Developing rights-based standards for children having tests, treatments, examinations and interventions: using a collaborative, multi-phased, multi-method and multi-stakeholder approach to build consensus.

Children continue to experience harm when undergoing clinical procedures despite increased evidence of the need to improve the provision of child-centred care. The international ISupport collaboration aimed to develop standards to outline and explain good procedural practice and the rights of children within the context of a clinical procedure. The rights-based standards for children undergoing tests, treatments, investigations, examinations and interventions were developed using an iterative, multi-phased, multi-method and multi-stakeholder consensus building approach. This consensus approach used a range of online and face to face methods across three phases to ensure ongoing engagement with multiple stakeholders. The views and perspectives of 203 children and young people, 78 parents and 418 multi-disciplinary professionals gathered over a two year period (2020-2022) informed the development of international rights-based standards for the care of children having tests, treatments, examinations and interventions. The standards are the first to reach international multi-stakeholder consensus on definitions of supportive and restraining holds.    Conclusion: This is the first study of its kind which outlines international rights-based procedural care standards from multi-stakeholder perspectives. The standards offer health professionals and educators clear evidence-based tools to support discussions and practice changes to challenge prevailing assumptions about holding or restraining children and instead encourage a focus on the interests and rights of the child. What is Known: • Children continue to experience short and long-term harm when undergoing clinical procedures despite increased evidence of the need to improve the provision of child-centred care. • Professionals report uncertainty and tensions in applying evidence-based practice to children's procedural care. What is New: • This is the first study of its kind which has developed international rights-based procedural care standards from multi-stakeholder perspectives. • The standards are the first to reach international multi-stakeholder consensus on definitions of supportive and restraining holds.

Experiences and Perspectives of Children and Young People Living with Childhood-Onset Systemic Lupus Erythematosus-An Integrative Review.

Childhood-onset systemic lupus erythematosus (cSLE) impacts the daily life of children and young people. This study aimed to describe the experiences and perspectives of children and young people living with cSLE. An integrative review guided by Whittemore and Knafl was conducted. Extant empirical research published in peer-reviewed journals from 2000 to 2021 on children's self-reported experiences living with cSLE was identified from Scopus, CINAHL, Medline via PubMed, and PsycINFO via Ovid databases. Nineteen studies involving over 1400 participants were included. Four themes and fourteen sub-themes were identified: (1) challenging symptoms (disruptions to life and altered self, severity, fatigue, depression, and anxiety), (2) medicines and side effects (dreaded steroids, conflicting feelings, and medication adherence), (3) complicated life (school sports and social, giving things up, lack of understanding, and quality of life) and (4) ways of coping (family and friends, relationships with health providers, and maintaining positivity). While cSLE shares many similarities with adult-onset SLE, awareness of differences in experiences and perceptions of children and young people is crucial. The significant psychological and social impact of the disease and its treatments necessitates a comprehensive, holistic approach to managing cSLE that considers the unique needs of youth.

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.

Sore and tired. A qualitative study exploring the symptom experience of youth with bronchiectasis.

This qualitative study was conducted to explore the experiences of youth living with bronchiectasis in New Zealand (NZ). Semi-structured interviews were conducted with youth with bronchiectasis. Key themes were identified using an inductive approach through constant comparative analysis and guided by Thorne's interpretive description (ID). Fifteen young people of mixed ethnicity (nine females and six males) aged between 13 and 23 years participated. Three key themes 'sore and tired', 'life interrupted and 'looking after self' were identified. This paper will focus on 'sore and tired' and its three subthemes which describe the participants symptom experience. While there was variability in physical symptom patterns, cough, soreness and fatigue were prominent features impacting physical, emotional and social aspects of day-to-day life. All identified pervasive and profound fatigue as significant. The identification of prodromal symptoms provides opportunity for greater appreciation of the varied and personal symptom experience of young people with bronchiectasis. Early identification of these symptoms and inclusion within management plans for escalating treatment has the potential to improve outcomes, reducing delays in seeking additional medical management and preventing further exacerbation.

'I feel like my house was taken away from me': Parents' experiences of having home adaptations for their medically complex, technology-dependent child.

Technology-dependent children are a sub-population of seriously ill children with life-limiting conditions who are being cared for at home by their families. Although home-based care has been the model of care for these children since the late 1980s, there is a paucity of literature about parents' experiences of having home adaptations made to enable their home to be a place of care for their child. Using the findings from auto-driven photo-elicitation interviews conducted between August 2017 and June 2018 with 12 parents (10 mothers and 2 fathers) who have a technology-dependent child (aged 5-25 years) living in England, Scotland and Wales and David Seamon's five concepts of at-homeness (appropriation, at-easeness, regeneration, rootedness and warmth) as a conceptual framework, this paper addresses how parents' experienced home adaptations. Thematic analysis generated a meta-theme of 'Home needs to be a home for all family members' and the three key themes: (1) 'You just get told' and 'you're not involved'; (2) It's just the 'cheapest', 'quickest', 'short-term' approach; (3) Having 'control' and 'thinking things through.' The need to involve parents in decision-making about adaptations that are made to their home (family-informed design) is clear, not only from a cost-saving perspective for the state, but for creating an aesthetic and functional home that optimises health, well-being and feelings of at-homeness for the entire family.

'It doesn't feel like our house anymore': The impact of medical technology upon life at home for families with a medically complex, technology-dependent child.

The study aimed to identify how medical technology impacts upon the home and life at home. Inductive auto-driven photo-elicitation or semi-structured interviews were conducted with technology-dependent children/young people (n = 2) and their family members (n = 15) from 10 families. Thematic analysis generated three themes: Altered physicality and look of the home; Altered sounds in the home; and 'It's worth it! Technology enables us to stay as a family'. Fundamentally, the detrimental impacts of living with medical technology were perceived as worth it as these enabled their child to be at home. Home was not home, and families were incomplete without their child at home.

A "pretty normal" life: a qualitative study exploring young people's experience of life with bronchiectasis.

PURPOSE: Bronchiectasis is a chronic respiratory disease that impacts significantly on quality of life for those who have it. There is a paucity of literature exploring the perspectives of children and young people. The aim of this study was to examine the day-to-day life experience of a group of young people with bronchiectasis. METHOD: A qualitative study using semi-structured interviews explored fifteen young people's perspectives of life with bronchiectasis. Key themes were identified using an inductive iterative approach through constant comparative analysis guided by Thorne's interpretive description. RESULTS: Life with bronchiectasis was conceptualized by participants as "Pretty Normal". This consisted of two co-existing life views which represented how young people balanced the ups and downs of adolescence while learning to accommodate the demands of living with bronchiectasis. Three key thematic elements "sore and tired", 'life interrupted and "looking after self", influenced and challenged these two views of life. CONCLUSIONS: Young people with bronchiectasis portray life as being the same as their peers. Despite this, they recognized that the symptoms, interruptions, and self-management responsibilities led them to find ways of coping and integrating their experience into a new and modified view of normal.

Effect of an educational programme on critical care nurses' competence at two tertiary hospitals in Malawi.

Background: Critical care specialty deals with the complex needs of critically ill patients. Nurses who provide critical care are expected to possess the appropriate knowledge and skills required for the care of critically ill patients. The aim of this study was to assess the effect of an educational programme on the competence of critical care nurses at two tertiary hospitals in Lilongwe and Blantyre, Malawi. Methods: A quantitative pre- and post-test design was applied. The training programme was delivered to nurses (n = 41) who worked in intensive care and adult high dependency units at two tertiary hospitals. The effect of the training was assessed through participants' self-assessment of competence on the Intensive and Critical Care Nursing Competence Scale and a list of 10 additional competencies before and after the training. Results: The participants' scores on the Intensive and Critical Care Nursing Competence Scale before the training, M = 608.2, SD = 59.6 increased significantly after the training, M = 684.7, SD = 29.7, p <.0001 (two-tailed). Similarly, there was a significant increase in the participants' scores on the additional competencies after the training, p <.0001 (two-tailed). Conclusion: The programme could be used for upskilling nurses in critical care settings in Malawi and other developing countries with a similar context.

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.

Contextual issues that influence preparedness of nurses for critical care nursing practice in Malawi.

Background: There are no critical care nurse training programs in Malawi despite the high burden of diseases which culminate in critical illness. This paper presents contextual issues that influence preparedness of nurses for critical care nursing practice in Malawi. The qualitative findings presented are part of a larger mixed methods study which explored learning needs of critical care nurses as a way of informing the development of a training program for the critical care nurses in Malawi. Methods: Interpretive descriptive design was used. Data were gathered through 10 key informant interviews with nurse leaders (n=8) and anaesthetists (n=2); and two focus group discussions with registered nurses and nurse midwife technicians working in intensive care and adult high dependency units at two tertiary hospitals. Transcribed data were analyzed manually and through the use of NVivo data management software utilizing Thorne's steps of analysis1. Results: Being unprepared to work in intensive care and high dependency units was a dominant theme. Factors that contributed to this sense of unpreparedness were lack of educational preparation, organisational factors and workforce issues. The consequences of nurses' perceptions of being unprepared were fearfulness, a change of nurses' attitudes and elevation of risk to patients. The nurses managed unpreparedness by relying on other health professionals and learning on the job. Conclusion: The findings illuminated contextual issues to be considered when developing programs for upskilling nurses in hospitals within Malawi and contributes to the developing body of knowledge related to nursing education and practice development within developing countries.

Facilitating open family communication when a parent has chronic pain: A scoping review.

BACKGROUND: When a parent has chronic pain, family communication can become strained. Clinicians are encouraged to identify and support families struggling with open communication. Occupational therapists are commonly involved in the provision of pain management services but their role in facilitating open communication in families affected by this condition has not been clearly articulated. OBJECTIVE: To develop a comprehensive understanding of what is being done and/or thought to be helpful for facilitating open communication in families affected by chronic pain, in order to articulate the role of occupational therapy in this area of care. METHODS: A scoping review was conducted and 24 items analyzed using qualitative content analysis. RESULTS: The facilitation of open communication in families affected by parental chronic pain is dependent on a variety of factors, including the skills that members possess and occupations which they perform individually and together. It can also be prompted by relationship tension or a family accessing professional support. Occupational therapy literature on the matter is currently limited and focused on assertiveness training. CONCLUSION AND SIGNIFICANCE: There is scope for occupational therapist to extend their role beyond assertiveness training and use occupation-centered interventions to facilitate communication within families affected by parental chronic pain.

A qualitative study of health professionals' views on the holding of children for clinical procedures: Constructing a balanced approach.

Children undergoing clinical procedures can experience fear, uncertainty, and anxiety which can cause them to become upset and resist procedures. This study aimed to capture an international perspective of how health professionals report they would act if a child was upset and resisted a procedure. An online questionnaire, distributed through network sampling, used three vignettes to elicit qualitative open text responses from health professionals. Seven hundred and twelve professionals participated, resulting in 2072 pieces of text across the three vignettes. Many professionals reported that they would use distraction and spend time to inform and engage children in making choices about their procedure. However, most professionals indicated that if a child became uncooperative they would hold or instruct the holding of the child in order to get the procedure done 'as quickly as possible'. The findings demonstrate that professionals experience difficulty in balancing the different agendas, rights and priorities within the momentum which can build during a clinical procedure, often resulting in the child's voice and rights being undermined. A more balanced approach could be facilitated by a 'clinical pause' that would equip professionals with the time to consider children's expressed wishes and explore alternative approaches to holding.

Child Centred Care: Challenging Assumptions and Repositioning Children and Young People.

THEORETICAL PRINCIPLES: Against a backdrop of increasing debate regarding children's voice and position within health care and the struggle to effectively implement Family-Centred Care (FCC) in practice, the concept of Child-Centred Care (CCC) has emerged. PHENOMENA ADDRESSED: The purpose of this paper is to explore the concept of CCC and its potential theoretical alignment with an ecological approach to health care. RESEARCH LINKAGES: The paper will draw on practice-based research, highlighting the differences and similarities of CC against the more established FCC. Arguments will be presented to show that rather than competing with FCC, CCC has the potential to complement or extend traditional FCC, by placing children in a more prominent and central position than that which they currently hold within health care.

Holding children for procedures: An international survey of health professionals.

Children undergoing clinical procedures can experience pain and/or anxiety. This may result in them being unwilling to cooperate and being held still by parents or health professionals. This study aimed to capture an international perspective of health professionals' reported practices of holding children still for clinical procedures. An online questionnaire was distributed through network sampling to health professionals working with children aged under 16 years of age. A total of 872 responses were obtained from Australia ( n = 477), New Zealand ( n = 237) and the United Kingdom ( n = 158). Responses were from nurses ( n = 651), doctors ( n = 159) and other professionals ( n = 53). Health professionals reported children as held still for clinical procedures quite often (48%) or very often (33%). Levels of holding varied significantly according to country of practice, profession, student status, length of time working within a clinical setting, training received and the availability of resources in the workplace. Health professionals who gained permissions (assent from children and/or consent from parents) before procedures were less likely to hold children still for a clinical procedure than those who did not. Holding children still for procedures is an international practice, which is influenced by training, access to guidance, country of practice and profession. Children's permission and parental consent is often not sought before a child is held for a procedure to be completed.

The Parenting Journey: Daily Parental Management in Families with Young Children.

Transitioning to parenthood and establishing a family are significant life events, and although an expected and normal part of adult life, it is a time of stress, change, and learning. The family has been well-studied with regard to developmental norms and the diagnosis and treatment of physical, cognitive, and emotional problems. However, little is known about how parents of young children establish, manage, and maintain their families on a daily basis. Social constructivist grounded theory was used to examine day to day parental management in families with young children. A theory, adjusting and redefining priorities, was developed to explain how parents make decisions related to the health and well-being of family members. A group of 24 New Zealand parents was interviewed about their daily management in families where the eldest child was aged no older than 3 years. Findings of this study revealed that parents used 4 overarching and constantly interacting viewpoints to consider situations: the personal, the parent, the parent unit, and the family unit. Their learning went through cycles of intensity and relaxation as parents considered their short term and long term priorities. Sometimes major changes to family structures and processes were required to maintain family stability, and sometimes the adjustments needed were relatively minor. These dimensions contributed to parents' continuous efforts to meet the needs of all family members and to create a unique family environment that encompassed the guiding principles upon which parents made their decisions. This study highlights the need for health professionals to recognize the unique, complex and dynamic decision-making process parents are already engaged in when managing their families.

"It's not who I am": Children's experiences of growing up with a long-term condition in England, Australia, and New Zealand.

PURPOSE: Most studies of growing up with a long-term condition focus on older children and adolescents and are condition-specific. Relatively few studies address the experiences of children in middle childhood or consider their experience across a range of conditions, countries, and health settings. This study aimed to explore children's perceptions and understandings of how their lives are shaped (or not) by a long-term condition and its associated management. DESIGN AND METHODS: A qualitative, participatory methodology using autodriven photoelicitation interviews (PEIs) with 45 purposively recruited children (6-12 years) with long-term conditions (e.g., hemophilia, arthritis, Crohn's disease), from England, New Zealand, and Australia was utilized. PEI facilitated the construction of inductively derived understandings of the children's experiences as the children had control over creating and then selecting which photographs to discuss with the researcher. RESULTS: Interpretive thematic analysis of the interviews and content analysis of the photographs resulted in an overarching theme, "It's not who I am …" but it is part of me, and three subthemes: getting on with my life; the special value of family, friendship, support, and comfort; and things that get in the way of getting on. Across all ages and the three countries, the children actively projected their self-concept as "well" children and they strove, through their photographs and their accompanying explanations of their lives, to emphasize that they were "normal" children. They were active social agents who demonstrated their capacity to shape parts of their lives interdependently with their parents and the requirements of their condition. PRACTICE IMPLICATIONS: Pediatric nurses should be aware of the importance that children with long-term conditions place on projecting and protecting their sense of being normal and ensure that when they engage with children that they take account of the children's understandings and efforts to live a life constrained but not limited by the condition.

The provision of nurse-led school based health services.

BACKGROUND: Internationally, nurses have been in the forefront of delivering health care services in the school environment and whilst health care delivery in secondary and high schools is evaluated, this is not the case for services delivered in primary/elementary schools. In countries such as New Zealand there is no significant inter-service collaboration between health and education; therefore, the delivery of health services remains fragmented and underdeveloped. OBJECTIVES: This discussion paper reviews the history and development of nurse-led school-based health services internationally and provides an insight into the current provision of primary school-based health services in New Zealand. DESIGN: The initial approach to this paper was to gain an understanding of the history of school-based health services internationally and to explore the relationship between health and education in relation to this. This assisted in providing some context and comparison with the current provision of school-based health services in New Zealand. Discussion outcome: Internationally, it is acknowledged that schools provide not only a location to deliver health services to children but also the opportunity to reach entire families and communities yet surprisingly, the development of school-based health services within the primary/elementary school sector has received minimal attention in New Zealand and worldwide. CONCLUSIONS: This paper supports the need for further research concerning the feasibility, provision and effectiveness of school-based health services in primary/elementary schools. In order to be effective, this should incorporate the shared needs and values of all stakeholders. The authors argue the need to develop an inter-service, collaborative, national framework for the delivery of school nursing services within the primary school sector in New Zealand. Impact statement: A collaborative framework for health service delivery into primary schools can enable early establishment of supportive health relationships with families.

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.

Auto-driven Photo Elicitation Interviews in Research with Children: Ethical and Practical Considerations.

Children can sometimes find it difficult to articulate their experiences if they have to rely solely on words. Giving children the opportunity to use arts-based research approaches can support their participation in research and create a bridge that enables them to express their perspectives and feelings. This paper focuses on the ethical and practical considerations when using photo elicitation interviews (PEI) in research with children. The discussion and examples provided are drawn from an international study that used auto-driven PEI, where photographs are taken by children themselves, to explore children's experiences of living with a chronic condition and the impact condition management may have on their everyday lives. In this paper we critically explore the issues arising from our use of PEI including children's participation and engagement, balancing power and control, and keeping children safe. The main areas of focus for the paper are how PEI provided a means of shifting control; how setting photographic boundaries influenced our PEI study with children; and how we addressed risks associated with the method. Our experience shows that PEI is an engaging and valuable research method, providing a powerful medium for obtaining rich data with children. However, PEI is challenging and it requires researchers to conscientiously address ethical and practical aspects that extend beyond those inherent to standard (words-alone) interviews.

Consumer attitudes about the role of multivitamins and other dietary supplements: report of a survey.

BACKGROUND: U.S. nutrition surveys find that intakes of many nutrients fall short of recommendations. The majority of U.S. adults use multivitamins and other dietary supplements as one means of improving nutrient intakes. Some policy makers and health professionals appear reluctant to recommend routine use of dietary supplements to fill nutrient gaps in the diet, in part because they are concerned that people will view the supplements as a substitute for dietary improvement and that the use of supplements may lead to overconsumption of micronutrients. Surveys find that in fact users of dietary supplements tend to have better diets and adopt other healthy habits, suggesting that the supplements are viewed as one aspect of an overall effort to improve wellness. Furthermore, evidence demonstrates that the incidence of excess micronutrient intake is low. We report the results of a survey probing consumer attitudes about the role of dietary supplements. METHODS: The Council for Responsible Nutrition funded a survey to measure consumer attitudes about the role of multivitamins, calcium and/or vitamin D supplements, and other supplements in improving dietary intakes. The research was designed and analyzed by FoodMinds and was fielded using Toluna's On-line Omnibus. The weighted sample of 2159 respondents is representative of U.S. adults. RESULTS: Nearly 90% of the survey respondents agreed that multivitamins and supplements of calcium and/or vitamin D can help meet nutrient needs when desirable intakes are not achieved through food alone. At the same time, 80% agreed that dietary supplements should not be used to replace healthy dietary or lifestyle habits, and 82% agreed that people considering taking a high dose, single nutrient supplement should talk with their physician. CONCLUSIONS: These results provide additional support for the conclusion that the vast majority of consumers recognize that multivitamins and other supplements can help fill nutrient gaps but should not be viewed as replacements for a healthy diet. This suggests that policy makers and health professionals could feel comfortable recommending rational dietary supplementation as one means of improving nutrient intakes, without being unduly concerned that such a recommendation would lead consumers to discount the importance of good dietary habits.