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.

Thesis (Ph.D. (Public Health)) -- University of Limpopo, 2022 / Background: The increase in diabetes prevalence is often accompanied by comorbidities and complications, which negatively impact on the quality of life of patients. Poor dietary intake and physical inactivity lead to obesity and contribute to diabetes prevalence and poor outcomes. Non-diabetic family members of patients are already at risk of developing diabetes due to a family history of the disease. Therefore, this study was aimed at developing and implementing a family-centred nutrition and exercise diabetes care programme for better outcomes and fewer new cases. Methodology: This study employed a mixed method approach, where convergent parallel design was used where quantitative and qualitative data were collected. For the quantitative strand, 400 subjects participated in the study (i.e., 200 diabetes patients and 200 family members). Diabetes patients were selected using stratified random sampling from rural clinics, while family members were selected using the sampled patients. For the qualitative strand, 17 diabetes patients were purposively sampled, and data saturation was reached. Two set of questionnaires (for patients and family members) were used to collect quantitative data, while one-on-one interviews with patients were used to collect qualitative data. Phase 2 involved development and validation of an intervention program. The validation involved a process where professional experts were used for validation using Delphi technique. Phase 3 included implementation and program evaluation wherein post-implementation quantitative survey was conducted on 100 participants (50 patients and 50 family members), who were purposively sampled from list of those who participated in Phase 1. Quantitative data was analysed using SPSS Software v27.0, while qualitative data analysed using 8 Steps of Tesch’s inductive, descriptive open coding technique. Results: In Phase 1, the results showed that over half of patients (57%), compared to 38% of family members, were obese; and that most patients (75%), compared to 55% of family members, had abdominal obesity. Close to half of patients (45%), compared to 31% of family members, had overall excellent nutrition and exercise diabetes care knowledge. The majority of patients (73%), compared with 25% of family members, had overall positive attitudes towards nutrition and exercise diabetes care. Only 15% of diabetes patients compared with 9% of family members had overall good practice vi related to nutrition and exercise diabetes care. In Phase 3, it was reported that the majority of both patients (84%) and family members (100%), respectively indicated that the organization of the educational intervention was commendable. All patients (100%) and family members (100%) indicated that the health education strategies used stimulated their interest and were very helpful to their learning. Conclusion: A family-centred nutrition and exercise diabetes care programme was developed, implemented and evaluated. Diabetes patients and family members indicated that the intervention was helpful to their learning and met their expectations. Therefore, there is an urgent need for the adoption of the family-centred nutrition and exercise diabetes care programme to achieve healthy eating and increased physical activity. The adoption of healthy eating and physical activity among diabetes patients and their non-diabetic family members will subsequently lead to better diabetes outcomes, and minimizing new cases, respectively.

<p>Intervention fidelity examines the degree to which an intervention is delivered as planned. Generic fidelity measures incorporate the active ingredients of more than one intervention and characteristics common to all interventions. Three studies were conducted to define the active ingredients of intervention for children with physical disabilities and generate a generic fidelity measure. These studies involved: (1) describing generic fidelity measures; (2) generating essential attributes of paediatric rehabilitation; and (3) differentiating between two interventions to consistently rate the behaviours of the therapist, child and parent.</p> <p>(1) In a narrative review of generic fidelity measures, five measures were identified within the psychotherapy literature. These measures presented a variety of approaches to examine fidelity, described psychometric property standards, and highlighted 37 non-specific intervention items that were relevant to paediatric rehabilitation.</p> <p>(2) A consensus process with eight experts and interviews with seventeen clinicians working with children with physical disabilities generated 35 attributes that highlighted the general observed therapist and client behaviours essential within a successful intervention session.</p> <p>(3) The Paediatric Rehabilitation Observational measure of Fidelity (PROF) was developed (30 items) to evaluate specific and non-specific behaviours within two occupational therapy and physiotherapy interventions for children with cerebral palsy. Six trained raters examined 25 intervention videos for psychometric testing. Results indicated that the PROF demonstrated good to excellent Inter-rater reliability and early construct validity.</p> <p>These studies present an important starting point to observe and measure the active ingredients within paediatric rehabilitation, incorporating its dynamic nature involving the child and parent within the therapy process.</p> / Doctor of Philosophy (PhD)

Mothers typically act as gatekeepers to health care for their children, yet many Indigenous mothers report poor access to health services. Inadequate access to health services may contribute to the poor health outcomes experienced by Indigenous infants. Understanding how urban-dwelling Indigenous mothers experience selecting and using health services to meet the health needs of their infants is important to informing how health services can best support the needs of these families. This study employs qualitative interpretive description methodology guided by the Two-Eyed Seeing framework and Andersen’s Behavioural Model of Health Services Use. Interviews facilitated by ecomaps and a discussion group were conducted with 19 Indigenous mothers living in Hamilton with infants under the age of 2 years. Additional interviews with 12 health providers added further context to the mothers’ experiences. Results relate to three domains of health service use: primary care, acute care and early childhood health promotion services. Findings suggest that health providers can improve the access and use of health services by Indigenous mothers and infants through integrating three approaches to care: culturally safe care, trauma and violence-informed care and family centred care. While Indigenous-led supports may be better suited to meet the needs of Indigenous families, mainstream services can improve access and promote health service use through integrating these approaches to care. The findings have numerous implications for nursing education, practice and research as well as for health policy. Application of this evidence may result in equitable access to care, improved use of health services and better health outcomes for Indigenous infants and their families. / Thesis / Doctor of Philosophy (PhD) / Access and use of health care are important to health and wellness. Indigenous infants are known to have poorer health outcomes than non-Indigenous infants in Canada, yet little is understood of how their parents access health care to meet their health needs. This thesis uses qualitative methods, including interviews and a discussion group, to ask Indigenous mothers living in a city about their experiences selecting and using health services to meet their infant’s health needs. Interviews with health providers assist with understanding how health care is delivered to these families. The results provide important strategies for nurses and other health providers to improve how they provide care. This may then improve access to health services for Indigenous parents and ultimately lead to improved health outcomes for Indigenous infants and their families.