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    The lived experience of parents with children with genetically solved developmental and epileptic encephalopathies : a thesis presented in partial fulfilment of the requirements for the degree of Doctor of Clinical Psychology at Massey University, Wellington, New Zealand
    (Massey University, 2021) Jeffrey, Jennifer
    Parents of children with developmental and epileptic encephalopathy (DEE) are at high risk of developing mental health difficulties due to caregiver burden and the unpredictability of seizures. Identifying genetic pathogenic variants improves clinical outcomes for children with DEE by directing therapy and enabling accurate reproductive and prognostic counselling for families; however, the additional personal value of a genetic diagnosis is currently under appreciated. The present research aimed to explore parental experiences of having a child with DEE and the personal utility of a genetic diagnosis for families. Using the qualitative methodology of Interpretative Phenomenological Analysis (IPA), in-depth semi-structured interviews were conducted with fifteen families (seventeen parents) of children with a genetically solved DEE. The interviews stimulated discussion about the lived experience of caring for a child with a DEE when parents did not have a genetic answer, as well as what their experience was after they had received a genetic diagnosis. Families discussed the detrimental impact of living with constant uncertainty regarding the aetiology of their child’s DEE prior to the genetic diagnosis, which (in combination) with the uncertainty of seizures resulted in common trauma coping responses, such as hyperarousal, reactivity, vigilant monitoring, and avoidance behaviours. The diagnostic uncertainty prompted families to search for answers and attribute blame to themselves or others when they were unsuccessful. With regard to the genetic diagnosis, families reported that receiving a genetic label improved their knowledge about the likely trajectory of the DEE, increased their hope for the future and helped them communicate with others. The relief of finally having an answer for the cause of their child’s DEE alleviated parental guilt and self-blame as well as helped families to process their grief and move forward. Delay in receipt of a genetic diagnosis diluted its psychological impact. To date, the factors associated with the development of posttraumatic stress symptomology in parents of children with epilepsy have focused on caregiver burden and seizure frequency. The present study demonstrates that uncertainty regarding the aetiology of their child’s DEE may also contribute to the development of trauma responses in parents. In addition, the current research also demonstrates that identifying a genetic diagnosis for a child’s DEE may be a psychological turning point for families. Consequently, early access to genetic testing is therefore important as it not only increases clinical utility, but also increases personal utility with early mitigation of family stress, trauma, and negative experiences.
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    A dialogic reading intervention incorporating AAC modelling and increased communication partner responsiveness during shared storybook reading with children with complex physical, cognitive, and sensory needs who use partner assisted scanning : a thesis presented in partial fulfilment of the requirements for the degree of Master of Speech and Language Therapy at Massey University, Albany, New Zealand
    (Massey University, 2018) Bayldon, Helen Jane
    Children with complex physical, cognitive and sensory needs (CPCSN) who use augmentative and alternative communication (AAC) may use partner assisted scanning (PAS) as their access method. This access method is not well understood and rarely features in existing literature. Children with CPCSN also seldom appear in the literature on aided language. Children who use AAC require significant intervention to build their receptive and expressive language skills and develop communicative competence. This research examined an evidence based dialogic shared reading strategy which incorporated aided language modelling and increased communication partner responsiveness with two children with CPCSN who use PAS to access a Pragmatic Organised Dynamic Display (PODD; Porter, 2012) communication book. The dialogic reading strategy prompted the communication partner to comment on the story, invite a communication turn, and respond contingently to the child. Aided language modelling and increased responsiveness are widely recognised as strategies which support language development in children who use AAC. Data were collected via communication frequency measures, field notes, and observations throughout the intervention process and an interview with the children’s teacher was conducted after the intervention was complete. The quantitative data were analysed using descriptive statistics and graphs, while the qualitative data were analysed using a general inductive approach. In an effort to integrate all of the data sources, the quantitative communication frequency measures were treated as deductive codes and embedded within the qualitative analysis. Two major themes emerged from the data. One theme described the practical challenges associated with the health and physical needs of the children that required consideration when providing intervention, as well as the changes to the clinical protocol that became necessary in response. In addition, the second theme outlined the effects of the intervention on the children’s communication skills. This included positive outcomes in skill areas such as turn taking, efficiency and conveying meaning. Recommendations for further research and clinical practice as a result of the research are presented.
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    An exploration of the relationship between TEACCH and a music therapy student's practice in a special education setting : an exegesis presented in partial fulfilment of the requirements for a degree of Master of Music Therapy at the New Zealand School of Music, Wellington, New Zealand
    (Massey University, 2012) Algie, Philippa
    The purpose of this qualitative study was to explore how aspects of Schopler’s TEACCH (Treatment and Education of Autistic and related Communication Handicapped Children) might be related to music therapy practice, using my own practice in an attached unit at a public primary school in New Zealand as a guide. Using a deductive exploratory research approach, I investigated whether and to what extent themes drawn from TEACCH literature were also evident in my music therapy data. This approach can also be described as secondary analysis of data. That is, clinical data relating to individual and group music therapy sessions with children who have autism was subjected to a process of thematic analysis to answer the research question. The TEACCH philosophy advocates a structured teaching approach in order to support students with autism to develop independence and skills for self management. This study finds that many elements of music therapy practice are closely linked to TEACCH values. Results from the study show that many TEACCH strategies align with fundamental aspects of music therapy, but the frequency and consistency of these similarities can vary due to the diverse strengths and needs of individuals with autism. As the process of comparing the TEACCH literature to my clinical practice developed and changed, some aspects of TEACCH became more integrated within my music therapy practice. The study also highlights the importance of balancing structure and freedom within the work and how musical structure or form can link with TEACCH strategies.
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    The use of music therapy to support speech and expressive language development for pre-school children with special needs : an exegesis submitted in partial fulfilment of the requirements for the degree of Master of Music Therapy at New Zealand School of Music, Massey University, Wellington, New Zealand
    (Massey University, 2011) Ludlam, Shari K
    Client-centred music therapy with individual pre-school children, involving playful but focused songs, behaviours and instrumental play, can enhance their speech and expressive language development. Four constructs were inductively created using the principles of grounded theory to represent how music therapy was used to support speech and expressive language development for pre-school children with special needs. Secondary analysis was undertaken of qualitative data drawn from usual clinical practice including clinical notes, reflective journal, audiovisual recordings, and notes from communications regarding two children from a student music therapist’s caseload at a specialist centre in New Zealand. A case vignette is presented to illustrate these four meaningful constructs of individual music therapy and concepts that constitute each are presented, along with sample quotations from the data, and are theoretically integrated within wider music therapy literature. A tree model was used to capture these findings, which further suggested ‘playfulness’ may be a central aspect of the work. Implications for my developing and future clinical practice of music therapy are discussed, along with directions indicated for future research.