Healthcare of Persons With Complex Developmental Disabilities From Three European Experiences: France, Italy, and Norway

Abstract

Background: The healthcare pathway of persons with complex developmental disabilities differs by country, depending both on the specificities of the associated healthcare system and the related societal views. In 2017, the French National Organization of Solidarity for Autonomy entrusted to a group of French experts with a specific mission to analyze three European experiences. Specific Aim: The aim of this article is to report the similarities and differences in the healthcare pathways of persons with complex developmental disabilities between France and two other European countries, Italy and Norway. The three countries present different health policies and different ideologies for the care management of persons with complex developmental disabilities.Method: A group of six French experts (including a neuro-pediatrician, an occupational therapist, a specialist of physical medicine and rehabilitation, a responsible member of a residential facility, a family caregiver representative, and the administrative coordinator of the French Polyhandicap Federation) traveled throughout Italy and Norway (3 and 4 days, respectively). Standardized forms were used to collect information, including dedicated structures, care delivery, dedicated physicians and other healthcareworkers, human and financial aid, place of the caregivers, and preventive and therapeutic actions.Findings: Law and health policies, funding, care coordination, and education differ between the three countries (France, Italy, and Norway) and in their effect on the lives of patients and their families.Discussion: The three different society models for modalities of care for persons with complex developmental disabilities may have consequences on the lives of patients and their families. This work may help to optimize the level of care according to both patient and family characteristics.

Parents' experiences of parenting a child with profound intellectual and multiple disabilities in France: A qualitative study

“…While there is a strong expectation from families for access to more flexible, evolutive and diversified care modalities (e.g., day or temporary respite care), the current levels of human, financial and technical support are insufficient. 12 The results of theme 5 showed that although parents embraced the view of disability as a medical issue by seeking medical recognition and various forms of therapies, their unmet needs due to confrontation with relational and sociostructural barriers led them to develop resistance to social and societal oppression of their child and people with disabilities. 17,45 Parents discussed sociostructural barriers and challenged the limits placed on their children by emphasizing the importance of focusing on the children's potential and abilities rather than their limitations, providing them with opportunities, and advocating for their social and societal inclusion.…”

“…In contrast to the extensive deinstitutionalization processes of other European countries, the French system relies on institutional settings that aim to offer graduated responses adapted to the severity of the person's health condition (rehabilitation centres, residential facilities [RFs], home care). 12 However, these options are not necessarily adequate and may lack fluidity (e.g., lack of proper general care coordination, imperfect geographic coverage, lack of space in adult care facilities). [12][13][14] A better understanding of parents' experiences of parenting their child with PIMD in this context is necessary to support them more effectively.…”

“…12 However, these options are not necessarily adequate and may lack fluidity (e.g., lack of proper general care coordination, imperfect geographic coverage, lack of space in adult care facilities). [12][13][14] A better understanding of parents' experiences of parenting their child with PIMD in this context is necessary to support them more effectively. 15 Research in the field of disability and the autism spectrum has highlighted the relevance of conceptualizing parents' experiences of providing support for their child's needs in terms of trajectories and work.…”

Health information systems in intellectual disability care : Towards the re-use of routinely collected data

“…However, with this multiple-case study we believe that we have a represented the heterogeneity of HISs used: ECD vs EPD, scale, profession, and time of introduction. This study was limited to Dutch HISs, as the organization of care for people with ID differs largely between countries [63,204,205]. HISs suitable for care for people with ID might also be useful for other populations in long term care, such as the elderly, and people who require a long term stay in psychiatric institutions.…”

“…The results may also be transferred to other forms of long-term care, where data registration is similar. Although the organization of care is different between countries [63,204,205], the generic ideas about merging data from different HISs can also be applied there. From the beginning of this thesis, the complete care landscape of Dutch ID care was included to incorporate the wide variety of caregivers involved, and HISs used.…”