Table 1.

Summary of outcomes of previous study

Outcomes from previous studya

Method and participants: Qualitative design including semi-structured interviews with people with DS and with parents, and focus groups with support staff members (of people with DS living in assisted living facilities)

Summary of findings: - Participants mentioned a large variety of healthcare and other services people with DS used. Among others: ‘Down team’, GP, dentist, psychologist, physiotherapist, speech therapist, ear nose throat physician, ophthalmologist, family support, educational support. - According to participants, good healthcare is: o Person-centred: The person with DS and his/her values and preferences are central; The personal situation and life stage of the person with DS are taken into account and caregivers are involved; Communication between professional and person with DS (and his/her caregivers) is respectful and adapted to the abilities of the person with DS. o Effective, efficient and accessible: Timely recognition of health problems, Healthcare professionals with DS-expertise are nearby; Information about available care is present. o Multidisciplinary, well-coordinated and integrated: It includes actors outside healthcare (e.g. school, work); Information is shared (between professionals); Consultations are planned in a synchronized manner; Transition from paediatric to adult healthcare and services proceeds smoothly.

Abbreviations: DS Down syndrome, GP General practitioner

^a Qualitative exploration of opinions and experiences of people with DS, parents, and support staff regarding healthcare quality [21]