Development of a family-centered intervention to support self-determination in adolescents and young adults with intellectual disability in home environments: Protocol for a multistage mixed methods design

In recent years, the concept of self-determination has gained currency in the field of intellectual and developmental disabilities, particularly with regard to individuals with intellectual disability. According to the American Association on Intellectual and Developmental Disabilities, intellectual...

ver descrição completa

Detalhes bibliográficos
Autores: Fàbregues, Sergi, Arellano, Araceli, Younas, Ahtisham, Vicente, Eva, Berástegui, Ana, Casas, Ana, Escalante-Barrios, Elsa Lucia, Andrés-Gárriz, Clara, Mumbardó-Adam, Cristina
Formato: artículo
Fecha de publicación:2025
País:España
Recursos:Universitat Ramon Llull (URL)
Repositorio:DAU Arxiu Digital de la Universitat Ramon Llull
OAI Identifier:oai:dnet:dau_________::fed8092da8fb921e04ec4c2e0a14ed27
Acesso em linha:http://hdl.handle.net/20.500.14342/6262
https://doi.org/10.1371/journal.pone.0325919
Access Level:acceso abierto
Palavra-chave:Discapacitat intel·lectual
Joves
Autonomia
Descrição
Resumo:In recent years, the concept of self-determination has gained currency in the field of intellectual and developmental disabilities, particularly with regard to individuals with intellectual disability. According to the American Association on Intellectual and Developmental Disabilities, intellectual disability is “a condition characterized by significant limitations in both intellectual functioning and adaptive behavior that originates before the age of 22” [1]. Alternatively, the American Psychiatric Association’s DSM-5 manual [2] defines intellectual disability as involving “impairments of general mental abilities that impact adaptive functioning in three domains, or areas,” namely, conceptual, social, and practical domains. Self-determination, in the context of disability, is defined by Shogren et al. [3] as “a dispositional characteristic manifested as acting as the causal agent in one’s life”. Extensive research has been conducted on self-determination among people with intellectual disability, addressing, among other topics, the perception and experience of self-determination by these people and their family members [4]; the conceptualization and operationalization of self-determination by practitioners and other stakeholders [5]; the measurement of self-determination across cultures [6,7]; the facilitators of and barriers to self-determination in different contexts [8,9]; and the development and evaluation of interventions to facilitate and enhance self-determination [10,11]. Increased self-determination has been shown to enhance the quality of life of individuals with intellectual disability. Numerous studies have shown a positive relationship between various key indicators of the quality of life of individuals with intellectual disability and self-determination. These indicators include academic achievement [12], school and post-school outcomes [13], psychological well-being [14], and employment [15]. This construct is operationalized through a variety of skills, such as decision-making, risk-taking, self-advocacy, and self-management strategies. The likelihood of people with disabilities implementing these strategies and improving their quality of life will depend on the availability of adequate systems of individualized supports, defined as “resources and strategies that aim to promote the development, education, interests, and personal well-being of a person and that enhance individual functioning” [16]. From a person-environment perspective of disability, the development of support systems to promote self-determination for individuals with intellectual disability is closely related to the extent to which environmental factors, such as personal, interpersonal, and societal contexts, contribute to the establishment of such systems [17]. Among these contexts, the role of the family is decisive in facilitating or impeding self-determination in these individuals [15,18–26]. Parents are responsible for teaching children in their early years how to behave and interact with others in areas such as developing and expressing self-determined beliefs; knowledge; and skills such as problem-solving, self-advocacy, and goal setting [27]. Since parents serve as role models, children’s willingness to act in a self-determined manner is directly affected by how self-determination is expressed, developed, and reinforced in the family [23]. Furthermore, parents are responsible for laying the foundations for their children’s future self-determination by developing learning opportunities and creating a supportive home environment.