Within the framework of project “Equal Treatment”, and along with the literature review, needs analysis was implemented on the three key stakeholders, namely the people with intellectual disabilities, healthcare staff and professional supporters. The goal of the needs analysis was to secure the inclusion of each beneficiary in the procedure, as well as that educational material will reflect their actual needs. For the people with intellectual disabilities, qualitative study was conducted through interviews. As for the other two groups, questionnaires were disseminated, collected and statistically analyzed.
People with mild and moderate intellectual disability
Beginning with our first target group, people with intellectual disabilities, a separate study was conducted with the aim of exploring their experiences and needs when accessing the secondary and tertiary healthcare system. The interviews were conducted in person, by professionals on intellectual disability to 118 adults with mild or moderate intellectual disability from Greece, Spain, Lithuania, Finland. The three main pillars of questions were about Accessibility, Fellings from personal experience in hospitals, and Health Literacy. Gender representation and diversity have been a key requirement that has been successfully met.
In total, as core barriers in communication between patients with intellectual disabilities of the study and healthcare staff reported by all study’s participants, as well as basic reasons for their relevant dissatisfaction were: showing indifference in patients’ needs, opinion and feeling, as well as prohibiting their free expression either by not addressing them or by interrupting them, causing feelings of disregard, irritation and unsatisfaction, use of medical terminology, displaying indecisiveness together with other colleagues, thus confusing the patient, limited time dedicated to the patient, strictness and display of negative feelings (anger and worry) by healthcare staff, rejection of patients’ needs, feelings and viewpoint, as a deterring factor for future self-advocacy, fear of medical procedures themselves, especially injections (not directly correlated to interaction).
Study’s participants’ most reported suggestions for the improvement of their collaboration with healthcare staff were: the need for mutual communication, avoiding merely counting on patient’s initiative, non-discrimination and equal treatment of all patients, use of short and plain answers, short-paced speech, and native language, use of images, as well as avoid using medical terminology, shortening the instructions and providing easy language versions, especially for the names of the medication, which he/she described as difficult, provision of “space” to the patient to express oneself, with the supporter interfering only when needed, to avoid misunderstandings, need for receiving effectively articulated and clear explanations for their condition, the procedures and the instructions.
Lastly, in accordance with the previous proposals of the interviewees, what emerged after the description of their own experience was that the main facilitators of interacting with healthcare staff were: actively showing interest in patients’ own feelings and perceptions, through, for instance, carefully listening and asking questions, which was welcomed by the informants in all cases and enhanced their overall experience in the hospital, allowing the patient to express himself/herself as much as he/she needs, explaining their health condition and what is upcoming in a clear way (e.g., how the tests are conducted), which was always represented in a positive way, making people with intellectual disabilities of the study feel comfortable and relaxed, written provision of instructions and short verbal answers, prioritization of the people with intellectual disabilities as the first subject of communication and interaction with the supporter collaboratively with the patient and/or only if necessary, the friendly, calm and supportive behaviour of the healthcare professionals.
Healthcare staff
The second target group of our project is healthcare professionals, meaning doctors, nurses, paramedics, and administrative staff, working in the secondary and tertiary healthcare system. A survey was designed to investigate some of their possible difficulties when providing services to people with mild or moderate intellectual disabilities. It was distributed to and completed by professionals in digital form, via google forms. We have received 179 answers from hospitals from Lithuania, Finland, and Greece. Representation of different expertise has been the key requirement that has been successfully met. The main pillars of questions were about Experience in treating people with intellectual disability, Interaction issues while conducting physical examinations and paraclinical tests, and Understanding of people with intellectual disabilities when given instructions. Moreover, educational topics were taken into consideration, to help formulate healthcare staff’s preferences later on in the project. In this context, questionnaires were distributed to and completed by them via google forms.
According to our findings, communication and interaction with patients with intellectual disabilities seems to be a challenge for healthcare professionals in secondary and tertiary healthcare facilities, in view of the particular characteristics of these patients, as well as of the skills required to approach them. Yet some variations emerged in relation to the intensity of these issues, as well as the content of them and their distribution among different sample categories.
First and foremost, communication issues per se were considered to be the most difficult obstacle during clinical and paraclinical examinations. In short, what would further improve interacting with people with intellectual disabilities is linguistic adaptations (plain language, use of images and visual examples, and written provision of information) and the use of tools not only to communicate with the patient but also to understand his/her situation. More interpersonal and behavioural improvements were proposed too, such as the need for healthcare professionals to be calmer and more patient than usual, devoting more time and providing further explanations, in order to reassure the patient and gain his/her trust.
Secondly, with regards to other actors involved in the interaction between healthcare staff and patients with intellectual disabilities, supporters (both formal/professional and informal/family members) appeared to be the primary facilitators. Furthermore, in open-ended questions informal supporters were described as key in creating a peaceful environment for the patient with intellectual disability during examinations, and formal-trained supporters as vital for enhancing data collection procedures and interaction between healthcare professionals and people with intellectual disabilities.
A third observation made from our data is the importance of preparedness. In detail, availability of patients’ medical history and prior to their visit notification that the upcoming patient has intellectual disability accumulated the highest scores as ways for enhancing interaction with them, compared to further training of healthcare staff and time availability. Both preferences may fit under the general term of “preparedness” viewed as a need and could be interpreted under the significant adaptations needed by healthcare staff when treating a patient with intellectual disability. Moreover, preparedness emerged as a theme in the systemic level. Finally, preparedness is highly correlated with education of the healthcare staff, even though further training to support interaction and communication with people with intellectual disabilities for optimizing providing services to them was not the most preferred option of the respondents. Education was also frequently reported in open-ended questions and depicted as vital for their relationship with patients with intellectual disabilities. Concluding, understanding intellectual disability in general, meaning people’s with intellectual disabilities needs and particularities, and its unique expression in each individual case is regarded as a genuine need by and for the healthcare staff in the hospitals and is viewed as a major opportunity for the more effective treatment of patients with intellectual disabilities.
Professional supporters
The third and last target group of the project is the professional supporters of people with mild or moderate intellectual disabilities. A survey was designed to investigate some of the difficulties they may face when trying to access the secondary and tertiary healthcare system together with people with intellectual disabilities, as well as during accompanying them to the hospital. Their views regarding their own and people’s with intellectual disabilities interaction along with their needs and preferences in further training on these issues was examined to include them effectively in our e-modules later in the project. In this context, questionnaires were distributed to and completed by them via google forms. We gathered 125 anwers from professional supporters from Lithuania, Spain, and Greece. The main pillars of questions were Assessing accessibility in national hospitals, Experience during secondary and tertiary health care services, and Assessing interaction and communication of a patiend with intellectual disability with healthcare staff. Representation of different expertise has been the key requirement that has been successfully met.
The views of professional supporters of people with intellectual disabilities regarding the secondary and tertiary healthcare system of their country may have brought to the surface that these systems are not designed for everyone. In detail, access to and orientation inside the hospitalappeared to be an easy procedure for the supportersthemselves, yet in a moderate level, implying that there is room for improvement. Notwithstanding, professional supporters clarified that difficulties are escalated for people with intellectual disabilities, thus they could not have accessed the hospitals on their own. Particularly, through their views, it became apparent that it is by far more challenging to overcome obstacles posed by the system when issues related to the intellectual disabilities themselves (e.g., cognitive limitations and behavioural issues) are intermingled. Similar observations can be made in relation to communication issues between the professional supporters, healthcare staff and people with intellectual disabilities.
Starting from our subjects’ interaction with the professional alone, even though it was viewed as mostly satisfactory, some difficulties were mentioned too. Communication with doctors was found to be the most challenging one, mainly due to professional supporters’ unawareness of people’s with intellectual disabilities full rights, but also because of doctors (and nurses) limited time available.
As for administrative staff, the main communication issue with them arose from their perceived lack of interest to listen to professional supporters. Nonetheless, interaction between them and people with intellectual disabilities seemed to be much more challenging. It is noteworthy that varying importance was attached either to patients’ difficulties in understanding or to healthcare staff’s inability to properly explain/carry the information to people with intellectual disabilities, as the underlying causes of communication issues between them. Despite this distinction, miscommunication seemed to cause significant limitations to people’s with intellectual disabilities access and orientation inside the hospital, as well as during being treated by healthcare staff. The need to give clear and reliable information, as well as to calm the patients and explain to them doctors’/nurses’ instructions, were presented as the main justifications of professional supporters’ intervention.
For all the above reasons, we could conclude that specific adaptations can and have to be made for people with intellectual disabilities, like the creation of an alternative phone number to schedule appointments addressed to them or the design and implementation of a mechanism for their guidance in the hospitals by respectively trained staff. Even so, the implementation of horizontal policies in order to improve the access of all people in the secondary and tertiary healthcare system (e.g., employment of more healthcare staff to reduce long waits and allow them to devote more time and attention to each patient) could therefore be beneficial for people with intellectual disabilities too.
Lastly, education of all stakeholders was highlighted throughout the study as a powerful tool to improve people’s with intellectual disabilities access and quality provision of services in the secondary and tertiary healthcare system. From the part of professional supporters, education in their healthcare system in order to facilitate the access of the people they accompany was endorsed by most of them. In like manner, subjects thought that it is essential to strengthen hospitals with staff trained in providing services to people with intellectual disabilities, who would understand their needs and would be able to communicate with them in an effective way. Finally, almost all professional supporters regarded that education of people with intellectual disabilities would help them to be better prepared when accessing a hospital and to manage their own emotions in this environment. This final view could represent that people with intellectual disabilities, if given the chance, can enjoy the same benefits and rights in health with all other people.