The experiences and perceptions of healthy siblings of children with a long-term condition: Umbrella review.

PROBLEM: The lives of healthy siblings living with a sibling with a long- term condition are often shaped by the family, type of illness, length of illness, age of the child, caregiver demands, and support provided to the family, ill sibling, and healthy sibling. While the experiences of healthy siblings are documented in the literature by parent proxy, literature on healthy siblings self-reported experiences of living with a sibling who has a long-term condition remains scarce. PURPOSE: This umbrella review aims to synthesize reviews on the self-reported experiences of healthy siblings of children living with a sibling who has a long-term condition. ELIGIBILITY CRITERIA: Published peer-reviewed reviews in English language exploring the self-reported experiences of healthy siblings under 24 years old, whose siblings are diagnosed with a long-term condition. SAMPLE: Using a developed search strategy, seven electronic databases (CINAHLPlus, Scopus, PubMed, PsycINFO, Cochrane Database of Systematic Reviews, Clinical Key, and Google Scholar) were searched from 2018 till December 2023. Eleven reviews met the inclusion criteria and were subjected to narrative synthesis. RESULTS: Four themes (adjusting to changes, wanting to help, living the ups and downs, living the changes), and eight subthemes were generated from the syntheses. CONCLUSION: This is the first umbrella review undertaken on healthy siblings self-reported experiences of living with a sibling who has a long-term condition. The impact of a long-term condition on healthy siblings of children with a long-term condition suggests a need for healthcare providers and organisations to provide better emotional, psychological, and informational support to healthy siblings and their families. IMPLICATIONS: Findings from this review will inform healthcare providers, organisations, researchers, and policymakers on the development of future clinical practices and research for healthy siblings.

Caring for Children with Non-Accidental Head Injuries: A Case for a Child-Centered Approach.

Child abuse remains a significant issue. Non-accidental head injury (NAHI) is a major cause of mortality in young children with survivors often having to live a life with severe developmental and neurological dysfunction. The aim of this hermeneutic phenomenological research study was to examine the lived experiences of nurses who care for children and their families admitted to hospital with a non-accidental head injury. Semi-structured interviews were conducted with six nurses who had at least five years' experience of nursing children with NAHI. Following the interpretive approach described by van Manen data was analyzed and two essential themes identified. Firstly, nursing children with NAHI is different from the care of children admitted with a similar neurological injury related to accidental injuries or medical conditions. Secondly, when nursing these children nurses adopt protective qualities, conceptualized in this study as a shield of protection. The findings of this study support the findings of other studies in regard to the emotional labor required of nurses caring for children who have been subject to child abuse and the importance for nurses of maintaining a professional demeanor. The study highlighted the tensions of sustaining a family-centered care approach when caring for a child with NAHI. It is argued that greater acknowledgment and emotional support for nurses is needed and that a child-centered approach offers a more compatible model of care than Family-Centered Care in the acute phase of caring for children with a NAHI.

Children's perspectives in family-centred hospital care.

BACKGROUND: Children's nursing has developed into its current forms in large part as a result of broader sociopolitical and organisational influences. Family-centred, patient-centred and collaborative approaches are now well established within the lexicon of child healthcare. Children are central to this yet their role within the family-centred care approach is not clear. AIM: To ask children to share the narratives of their experience of hospitals and hospitalisation in New Zealand, in order to consider multiple factors influencing their experience in hospital. METHODS: A qualitative narrative study involving face-to-face interviews with families (adults and children) who have had the experience of a child in hospital in New Zealand. The family narratives have been explored elsewhere. In this study, the stories told by children were examined in context of the family interview and the broader sociocultural narratives influencing them. FINDINGS: The research findings offer insights into how children make meaning of hospital experience and how their roles are influenced by adults. Themes evident are that parent and child experience may be different; children's stories may not be consistent with family narratives; and, children's agency in hospital is variable. CONCLUSION: Children's stories provide insights to the interconnectedness of personal, familial and societal narratives and their influence on experience of hospitalisation. Nurses and families are able to both constrain and enable children's participation in hospital care.

Patient advocacy by nurses - past, present and future.

BACKGROUND: Patient advocacy is central to the nursing profession yet a sense of certainty about the concept, its meaning and its implications for nursing practice remains elusive. AIM: This scholarly paper examines the concept of patient advocacy and its relevance to the nursing profession in Aotearoa/New Zealand. DESIGN: A broad historical overview of the evolution of the role of advocacy in nursing practice is provided including factors that encourage or discourage nurses to practice patient advocacy. CONCLUSIONS: This paper highlights the gap between the ideal of patient advocacy and the realities of everyday nursing practice. The responsibility for enacting advocacy sits with both individual practitioners and the organizations nurses work within.

What makes a child a 'competent' child?

Competence is a vital component of the informed consent process. The perceived level of a child's competence may influence their degree of participation in health decisions that affect them. It is the responsibility of the health professional to gauge a child's level of competence. Child competence, however, is not a static attribute that is linked to age. Rather, it is dynamic, changing in nature and dependent on a child's previous experiences, personal attributes, network of relationships around them and cultural and environmental context. Consequently, there is no single verified assessment tool to assist in the recognition of competence for New Zealand children. Adding to this complexity are the unclear interpretations of New Zealand health legislation and policy regarding whether or not a child can legally consent or refuse healthcare advice and treatment without the consent of a legal guardian. Under the Care of Children Act 2004 and the Code of Health and Disability Services Consumers' Rights 1996, the Health and Disability Commissioner states "a child may consent themselves [to health treatment] if and when the child achieves sufficient understanding and maturity to understand fully what is proposed". This paper poses the question: What is 'competency' and how is this decided? For the purpose of this article, 'child' pertains to those under the age of 16 years.