Children living with long‐term conditions and their experiences of partnership in nursing care: An integrative systematic review

Abstract

Aims and Objective:To describe the experiences of nursing care and partnership nursing as expressed by children living with long-term conditions.Background: Children with long-term conditions have higher rates of hospitalisations and adverse events in hospital, yet little is known about their experiences of nursing care. How children perceive partnership in care with their families and nurses is of interest in the achievement of safe and effective care Design: An integrative review following Joanna Briggs Institute protocols for systematic reviews.Method: An integrative review was chosen following Joanna Briggs Institute protocols for systematic reviews. A total of 5150 articles were screened, with 251 fulltext publications reviewed. A total of 21 studies were included, three mixed-method studies and 18 qualitative studies. This review has been reported as per Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines.Results: Four integrated findings were identified: "Children are aware of their surroundings and needs," "Children value positive communication," "Children want to be recognised as an individual in the triadic relationship, and this can be done through nurses using tailored play;" and "Children seek a shared decision-making process." Discussion: Children wanted to be seen as an individual in Children and Young People's nursing as well as a child who craves security, fun and comfort, both from their families and nursing staff. Children described observing partnership between nursing staff and parents but felt uninvolved, with some children craving more knowledge and power to better understand their long-term condition.Relevance to Clinical Practice: Further research is required on how Children and Young People's nursing staff can better support children and empower them to be active members in the shared decision-making process if the child wishes to be involved. K E Y W O R D Schild-nurse relationship, children and young people, family centred care, meta-aggregation, nursing, paediatric nursing, partnership, patient and family centred care F6, F61, F88, Q2 Children are aware of the nurse's role Integrated finding: Children are aware of their surroundings and needs F15, F16, F17, F21 Children are aware of the changes in their life F43, F46, F53, F72 Children are aware of their own health care needs F31, F48, F54, F84 Children are aware of parental anguish F9, F23, F30, F59, F66 Children feel security and safety from their parents and family F49, F60 Children feel loneliness due to their long-term condition F2, F52 Children value positive communication Integrated finding: Children value positive communication F7, F10 Regular communication alleviates fearF26, F65, F86 Children want direct communication from nurses F29, F50, F67, F82, F83, F85 A lack of communication increases levels of worry F44, F45, F47 Children are frustrated with being ignored Q3, Q4, Q7, Q8 Nurses need to tailor their communication to suit a person's individual needs F1, F5, F33, F70, F90 Children value...

Nurse experiences of partnership nursing when caring for children with long‐term conditions and their families: A qualitative systematic review

“…This is crucial as children with longterm conditions often face longer hospital admissions and have an increased morbidity and mortality (AIHW, 2022). Often, the level of child and parent involvement changes based on the nurse providing the care on that day, with the nurse utilising subjective data and information to determine how care will be provided and the roles each party will play (Barratt et al, 2021(Barratt et al, , 2022. Previous research has demonstrated that children benefit from having an active role in partnership with their parents and nursing staff (Barratt et al, 2022).…”

“…Often, the level of child and parent involvement changes based on the nurse providing the care on that day, with the nurse utilising subjective data and information to determine how care will be provided and the roles each party will play (Barratt et al, 2021(Barratt et al, , 2022. Previous research has demonstrated that children benefit from having an active role in partnership with their parents and nursing staff (Barratt et al, 2022). Children who have a more active role in their own health care often find their own voice within the partnership as they have been taught the importance of shared decision-making and autonomy from a younger age, which can help empower their self-advocacy for a condition that they may have for their entire life (Barratt et al, 2022;Coyne et al, 2014).…”

“…Given the dearth of knowledge on triadic partnership nursing, it is important to critically synthesise all existing research that focuses on the key attributes of triadic partnership from the nurse's perspective given recent systematic reviews have considered perspectives from children (Barratt et al, 2021(Barratt et al, , 2022 and parent (Barratt et al, 2021(Barratt et al, , 2022. Understanding the nurse's experiences of developing and building partnerships with both parents and children with long-term conditions with help address practice gaps and informed future directions from research.…”

Navigating asthma—the immigrant child in a tug‐of‐war: A constructivist grounded theory

“…While children observed the adults around them collaborating and forming partnerships in terms of asthma care, they reported that they were unable to participate in their own care and were frequently passive observers. If children are not allowed to participate in their own healthcare, they may experience fear, anxiety and prolonged emotional trauma as they try to navigate a complex system of healthcare (Barratt et al, 2022). While existing literature indicates the importance of letting family caregivers retain control over their children's asthma, our study emphasises the importance of giving children a sense of agency and power over their own healthcare.…”

“…This approach provides opportunities for both parties to participate in decision‐making regarding the child's asthma care, thereby improving family outcomes. If, on the contrary, this partnership is adult‐centric, children may lose their voice to the heavy voices of adults, thus resulting in an imbalance of power that may negatively affect them as they mature and seek more control and knowledge over their own health care (Barratt et al, 2022). Future research should therefore focus on developing policies that promote the active participation of children in their asthma care planning.…”