Living with a child’s disability can present various challenges for families. The scientific literature has shown that families with children or adolescents with disabilities often face difficulties that can affect family dynamics (Batista and França, 2007; Oliveira and Poletto, 2015).
The family is a social system within various contexts, including the immediate community and broader social systems. This family structure is characterized by interdependence among its members, which means that variables affecting one family member impact each of the other individuals individually and on the functioning of the family unit (Giné, 2000; Buscaglia, 2006; Fiamenghi and Messa, 2007; Hechet et al., 2011; Baqués, 2017).
Each family member has their own understanding and assigns meanings to family relationships based on their personal resources. Furthermore, each child experiences the dynamics of their parents based on their expectations, emotions, and the level of emotional availability within the family (Fiamenghi and Messa, 2007).
Several studies have explored the effects of having a family member with a disability in Brazilian families. These studies have revealed that families dealing with disability often face challenges such as overwhelming caregiving responsibilities, adapting to a new reality, needing emotional and financial support, and encountering barriers to accessing quality healthcare and education services (Tomaz et al., 2017).
The siblings of children with disabilities are also affected by this unique family dynamic. They commonly develop maturity and independence at an early age, as their parents’ attention and energy are intensely focused on the child with a disability (Matsukura and Cid, 2004).
Mothers of children with disabilities, such as those with autism, report difficulties accessing appropriate educational placements and ensuring their children’s rights are upheld. They face situations of inadequate inclusion, lack of preparation of schools to receive children, and experiences of prejudice and discrimination (Minatel and Matsukura, 2015).
Stress is a reality for caregivers of these children as well. Studies have shown that parents of children with Down syndrome and intellectual disabilities experience higher stress levels than those with typical development (Minetto et al., 2012).
The Brazilian scientific literature has identified several challenges that families of individuals with disabilities encounter. These difficulties include negative perceptions about the quality of life of the primary caregiver, the impact on the marital relationship, the greater burden of responsibility assigned to women, obstacles in accessing health and education information and services, financial difficulties arising from giving up work to care for the child with a disability, and restrictions in transportation, health, inclusive education, social life, and leisure. All of these difficulties stem from a social structure that is not inclusive enough (Oliveira et al., 2008; Barbosa and Fernandes, 2009; Favero-Nunes and dos Santos, 2010; Tomaz et al., 2017).
In this context, it is crucial for service providers to recognize the families of individuals with disabilities as a primary focus and to develop approaches that value the family as a support system in the child’s life. When families have access to the necessary resources and support, they become a driving force for their children’s optimal development. It is essential to understand that families of children and adolescents with disabilities do not hinder their development but are their primary providers (Allen and Petr, 1996; Franco, 2015).
Family-centered practices have emerged as a recent approach based on bioecological and systemic human development perspectives. They broaden their understanding of the interactions between human development and the contexts in which they occur. These practices consider the developing individual’s biological, psychological, and behavioral characteristics, including the hierarchical and interrelated contexts in which they are situated (Carvalho et al., 2016).
The instruments developed from family-centered practices to assess the family’s needs for support and quality of life are essential for strengthening and empowering families to overcome their challenges. Understanding the support needs of a family that has a member with a disability and how these needs influence the perceived quality of life of the family group is essential for developing effective family-centered practices. The balance of these variables is crucial, as an increase or decrease in one will directly affect the other.
“Family needs” refers to the lack of support in performing essential activities for the well-being of the entire family group. This impacts all members’ functionality and quality of life, including those with disabilities. Therefore, it is crucial to prioritize the identification of these needs in the process of developing action plans. This will enable effective planning of interventions that meet the real demands of the family (Giné, 2000; Thompson et al., 2009; McWilliam, 2010; Verdugo et al., 2012; Chiu et al., 2013).
In Brazil, the approach based on family needs is not yet a common practice in the work routines of professionals in the Early Intervention services field. This is due to a shortage of specific instruments, inadequate professional training, and the predominance of assistance based exclusively on the expertise of the professional, usually in healthcare institutions. Moreover, the intersection between different sectors is weak, resulting in a neglect of evidence indicating that support needs affecting all family members have a significant impact on the quality of life of the entire family group, including the quality of life of the child with a disability (McWilliam, 2010; Hechet et al., 2011; Santos, 2018; Nunes, 2019).
These statements are supported by two systematic literature review studies conducted in Brazil. In their systematic review, the Santos et al. (2017) identified a gap in Brazilian research on family quality of life. They pointed out that all studies selected for analysis focused solely on understanding the quality of life of individuals with disabilities, their caregivers, or parents, without considering the family’s and environment’s needs. These findings were confirmed by another systematic review conducted by the Nunes et al. (2021) on the quality of life of families with children and adolescents with disabilities. The authors noted the scarcity of studies on the topic, the prevalent use of individual constructs of quality of life, and the lack of measurement instruments to comprehend the quality of life of the family group. Nunes et al. (2021) further pointed out that the few studies addressed high formal and informal support needs as a barrier to family well-being and quality of life.
Given the above, this study aims to outline the process of cross-cultural adaptation and validation of the Family Needs Assessment scale for use in Brazil.
