No / 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. 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 service (FCS), which acknowledges the importance of family engagement in therapeutic processes and focuses on needs of all family members, is increasingly being recognized as an optimal care delivery model for families of children with developmental disabilities. However, services for families are oftentimes ‘child-centric’, wherein family members are seen as partners in therapy or care delivery only, while their own or family needs are not addressed. This arises from the lack of awareness of complex and highly individual family needs by professionals with whom they interact, but also from a significant lack of services oriented toward parent-specific needs in current delivery models. This thesis aims to address this knowledge gap and provides solutions for parental support in the context of pediatric developmental rehabilitation, which might also be applicable to other settings (e.g., community, education). The objectives of this thesis were: (a) to conduct a systematic review synthesizing randomized controlled trials aiming to address parents’ physical, psychological and socioeconomic well-being; (b) to perform cross-cultural and language adaptation and proof-of-concept pilot exploration of an innovative, strengths-based support program ‘ENabling VISions And Growing Expectation’ (ENVISAGE) for parents of children with neurodevelopmental disabilities in Croatia; (c) to refine the Croatian version of the program according to the pilot study results; (d) to run the first set of ENVISAGE workshops and evaluate their impact on Croatian parents’ perception of self, their child with a disability and their family; and (e) to learn about participants’ experience with the program. The findings show that interventions aiming to improve parents’ well-being have limited but promising effectiveness on parents’ health and well-being outcomes. ENVISAGE has proven to be a comprehensive, acceptable, usable, feasible and impactful program for parents of children with developmental disabilities in Croatia. / Dissertation / Doctor of Science (PhD) / Parents raising children with developmental disabilities have unique challenges in their parenting role, which might impact their health and well-being. However, there has been very little focus on parental and family needs in the context of pediatric developmental rehabilitation. Parents are often expected to focus on their child’s issues when their own support needs are usually also significant. This thesis aimed to address this research and practice gap through: a) evaluating best quality evidence on how to support parental well-being; and b) piloting a novel ‘early intervention’ support program for parents of children with disabilities, ‘ENabling VISions And Growing Expectation’ (ENVISAGE), in a new culture and language setting, Croatia. These findings have implications for spreading awareness of innovative programs to improve well-being of parents of children with developmental disabilities in various sectors (e.g., healthcare, community).

Program evaluation is becoming increasingly important in pediatric rehabilitation settings that adhere to FCS philosophy. This philosophy recognizes that each family is unique, that parents know their children best, and that optimal child functioning occurs within a family context. However, researchers know little about the specific evaluation activities occurring in these settings or the extent to which evaluators uphold FCS philosophy in their activities. The primary goal of this study is to examine the strengths, limitations, and consequences of current evaluation practice, including its compatibility with FCS philosophy. As a secondary goal, the study aims to understand the promise and prospects of alternative evaluation approaches that, in theory, are compatible with FCS philosophy. To address these goals, this study uses a mixed-methods approach and includes three phases. Phase 1 involves a survey of staff members involved with program evaluation at 15 Canadian pediatric rehabilitation centres. It determines the level of program evaluation occurring in these settings, verifies on the motivation for evaluation, and describes the degree to which evaluation activities are consistent with the FCS philosophy. Phase 2 involves interviews with staff members and explores the values, factors, and conditions that support and inhibit the evaluation of family-centred programs in pediatric rehabilitation settings as well as the benefits and limitations of using mainstream practices for evaluating these programs. Phase 3 then uses focus groups with staff members and interviews with parents to explore how the evaluation of family-centred programs can be improved as well as to identify the compatibility and practicality of using alternative evaluation approaches within these settings. Overall, the findings show that the amount of evaluation activities occurring within these centres is variable; that the majority of individuals working in program evaluation do not have formal training in it; and that the centres have limited resources for evaluation. The findings also demonstrate that participatory evaluation approaches are more compatible with FCS philosophy but that it might be difficult to implement such approaches given the limited resources and diverse characteristics of rehabilitation settings. In light of these circumstances, the study notes ways for improving program evaluation activities.

Pakistani families with disabled children are among the most disadvantaged population groups in the UK. Previous research has indicated difficulties with accessing support services as well as problematic attitudes towards disability within the Pakistani community. As no substantial improvement in their situation was evidenced since early studies in the 1990s, a participatory action research study was undertaken with six Pakistani families to explore how an actionoriented, emancipatory approach could facilitate them to explore their support needs and how these might be met, in further depth. An occupational justice perspective was used to clarify how cultural and familial expectations influenced family members’ occupational balance and well-being. After an exploratory phase in which all family members were interviewed and family interactions observed in their own homes, three action research groups were formed for women, men and children respectively. Each group carried out their own action research around their chosen topic. Through participation in the project the participants gained important skills as well as a better understanding of their situation and how they could be more proactive in improving it. Furthermore, the fact that all family members were actively involved in the project helped them to start implementing changes in behaviour and communication at home. Key findings of the study were that the importance of faith in accepting the disabled child and dealing with negative community attitudes needs to be recognised and fostered; that the social model of disability needs to be more explicit about the influence of religion and culture on the lived experience of disabled people; that the central support need of parents is for practitioners to build up a supportive relationship with them as persons in their own right; and that (the lack of) belongingness had a very significant impact on the disabled child’s and their mothers’ well-being.

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.

Program evaluation is becoming increasingly important in pediatric rehabilitation settings that adhere to FCS philosophy. This philosophy recognizes that each family is unique, that parents know their children best, and that optimal child functioning occurs within a family context. However, researchers know little about the specific evaluation activities occurring in these settings or the extent to which evaluators uphold FCS philosophy in their activities. The primary goal of this study is to examine the strengths, limitations, and consequences of current evaluation practice, including its compatibility with FCS philosophy. As a secondary goal, the study aims to understand the promise and prospects of alternative evaluation approaches that, in theory, are compatible with FCS philosophy. To address these goals, this study uses a mixed-methods approach and includes three phases. Phase 1 involves a survey of staff members involved with program evaluation at 15 Canadian pediatric rehabilitation centres. It determines the level of program evaluation occurring in these settings, verifies on the motivation for evaluation, and describes the degree to which evaluation activities are consistent with the FCS philosophy. Phase 2 involves interviews with staff members and explores the values, factors, and conditions that support and inhibit the evaluation of family-centred programs in pediatric rehabilitation settings as well as the benefits and limitations of using mainstream practices for evaluating these programs. Phase 3 then uses focus groups with staff members and interviews with parents to explore how the evaluation of family-centred programs can be improved as well as to identify the compatibility and practicality of using alternative evaluation approaches within these settings. Overall, the findings show that the amount of evaluation activities occurring within these centres is variable; that the majority of individuals working in program evaluation do not have formal training in it; and that the centres have limited resources for evaluation. The findings also demonstrate that participatory evaluation approaches are more compatible with FCS philosophy but that it might be difficult to implement such approaches given the limited resources and diverse characteristics of rehabilitation settings. In light of these circumstances, the study notes ways for improving program evaluation activities.

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.

Program evaluation is becoming increasingly important in pediatric rehabilitation settings that adhere to FCS philosophy. This philosophy recognizes that each family is unique, that parents know their children best, and that optimal child functioning occurs within a family context. However, researchers know little about the specific evaluation activities occurring in these settings or the extent to which evaluators uphold FCS philosophy in their activities. The primary goal of this study is to examine the strengths, limitations, and consequences of current evaluation practice, including its compatibility with FCS philosophy. As a secondary goal, the study aims to understand the promise and prospects of alternative evaluation approaches that, in theory, are compatible with FCS philosophy. To address these goals, this study uses a mixed-methods approach and includes three phases. Phase 1 involves a survey of staff members involved with program evaluation at 15 Canadian pediatric rehabilitation centres. It determines the level of program evaluation occurring in these settings, verifies on the motivation for evaluation, and describes the degree to which evaluation activities are consistent with the FCS philosophy. Phase 2 involves interviews with staff members and explores the values, factors, and conditions that support and inhibit the evaluation of family-centred programs in pediatric rehabilitation settings as well as the benefits and limitations of using mainstream practices for evaluating these programs. Phase 3 then uses focus groups with staff members and interviews with parents to explore how the evaluation of family-centred programs can be improved as well as to identify the compatibility and practicality of using alternative evaluation approaches within these settings. Overall, the findings show that the amount of evaluation activities occurring within these centres is variable; that the majority of individuals working in program evaluation do not have formal training in it; and that the centres have limited resources for evaluation. The findings also demonstrate that participatory evaluation approaches are more compatible with FCS philosophy but that it might be difficult to implement such approaches given the limited resources and diverse characteristics of rehabilitation settings. In light of these circumstances, the study notes ways for improving program evaluation activities.