Philosophiae Doctor - PhD / Violence occurs in different environments, however, it is often found in the family with family members being the perpetrators. Family violence, as an integrative concept, is defined by few researchers or theorists, let alone conceptualised as a theoretical grounding for family-centred interventions aimed at violence in the home. However, family members are all affected in the act of any violence in the family, thus any intervention should include the whole family. A family-centred approach focuses on all family members to be included in the intervention and is acknowledged as the best method when trying to create an intervention for family violence. Thus, the aim of this study was to design an intervention programme for families experiencing family violence in order to reduce violence in the family. To create such a programme, intervention mapping was the chosen design for this study. Intervention mapping has five steps, 1.) Specify the programme’s goals into proximal programme objectives. In this stage, needs are identified; 2.) Selection of theoretical and practical strategies; 3.) Design the programme, 4.) Implementation of the programme, and 5.) Focus on anticipating process and effect evaluation. However, this study only focused on the first 3 steps of intervention development, namely, Phase I, a family violence needs assessment done to identify the problem, Phase II entailed a review done to determine appropriate theoretical and practical approaches for the intervention regarding family violence, and lastly, Phase III had been a Delphi study which aided in the design and development of the intervention. This study showed promising results with proven long-term positive effects in implementing a family-centred approach, and when coupled with a collaborative network of support services, political will, and community support, and has the ability to ensure continuity of care and improved functioning for families experiencing violence in the home.

>Magister Scientiae - MSc / Asthma education aims to reduce exacerbations by helping the patient or the caregivers to recognize early warning signs and act accordingly. However, a number of studies have indicated that childhood asthma morbidity is still rising. The goal of this research study is to explore the caregivers’ experiences of implementing the asthma education guidelines. The question to be answered by this research is: “How do caregivers experience the implementation of the guidelines for preventing an asthma attack?” Caregivers attending the asthma clinic at Red Cross War Memorial Children Hospital, Rondebosch were the study population who participated in this qualitative study. Purposive sampling was applied for recruiting participants to the study. A semi-structured, open –ended interview schedule was used to collect data from individuals during semi-structured, in-depth interviews. The data was analysed according to the guidelines of Creswell (2009). The results showed that care-givers found the education programme useful. They also reported that the education programme were offered at their level and was easy to understand. Care-givers indicated that the programme should continue because they learnt every time they attended and found that the practical demonstrations were particularly useful.

Background: About five percent of the infants being born in Sweden are cared for in a neonatal unit because of their prematurity. Breastfeeding and breast milk is considered to be the best nutrition for infants in general and for premature infants in particular. The premature infant, depending on how premature, may not be able to breastfeed effectively due to their immaturity. Stress, anxiety and fatigue are factors that affect breast milk production in a negative direction and these feelings are common in the neonatal unit. Aim: To illuminate mothers’ experiences of breastfeeding the premature infant in the neonatal unit. Method: A literature review of eight studies with a qualitative research approach, published between the year 2000 and 2012 was conducted. The studies have been analysed through a content analysis. Result: The findings showed that mothers perceived breastfeeding as a marker of motherhood and they felt guilt and began to question themselves as good mothers if it did not work. The mothers experienced lack of understanding, from the staff, concerning difficulties with breastfeeding, moreover the nurses where the ones who decided when and for how long the mothers should breastfeed. It also appeared that excessively focus on breastfeeding and breast milk by the staff resulted in objectification and the mothers would rather see breastfeeding as a natural process. Some mothers felt support and encouragement from the staff, while some mothers felt that the staff was constant present, which resulted in insecurity. Conclusion: Breastfeeding support for mothers of premature infants during their hospital stay is not satisfying and nurses’ actions have a major impact on mothers’ experiences. Therefore, nurses need to pay attention to mother’s individual needs of support and be aware of how her actions affect the mothers. Nurses also need to strength the mothers in their parent role so that they believe in their own ability to make breastfeeding work.

The unexpected admission of a child to the pediatric intensive care unit (PICU) creates feelings of uncertainty, distress, and fear and is a devastating experience for primary caregivers. Health care providers must address primary caregivers` concerns to enhance primary caregivers’ coping abilities. While a family-centred approach to care can assist in diminishing uneasy feelings experienced by primary caregivers, this philosophy of care is not consistently used in everyday practice. The PICU is a unique area of care that focuses on restoring the health of critically ill children with the use of machines and equipment. However, the use of technology for life sustaining measures creates additional responsibilities for health care providers, potentially compromising the quality of patient care. There is evidence to support that the involvement of the primary caregiver in the care of the critically child can address the gap that commonly exists between technology and holistic patient care. Furthermore, involvement in care increases primary caregivers’ satisfaction with the care their child receives and may also improve patient outcomes. Most importantly, the involvement of primary caregivers in the care of the critically ill child encompasses a family-centred approach to care. By increasing health care provider’s awareness of family-centred care within the PICU, primary caregiver’s needs may be more effectively addressed during this devastating and vulnerable time. Health care providers are key players in the promotion of family-centred care in the PICU; however, they are often faced with multiple challenges and barriers. Increasing health care providers’ awareness around the components of family-centred care can facilitate its implementation into practice by understanding how primary care givers define and experience ii family-centred care. Accordingly, a qualitative study guided by the philosophy of hermeneutic phenomenology was conducted to elicit a detailed description of the lived experience of family-centred care from the perspective of the primary caregiver. Participants in this study consisted of those primary caregivers who had previously had a child admitted to the PICU. Participants were recruited from a large mid-western hospital. In total nine primary caregivers ranging in age from 33 to 44 years with the mean age being 37 years participated in the study. Nine of the participants were mothers and two were fathers. All participants took part in semi-structured, open-ended interviews. A total of nine interviews were conducted with two of the interviews involving both parents. Demographic data and field notes were recorded. All field notes and interview data were transcribed. The transcripts were reviewed repeatedly for significant statements in an attempt to find meaning and understanding through themes. The data analysis revealed the essence of the lived experience of family-centred care to be being present. Three themes communicated the essence and included: (a) physical presence, (b) participation in care and, (c) advocating. Three themes from the data emerged around how primary caregivers defined family-centred care and included: (a) collaboration, (b) being updated and, (c) continuity of care. Finally, primary caregivers identified four conditions that needed to be in place to experience family-centred in the PICU which included: (a) being present for rounds, (b) caring behaviours, (c) feeling welcomed and, (d) support. The findings from this study may be used to guide policy around family-centred care and improve on, or bring new insights around interventions related to family-centred care. Future recommendation for nursing practice, education and research are presented.

The unexpected admission of a child to the pediatric intensive care unit (PICU) creates feelings of uncertainty, distress, and fear and is a devastating experience for primary caregivers. Health care providers must address primary caregivers` concerns to enhance primary caregivers’ coping abilities. While a family-centred approach to care can assist in diminishing uneasy feelings experienced by primary caregivers, this philosophy of care is not consistently used in everyday practice. The PICU is a unique area of care that focuses on restoring the health of critically ill children with the use of machines and equipment. However, the use of technology for life sustaining measures creates additional responsibilities for health care providers, potentially compromising the quality of patient care. There is evidence to support that the involvement of the primary caregiver in the care of the critically child can address the gap that commonly exists between technology and holistic patient care. Furthermore, involvement in care increases primary caregivers’ satisfaction with the care their child receives and may also improve patient outcomes. Most importantly, the involvement of primary caregivers in the care of the critically ill child encompasses a family-centred approach to care. By increasing health care provider’s awareness of family-centred care within the PICU, primary caregiver’s needs may be more effectively addressed during this devastating and vulnerable time. Health care providers are key players in the promotion of family-centred care in the PICU; however, they are often faced with multiple challenges and barriers. Increasing health care providers’ awareness around the components of family-centred care can facilitate its implementation into practice by understanding how primary care givers define and experience ii family-centred care. Accordingly, a qualitative study guided by the philosophy of hermeneutic phenomenology was conducted to elicit a detailed description of the lived experience of family-centred care from the perspective of the primary caregiver. Participants in this study consisted of those primary caregivers who had previously had a child admitted to the PICU. Participants were recruited from a large mid-western hospital. In total nine primary caregivers ranging in age from 33 to 44 years with the mean age being 37 years participated in the study. Nine of the participants were mothers and two were fathers. All participants took part in semi-structured, open-ended interviews. A total of nine interviews were conducted with two of the interviews involving both parents. Demographic data and field notes were recorded. All field notes and interview data were transcribed. The transcripts were reviewed repeatedly for significant statements in an attempt to find meaning and understanding through themes. The data analysis revealed the essence of the lived experience of family-centred care to be being present. Three themes communicated the essence and included: (a) physical presence, (b) participation in care and, (c) advocating. Three themes from the data emerged around how primary caregivers defined family-centred care and included: (a) collaboration, (b) being updated and, (c) continuity of care. Finally, primary caregivers identified four conditions that needed to be in place to experience family-centred in the PICU which included: (a) being present for rounds, (b) caring behaviours, (c) feeling welcomed and, (d) support. The findings from this study may be used to guide policy around family-centred care and improve on, or bring new insights around interventions related to family-centred care. Future recommendation for nursing practice, education and research are presented.

This three-stage study led to the development of a delineation model of occupational therapy practice for children with Attention Deficit Hyperactivity Disorder (ADHD). Stage one explored the current practice of occupational therapy in the United Kingdom (UK) by conducting a national survey of 282 paediatric occupational therapists. Results indicated that there were only a small number of occupational therapists (8.5%) working in a designated service for children with ADBD. This result suggested that occupational therapy for children with ADHD is a small field of practice. Stage two involved the consensus development on the role of occupational therapy for children with ADHD. Seventy-two paediatric occupational therapists participated in the study. The therapists' top six priorities of assessment and five priorities of intervention were identified. An occupational therapy delineation model of practice was developed by integrating data generated from this research, information from the literature review, and the author's clinical experience. In order to apply the model to clinical practice, a family-centred occupational therapy care package was developed. The third stage evaluated the process and outcome of the devised care package by conducting a multi-centred efficacy study. Twenty occupational therapists from the four countries in the UK attended a 3-day course to learn to implement the care package. Following their training, they submitted data on a sample of 20 children with ADHD. The majority of these children (85%) showed improvement in their behavioural patterns after the implementation of the care package. Over half of the cases (65%) had statistically significant changes of scores in the ADHD Rating Scales. Parents also reported experiencing good family-centred care delivered by the research therapists. The whole study makes a significant contribution to occupational therapy knowledge by creating a new delineation model of practice for which the research undertaken offers some validation.

Background: Family-centered web-based lifestyle interventions have the potential to be a scalable and cost-effective strategy to promote physical activity for children. However, program engagement and attrition are key challenges facing self-guided web-based interventions. Human email-mediated support may be a solution to these challenges. Currently, there is a lack of research examining whether the addition of human email-mediated support to self-guided family-centered physical activity interventions can improve engagement and intervention effectiveness. Thus, a feasibility study is needed to further understand ways to enhance web-based intervention delivery. Objective: (i) Evaluate the feasibility (recruitment, attrition, engagement, satisfaction) of a human email-mediated support compared to a self-guided web-based intervention (ii) examine the potential efficacy of a human-supported versus self-guided web-based intervention in improving children’s physical activity and parental support behaviours. Methods: Children aged 8-12 years old who did not meet the Canadian physical activity guidelines were recruited. Families were allocated to either 10-week human email-mediated support or self-guided program. The programs were developed using the multi-process action control (M-PAC) framework. The programs provided information and interactive online activities targeting healthier lifestyle behaviours. The human support group received multiple weekly support emails as needed. The self-guided only received one generic email per week. Both parents and children completed validated questionnaires assessing physical activity and parental support behaviours pre- and post- 10-week intervention. Descriptive statistics were used to analyze recruitment rate, attrition and website engagement. Repeated measures analysis of variance (ANOVA) were used to evaluate intervention effectiveness. Post-program interviews were added to further explore program satisfaction. Results: Fifty-one families contacted the researcher and eighteen families completed follow-up measures. The overall recruitment rate over a 16-month period was 41% (21/51). The attrition for human email-mediated support and the self-guided group was 10% and 18.2%, respectively. The attrition for both groups was 14% (3/21). The human email-mediated support group showed a significantly higher login frequency (4.7±2.1 vs. 2.3±1.4, respectively; p = 0.02), percentage of core pages accessed (35.8±19.6 vs. 13.1±18.2, respectively; p = 0.02), and total time spent in minutes (180.6±110.6 vs. 108.8±88.1, respectively; p = 0.01). The human email-mediated support group was more satisfied with the program compared to the self-guided group (p < 0.05). Both human support and self-guided groups improved their informational and appraisal-emotional support (p < 0.01; ηp2 = 0.9), parent self-efficacy to support their child’s physical activity (p = 0.03; ηp2 = 0.27), and child physical activity confidence (p = 0.04; ηp2 = 0.26). Children in the human email-mediated group showed a greater increase in the children’s physical activity intrinsic motivation (p = 0.02; ηp2 = 0.34) than self-guided group following the intervention. Conclusions: Study recruitment was a challenge. The human email-mediated support group had a lower attrition rate and a higher engagement than the self-guided group. Both interventions showed potential efficacy in improving physical activity measures. A full-scale study is recommended to confirm findings. / Graduate

Children with cerebral palsy (CP) and severe motor and speech impairments face problems in communication. Their capacities may vary across all domains of functioning, including mobility, selfcare and communication, which means these should be assessed independently, using valid and reliable instruments. The assessment of an unobservable construct like language comprehension skills is complicated because the completion of commonly available tests requires speech and motor skills. Using such tests with children with severe motor and speech impairments does not yield a valid, reliable, or representative result. To fill the gap in language assessment instruments, the Computer-Based instrument for Low motor Language Testing (C-BiLLT) was developed in the Netherlands between 2009 and 2014, and introduced intro clinical care in 2015. This test provides an accessible alternative to traditional language tests, allowing participation of children who cannot speak, finger point, or manipulate small objects. The overarching goal of the work in this thesis was to bring the C-BiLLT to Canada and to improve our understanding of the use of the C-BiLLT from a clinician and family perspective. To achieve this goal, the research described in this dissertation addressed objectives related to: 1) the cultural and linguistic adaptation of the test; 2) the psychometric properties of the new version; 3) the implementation of the test; and 4) the concept of family-centred care in relation to the C-BiLLT assessment. Three empirical studies were completed. The adaptation processes (including a validation study) that resulted in the Canadian English version of the C-BiLLT (C-BiLLT CAN) are described in Chapters 2 and 3. To understand the unique implementation attributes of the C-BiLLT, Chapter 5 describes a survey among users about their C-BiLLT use, and Chapter 6 describes an interview study in which clinician behaviours are explored into more detail. Finally, Chapter 7 describes the protocol for a qualitative study using interpretive description to understand parents’ experiences of the C-BiLLT assessment for their child with cerebral palsy and severe motor and speech impairments. The process to develop the C-BiLLT CAN comprised many phases, to ensure the linguistic and conceptual equivalence between the original C-BiLLT and the newly developed version. The benefits of a thorough cross-cultural adaptation process were confirmed by the results of the validity and reliability assessment of the C-BiLLT CAN in typically developing Canadian children. While future research is needed to confirm the feasibility and validity of the test for Canadian children with CP, our study showed that the new version is a robust instrument to assess spoken language comprehension and is available for use in clinical practice. The C-BiLLT CAN is a scientific innovation. How scientific innovations can be best implemented into clinical practice is studied by implementation science. An implementation science lens was applied to the current use of the C-BiLLT in three countries where the test is currently available in clinical practice: The Netherlands, Belgium, and Norway. The survey study described in Chapter 5 demonstrated that clinicians use the test with children with CP (the C-BiLLT’s target population), but also with children who have other diagnoses, including Down’s syndrome and autism spectrum disorder. This study also reported on the barriers and facilitators related to use of the C-BiLLT. We categorized the reported barriers and facilitators into four groups: 1) factors inherent to the C-BiLLT (i.e., its hardware, software, and content); 2) factors related to the child; 3) factors related to the clinician; and 4) factors related to the environment. To gain a better understanding of clinicians’ implementation behaviour and what is needed to facilitate behaviour change, fifteen survey respondents were interviewed individually. The COM-B model (Capability, Opportunity, Motivation – Behaviour) of behaviour change was the theoretical foundation for this study. This model describes how capability, opportunity, and motivation play a role in people’s behaviour. This study taught us how these components of behaviour interacted for clinicians who use, or attempt to use the C-BiLLT in clinical practice. The study highlights the need for support for the clinicians who use the C-BiLLT with children with severe motor and speech impairments. Compared to clinicians who use it with children with other disabilities, this group of clinicians faces more and more complex barriers. The studies described in Chapters 5 and 6 underline the importance of appropriately addressing barriers to C-BiLLT use. The growing emphasis on family-centred care in pediatric rehabilitation services inspired the conceptualization of the concluding study of this thesis, of which the protocol is described in Chapter 7. The aim of the described study is to advance Speech-Language Pathology (SLP) disciplinary knowledge around family-centred assessment for children with CP and severe motor and speech impairments. The protocol describes how we would like to address this aim by collecting parent experiences of their child’s C-BiLLT assessment. This thesis approached the C-BiLLT from the angles of cross-cultural adaptation, psychometrics, implementation, and family-centred care. The development of the C-BiLLT CAN provides the foundation for standardized and accessible assessment of spoken language comprehension for children with CP in Canada. Theory-informed knowledge translation strategies are suggested that align with real-world practice. Finally, suggestions for incorporating parents’ perspectives into the assessment process help to increase the value of the assessment for children, their families, and clinicians alike. / Dissertation / Doctor of Philosophy (PhD) / Cerebral palsy (CP) is the most common cause of physical disability in children. CP is the result of an injury to the brain before, during, or after birth and before the age of one year. While effects of the brain injury are different for each child, for many children with CP the main effect is difficulty with voluntary movement, including fine movements of the lips and tongue to make speech. Some children with speech difficulties can communicate by pointing or making gestures, but others have such severe movement difficulties that they cannot make those gestures either. These children with severe difficulties might understand what others are saying, but tests of understanding usually require the child to respond with some type of movement, so those tests do not work for children with severe movement limitations. The C-BiLLT, which is short for Computer-Based instrument for Low Motor Language Testing was developed to assess language comprehension in Dutch-speaking children with CP. The child who is being tested does not need to speak or to use other fine movements to respond. Instead, the child can respond using gross motor movements on a touch screen, input switches operated with anybody part, partner-assisted scanning and/or their own access method(s). The C-BiLLT could be useful for many children with CP around the world, but at present it is only available in Dutch and Norwegian. The aim of this study was to make the C-BiLLT suitable for children in Canada. We translated the items from Dutch to English, and replaced some items of the Dutch version so that they were familiar to Canadian children. Our study told us that this new Canadian version of the test worked as well as the Dutch test. We also learned that clinicians liked the test, and used it for children with other disabilities as well. Some clinicians had difficulties using the test, and said they needed more practice. In the future we need to make sure there are opportunities for clinicians to get more training, so they have the skills to give the test to any child who would benefit. One question we still have is how families feel when their child is being tested with the C-BiLLT. Language testing should not be scary or stressful for families or children, and we need to make sure families feel comfortable with any test. Thus, as the last step of this thesis, we designed a future study to ask parents questions about their experiences. We will use results of that study to make the C-BiLLT even more child- and family-friendly.

Yes / Currently there is no consensus regarding services required to help families with consanguineous marriages manage their increased genetic reproductive risk. Genetic services for communities with a preference for consanguineous marriage in the UK remain patchy, often poor. Receiving two disparate explanations of the cause of recessive disorders (cousin marriage and recessive inheritance) leads to confusion among families. Further, the realisation that couples in non-consanguineous relationships have affected children leads to mistrust of professional advice. British Pakistani families at-risk for recessive disorders lack an understanding of recessive disorders and their inheritance. Such an understanding is empowering and can be shared within the extended family to enable informed choice. In a three-site qualitative study of British Pakistanis, we explored family and health professional perspectives on recessively inherited conditions. Our findings suggest, first, that family networks hold strong potential for cascading genetic information, making the adoption of a family centred approach an efficient strategy for this community. However, this is dependent on provision of high quality and timely information from health care providers. Secondly, families’ experience was of ill-coordinated and time-starved services, with few having access to specialist provision from Regional Genetics Services; these perspectives were consistent with health professionals’ views of services. Thirdly, we confirm previous findings that genetic information is difficult to communicate and comprehend, further complicated by the need to communicate the relationship between cousin marriage and recessive disorders. A communication tool we developed and piloted is described and offered as a useful resource for communicating complex genetic information. / Department of Health

No / WHO advice suggests a family-centred approach for managing the elevated risk of recessively inherited disorders in consanguineous communities, whilst emerging policy recommends community engagement as an integral component of genetic service development. This paper explores the feasibility of the family-centred approach in the UK Pakistani origin community. The study took place within a context of debate in the media, professional and lay circles about cousin marriage causing disability in children. Using qualitative methods, a total of six single-sex focus group discussions (n = 50) were conducted in three UK cities with a high settlement of people of Pakistani origin. Tape-recorded transcripts were analysed using framework analysis. Kinship networks within Pakistani origin communities are being sustained and marriage between close blood relatives continues to take place alongside other marriage options. Study participants were critical of what was perceived as a prevalent notion that cousin marriage causes disability in children. They were willing to discuss cousin marriage and disability, share genetic information and engage with genetic issues. A desire for accurate information and a public informed about genetic issues was articulated whilst ineffective communication of genetic risk information undermined professionals in their support role. This study suggests a community that is embracing change, one in which kinship networks are still active and genetic information exchange is taking place. At the community level, these are conditions supportive of the family-centred approach to genetic testing and counselling.