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.

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.

Yes / To increase understanding of grandparental grief following the death of a grandchild from a life-limiting condition. Meta-ethnography. Academic Search Complete CINHAL, Embase, psycINFO, PubMed and Web of Science, supplemented by manual search strategies (in 2015, updated 2018). Studies were appraised and synthesized using the principles of meta-ethnography. Three superordinate themes were identified: 'influence of the relationship with their grandchild', 'influence of the relationship with the grandchild's family' and 'pain'. The simultaneous, multigenerational position of grandparents meant individuals experience emotional pain from witnessing the experience of family members. Many factors that contribute to the bereavement experience of grandparents are outside of their control. The roles, positions, and support needs of grandparents need to be acknowledged to better meet their needs as parents, grandparents, and individuals who have experienced a child death. / Hospice UK, RCN Foundation

No / Hospices for children and adolescents in the United Kingdom provide care to the bodies of deceased children, in specially-designed chilled bedrooms called ‘cool rooms’. In an effort to develop resources to support hospice practitioners to provide this specialist area of care, the study aimed to identify the factors that influence decision-making when moving and handling children’s bodies after death in a hospice cool bedroom. An internet-based survey was sent to all practitioners employed by one children’s hospice. A total of 94.9% of eligible staff responded (n=56). An inductive approach to thematic analysis was undertaken, using a six-phase methodological framework. Three core themes were identified that inform practitioners’ perception of appropriateness of moving and handling decisions: care of the body, stages of care, and method of handling. The complexity of decision-making and variation in practice was identified. Practitioners relied on both analytical and initiative decision-making, with more experienced practitioners using an intuitive approach. Evidence-based policy and training influence the perception of appropriateness, and the decisions and behaviour of practitioners. The development of a policy and education framework would support practitioners in caring for children’s bodies after death, standardising expectations and measures of competence in relation to moving and handling tasks.

Yes / perinatal palliative care services are increasingly available globally, offering a range of clinical and psychological support services to families during pregnancy, in the neonatal period and following the death of a baby with a life-limiting or life-threatening condition. Little is understood about the role of children’s hospice care and how it contributes to effective perinatal palliative care. Design: The study aims to answer the question ‘what is the role of children’s hospices in the provision of perinatal palliative care and advance care planning in the United Kingdom?’ Methods: An electronic survey was sent to all 54 children’s hospices in the United Kingdom between May and June 2022. Results: 30 hospices responded, representing 54% of the sector. All regions of all four counties are represented. Numbers of referrals to hospices for perinatal palliative care have increased significantly over the last five years. Hospices provide a range of services for families and babies, usually from the point of diagnosis or recognition of a life-limiting or life-threatening condition, underpinned with counselling and emotional support. Hospices worked with a range of professionals and services, most commonly fetal medicine and neonatal services. Advance care plans were an important element of effective perinatal palliative care, strengthening parent-professional and interprofessional relationships. Conclusion: Children’s hospice services play an important and growing role in the perinatal care of babies and families following the diagnosis or recognition of a life limiting or life-threatening condition. The family centred approach to care, from a broad, biopsychosocial perspective means that hospices make a unique and meaningful contribution to both the clinical and psychological needs of families. / University of Bradford. Grant Number: DA5151. SURE Research Project

The aim of this study is to analyse the discourses drawn upon by community paediatric nurses in relation to children’s rights to health. The philosophy of Michel Foucault has been used to underpin the analysis of the interviews and exemplars of five experienced community nurses, revealing conflicting power relationships and discourses. Rights are formalised morality and so from a children’s rights perspective, discourses reflect both the moral and ethical positions of the nurses. Children are constructed as developing human beings whose moral status gradually changes and who, through a lack of developmental autonomy, entrust their decision-making to their representatives (parents and caregivers) as their trustees. Rights are correlative with the obligations and duties toward children by both families and society. Society constructs legislative and politically organised structures to govern raising children because children are an intrinsic social concern. Whilst representing society’s interest in children’s rights to health, nurses in the home act as a conduit for multiple governing structures. The nurses in this study construct their “truths” and knowledge about children’s health rights from nursing, medicine, law, education, and social policy. However, the values of individual parents can conflict with universal values for children’s health and wellbeing. Therefore representing society positions nurses as “agents of the state”, a role that potentially holds power over parents and children and leads to the epithet of “the health police”. Within the institution of the family, and in the privacy of the home, there are also mechanisms of power that can resist the mechanisms of the state and its representatives. Therefore the discourse “it takes a village to raise a child” competes with the “my home is my castle” discourse. Nurses negotiate a fine balance between these power relations. Nurses are challenged with using power productively to promote children’s rights whilst respecting the role of parents and families. I argue that children’s rights are central to the moral and ethical work of nurses but that such work is often obscured and invisible. I propose that children’s community nurses are excellent at negotiating networking and connecting at a micro level, but need to create a more sophisticated and cohesive entity at a macro level to become fully political children’s rights advocates.

The aim of this study is to analyse the discourses drawn upon by community paediatric nurses in relation to children’s rights to health. The philosophy of Michel Foucault has been used to underpin the analysis of the interviews and exemplars of five experienced community nurses, revealing conflicting power relationships and discourses. Rights are formalised morality and so from a children’s rights perspective, discourses reflect both the moral and ethical positions of the nurses. Children are constructed as developing human beings whose moral status gradually changes and who, through a lack of developmental autonomy, entrust their decision-making to their representatives (parents and caregivers) as their trustees. Rights are correlative with the obligations and duties toward children by both families and society. Society constructs legislative and politically organised structures to govern raising children because children are an intrinsic social concern. Whilst representing society’s interest in children’s rights to health, nurses in the home act as a conduit for multiple governing structures. The nurses in this study construct their “truths” and knowledge about children’s health rights from nursing, medicine, law, education, and social policy. However, the values of individual parents can conflict with universal values for children’s health and wellbeing. Therefore representing society positions nurses as “agents of the state”, a role that potentially holds power over parents and children and leads to the epithet of “the health police”. Within the institution of the family, and in the privacy of the home, there are also mechanisms of power that can resist the mechanisms of the state and its representatives. Therefore the discourse “it takes a village to raise a child” competes with the “my home is my castle” discourse. Nurses negotiate a fine balance between these power relations. Nurses are challenged with using power productively to promote children’s rights whilst respecting the role of parents and families. I argue that children’s rights are central to the moral and ethical work of nurses but that such work is often obscured and invisible. I propose that children’s community nurses are excellent at negotiating networking and connecting at a micro level, but need to create a more sophisticated and cohesive entity at a macro level to become fully political children’s rights advocates.

The critical illness/injury of a family member warranting an admission to an A&E unit can predispose a family to psychological and physiological needs. The patient-centred-care approach rendered in an A&E unit focuses on the patient as a priority, resulting in the family’s needs being neglected during a crisis situation. Based on the Family Resilience Framework, the aim of this study was to assess the needs of the families of the critically ill/injured patients in an A&E unit. Based on the identified needs, recommendations were made with regard to a family-centred-care approach as a relevant resilience-based strategy suitable to these families. The research adopted a quantitative, non-experimental, exploratory and descriptive design. A purposive convenience sample of 100 participants was recruited over a period of four months. The data were collected by means of a structured interview schedule. The study revealed that the five main domains of family needs identified by the respondents as very important was, in order of priority, the need for communication, support, meaning, comfort and proximity. The findings supported the need to initiate and foster a family-centred-care approach in the A&E unit, which could guide the nurse practitioners in supporting the affected families, which in turn could enable these families to become resilient. Copyright / Dissertation (MCur)--University of Pretoria, 2010. / Nursing Science / unrestricted

The Charter of rights of children in hospital (the EACH Charter) is an international document authored by the European Association for Children in Hospital (EACH) in the eighties of the twentieth century. The Charter can be perceived as a response to the fact that a child's stay in hospital - and paediatric hospital as an institution - is strongly influenced and formed by economical, technological and administrative aspects prevailing over the ethical ones. The Charter highlights specific situations where the health care profession - by neglecting children's needs and ignoring and/or tolerating avoidable suffering - becomes unethical. The aim of my thesis is to scrutinize the ethical appeal of the EACH Charter and to explore the Charter's ethical implications for contemporary paediatric practice in the Czech Republic.