>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.

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.

No / Background: Almost 50,000 children and young people are affected by life-limiting conditions in the United Kingdom, around a third of which use children's hospices. Anecdotal evidence suggests that cannabinoid-based medicines (CBMs), specifically cannabis oil (CO), are being used by families with increasing frequency to manage distressing symptoms. The use of most nonprescription CBMs in the United Kingdom remains illegal. Objective: The objective of the study was to identify the prevalence of CO use by families who use children's hospices in the United Kingdom, and the approaches taken by those services to manage it. Design: An electronic survey was sent to each of the 54 children's hospices in the United Kingdom between May and July 2018, comprising 10 questions. Results: Forty children's hospices from across the four countries of the United Kingdom responded to the survey, representing 74% of British children's hospices. About 87.5% of hospices knew of children who use CO therapeutically. Sixty-nine percent of those hospices have received requests to administer CO during an episode of care. Approaches by organizations around CO management varied across the sectors, including arrangements for storage, administration, and recording of its use. Hospices highlighted how the lack of available guidance made decision making more challenging. Only a third of responding organizations routinely questioned families about the use of cannabis when prescribing medicines. Conclusion: CO is used extensively by children who use children's hospices. Despite recognizing the use of CO, many hospices are unable to support it. There is a need for clear guidelines on how hospices should approach the care needs of children, allowing hospices to meet the needs of children who use CO, and families in a safe, consistent, and relevant way, safeguarding all children, families, and professionals within the organization.

The purpose of this qualitative study was to supply preliminary insights into improving the support of visiting families with children who are minors during the intensive care unit stay (ICU) of an adult family member. Hospitals often restrict children from visiting in ICUs; however, a review of the literature revealed that despite the prevalence of this policy, there has been little research into whether visiting is harmful or supportive (Liu et al., 2013; Manici & Ghillani, 2018). Although family-centred care (FCC) is considered beneficial for adult family members (Davidson et al., 2012; Eggenberger & Nelms, 2007), there is little evidence that policymakers have considered the involvement of children during an ICU stay (Knutsson & Bergbom, 2007). In this study, seven families shared their experiences of the critical illness of a loved one. Using a constructionist lens, this study explored the interaction between the gathered stories and the policies and practices associated with child and adult family members visiting adult critical care contexts in British Columbia (BC), Canada. This study found that the involvement of children in a family illness event is important and that tailoring involvement to the individual preferences of the child, and their family, is crucial. While navigating an ICU stay, families may benefit from a collaborative approach between the child, their caregiver/s, and a member of the ICU team. The goal of this research is that it will resonate with its readers and move people to deeper curiosity and further study. This exploratory study led to a list of seven preliminary recommendations that could inform the interdisciplinary policies and practices associated with supporting child and adult family members as visitors in an ICU. Further research is needed to explore the experiences of families with children more fully, and to understand the systems that need to be in place to support them during the critical illness of a loved one. / Graduate / 2021-12-16

Family centred care is a concept espoused to be fundamental to achieving excellence in paediatric nursing. Although it is recognised that family centred care includes the child's rights to self determination the focus of this study is parental participation in the decision making and care of their hospitalised child at a partnership level. This is based on negotiation and requires frequent, effective communication between parents and nurses and for each to respect the other's knowledge and appreciate the other has something to offer in the relationship which will benefit the child. The purpose of this study was to identify whether family centred care was occurring in paediatric settings in rural Western Australia and explored parents' and nurses' perceptions of the concept. A questionnaire was designed based on the literature and common themes identified from focus groups. Convenience sampling was used and 15 rural hospitals facilitated participation of 243 parents who had a child under ten years of age hospitalised and 108 nurses who cared for children. Exploratory factor analysis identified four subscales from the parents' questionnaire and three subscales from the nurses' questionnaire which measured separate concepts of family centred care. Descriptive statistics were generated for each subscale, and independent t-tests, ANOVA and correlations were examined between independent variables and subscales of family centred care. There was a statistically significant difference in scores for parents' perceptions of `child friendly environment' between regional and district hospitals. Those parents who did not have social support scored a statistically significantly lower mean score for `respect as parent'. Nurses in district hospitals generated statistically significantly higher mean scores for `family focussed hospital' than those who worked in regional hospitals. / Parents and nurses both perceived that parents wanted to continue parenting their hospitalised child, however parents wanted to provide more nursing care than was perceived by nurses. Nurses' perceptions of delivering family centred care were greater than the perceptions of parents receiving it, however they were consistent in items that were scored low. Nurses did ask parents about the amount of participation they wanted in their child's care on admission however, it was not done on a regular basis. Parents perceived that nurses were unaware of other things that parents needed to attend to while their child was hospitalised and therefore did not enable parents to attend to these needs. More frequent negotiation of roles between parents and nurses by communicating each shift, or at least daily, could narrow the gap between differing perceptions in care provision and also enable parents to attend to their other roles thereby reducing their levels of physical and emotional stress.

Bakgrund: Närstående till en person som vårdas på en intensivvårdsavdelning fyller en viktig funktion för dennas sjukdomsförlopp, utfall och rehabilitering. Närstående har själva behov under denna tid och det är viktigt att även dessa tillgodoses av sjuksköterskor. Behovet av information har i många studier påvisats vara det mest betydelsefulla för närstående.   Syfte: Syftet med studien var att undersöka sambandet mellan närståendes uppfattning om information korrelerat till deras uppfattning om bemötande, förtroende, stöd och delaktighet. Vidare var syftet att belysa närståendes upplevelser av omhändertagandet på en intensivvårdsavdelning. Metod: Studien var en enkätundersökning med mixad metod. Resultat: 206 enkäter skickades ut och 47 % (n=97) av respondenterna valde att delta. Resultatet visade att det fanns svaga till starka samband mellan information och bemötande/förtroende/stöd/delaktighet. Starkast samband sågs mellan variablerna information och förtroende samt mellan information och delaktighet. Respondenternas upplevelser resulterade i två teman; information och bemötande. Närstående upplevde att information var fundamentalt inom intensivvården och den önskades vara ärlig, tydlig och ges kontinuerligt. Respondenterna upplevde att bemötandet de fått under intensivvårdtiden både varit positivt och negativt. Slutsats: Positiva korrelationer har påvisats mellan information och bemötande, förtroende, stöd och delaktighet. Studien belyser även att närståendes upplevelse av omhändertagandet kan påverkas både positivt och negativt av information och bemötande. Kännedom om detta samt med hjälp av en familjefokuserad omvårdnad kan möjliggöra för intensivvårdssjuksköterskan att främja närståendes upplevelse och uppfattning under vårdtiden. / Background: Relatives to a person who is cared for in a critical care unit fill an important function for the patient’s disease progression, outcome and rehabilitation. Relatives themselves have needs during this period and it is important that also their needs are met by nurses. The need to receive information has been shown to be the most meaningful to relatives. Aim: The aim of the study was to examine whether relatives’ perception of information correlated with their perception of treatment, trust, support and participation. Furthermore, the aim was to highlight the way in which relative’s experience care at a critical care unit. Method: The study was conducted as a mixed method survey. Results: 206 surveys were sent out and 47% (n=97) of the respondents chose to participate. The result indicated that there are weak to strong correlation between information and treatment/trust/support/participation. The strongest correlation was observed between the variables information and trust, as well as information and participation. The respondents’ experiences resulted in two themes; information and treatment. Relatives perceived information as fundamental within critical care and preferred it to be honest, clear and continuous. The respondents had experienced the treatment they received during the critical care period as both positive and negative. Conclusion: Positive correlations has been found between information and treatment, trust, support and participation. The study also highlight that a relative’s experience of the care is impacted both positively and negatively by information and treatment. Knowledge about this and with help from a family focused care can make it possible for critical care nurses to encourage relative’s experience and perception about the time of care.

Bakgrund: Demenssjukdomar är vanligt förekommande i Sverige och prevalensen beräknas öka. Många personer med demenssjukdom bor kvar i hemmet och anhöriga tar ett stort ansvar för vården av dessa personer. Att vara anhörigvårdare till en person med demenssjukdom innebär påfrestningar både fysiskt, psykiskt och socialt.Syfte: Att beskriva anhörigas upplevelser av att vårda en person med demenssjukdom. Metod: Litteraturöversikt med induktiv ansats baserad på 15 vetenskapliga artiklar med kvalitativ design, som har analyserats med Fribergs femstegsmodell. Resultat: I resultatet framkom huvudkategorierna: En förändrad livssituation, Att acceptera förändringen samt Anhörigas behov. Det framkom även åtta subkategorier: Förändrade roller i relationen, Förändrat socialt liv, En förändrad framtid, Förändrade känslor, Att acceptera rollen, Att känna meningsfullhet, Behov av egentid samt Behov av stöd.Slutsats: Anhöriga är i behov av stöd från hälso-sjukvården. Sjuksköterskan har en nyckelroll i att stödja anhöriga vilket kräver goda kunskaper om demenssjukdomar och om anhörigas upplevelser av att vårda en person med demenssjukdom. / Background: Dementia are common in Sweden and the prevalence is expected to increase. Many people with dementia live in their homes and relatives are responsible for the care of these people. Being a caregiver for a person with dementia causes great pressures both physically, psychologically and socially. Aim: To describe relatives experiences of caring for a person with dementia. Method: Literature review with inductive approach based on 15 scientific articles with qualitative design, which has been analysed with Friberg's five-step model. Findings: In the results, the main categories were: A changed life situation, To accept the change and Relatives needs. There were eight subcategories: Changed Role in Relationship, A changed social life, A changed future, Emotional attendance, Accepting the role, Feeling meaningful, Need to be for themselves, and Need for support. Conclusion: Relatives are in need of support from the health care. The nurse has a key role in supporting the relatives, which requires good knowledge of dementia and relatives' experiences of caring for a person with dementia.