Children who have complex health needs: parents' experiences of their child's education

Abstract

Background An increasing number of children have complex and continuing health needs. These children have the same right to a full range of education opportunities as other children. Methods This paper reports on the findings from a small qualitative study of the experiences of parents whose children have complex heath needs, related to their experiences of their child's education. Interviews with parents were used to generate data. Findings Parents encounter a number of challenges to their children achieving equal opportunities in relation to education. The factors which influence their opportunities include: staffing issues, funding issues, the attitudes of individuals and organizations, staff confidence in meeting children's needs, clarity over responsibilities and funding. For parents, what seemed most important is not whether their child accesses mainstream education, but whether the school which they attend assists them to achieve their potential. Children who have complex health needs may have to make a greater effort than their peers to achieve educational goals, and may miss considerable school time. This can impact on their leisure time. Accessing pre-school education can be difficult for children who have complex health needs. Conclusions Inclusion in education should include pre-school provision, and more work in this area would be beneficial. Inclusion in mainstream education is only beneficial if it enables the child to participate fully with their peers. This requires practical and organizational issues to be addressed, services to be well co-ordinated, responsibilities and funding to be clear, and staff to be enabled to be confident in meeting the child's needs. However, it is also vital that individuals and organizations have a positive attitude to children and to inclusion. The additional effort and time which children may have to spend on their school work because of their health needs should also be recognized and supported appropriately.

Parents' experiences of living with a child with a long‐term condition: a rapid structured review of the literature

“…Adaptation and coping was identified as a salient feature of living with a child with a long‐term condition. Parent's adjustment appeared to be a dynamic process because of on‐going changes in their child's condition and stage of development, balanced with varying family needs . Over time most parents adapted and coped with living with a child with a long‐term condition .…”

Perceptions of Parents of Young Children with and without Disabilities Attending Inclusive Preschool Programs

“…Parents sited an increased awareness and acceptance of children with disabilities, teacher-child ratios and extra services as positive components of the inclusive educational setting (Bailey & Winton, 1987;Guralnick, 1994). However, parents of children with and without disabilities may have concerns regarding the risks associated with their child attending an inclusive program including the integration of children with more severe disabilities (Green & Stoneman, 1989;Serry, Davis, & Johnson, 2000;Garrick & Salend, 2000;Peck, Staub, Gallucci, & Schwartz, 2004, Hewitt-Taylor, 2009). The perception of parents regarding inclusion and the impact it has on their child is vital to comprehending the overall benefits and drawbacks to the inclusion experience.…”

Disclosing haemophilia at school: strategies employed by mothers of children with haemophilia in Japan

“…For parents whose children had chronic illnesses, finding the right school was very important [24]. This implies that some mothers felt that schools (especially public schools) were not suitable places for children with haemophilia after disclosing details pertaining to their children's haemophilia.…”

“…This implies that some mothers felt that schools (especially public schools) were not suitable places for children with haemophilia after disclosing details pertaining to their children's haemophilia. For parents whose children had chronic illnesses, finding the right school was very important [24]. Two major school systemspublic and privateexist in Japan.…”