Exploring views on medical care for people with intellectual disabilities: an international concept mapping study

Background Medical care for people with intellectual and developmental disabilities (IDD) is organized differently across the globe and interpretation of the concept of medical care for people with IDD may vary across countries. Existing models of medical care are not tailored to the specific medical care needs of people with IDD. This study aims to provide an improved understanding of which aspects constitute medical care for people with IDD by exploring how international researchers and practitioners describe this care, using concept mapping. Methods Twenty-five experts (researchers and practitioners) on medical care for people with IDD from 17 countries submitted statements on medical care in their country in a brainstorming session, using an online concept mapping tool. Next, they sorted all collected statements and rated them on importance. Results Participants generated statements that reflect current medical and health care practice, their ideas on good practice, and aspirations for future medical and health care for people with IDD. Based on the sorting of all statements, a concept map was formed, covering 13 aspects that characterize medical and health care for people with IDD across nations. The 13 aspects varied minimally in importance ratings and were grouped into five overarching conceptual themes: (i) active patient role, (ii) provider role, (iii) context of care, (iv) consequences of care for people with IDD, and (v) quality of care. Conclusions The themes, clusters and statements identified through this explorative study provide additional content and context for the specific patient group of people with IDD to the dimensions of previous models of medical care. Supplementary Information The online version contains supplementary material available at 10.1186/s12939-022-01700-w.


8
In Japan I can find more specialists has come to understand people with IDD nowadays. Every doctor has different values and I think it is important to communicate thoroughly with specialists by the primary care doctors for people with IDD.

9
It is completely under funded 10 In Canada, adults with IDD access general, publicly funded health care. There remains many people in the healthcare workforce that do not feel that they have the competencies to support the unique health and social considerations of this group.

11
There are guidelines and tools to support health care providers for this group In Canada, medical care for adults with IDD is not well coordinated between primary and specialist care and many individuals do not have access to comprehensive team-based primary care.

13
In Canada, there remain many adults with IDD that do not receive recommended preventative care and have underlying conditions that are not identified secondary to behavioural/communication challenges and challenges in presentation.
14 Do any of us have a nurse following us around to pass medications when we are out of our home? Why is this normal for DD population?
15 Med Rule that allows DSPs pass medications is too restrictive and doesn't allow for residents to travel much less attend special olympics without a nurse to travel with them to pass meds to them. What facility has this kind of money? 16 our folks are being pushed into MMAI programs which require referrals for specialists, many not in the immediate area. Strains resources to get them to appointments and delays care. They lose their current PCP and forced to see another.
17 medical care is strained by providers who do not understand that our folks don't understand their questions and./or are poor reporters...they must use staff to fill in the gaps of information but often ignore staff, prompting unnecessary testing.

18
During Covid we find that we are essential workers. We are not paid that way, how can we provide high quality care when we can not attract high quality workers with the salary the state funds? Our population suffers the most.

19
DD diagnosis does not allow for them to enter nursing home to live out their lives...they can NEVER retire also must do programming no matter their age or progressing medical conditions. This is NOT normalization. Once 65+ why choices gone? 20 Approaches that aim to increase self determination of the person with ID, such as shared decision making and supported decision making are promising practices, but they are only being used by few people in small pilot areas.

21
Families and people with ID have significant challenges with transition from pediatric medical care providers. There are few capable medical care providers for adults in many areas.

22
In the US, there is not agreement about the best approach -whether it is to established specialized care centers or whether it is better to support all clinicians to provide good integrated care.

23
People with with ID in the US generally do not have access to specialized clinicians who have particular knowledge and training.

24
There are geographic, socioeconomic and racial inequities in access to medical care for the population as a whole.

25
In Japan, medical care is defined as a part of medical treatment which is provided by non-medical staff or family members of people with IDD at their homes or schools, other than in medical hospitals.

26
There is specialized education for people with IDD, but not medical specialty in IDD in Japan. However, we do have a category called Ryoiku in which people with PIMD are cared for their medical, healthcare and welfare issues.

27
The specialist skills to assess and provide treatment for people with IDD is not acknowledged as a specialty, like cardiology or neurology. It is a specialist skill to understand the comprehensive health needs of people with IDD.

28
There is no financial incentive for adequate healthcare to be provided by medical staff, it is usually only those with an interest in the area work in this space.

29
People with IDD have multiple barriers to accessing the healthcare they need. Medical staff often lack the expert knowledge to assess and manage health needs, communication is insufficient, not enough education available, rights of IDD not acknowled 30 Several reports in Norway on Health status and health monitoring of adult people with ID, have for many years told us that it is not sufficient. Care workers do not capture signals of diseases soon enough to be able to treat.

31
In Norway, we lack both general-and acute health knowledge among care workers who work with people with ID.

32
Ageing and Health has developed a Hospital passport for people with ID to bring when treated in hospitals or other units.

33
All habitants in Norway have a general practitioner ,and people with ID are entitled a yearly health check by their GP. But not all of them receive a Health check due to lack of resources.

34
In Norway we have habilitation services that offermultidisciplinary inpatient and outpatient services for people with ID. Children and adult care are separated.

35
In Switzerland, special needs of PWID, especially adults, and their care have to be recognized and adequately been reimbursed.

36
There are few specialized units in Switzerland available for people with ID.Global standards of medical care is high, therefore most of PWID get adequate treatment. However: care in the community and for challenging behaviour must be improved.

37
A particular issue arises at transition from paediatric to adult care-as children with IDD are surviving longer there is an issue with who provides ongoing care for them -adult practitioners are not used to looking after them in the same way 38 There is an awareness of the increasing need to support people with IDD in Australia. However there are still many misconceptions about their needs and the complexity of their conditions.

39
In Israel I believe that the medical and developmental services are all in all very good for kids. However, I think that there is a gap between their services and the ones that are offered to adults.

40
Average life span in most west African countries rangea from 35-50 so when you have an IDD life span is even shorter due to a lot of factor becauae the quality of life and healthcare is completely beliw standard for people with IDD.

41
The most vulnerable are not always the most protected so it makes a really difficult situation even worse when you are located in the rural setting because there is inadequate healthcare and inequalities of care 42 Chikdren suffer a lit especially once with IDD, YHEY do not fit the box and are labelled in the society

43
The rural are is the most deprived due to lack of accessibility to healthcare and poor road networks 44 Iits needs structure and dedication 45 The dissability bill has just been signed into law and this took so long but up to now it is not being enforeced

50
If the ID person cannot verbally communicate and articulate what is wrong, then treatment is delivered 'around' them -directed at whoever is supporting them rather than the person themselves 51 Most medical providers don't seem to understand the impacts of complex disabilities or how to support the conversations which need to take place for their appropriate care 52 It is not readily accessible and where it is accessible, there is stigma attached to it so few people will willingly seek treatment from the facilities providing medical care for people with IDD 53 Psychotropic drugs are used too often in the medical care of people with IDD in my country.

54
It would be good to reduce the medicalisation of medical care for people with IDD in my country 55 Medical care for people with IDD is not given enough prominence in my country.

56
Improving communication between medical practitioners, allied health, and support organisations would improve medical care for people with IDD in my country.

57
Medical care for people with IDD in my country is fragmented.
58 Some children with IDD do not have access to medical care as it is not considered as priority since it is not life threatening.

59
Most children with ID are first suspected by their parents and neighbors/ community members especially in rural area. In urban, they are first suspected by class teacher in nursery or school especially for those children with ID with working parents.

60
There is a use of both indigenous and western knowledge in the diagnosis of ID. Conditions of children are often suspected by parents especially those in rural areas using indigenous knowledge 61 Most children with ID who don't present any other clinical condition, are first suspected by their parents, mainly when they have older siblings, or by teachers on daycare and school. Physicians seem more alert to severe than mild conditions.

62
Children with genetic conditions coursing with ID tend to get earlier diagnose and treatment. Those who fall out of this, eg ASD, mild CP and others, are less likely to get invloved in early intervention programs timely.

63
Overall it varies greatly from one region to another, but most states and cities rely on a unprepared helth care system when it comes to diagnose and the education system mix inclusive and segregate options. 3) Establish the percentage of schools dedicated to IDD, in relation to normal schools, in the different countries.

68
of their funds and how they are used in general.This would allow establishing regional comparative indices of concern for IDD over time.

72
People with IDD within disability support in the municipality do have some medical support specialized in IDD (nurses, occupational and physio -therapists), however without primary health care competence -possible leading to unequal care in a way 73 Primary health care available for all citizens, exist on 300 places in a 2 million city such as Stockholm, with a lot of doctors on each place in turn meeting to few individuals with IDD to get experience enough to see pattern connected to the IDD

74
Although information about all different familiar syndromes is available on governmental webpages health care professionals seldom have the time (or knowledge about the need) to look into and learn about different syndromes comorbidity 75 The education system for doctors as well as nurses have very little education in this populations needs 76 In Sweden similar to Canada children and adolescents with IDD are mostly well served from the health care organizations. It is after that, when they have to find help in the general health care system that it gets problematic.

77
Knowledge is very scarce within the health care system among what might follow an IDD concerning difficulties such as understanding verbal information or the need for extra time to be able to communicate needs and questions.