Children and young people’s participation in decision-making within healthcare organisations in New Zealand: An integrative review

There is a paucity of literature on children and young people’s participation in decision-making within healthcare organisations in New Zealand. This integrative review examined child self-reported peer-reviewed manuscripts and published guidelines, policy, reviews, expert opinion and legislation to explore how New Zealand children and young people participate in discussions and decision-making processes within healthcare settings and what are barriers and benefits to such participation. Four child self-reported peer-reviewed manuscripts and twelve expert opinion documents were retrieved from four electronic databases including academic, government and institutional websites. Inductive content thematic analysis generated one theme (a discourse in children and young people’s participation within healthcare settings), four sub-themes, 11 categories, 93 codes and 202 findings. It is evident within this review that there is a discourse between what expert opinion are stating is required to promote children and young people’s participation in discussions and decision-making processes within healthcare settings and what is occurring in practice. Despite literature reporting on how children and young people’s participation and voice were essential for healthcare provision, there was sparse literature published on children and young people’s participation in discussions and decision-making processes in healthcare delivery in New Zealand

The psychosocial impact of rare diseases among children and adolescents attending mainstream schools in Western Australia

Living with a long-term medical condition is associated with heightened risk for mental health and psychosocial difficulties, but further research is required on this risk for children and adolescents with a rare disease in the educational setting. The aim of this study is to describe parents’ perceptions of the psychosocial impact of rare diseases on their school-aged children in Western Australia. A cross-sectional survey of 41 parents of school-aged children and adolescents diagnosed with a rare disease completed an online questionnaire. Questions related to their perceptions of health-related stigma, bullying, social competencies and mental health difficulties faced by their child. Results showed that stigmatisation was experienced by 75.6% of participants, and almost half (46.4%) reported their child was bullied. In this sample, parents reported high sensory (vision and hearing) abilities, but low to moderate self-care competence in relation to social activities and peer relations. Almost half of the respondents (43.9%) reported mental health difficulties among their children. Children and adolescents with a rare disease have unique psychological and social issues. These findings highlight the need for greater efforts to meet the diverse psychosocial, physical and emotional needs of children diagnosed with a rare disease who attend mainstream schools in Western Australia

Seeing lockdown through the eyes of children from around the world: Reflecting on a children's artwork project.

The COVID-19 pandemic created new challenges for children including access to education and limiting social and emotional connections to extended family, friends, and the community. Globally, opportunities for sharing children’s self-reported experiences during lockdown were limited. The primary aim of this project was to create an art-E-Book that reflects children’s experiences of life during the COVID-19 pandemic that could be shared with other children around the world. Secondly, we wanted to reflect on the consultation undertaken within the International Network of Child and Family Centered Care (INCFCC) using Gibbs (1988) reflective cycle framework. Children from around the world were invited to submit a piece of artwork that reflected their experience during the COVID-19 pandemic via a Qualtrics-survey in May 2020. The children’s artwork and written pieces were transcribed verbatim into an E-Book and the artwork was further placed into groups based on similarity of meaning. Fifty-five children from 17 countries submitted an artwork piece. Four groups were evident within the children’s artwork including infection control measures, positive experiences and emotions (connection to family, fun activities), negative experiences and emotions (social impact, emotional impact), and uniting children globally. The E-Book is available to download free of charge via the INCFCC website. The E-Book illustrates how children of all ages can provide meaningful insightful commentary and valuable information on their experiences during an unprecedented pandemic

Toward developing consensus on family-centred care: An international descriptive study and discussion

Nurses around the world have described family-centred care (FCC) in various ways. With limited evidence regarding its implementation and with dissent among professionals regarding outcomes that are amorphously defined across age groups, systems and global settings, a group of children’s nursing experts from around the world collaborated to seek clarification of the terms, deconstruct the elements in the model and describe empirically a consensus of values toward operationally defining FCC. A modified Delphi method was used drawing on expert opinions of participants from eight countries to develop a contemporary and internationally agreed list of 27 statements (descriptors of FCC) that could form the foundation for a measure for future empirical psychometric study of FCC across settings and countries. Results indicated that even among FCC experts, understandings of FCC differ and that this may account for some of the confusion and conceptual disagreement. Recommendations were identified to underpin the development of a clearer vision of FCC. © The Author(s) 2018

Bridging the child and family centered care gap: therapeutic conversations with children and families

Professor Linda Shields and Dr Mandie Foster from Charles Sturt University and Edith Cowan University in Australia discuss several models of care for children and families that exist and the prospect of using conversations with children and families as an intervention within healthcare to facilitate a child and family centered care approach

Family centred care in the paediatric critical care setting: Child, parent and staff perspectives

Introduction: Family centred care (FCC) is described as a philosophy of care however the definition, practice, reported benefits and deficits of FCC continue to be critiqued. The aim of this study was to explore staff and parents’ perception of FCC, parental needs and spirituality and the hospitalised child’s (5-15years old) needs within a paediatric high dependency unit (PHDU). Methods: A cross-sectional mixed methods design. Parents and staff completed the needs of parents questionnaire (NPQ), intrinsic spirituality scale (ISS) and 5 open ended questions. The children had an interview and drew a picture of a person in the hospital (CD:H). The interviews and long answer questions were transcribed verbatim and subjected to inductive thematic analysis. The NPQ, ISS and CDH scores underwent statistical analyses. Results: One hundred and four parents, 88 staff and 26 school-aged children participated. The themes generated from the parents long answer questions were treatment, family, relationships, religion and meanings. Significant statistical differences between the staff and parents’ NPQ responses were evident in 70 needs statements and 5 category mean scores. The mean ISS score for staff was higher (5.11, SD 3.0) than the parents (4.63, SD 3.17). The themes generated from the children’s interviews were relationships, support, play therapy and hospital. The child’s CD:H mean score was low (74.52, SD 28.55). Two parent, child and staff paediatric critical models of care were generated from the synthesized data. The models reflect the child’s, parents’ and staff’s experiences from admission through to transfer were influenced by the variables individual demographics, treatment, facilities, needs, coping strategies used, suffering or growth responses and health outcome. Conclusion: The staff, parent’s and child’s perception of FCC, needs and spirituality often differed but remained interwoven and were influenced by time, environment, health, person and relationships. Both similarities and differences were noted to earlier studies and further testing of psychometric tools, conceptual models and theory development is required to advance the state of the science for FCC within paediatric critical care

The Treatment of Neonatal Seizures: A Critical Review of the Evidence

In a critical review of the literature to assess the efficacy of monotherapy and subsequent combinant anticonvulsant therapy in the treatment of neonatal seizures, four studies were examined; three randomised control trials and one retrospective cohort study. Each study used phenobarbital for monotherapy with doses reaching a maximum of 40mg/kg. Anticonvulsant drugs used in conjunction with phenobarbitone for combinant therapy included midazolam, clonazepam, lorazepam, phenytoin and lignocaine. Each study used an electroencephalograph for seizure diagnosis and neonatal monitoring when determining therapy efficacy and final outcome assessments. Collectively the studies suggest neither monotherapy nor combinant therapy are entirely effective in seizure control. Monotherapy demonstrated a 29% - 50% success rate for complete seizure control whereas combinant therapy administered after the failure of monotherapy demonstrated a success rate of 43% - 100%. When these trials were combined the overall success for monotherapy was 44% (n = 34/78) and for combinant therapy 72% ( n = 56/78). Though the evidence was inconclusive, it would appear that combinant therapy is of greater benefit to infants unresponsive to monotherapy. Further research such as multi-site randomised controlled trials using standardised criteria and data collection are required within this specialised area