Objectives: The objectives of this thesis were to: (i) understand the experiences of parents/caregivers of children with inherited metabolic diseases (IMDs), including perceptions of the health care system; and (ii) identify important patient/family-centred outcomes for measurement in future studies. Methods: A qualitative study used semi-structured interviews to gain in-depth insight into caregivers’ experiences. In an adapted meta-synthesis study, the qualitative findings were integrated with the results of related research to identify priority outcomes. Results: Twenty-one caregivers were interviewed. Participants described adjusting to the management of their child’s illness through specific coping strategies but reported stress related to social development. While generally satisfied with disease-specific care, participants described negative experiences with non IMD-specific health services. Health-related quality of life, parental coping, and specific experiences with health care emerged as high-priority outcomes. Conclusions: This project contributes to the limited published literature on caregiver experiences with pediatric IMD and informs future patient-centred research.

Please read the abstract (Summary) in the section 00front of this document / Dissertation (M Occ Ther)--University of Pretoria, 2007. / Occupational Therapy / unrestricted

This qualitative research study explored areas of similarity and contrast between a music therapy student's interpretations of selected audiovisual excerpts from music therapy sessions with a child with Autistic Spectrum Disorder (ASD), and his parent's interpretations of the same. A further feature of the study was investigating how these interpretations could inform the collaborative creation of a music activity for use in the home environment. Eight one-on-one music therapy sessions were conducted with an eight year-old boy with ASD at Alpha School in the Western Cape. The sessions were video recorded. Once the music therapy process was complete, four primary excerpts and five secondary excerpts were selected. Interpretations of the four primary excerpts were written by the music therapy student. A semi-structured interview consisting of two parts was then conducted with the child's parent. Part one involved eliciting the parent's interpretations of the four primary excerpts. Part two involved the viewing of the five secondary excerpts as part of a discussion between the music therapy student and parent, leading to the collaborative creation of a music activity for the home environment. The interpretations of the music therapy student and parent were matched with the music therapy student's interpretations for the purposes of qualitative content analysis and comparative analysis. Codes were derived for the interpretations, and then grouped into sub-categories and categories. Two overarching themes were then drawn from the data: operation of the music therapy student's contextual lens; and operation of the parent's lens. Within these two themes, different sub-themes were present: music therapy student’s reflexivity; focus on developing relationship; focus on clinical musical features; valuing offerings as musical; parent's pride in her child; noticing musical interactions; and focusing on successful interactions. These themes then implicitly informed the collaborative creation of a music activity for the home context. / Dissertation (MMus)--University of Pretoria, 2017. / Music / MMus / Unrestricted

Homework is given to learners on a daily basis to practice a specific skill, to foster personal development and to develop planning and time management skills. Although learners in the Foundation Phase are encouraged to do homework on their own, the support and involvement of their parents are required in order to develop personal skills and to maintain a healthy social relationship. As homework is a time of the day when parents usually interact with their children, their attitudes regarding homework in the Foundation Phase impact the way in which a learner will experience the homework process. Some learners experience homework as more pleasant when parents are involved, while others feel that homework disrupt families and causes conflict and tension. Research has indicated that the early years of a child’s life are critical for development, as this is the time when learners acquire fundamental concepts, skills and attitudes and when parents pass on values such as respect, tolerance and appreciation, all of which are important to laying down the foundation for lifelong learning. Parents’ beliefs and behaviours thus have an important role to play in a child’s development, and their attitudes and actions influence the nature and course of their children’s development. Parents and families need to be encouraged to assist their children with homework and to see this as the time of the day when they can bond with their children. / Dissertation (MEd)--University of Pretoria, 2014. / tm2015 / Educational Psychology / MEd / Unrestricted

Introduction and background: Family-centred care in the intensive care unit has increased steadily over the past three decades, based on the premise that the illness and health of an individual family member affects the whole family unit. Although widely researched there are still inconsistencies in implementing family-centred care, which influences the ability to transfer research findings into practice. Research has shown that recognising the role of family members in the critical care environment should be considered an essential component to caring for the critically ill patient. Although recommendations have been made for the implementation of familycentred care, it is not feasible for all recommendations to be adopted by nurses and healthcare professionals in a single ICU. Nurses and healthcare professionals need to customise strategies to an individual intensive care unit to improve family-centred care. Aim: The aim of the study was to explore and describe nurses, healthcare professionals and family members’ perceptions of family-centred care in the intensive care unit. Research design and methods: A quali-quanti research design was used. Participants included nurses, healthcare professionals and family members in the intensive care unit of a private hospital in Gauteng, South Africa. There were a total of sixty (60) participants who took part in the study. Nurses were selected using stratified random sampling, healthcare professionals were selected using total population sampling and family members were selected using purposive, maximum variation and convenience sampling. Data was collected over a period of one month by means of structured interviews using an associative group analysis technique. Participants were asked to write down free word associations in relation to the stimulus word “family-centred care” in order to explore and describe their perceptions of family-centred care in the intensive care unit as it is currently, as it could be in the “ideal world” and any gaps that exist around these perceptions. Results: Five themes were derived from the data: communication, environment, continuum of feelings, reflections and spiritual care. Conclusion: The implementation of family-centred care should involve all stakeholders in the intensive care unit in order to address inconsistencies in perceptions around family-centred care. Keywords: Associative group analysis, intensive care unit, family-centred care, healthcare professionals, nurses, perceptions, stakeholders / Dissertation (MNur)--University of Pretoria, 2019. / Nursing Science / MNur (Clinical) / Unrestricted

Objectives: The aim of this study was to gain a thorough understanding of parents’ perceptions of and experiences with the care networks surrounding young children (<=12 years) with inherited metabolic diseases (IMDs). Methods: In this mixed methods study, parent participants created a ‘care map’ depicting their child’s network of care providers. We analyzed care maps using social network analysis. A subset of parents participated in a semi-structured interview. We analyzed interviews thematically and integrated quantitative and qualitative results narratively. Results: Sixty parents contributed care maps and 10 participated in interviews. Parent-drawn care networks were large with few connections between providers. Parents felt responsible for creating and maintaining care networks and for coordinating care. They valued providers who trusted them as part of their child’s health care team. Conclusions: Our findings highlight the complexity of care for children with IMDs and can inform the design of interventions to improve care.

Neurodevelopmental disorders (NDD) refer to conditions that can be present during a child’s early developmental period, and are typically characterized by challenges in a child’s personal, social, academic, or occupational functioning. Autism spectrum disorder (ASD) is an example of NDD, impacting 1 in 66 children in Canada. While interventions vary across this heterogeneous group of impairments, everyday functioning is an important outcome to families. However, this concept of functioning needs further examination with respect to whether and how it is incorporated within the instruments and concepts used in family-centred services (FCS), and how this is understood by parents. This thesis is composed of two studies: a narrative review identifying function-focused measures published in the literature for children with NDD; and a qualitative study examining how parents of children with ASD perceive their child’s abilities in relation to family-centred services. Fourteen clinical measures were described in the review based on how they utilized the International Classification of Functioning, Disability, and Health (ICF) to describe child functioning. In the qualitative study, five themes (Parenting Approaches, Accepting My Child, Managing Child’s Challenges, Doing the Right Thing for My Child, and “The Disability Tag”) were identified as influential factors that can affect how parents perceive their child’s abilities and functioning. As the cultural shift within interventions for children with NDD continue to move beyond the historically prominent deficit-focused lens, and towards the integration of neurodiverse abilities, this study enables us to understand better how concepts of function-focused care are operationalized in family-centred services and intervention systems. / Thesis / Master of Science Rehabilitation Science (MSc) / To support the shift in health care that focuses on the abilities of children with neurodevelopmental disorders (NDD) rather than their ‘problems’ or ‘deficits,’ we need to further understand how family-centred services (FCS) can better fit this change in thinking. This thesis explores paediatric health care focused on addressing ‘everyday abilities’ for children with NDD in research and clinical practice over two studies. Study #1 reviews some of the current ways that everyday functioning is measured in paediatric health care, examining 14 clinical tools developed for children with NDD. Study #2 reports key patterns that describe the experiences of parents of children with autism, in regards to how they think about their child’s abilities, and the care their child receives. Overall, this thesis studied new ways that we can explore the abilities of children with NDD in FCS, specifically concerning how parents and clinicians describe and measure functioning.

Parent engagement in children’s developmental rehabilitation services is thought to be a fundamental component that is needed for children to reach their potential. This is especially true in the approach known as family-centre services – an approach that positions parents as partners in their child’s services. However, service providers and organizations can have difficulty engaging those parents who often miss their child’s appointments. These families are typically referred to as ‘hard-to-reach’, however this label may ascribe ‘blame’ to parents and lead service providers, researchers and policy makers to overlook the social, organizational, and economic barriers that can limit families’ use of services. Chapters 2-4, explore multiple avenues to contextualize parents’ attendance and engagement in children’s therapy services by applying family centred service tenants, Family Stress Theory, and ethical principles. These chapters lay the foundation for the grounded theory study presented in Chapter 5. This study, conducted with parents of children who use developmental rehabilitation services, describes the conditions that affect parent engagement and presents The Phoenix Theory of Parent Engagement to illustrate how parents attend, participate and engage in their child’s therapy service. These results are presented as a metaphorical journey through children’s developmental rehabilitation services in pursuit of child health and happiness. The implications of this theory are presented as they might be relevant to service providers, organizational leadership, and policy makers. These ideas are offered in an effort to inspire a coordinated effort to improve access and excellence in the provision of developmental rehabilitation services for children and families. / Thesis / Doctor of Philosophy (PhD) / Children’s developmental rehabilitation services are thought to be most effective when parents consistently attend, participate and engage in the service. When families do not consistently attend, participate or engage in services they can be labelled as ‘hard-to- reach’. Little is known about why families are hard-to-reach, if there are organizational barriers to service use, and how to promote engagement. This thesis provides a foundation for understanding parent engagement by exploring the clinical application of family-centred service, Family Stress Theory, and ethical principles. A grounded theory study is presented to contextualize parent engagement and explain how parents engage in their child’s developmental rehabilitation services. Service providers, organizational leadership, and policy makers can apply this theory to promote access and engagement in children’s developmental rehabilitation services.

Children and adolescents with cerebral palsy (CP) often receive botulinum toxin (BoNT-A) to manage spasticity. Our 2014 study developed an inventory of parents’ goals for BoNT-A treatment, but reasons for selecting these goals were unclear. The current study aimed to describe and categorize the effects of BoNT-A that parents observed according to WHO’s International Classification of Functioning, Disability and Health (ICF) framework. This qualitative study used interpretive description. Fifteen parents of non-ambulatory young people with CP (mean age 10.2 years, SD 3.9, 7 males) who received BoNT-A were recruited through McMaster Children’s Hospital’s Spasticity Management Clinic. Interviews were conducted in-person or by telephone for 20-60 minutes. The research team read the initial transcript, identified codes, and finalized the coding framework. Member checking was conducted to enhance trustworthiness. The key theme was that parents needed to find the right path to do what is best for their child. Parents described how they learned about both positive and negative effects of BoNT-A treatment: some parents emphasized the child’s pain during BoNT-A injections (negative), but also felt that BoNT-A was helpful for their child (positive). Most effects of BoNT-A were coded at the ICF activity level, such as dressing These observations helped inform parents’ decision to continue with BoNT-A and identify future goals. This study provides insight into parents’ journey of learning about BoNT-A and goal-setting for their child. Parents’ perspectives will be used to refine the 2014 inventory of goals to facilitate collaborative goal-setting for BoNT-A treatment. / Thesis / Master of Science (MSc) / Children diagnosed with cerebral palsy (CP) receive botulinum toxin (BoNT-A) as a treatment to reduce muscle tone. Current research on the use of BoNT-A injections in non-ambulatory children with CP is scarce and may not incorporate the perspectives of the family about their goals for treatment. This study interviewed parents to ask about the effects that they observed in their child after BoNT-A treatment. Fifteen parents were interviewed and all parents spoke about their journey of “finding the right path to do what is best for my child” as they learned about the possible effects of BoNT-A treatment for their child. By learning about parents’ journey, informational resources can be developed and shared with other parents about the effects of BoNT-A treatment. It is important to help parents understand these effects, which would allow them to discuss and identify appropriate goals with healthcare professionals in future BoNT-A treatment sessions.

Syftet: Syftet med studien var att undersöka arbetsterapeuters erfarenheter av att arbeta familjecentrerat inom strokerehabilitering. Metod: I studien användes en kvalitativ metod. Nio arbetsterapeuter intervjuades utifrån en semistrukturerad intervjuguide. Datamaterialet analyserades med kvalitativ innehållsanalys med induktiv ansats. Resultat: Analysen resulterade i två kategorier med tio underkategorier som beskriver arbetsterapeuternas erfarenheter av att arbeta familjecentrerat inom strokerehabilitering. Resultatet visade att arbetsterapeuterna i viss mån arbetar familjecentrerat. De har den strokedrabbade i huvudfokus men beaktar även de anhörigas behov och önskemål för att få ett fungerande vardagsliv för hela familjen. Dock finns det yttre och inre faktorer som hindrar arbetsterapeuternas möjlighet till att arbeta familjecentrerat i den utsträckning de önskar. Slutsats: Det kan vara svårt att dra en gräns mellan vad som är personcentrerat och familjecentrerat då arbetsterapeuterna har den strokedrabbade i fokus men behöver beakta anhöriga och familjen som helhet då de anses som viktiga. Studien kan inspirera arbetsterapeuter att applicera ett familjecentrerat arbetssätt och kan stödja dem i att implementera familjecentrerade åtgärder. Dock behövs det mer forskning som visar på effekten av familjecentrerade arbetsterapeutiska åtgärder vid stroke. / Aim: The aim of the study was to explore occupational therapists' experiences of working family-centred in stroke rehabilitation. Method: A qualitative method was used in the study. Nine occupational therapists were interviewed based on a semi-structured interview guide. The data was analyzed using a qualitative content analysis with an inductive approach. Results: The analysis resulted in two categories with ten subcategories that describe the occupational therapists' experiences of working family-centered in stroke rehabilitation. The results showed that the occupational therapists work family-centred to a certain extent. The stroke patient is the main focus during the rehabilitation, but the occupational therapists also consider the relatives needs and wishes in order to have a functioning everyday life for the whole family. But, there are external and internal factors that hinder the occupational therapists to work family-centered to the extent they wish. Conclusion: It can be difficult to separate person-centred approach and family-centred approach, because the occupational therapist has a main focus on the stroke patient but also needs to consider the relatives and the family as a whole. The study can inspire occupational therapists to apply a family-centered approach and support them in implementing family-centered interventions. However, more research is needed that shows the effect of family-centered occupational therapy interventions in stroke.