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    ‘We don’t know nearly enough’: an online survey exploring perspectives of specialists who support children with brain-based visual impairments
    (Frontiers Media S.A., 2025-01-29) Jakubowski JS; May E; Findlay R; McDowell N; Simkin SK; Hamm LM; Chang M
    Introduction: Children with brain-based visual impairments (some of whom have a diagnosis of Cerebral Visual Impairment, or ‘CVI’) represent a growing and underserved population within vision services. These children often have more complex needs than those with ocular visual impairments and benefit from specialist support from multiple disciplines. This study aimed to understand the perspectives of these specialists in terms of their goals, views on collaboration, and understanding of the term ‘CVI’. Methods: We invited a range of specialists who work with children with brain-based visual impairments, including educators, rehabilitation staff, clinicians, and family members, to complete an online survey between April 2023 and April 2024. Results: The analysis included 94 respondents: 51 educators, 30 rehabilitation staff, 7 clinicians, and 6 family members. Respondents shared common goals of connecting with the child (87/94, 93%) and fostering their learning and development (82/94, 93%). However, respondents also noted some specific and divergent goals, which can be at odds with each other. Professional staff frequently identified family members as the most valuable source of information about their child’s vision (36/88, 41%), though family members expressed feeling under-valued. Transdisciplinary clinics were highlighted as a helpful model to provide quality child-centered care. Of the 73 professional staff who reported being familiar with the term ‘CVI’ (73/88, 83%), most (61/73, 84%) thought it was underdiagnosed, but respondents had different perspectives on what a diagnosis meant. Only 73% of professionals familiar with CVI reported receiving formal training about it. Discussion: The varied goals and different perspectives on CVI create challenges to providing cohesive support for children with brain-based visual impairments. Increasing the availability of complementary formal training across disciplines and adopting transdisciplinary models of care are promising approaches to improve the quality of services.
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    Support experiences of children and youth with myalgic encephalomyelitis/chronic fatigue syndrome and epilepsy in New Zealand schools : a parental perspective : a thesis presented in partial fulfilment of the requirements for the degree of Master of Science with an endorsement in Health Psychology at Massey University, Manawatu Campus, New Zealand
    (Massey University, 2022) Bierre, Kirstin Louise
    Medical advancements have changed the prognosis of many paediatric conditions, leading to a rise in the number of children with chronic health conditions (CHCs) who require support to gain equitable education opportunities and outcomes. Two CHCs that impact on schooling are myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and epilepsy. Previous research has detailed different supports offered by schools, but there is a gap in the literature regarding the support of children with ME/CFS and epilepsy in New Zealand schools. The current research aimed to gather parents’ perceptions on the different supports available in New Zealand for their children/youth with ME/CFS or epilepsy to help with the impact their CHC has on schooling. Participants included 20 parents of children with ME/CFS (11-20 years) and 23 parents of children with epilepsy (6-18 years). A mixed methods online survey asked for parents’ perceptions of the impact that ME/CFS and epilepsy had on schooling and the support available in ‘Mainstream’ and ‘Other’ schools. Through mixed method analysis, including descriptive statistics and thematic analysis, six main themes and subthemes were identified; 1) Let-down by their own bodies, 1.1) Damaging self-concept; 2) Struggle for validation; 3) Luck of the draw: Both supportive and unsupportive experiences, 3.1) Teachers operating in a rigid system, and 3.2) Gratitude from parents; 4) Ill-suited support, 4.1) Other schools as transitional institutions; 5) Lack of understanding and discrimination; and 6) Impact of COVID-19. These themes revealed perceptions of positive support experiences with understanding teachers who formed trusting/positive relationships with parents, as well as negative experiences centred around a lack of understanding from a restrictive system not well designed to support their children with ME/CFS or epilepsy. Condition specific subthemes revealed differences between ME/CFS and epilepsy – related to condition legitimacy, symptom visibility, and funding opportunities. Findings were also interpreted using a socio-ecological framework, which highlighted the interrelated environments surrounding the child/youth, including teachers/classrooms, schools, health/education policies, and western health conceptualisations, which likely influenced support. These findings shed light on parents’ perceptions of the support of their child/youth with ME/CFS or epilepsy in New Zealand, with the hopes of informing future research or support initiatives.