Perspectives on delivering health promotion for the intellectual disability population

The World Health Organization (WHO) (2015) identifies disability as a global public health issue, a human rights issue and a development priority because, throughout their life course, individuals with disability face widespread barriers in accessing health and related services such as health care, education, employment and social services. To explore the potential role of health promotion in addressing the needs of individuals with intellectual disabilities, it is helpful to frame this discussion about a definition of health promotion. The WHO Ottawa Charter describes health promotion as ‘the process of enabling people to increase control over, and to improve, their health’. It also defines health as a resource for everyday life (WHO, 1986). To maximise support for health, the charter stresses the need for a ‘charter of action’ to ensure health services are inclusive of all people. This can be challenging when considering the health needs of people with disability. This article explores the role of one cohort of staff who daily interact, support and advocate for such individuals, and their understanding of health promotion.

When this study was conducted, COVID-19 had not been heard of. As the article came together, the healthcare environment changed in response and the need for the individuals with intellectual disability to follow good health practices remains essential.

Context/rationale for study

Individuals with intellectual disabilities are a unique heterogeneous population who require specific health improvement strategies to meet their individual needs (Cooper et al, 2004). Although there is no global consensus on a term to describe intellectual disability, the WHO (2015) definition is used in Ireland. Thus describes ‘intellectual disability’ as a:

‘… significantly reduced ability to understand new or complex information and to learn and apply new skills. This results in the inability to cope independently, and begins before adulthood, with a lasting effect on development.’

WHO, 2015

The increasing number of older adults with intellectual disabilities is putting pressure on healthcare services, as this population is affected by health issues typically faced by the ageing population in general (Krahn and Fox, 2014). One systematic review found that people with intellectual disabilities are more likely to die 20 years younger than non-disabled people, due in the main to preventable causes (O'Leary et al, 2018a). This population has higher rates of chronic health conditions related to environmental conditions, genetics, social circumstances, and issues with access to healthcare services (Taggart and Cousins, 2014). The intellectual disability population aged over 65 years has increased significantly (Hourigan et al, 2017), and due to continuous improvements in healthcare delivery a greater number are living with more illnesses, requiring increased ongoing support (Reppermund and Troller, 2016). It is vital that the focus remains on improving the way services are organised and delivered, and on reducing costs, to maximise their ability to respond to growing needs.

This study looked at one cohort of staff – social care managers – who support and advocate for these individuals on a daily basis. This study group was selected because they are often the primary caregivers for individuals with intellectual disability. However, it is acknowledged that nurses and other health professionals play an active role in the health of these individuals. The study explored their role and experiences in the context of health promotion in an intellectual disabilities setting, as well as their understanding of related issues. Three areas were covered in order to:

• Gain an understanding of the social care managers' role and their experiences of health promotion within the intellectual disabilities setting
• Ascertain how social care managers viewed their role in delivering effective health promotion within the intellectual disabilities setting
• Identify possible barriers and enablers to delivering effective health promotion, as perceived by the social care managers, within the intellectual disabilities setting.

Methods

The study used a qualitative descriptive approach, which uses in-depth methods of investigation to collect rich narrative materials by creating a discussion around a phenomenon (Polit and Beck, 2008). Boeije (2010) suggested that, through qualitative research, participants can pass on knowledge and provide their perspective on a range of topics. The assertion that perceptions of health services and their use are embedded in the context of society suggests that qualitative methods are appropriate for exploring the experiences of social care managers within the intellectual disability setting on the issue of health promotion. Participants were required to describe and share their personal experiences, and the more descriptive their responses, the more information became available to the researcher to bring an in-depth understanding to the topic. The philosophical framework used to support this study was Guba and Lincoln (2017), which ensured rigour in the research.

Semi-structured interviews, which offer a flexible yet structured format (Gillham, 2005), were used to gather information and allow participants the opportunity to expand on various points. This format allowed for the exploration of participants' experiences as they arise during the research process. A topic guide was developed from the then prevalent themes identified after undertaking a literature review; the guide was then revised. To aid validity, the topic guide was piloted with a senior clinician with expertise in health promotion within the organisation.

Ethical considerations

Ethical consent for the study was obtained from the Ethics Committees of the third level college and the organisation where the research was carried out.

Participant selection

The participants were six social care managers who were selected using chosen purposive sampling, which is the conscious selection of participants the researcher considers will be most representative and provide the most relevant information (Gray et al, 2016). The organisation, which supports individuals with intellectual disabilities in both residential and day-service settings, employs a total of 46 social care managers. However, a qualitative analysis typically requires a smaller sample size than a quantitative analysis, the goal being attainment of saturation. Six participants were considered sufficient to attain data saturation, which occurs when adding more individuals does not result in additional perspectives or information. Participants were enrolled followed the circulation of a leaflet explaining the study and inviting them to take part.

Data analysis

The aim of analysis in qualitative research is to establish a complete and systemic recording of themes and link them together within categories (Newell and Burnard, 2010). Content analysis is used to analyse text and is well suited to evaluate the multifaceted, essential and sensitive phenomena of nursing (Vaismoradi et al, 2013). The researcher (JA) drew on Braun and Clarke's (2006) six-step framework (Table 1), which may follow a recursive rather than a linear process, moving forward and back many times, if analysing complex data. This framework provided a theoretically and methodologically sound structure for analysis.

• Step 1. Become familiar with the data. This step involves reading and re-reading all transcripts in order to be immersed in the entire body of data before progressing to analysis
• Step 2. Generate initial codes. Data are organised systematically and categorised into small groups of meaningful data (Maguire and Delahunt, 2017)
• Step 3. Search for themes. Initially, ten themes were identified, with some overlapping occurring
• Step 4. Review themes. Themes were refined to determine the key points emerging and to identify any subthemes. If any are identified, how these interact and relate to the main themes needs to be determined
• Step 5. Define themes. This is the final refinement, with three themes and the nine subthemes generated following analysis (Table 2). All themes were descriptive because they represented patterns in the data relevant to the research question (Biggam, 2017)
• Step 6. The final step is to write up the findings. It is essential that the analysis provides a concise, coherent, logical account of the data and results in a description of how the research literature framed the resulting discussions.

Rigour

According to Guba and Lincoln (2017), the principal aim of qualitative research pertains to the truth value of the data and its interpretation. All participants' views must be consistent with how the researcher later represents them. This is because credibility essentially requires the researcher to link the study's findings with reality to demonstrate the truth of the findings (Gray et al, 2016). Participants consented to having the interviews recorded, which were later transcribed verbatim, as well as consenting to the disclosure of all the data collected during the interviews.

Transferability

Transferability pertains to the generalisability of the data obtained and the extent to which findings from the information collected can be transferred and applied in other settings, such as nursing (Gray et al, 2016; Guba and Lincoln, 2017). It is the responsibility of the researcher to provide sufficient descriptive data in the report to determine whether the findings could be applicable in similar contexts.

Authenticity

Guba and Lincoln (2017) argued that authenticity relates to the researcher's ability to depict a range of different realities in a fair and truthful way. Examples from the data are included to provide the reader with an understanding of the feeling, experience, language and context of the lives of the study participants.

Findings

Theme 1. Understanding and experience of health promotion

Subtheme 1a. Awareness of health issues

The ageing of individuals with intellectual disabilities was the most common issue raised. One participant, who felt that promoting healthy ageing was vital, said:

‘The ageing process in general brings about health issues and I think it's really important that … managers and staff know what the relevant issues are for … the age group.’

Participants raised issues around the changes in the mobility of service users. One participant noted that in the case of one service user in their care, their ‘mobility needs are changing’, while another commented that for an ageing service user mobility:

‘… would be reducing; they're getting less confident going into the community due to mobility issues.’

The concerns around ageing reflected the findings in the literature, which suggest that this is an issue within intellectual disabilities, but one that has received little attention (Reppermund and Troller, 2016). The increase in life expectancy in this population is greater than for the general population (Reppermund and Troller 2016) and, although this is reassuring, longevity does carry the burden of age-related disorders such as dementia, mental ill health, diabetes and osteoarthritis.

Another concern identified by participants was mental health. One said: ‘it's not just physical health …’ Participants also stated that identifying ways to maintain good mental health was just as important for staff, as for service users. This perception by the social care managers may arise because the incidence of mental health problems in individuals with intellectual disabilities is much higher than in the general population (Cooray et al, 2016).

Subtheme 1b. Understanding of health promotion

This varied from participant to participant. One said it was ‘something quite broad’, while another described it as part of ‘the whole wellbeing for … the service users’. A third suggested hat health promotion is ‘the holistic approach’, going on to say that it was vital for staff to recognise and manage their own health needs to ensure that they could promote a healthier lifestyle with their clients:

‘In my role as social care leader, it's to promote my own … physical and mental health … and care of my own self.’

Participants expressed some concerns that they had not had any training in health promotion:

‘Social care training isn't the same training as, say, nurses get. It's not specialised, so we don't have the same expertise in supporting all the health needs of the service users.’

The social care managers perceived that they had a role in health promotion, but they were concerned about their lack of training and education on the issue. Nevertheless, some of them had implemented health promotion initiatives in their units, many on their own initiative. All participants agreed that health promotion was a priority for individuals with intellectual disabilities for whom they provided a service. However, one participant recognised that in implementing health promotion there needed to be:

‘… tailored health promotion which recognises the different needs of people with higher dependency needs versus people who are independent.’

This reflects Reppermund and Troller's (2016) contention that individuals with intellectual disabilities are highly heterogeneous, and that one type of approach is unlikely to be successful with everyone. The need for tailored health improvement strategies is supported by Cooper et al (2004).

Subtheme 1c. Available support

This varied, with participants including public health nurses and local pharmacists among those who provided support. In response to a question about access to physiotherapy, occupational and speech therapy, all participants reported that there was limited availability of these services and a perception that they were overstretched. Some participants felt that, because many service users were at a point in their lives when they were experiencing changing needs due to ageing, they would benefit if provision were broadened to provide more health support for this client group. Participants also stressed the need for improved access to specialist services; one reflected on a proposal that had been made for a specific outreach clinic for individuals with intellectual disabilities, but said that 3 years on they were still waiting.

These findings reflect the conclusion of Spanos et al (2013), whose literature review identified a lack of both internal and external appropriate support, poor communication among carers, and the need for accessible resources tailored to aid health promotion activities for individuals with intellectual disabilities.

Subtheme 1d. Health promotion practices

Participants reported a variety of experiences in implementing health promotion approaches. It emerged that much of their experience involved advising on lifestyle choices, such as healthy eating and physical activity, which they perceived as main areas of concern. Participants also promoted the importance of maintaining good health to service users with medical conditions. One respondent gave an example:

‘If somebody has high cholesterol, making sure not only do they take cholesterol tablets but [also that they] try [to] follow a low-fat diet.’

This finding raises a concern about the maintenance of good health in those individuals with intellectual disabilities who take medications. This is a concern because individuals with intellectual disabilities have higher rates of polypharmacy than the general population (O'Dwyer et al, 2016; MCarron et al, 2017). According to O'Dwyer et al (2016), it is vital to be aware of the use of combinations of medications and their side-effects.

Participants seemed to have been less involved in other areas of health promotion, such as national screening programmes. All participants had some awareness of these, in particular of the Cervical Check and Breast Check programmes, however, two acknowledged that this awareness had most likely come through their own life experiences in health care than due to their work.

The above experiences appear to indicate that some health promotion elements are being practised, but that other areas of health promotion are not being addressed. This may indicate that individuals with intellectual disabilities do not access health screening services as much as those without a disability (Awan and Chauhan, 2017). The Health Service Executive (McCarron et al, 2018) suggested that advocacy should include screening and other health checks as part of the care of individuals with intellectual disabilities. Perhaps, as one participant suggested

‘… the success of health promotion approaches might best be measured in the terms of the individual's health outcomes.’

Theme 2. Participants' perceptions of their role in delivering health promotion

Subtheme 2a. Role of social care manager

Participants were asked about their role as managers. Responses included that it is to run the unit efficiently and to oversee day-to-day issues. Some acknowledged that their role encompassed supporting service users, along with staff to enable them, in turn, to support service users.

However, more than half said that their roles had changed over the years and that, as managers, they now had more responsibility to ensure that all documentation is reviewed, updated and meets changing health policy requirements, all of which is time consuming. Participants also spoke of their responsibility for managing staff, with one saying they have to empower and encourage, and motivate staff. They also spoke of the challenges they faced, such as …

‘… ongoing staff vacancies and sick leave, which in turn increases the amount of relief staff you may have working on shift. At times, these vacancies/leave are not replaced, so staff are trying to run a unit safely on a lower staff ratio.’

The impact of this element of their role and the amount of time taken up by administration duties as staff numbers fall due to illness and self-isolation during the pandemic further reduced the time available for health promotion. This reflects findings reported by O'Leary et al (2018b) who identified that staff turnover and inadequate service provision may prevent services meeting the health promotion needs of individuals with intellectual disabilities. According to Beaudet et al (2011), issues such as lack of resources and lack of time, are organisational factors that discourage delivering health promotion.

Subtheme 2b. Competence in health promotion

Some participants perceived that being articulate and knowledgeable about an individual's health was an advantage and usually led to positive experiences with medical staff. It was apparent throughout that participants felt they often had to act as advocates for individuals with intellectual disabilities, representing their voice and speaking up, because they felt this client group did have not the skills or abilities to do so themselves, and consequently depended on others to advocate on their behalf.

This supports the findings of Ali et al (2013), who concluded that individuals with intellectual disabilities rely on healthcare staff to support their health needs and to advocate for their individual needs. However, some participants reported feeling overwhelmed when interacting on a client's behalf with medical staff because they felt they lacked sufficient knowledge and understanding of the health of specific individuals, feeling at times that they were unable to adequately question clinical decisions. Participants said that even having some basic knowledge and skills in health promotion would enable them to support their clients better. The researcher notes that skills are acquired with both life and practice experience, so it must be recognised that each social care manager will have varying experiences and need support from others in areas in which they have less experience.

Subtheme 2c. Organisational culture

O'Leary et al (2018b) found that many professionals had the perception that they were working within an organisational culture that had a limited health promotion focus. When the study participants were asked whether the organisation was supportive of health promotion, the general feeling was that there was support, but that more support would be helpful. None of the participants were aware of any specific health promotion policies the organisation had in place.

One participants had noted an email mentioning a health promotion committee, but had not proceeded to look into this further. Two participants referred to a health promotion programme and mental health wellbeing days advocated by the organisation. They saw this as a positive step in encouraging health promotion within the organisation. They also referred to events such as ‘lunchtime walks’, which were also seen as positive but not always accessible for individuals with complex needs. However, one participant suggested that improved planning of such events could allow time for managers to plan rosters to ensure adequate staff could be on duty to support such events and enable service users to take part.

It emerged from the study that, while health promotion practices were discussed within staff teams, participants felt these were not widely discussed across the organisation.

Theme 3. Promoting health promotion practice

Subtheme 3a. Enablers

Organisation-led initiatives such as the mental health wellbeing days and the lunchtime walks were perceived positively by participants. These are examples of enablers, which cascade from the top down. Another key enabler that emerged from the study was having a positive experience with medical staff. One example given was about a positive outpatient experience for an individual with intellectual disabilities who was treated with dignity and respect, by being allowed sufficient time and privacy. However, none of the other participants reported similar oupatient experiences.

Another enabler described by participants was access to nursing staff, with particular mention made of those recently appointed to clinical nurse specialist posts, in one case this was an acute liaison nurse for hospital admissions. Participants felt that this access offered them positive support because it not only made hospital stays more positive for patients, but also disseminated more knowledge to staff teams, particularly in-hospital teams, in managing this client group's health needs. However, they felt it would be valuable to have this service expanded.

Subtheme 3b. Barriers

Examples given by participants highlighted a perception that individuals with in most related to health promotion are included. They spoke of the strain placed on both staff and the individual with intellectual disabilities due to the way generic services, such as routine outpatient clinics, were organised, which is concerning. Burke et al (2014) noted that this client group can be left waiting an unnecessary amount of time in waiting areas, during which they will often become anxious and frustrated; they may then start to exhibit behaviours that draw attention to their disability. Study participants suggested that, at times, it appeared that individuals with intellectual disabilities were not seen as a priority.

Many of the barriers identified in this study echo those reported in the literature (Thomas and Kerr, 2011; WHO, 2015; O'Leary et al, 2018b).

Discussion

The study set out to gain an overview of social care managers' understanding and experiences of health promotion within the intellectual disabilities setting, to determine how they viewed health promotion with this population within their role, as well as to identify barriers and enablers to delivering effective health promotion.

It emerged that participants were aware of changing health needs for individuals with intellectual disabilities, which echo previous findings reported in the literature, in particular in relation to ageing (Burke et al 2014; Reppermund and Troller, 2016) and mental health (Cooray et al, 2016). Health promotion was recognised as a priority for this population, and social care managers had implemented relevant initiatives in their units. They perceived they had a role in health promotion, but they were concerned about their lack of training and education on the issue. There was particular mention of healthy lifestyle choices and physical activity which were also highlighted in the literature (Burke et al et al, 2014; Reppermund and Troller, 2016), and a recognition of the need for programmes tailored to individual client needs as previously identified by Cooper et al (2004). Some support services are available, but there is a lack of appropriate options for this client population (Spanos et al, 2013).

Some enablers were identified, for example, top-down organisational initiatives, such as lunchtime walks, and positive experiences of health care for some individuals. However, many barriers were also identified, similar to those reported in the literature (Thomas and Kerr, 2011; WHO, 2015; O'Leary et al, 2018b).

Supporting a healthy lifestyle

Throughout all the interviews, participants felt that promoting a healthy lifestyle was a key attribute of caring for individuals with intellectual disabilities and an important aspect of their work. However, they felt that they had had limited preparation for this part of their role. It was evident that physical activity and a healthy diet are key aspects of supporting a healthy lifestyle. Participants observed that fitness interventions, such as lunchtime walks, had a positive impact on the weight and fitness status of this population. Some, however, reported that, although they saw the positive effect of their interventions on the number of steps individuals with intellectual disabilities could walk after a short period following a regular simple exercise regimen, they did not observe changes in weight loss. However, it was evident that individuals were enjoying the activities, helping to improve their overall quality of life. It was clear that there is a need for social care managers to have more preparation and training for their role in health promotion.

Being person centred

It became clear throughout the study that caring for an individual with intellectual disabilities has its challenges, and that care service managers may at times have to resolve ethical dilemmas. For example, staff are required to balance the need to encourage healthy eating, on the one hand, with, on the other, respecting the independent decisions of individuals with intellectual disabilities.

More than half the participants reported that they were actively trying to support individuals with intellectual disabilities to manage their weight, yet 77% said that there was little input from doctors, nurses or other health professionals to support them to lose, maintain or gain weight. This is surprising, given the significant issue of overweight and obesity within this population (Department of Health and Children, 2005; National Disability Authority, 2018). In Ireland, there is currently no policy setting out the nutritional needs of individuals with intellectual disabilities. However, obesity remains a major concern, in spite the fact that the Healthy Ireland Framework (Department of Health, 2013) targets the country's population as a whole, and states that all health services should recognise that maintenance of a healthy weight is a crucial health issue. There is certainly room for implementation of this policy within intellectual disability services (Department of Health, 2019).

As indicated by the study findings, participants recognised health promotion as a priority for individuals with intellectual disabilities (WHO, 2015). Although they perceived that they had a role in health promotion, they were concerned about their lack of training and education on the issue. Nevertheless, many of them had implemented health promotion initiatives in their units, many on their own initiative. There was a focus on changing the health behaviours of individuals with intellectual disability, with a particular emphasis on healthy lifestyle choices and physical activity as highlighted in the literature (Burke et al, 2014; Reppermund and Toller, 2016; Brown, 2018). There was also recognition of a need for programmes tailored to individuals' needs as suggested by Cooper et al (2004).

Some support for health promotion is available to social care managers but, as highlighted by Spanos et al (2013), there is a scarcity of appropriate options. The study found that there was an organisational culture supporting some health promotion initiatives, although this was limited and needs to be strengthened and developed. Enablers of health promotion were identified, such as the top-down organisational initiatives and the positive experiences with health care services, but these were inadequate and need further development. The findings may reflect those of Roll (2018), who reported an overall lack of knowledge on how to conceptualise and implement health promotion for individuals with intellectual disabilities.

Many barriers were identified. It was perceived that health services failed to accommodate adequately the needs of individuals with intellectual disabilities, and that in some cases health professionals' skills were seen as inadequate.

While both the literature and the study findings acknowledge the existing knowledge, skills, expertise and commitment of staff in supporting individuals with intellectual disabilities, the changing demographics offer an opportunity to plan for the future and create a responsive plan to support the health and wellbeing needs of this population.

While the findings of this study may not represent the learning disability population overall they highlight the prevalence of inequalities and the vulnerability of this group, identifying that they often rely on others to meet their needs. This highlights the necessity for support and education to ensure carers are providing the best possible care. The findings of this study can help raise awareness of some of the issues faced by individuals with intellectual disabilities.

Many of the study findings are in line with previous research, suggesting that individuals with intellectual disability continue to experience barriers in accessing health care, in spite of initiatives to improve access. Throughout the course of the study, there were examples of inadequate treatment, diagnostic overshadowing (ie focusing on the intellectual disability rather than physical care, resulting in delayed action on the physical aspects of care), and negative staff attitudes towards individuals, suggesting the need for more robust staff training on providing care for people with intellectual disability.

As is evident from the findings of this study and the literature, there is lack of a strong health promotion ethos in many organisations caring for individuals with intellectual disabilities. Barriers, such as the lack of access to sufficient education by health providers, have been clearly identified. The lack of a robust organisational focus on health promotion can also be a barrier, which the presence of a strong health promotion culture can help reduce.

As the healthcare environment changes, it is clear that it will be vital to ensure that health promotion is regarded as an essential element of intellectual disability care.

Limitations of the study

The study has some limitations. It took place in one organisation with a small sample of social care mangers. Therefore, it may not reflect the views of managers who did not participate. In addition, the study did not explore the experiences and understanding of other healthcare workers or staff. The study was also was constrained by time and space requirements.

Conclusion

In advance of the study, a search of the literature revealed a lack of previous research on health promotion in social care settings for individuals with intellectual disability. This small-scale study contributes to the body of work by beginning a process to develop an understanding of how social care managers can implement health promotion for this population in their daily practice. Further research is recommended to develop a more in-depth understanding of the role of social care managers, which should draw on a larger sample and include social care managers across a range of organisations. Research is also recommended to ascertain how a broader range of staff, such as nurses, social care workers and direct care workers, envisage the concept of health promotion in this population.

Health promotion has gained increased recognition within Ireland. This is reflected in the study, the literature and in government publications on health promotion, reflecting the importance of the issue and the need to enable individuals with intellectual disability to have control over their own health. The literature suggested that health promotion is a broad area that can mean different things to different people – variations that are frequently attributed to the differing ways in how health promotion is understood, practised and valued. Health promotion needs to be considered across all areas of health care and, with ongoing research on the issue, it is hopeful that standards of practice will continue to improve and develop to ensure adequate health care and support is provided to all.

KEY POINTS

• Health promotion is recognised as essential for both people with intellectual disability and those working in this area of care
• There is limited training in health promotion for health professionals working in the field, as highlighted by participants in the study
• Despite the lack of relevant knowledge, those working in the field try to introduce and implement health promotion practices for people with intellectual disabilities

CPD reflective questions

• Can you think of the health promotion activities offered in your area of practice?
• If there are currently no activities, consider how you could you introduce health promotion practices into every day activities?
• Reflect on what are the best health promotion activities for your client group and how could these be improved or introduced in your area of practice?
• What are the biggest barriers to health promotion and how can they be addressed in your area of practice?