Through the eyes of family caregivers: Meaning, challenges, and opportunities for basic psychological needs of people with severe or profound intellectual and multiple disabilities

Chapter 1 introduces the relevance of self-determination and basic psychological needs (BPNs) in the lives of individuals with severe or profound intellectual and multiple disabilities (SPIMD). While self-determination is linked to quality of life (QoL), opportunities for it diminish as disability severity increases. Individuals with SPIMD face complex, lifelong support needs and communicate in highly individualized, often pre-symbolic ways, requiring sensitive, adaptive caregiver responses. Family members, particularly parents, play a central role in interpreting and advocating their child’s needs, but face unique emotional and physical challenges. Healthcare professionals share responsibilities, making strong partnerships and comprehensive training essential for qualitative care. Despite growing interest, research on self-determination in individuals with SPIMD remains limited due to methodological challenges. Theories like Self-Determination Theory (SDT) and Basic Psychological Needs Theory (BPNT) offer valuable frameworks, but tools tailored to this group are lacking. Family caregivers’ insights into BPNs (i.e., autonomy, competence, and relatedness) for their child, can enhance research. Life transitions may offer unique opportunities to support BPNs and QoL, and understanding these dynamics may improve transition outcomes. This dissertation therefore aimed to better understand and measure self-determination, conceptualized through BPNs, in individuals with SPIMD. Chapter 2 showed that family caregivers interpret BPNs through subtle, often idiosyncratic signals. BPNs were described in terms of preferences, learning efforts, and feelings of comfort. Experiencing enjoyment in preferred activities without deeper meaning or goals, was seen as equally important to goal-directed self-determination. Caregivers engaged in complex, intuitive processes to elicit, recognize, interpret, and respond to these signals. Chapter 3 addressed the limited ability to explore how self-determination relates to QoL-related outcomes, by developing two questionnaires. One on family caregivers’ perceptions of autonomy-supportive experiences of their child, the other on BPN signals. Results supported their reliability and construct validity. Although further research is needed, these questionnaires offer a foundation for future research. Chapter 4 explored transitions as potential catalysts or barriers to self-determination-related constructs. While group-level constructs remained stable, individual trajectories varied, underscoring the need for personalized support. The findings emphasize the importance of caregiver insights and tailored approaches in fostering self-determination in this population. Chapter 5 integrates the main findings of the three studies. Strengths included: use of qualitative and quantitative methods, an in this population innovative longitudinal design, and inclusive collaboration with family caregivers. Limitations included: reliance on SDT and BPNT that may have narrowed theoretical scope; small sample sizes due to COVID-19 that affected generalizability; exclusive use of caregiver perspectives that, while rich, remain subjective and sometimes difficult to articulate; no distinction between severity level (severe versus profound); and limited cultural and religious diversity. Future research should explore the intrapersonal differences in BPN interpretation and support across different developmental stages. It should also refine the questionnaires, for example, to better capture BPN frustration and autonomy support through strategies that seem specific for this population (e.g., eliciting signals). Mapping environmental factors and differentiating support roles among key partners could further enhance understanding. For care practice, findings underscore the value of caregiver expertise in interpreting BPNs, while also recognizing their challenges. Supporting caregivers in articulating their knowledge and navigating support processes can improve person-centered care. The theoretical flowchart may serve as a practical tool for professionals to better understand and support this population. The dissertation concludes that BPNs, and thus self-determination, can be meaningfully supported in individuals with SPIMD. It requires fostering environments rich in autonomy-supportive interactions, constructive challenges, and warm relationships. Until society can objectively access the inner experiences of this population, it remains essential to create a strong, long-term network of key partners who collectively possess greater knowledge than any individual alone.