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This chapter qualitatively explored the impact of including parent liaisons (i.e., parents with lived experience caring for a child with complex needs, who support other caregivers in navigating child and family needs) in a case conferencing model for children with complex medical/social needs. Case conferences are used to address fragmented care, shared decision-making, and set patient-centered goals. Seventeen semi-structured interviews were conducted with clinicians and parent liaisons to assess the involvement of parent liaisons in case conferencing. Two main themes included benefits of parent liaison involvement (10 subthemes) and challenges to parent liaison involvement (5 subthemes). Clinicians reported that liaison participation and support of patients reduced stress for clinicians as well as family members. Challenges to liaison involvement included clinical team/parent liaison communication delays, which were further exacerbated by the COVID-19 pandemic. Parent liaison involvement in case conferences is perceived to be beneficial to children with complex needs, their families, and the clinical team. Integration of liaisons ensures the familial perspective is included in clinical goal setting.

Using Andersen’s (1968) behavioral model of health services use as a guiding conceptual framework, this study examined how receipt of family-centered care relates to the perceived family challenges for families of children with autism spectrum disorder (ASD).

Data from the 2009–2010 National Survey of Children with Special Health Care Needs (NS-CSHCN) were analyzed for 812 parents of children with ASD.

Multiple regression analyses provided substantive statistical evidence that a child’s race, the adequacy of a family’s insurance, and the stability of child’s health care needs significantly contributed to predicting his or her receipt of family-centered care. Further results suggested a relationship between receipt of family-centered care and the perception of challenge for these families; families receiving family-centered care perceive fewer challenges and feel less unmet need for child health services.

Family-centered professionals provide critical voices in the development of policies and programs geared toward improving the health outcomes of children with ASD and their families.

This study examined access to and quality of supports for families of adolescents with disabilities.

An online survey was completed by family members of transition-aged young adults who had participated in parent training sessions on topics related to transitions to adulthood. Survey responses came from all 50 states, the District of Columbia, and 4 U.S. territories.

More than one-third of families reported unmet information needs related to areas such as employment, housing, preparing for adult relationships, and preparing others to support the family members with disabilities. Families of younger transition-aged youth, youth with Autism Spectrum Disorder or other disabilities, and families with lower household incomes reported more unmet needs. The overall quality of services families reported receiving was 2.19 on a 4-point scale of 1 to 4. Parents reported needing more information and quality of supports related to the transition of youth from school to adulthood.

Given the scope of unmet needs, ongoing collaboration between schools, agencies, organizations, and other entities that serve families is critical. While schools play a key role in supporting the transition process, other organizations also have a role.

The results from this survey demonstrate that the need for support is not limited to youth with disabilities, but that family members also have information and support needs related to their roles as caregivers in the transition process.

This survey provides information about unmet needs and current services from a national sample that includes often underserved populations and includes sufficient numbers of respondents to allow comparisons between families, based on the type of disability their family member had.

As a result of human right movements, the importance of special needs of individuals with disabilities has become more prominent in many countries in the world. Hence, endeavors of people with disabilities, their family members, and advocates to seek accessible communities and equal opportunities for education, as well as, job placement have been widely accepted as human rights for individuals with disabilities. Consequently, establishing barrier-free environments and inclusive societies for people with disabilities have become important indicators of social development of countries. Besides, since education is considered as a fundamental human right, the importance of providing special education for children with disabilities has been recently realized by many nations (United Nations. (2006). World programme of action concerning disabled persons. New York, NY: United Nations). Turkey is one of those countries that have quite recently started to invest in special education services for its citizens with disabilities. This chapter focuses on the development, as well as the current state of special education in Turkey. Included in this development are the following sections: origins of Turkish special education, prevalence and incident rates, trends in laws and regulations, educational interventions, working with families, teacher preparation, progress that has been made, and special education challenges that exist.

In the years following high school, youth, including youth with extensive support needs, aspire to pursue a range of personally important experiences, such as attending postsecondary education programs, obtaining competitive employment, and living independently. However, the level of disability continues to be a powerful predictor of the degree to which desired outcomes materialize in early adulthood. For most young adults with extensive support needs, valued outcomes are elusive. To support youth with disabilities, including youth with extensive support needs, to progress toward achieving their post-school goals, the Individuals with Disabilities Education Act of 1990 mandated the provision of transition services. Despite the legal mandate for transition services, numerous factors continue to impact the outcomes experienced by youth with extensive support needs. However, research has identified numerous practices to support improved post-school outcomes. In this chapter, we address the transition mandates of the IDEA, identify and describe factors influencing the post-school outcomes of youth with extensive support needs, and provide strategies, practices, and interventions for improving these outcomes.

Purpose: The aim is to explore how family relations are affected by societal changes in relation to informal and formal caregiving and self-determination of older adults.

Design/methodology/approach: Care managers (CMs)/social workers (SWs) (N = 124) participated in a comparative vignette study including Japan, South Korea, and Sweden. Systems theory was used.

Findings: Japanese CMs/SWs clearly describe their efforts to create networks in a relational way between formal and informal actors in the community. South Korean CMs/SWs balance between suggesting interventions to support daily life at home or a move to a nursing home, often acknowledging the family as the main caregiver. In Sweden, CMs/SWs highlight the juridical element in meeting the older adult and the interventions offered, and families primarily give social support. Regarding self-determination, the Japanese priority is for CMs/SWs to harmonize within the family and the community. South Korean CMs/SWs express ambivalent attitudes to older adults’ capability for self-determination in the intersection between formal and family care. Swedish CMs/SWs adhere to the older adult’s self-determination, while acknowledging the role of the family in persuading the older adult to accept interventions. The results suggest emerging defamilialization in South Korea, while tendencies to refamilialization are noticed in Japan and Sweden, albeit in different ways.

Research limitations/implications: In translation, nuances may be lost. A focus on changing families shows that country-specific details in care services have been reduced. For future research, perspectives of “care” need to be studied on different levels.

Originality/value: Using one vignette in three countries with different welfare regimes, discussing changing views on families’, communities’ and societal caregiving is unique. This captures changes in policy, influencing re- and defamilialization.

The tagasalo concept is a unique Filipino personality, indigenous to its culture and relevant within the family system. Carandang (1987) based this concept from her in-depth clinical practice and observation of Filipino family dynamics. The tagasalo is the family member who “catches” or “saves” the family and feels inordinately responsible for the care and welfare of other members of the family. Udarbe (2001) conducted further research and identified dynamics of the tagasalo personality. In the current study, the authors have extended the framework by exploring other dimensions aside from the compulsive and non-compulsive dimensions. The tagasalo also exhibits internalizing behaviors, an implicit tendency to be sensitive to other people, struggling with internal anxiety and stress; and externalizing behaviors by acting out explicitly to alleviate these anxieties. This chapter provides an in-depth theoretical-historical development of the tagasalo personality construct, locates it in broader psychological literature, and extends its potential by identifying multiple dimensions, supported with case illustrations and a composite case analysis.

COVID-19 has affected families across the globe with far-reaching consequences, particularly in regard to children's education. The pandemic has exacerbated existing inequalities for families of students with disabilities in particular. This chapter explores families' perspectives on how COVID-19 affected partnerships between families of students with disabilities and their schools in Ontario, Canada.

We interviewed 18 parents of students with disabilities in K-12 Ontario schools. Using a reflexive thematic analysis approach, we analyzed interviews to develop themes inductively.

Participants shared varied experiences of partnerships with their schools both before and during the pandemic. However, all participants described additional challenges as a result of COVID-19. Frequent, open, and personalized communication was emphasized as essential for effective partnerships; however, this was often lacking. Participants shared various ways they were involved in schools, including advocating for their child, and needing to balance multiple roles during COVID-19. Overwhelmingly, participants expressed an inadequacy of support during the pandemic related to online learning and a lack of human resources (e.g., Educational Assistants, therapists), negatively affecting partnerships. However, they also described positive experiences of family-school partnerships, as well as hope for effective future partnerships.

This research gives voice to families of students with disabilities to deepen our understanding of barriers and facilitators to positive family-school partnerships. Findings help to direct appropriate policies and practices that can improve partnerships during COVID-19 and beyond, and ultimately enhance education and quality of life for students with disabilities and their families.

How do people with few material resources manage their consumption lives? We address this question by investigating the consumption practices and processes of 27 subsistence consumers in South Africa. These individuals are economically active, underserved consumers who either had in the past or have today few resources in terms of income, employment, and education; most of these consumer–informants grew up in and/or live in urban townships populated by poor black South Africans. Our interpretation is based on family systems theory and centers on analyses showing that subsistence consumers enact strategies to cope with the chronic stress of resource allocation needs for the family that outpace resource generation. The repertoire of strategies includes: (1) adhering to resource generation opportunities, (2) accessing new resources, (3) talking to family members, (4) trying and striving, (5) sacrificing, and (6) risking. These strategies are discussed in light of family systems theory, consumer behavior research, and marketing to subsistence consumers.

Celiac disease is an auto-immune disorder that requires strict lifelong adherence to a gluten-free diet. I explore how a celiac diagnosis affects gendered feeding work within families.

This chapter is based on a grounded theory analysis of field research with five celiac support groups and 80 in-depth interviews. I interviewed 15 adult men and 56 adult women with celiac, plus nine additional family members.

Gendered care work norms place the onus of responsibility for gluten-free feeding work on women, multiplying time spent planning, shopping, and preparing meals. Women employ distinct gendered strategies to accommodate the gluten-free diet. Following a strategy of integration, women tailor family meals to meet other diagnosed family members’ dietary needs and the entire family’s taste preferences. However, when women themselves have celiac, they follow a pattern of deferential subordination, not allowing their own dietary needs to alter family meals. Thus, women continue to prepare family meals as a form of care for others, even when their medical needs justify putting themselves first.

Social support is a key determinant of compliance with necessary lifestyle and dietary changes in chronic illness. However, little research explores the gendered dynamics within families accounting for the link between social support and dietary compliance. I show how gendered care work norms benefit husbands and children with celiac, while simultaneously disadvantaging women with celiac.