and were a feasible method of motivation, goal setting and self-monitoring. However, not all adults with intellectual disabilities were able to interpret the step count and understand its purpose, reinforcing our finding that adults with intellectual disabilities often require ongoing, and consistent, support to effectively set goals and self-monitor their walking behaviour. The important role of support was also highlighted by disappointment in the lack of provision of a walking group. This disappointment, by both participants and carers, perhaps identifies a need in this population for social support and interaction with peers. Social support and self-efficacy are known to predict physical activity behaviour in individuals with intellectual disability; and in those of adult age support comes from both staff and peers [
42]. Social support can also lead to sustainable behaviour change [
43]. Walking groups are therefore a potential method of promoting walking in this group.
Finally, the complex issue of ‘freedom of choice’ needs careful consideration for adults with intellectual disabilities. One participant reported feeling ‘pestered’ or ‘nagged’ by their day centre staff into joining the study. In line with Good Clinical Practice [
44] no individual should feel pressured to participate in research. Autonomy is one of the four cornerstones of good ethical conduct; along with beneficence, non-maleficence and justice [
45]. However, exercising autonomy and reaching an informed decision requires deliberation, understanding and decisional balance; cognitive skills that some adults with intellectual disabilities may not have [
45]. To make an informed lifestyle choice they need to effectively consider the benefits and risks of positive and negative behaviour [
46]. This led to debate by carers on ‘freedom of choice’ and ‘health improvement’ i.e. Was encouraging individuals who lacked motivation a bad thing? Or was not encouraging individuals, because they lacked motivation, a bad thing? This uncertainty over ‘freedom of choice’ was demonstrated in our study where participants, supported by carers, were sometimes entrenched in poor lifestyle behaviours, for example, eating several boxes of chocolates or using a taxi for a distance of 200m. Previous research in Glasgow has shown that service providers typically organise taxis for people with intellectual disabilities travelling even very short distances [
47]. Findings from previous research and discussion within our study team and with Walk Well carers reflected the complexity of this issue. Opinions were varied including: (i) that participant choice was essential even when it led to long-term unhealthy lifestyle behaviours [
48]; (ii) there was disagreement between individuals regarding use of the term ‘encouraged’ versus ‘pressured to participate’; and (iii) that not encouraging individuals to participate in healthy behaviour, because of their lack of interest or motivation, may in itself be harmful and lacking of care [
49]. Future studies should ensure, as this one certainly aimed to do, that adults with intellectual disabilities are provided with information in a way that allows them to deliberate the benefits and risks of participation (not just in research, but also in new lifestyle behaviours), with emphasis that participation is entirely voluntary and they are free to withdraw from the study at any time without negative impact on their care or personal relationships.
Acknowledgements
Many thanks to the participants, carers, day centres and Glasgow City Council for their contribution to the study; Dr Karen Deakin from the University of Glasgow who conducted the independent process evaluation interviews; and Ms Louise Bleazard who supported participants in her pivotal role as the Walking Advisor.