“EQUIPPING WORKERS IN THE DISABILITY SECTOR WITH THE KNOWLEDGE REGARDING BASIC DISABILITY HEALTHCARE”

“Equipping Disability Support Workers with basic healthcare skills, could potentially save lives”-Melissa Ryan

People with intellectual disability have a poorer health status than the general population. In The Netherlands, support workers play a key role in meeting health support needs of people with intellectual disability.

Research on how people with intellectual disability and their support workers experience the support worker’s role in preventing, identifying, and following up health needs of people with intellectual disability is scarce. To enhance health support of people with intellectual disability it is crucial that we understand how health support is delivered in everyday practice.

We identified three main themes relevant to the health support of people with intellectual disability: 1) dependence on health support, 2) communication practices in health support, and 3) organizational context of health support. Dependence on health support adresses the way in which support workers meet a need that people with intellectual disability cannot meet themselves, and communication practices and organizational context are identified as systems in which health support takes place.

Avoidable differences in health status are related to personal, institutional, or systemic drivers [6, 7]. People with intellectual disability often depend on support persons such as caregivers (e.g., a family member or guardian) or support workers (e.g., employees with direct client contact and/or intermediaries between people with intellectual disability and health professionals) [7, 8].

Research on experiences with support worker’s role in preventing, identifying, and following up health needs of people with intellectual disability is scarce.

In light of the considerable evidence on the crucial role of support workers in the health and healthcare needs of people with intellectual disability, it is important to learn more about how people with intellectual disability and support workers experience the provision of health support in everyday practice.

Adopting a healthy lifestyle and making healthy choices were considered a challenge or sometimes even stressful for people with intellectual disability, because they experience difficulty in overseeing the consequences of (un)healthy choices and behaviour. They depended on others to make choices, such as support worker’s choices about nutrition, physical activity, daily structure, and sleep Support workers struggled to find a balance between dependence and giving autonomy regarding healthy choices.

People with intellectual disability also struggled with their dependence on choices made by support workers. For example, when they would have liked to make different decisions than support workers made for them or when they felt influenced to make other choices.

Knowing a person’s typical behaviour made it easier to notice atypical behaviour that could indicate health problems. This was especially important when contact with health professionals was required. Health professionals who do not know the person with intellectual disability have difficulty reading and interpreting symptoms, thereby potentially delaying the diagnosis of health problems. For example, when support workers consulted a health professional with their client, they felt they were not heard nor taken seriously by the health professionals.

This was related to the discomforting way health professionals approached individuals with intellectual disability, which caused stress to the person and regularly led to unfinished medical examinations. Family members and support workers emphasized the importance of medical professionals listening to help them identify the health needs of a person with intellectual disability.

It was not always possible for health professionals to carry out standardized health assessments on people with intellectual disability. Support workers and family members can help health professionals to adjust assessments by finding creative alternatives because they know what a person with intellectual disability is capable of.

Support workers used the support plan to follow up on health professionals’ advice concerning health problems and health-related goals. Support plans were especially helpful for temporary on-call workers who do not know a client’s habits and agreement.

Sharing personal health information and agreements about a person with intellectual disability was perceived as essential, but also as problematic, given the considerable number of people involved in the care and support of a person with intellectual disability—for example, when essential health information was not shared between family and support workers.

Inconsistency in the deployment of support workers, Such as changes in shifts, the employment of temporary on-call workers, and health professionals who are not familiar with persons with intellectual disability—was indicated as a barrier to providing appropriate health support.

A lack of consistency in support staff could affect the health of people with intellectual disability and the support they received regarding health. Engaging temporary on-call workers complicated the sense of structure for, and relatedness to, people with intellectual disability. In particular, not knowing the person with intellectual disability and not knowing that person’s personalized agreements or habits are experienced as potentially harmful for the health support of people with intellectual disability.

In everyday practice, support workers and people with intellectual disability experience that knowing each other well helps identify health needs, because support workers recognize changes in behaviour and people with intellectual disability share their health needs more easily with someone they know. Familiarity also helps in following up health needs, because support workers know what a person.