AimTo explore the experiences of partnership nursing among nurses when caring for children and young people with long‐term conditions, and their families.BackgroundPartnership nursing is promoted as a positive model of care among paediatric nurses, where shared roles and decision‐making, parental participation, mutual trust and respect, communication and negotiation are valued to create positive care experiences and enhance patient outcomes. Little is known about how nurses use partnership with both the patient and the parents in this triad to deliver partnership nursing.DesignA qualitative systematic review followed Joanna Briggs Institute meta‐aggregation approach and has been reported according to PRISMA guidelines.MethodsA comprehensive systematic search was conducted in seven electronic databases. Studies were assessed according to a pre‐determined inclusion criteria. Qualitative findings with illustrative participant quotes were extracted from included studies and grouped into categories to inform overall synthesised findings. Methodological quality assessment was conducted.FindingsA total of 5837 publications were screened, and 41 qualitative studies were included. Three overarching synthesised findings were identified: (1) Using education to promote feelings of safety and support, (2) Partnering to develop a strong therapeutic relationship and (3) Optimising communication underpinned by shared decision‐making principles to deliver individualised care.ConclusionNurses demonstrated successful partnership in their practice, but focused on developing dyadic nurse–parent and dyadic nurse–child partnerships. Future practice development that creates a three‐way triadic partnership may aid therapeutic relationships and shared decision‐making.Implications for clinical practiceClinicians can reflect on how dyadic partnerships (focusing on the child or the parent) may exclude opportunities for coherent care. Further exploration in practice, policy and research as to how nurses determine child competency and child and parent level of engagement in triadic partnership may improve the potential of meaningful shared decision‐making.
AimTo explore the experiences of partnership nursing among nurses when caring for children and young people with long‐term conditions, and their families.BackgroundPartnership nursing is promoted as a positive model of care among paediatric nurses, where shared roles and decision‐making, parental participation, mutual trust and respect, communication and negotiation are valued to create positive care experiences and enhance patient outcomes. Little is known about how nurses use partnership with both the patient and the parents in this triad to deliver partnership nursing.DesignA qualitative systematic review followed Joanna Briggs Institute meta‐aggregation approach and has been reported according to PRISMA guidelines.MethodsA comprehensive systematic search was conducted in seven electronic databases. Studies were assessed according to a pre‐determined inclusion criteria. Qualitative findings with illustrative participant quotes were extracted from included studies and grouped into categories to inform overall synthesised findings. Methodological quality assessment was conducted.FindingsA total of 5837 publications were screened, and 41 qualitative studies were included. Three overarching synthesised findings were identified: (1) Using education to promote feelings of safety and support, (2) Partnering to develop a strong therapeutic relationship and (3) Optimising communication underpinned by shared decision‐making principles to deliver individualised care.ConclusionNurses demonstrated successful partnership in their practice, but focused on developing dyadic nurse–parent and dyadic nurse–child partnerships. Future practice development that creates a three‐way triadic partnership may aid therapeutic relationships and shared decision‐making.Implications for clinical practiceClinicians can reflect on how dyadic partnerships (focusing on the child or the parent) may exclude opportunities for coherent care. Further exploration in practice, policy and research as to how nurses determine child competency and child and parent level of engagement in triadic partnership may improve the potential of meaningful shared decision‐making.
“…This previous research was continued with other studies 12,13 which specifically revealed the educational and psychopedagogical needs of pediatricians and nurses, providing proposals for improvement adapted to the Balearic context and transferable to similar contexts at national and international level. These include the needs related to the communication of the diagnosis or giving bad news to families, promoting the self-management of the disease by children and coordination among health professionals and teachers.…”
“…These challenges can also cause families difficulties in obtaining integrated care and the necessary support to meet the needs of their new reality [ 7 , 8 , 9 , 10 , 11 , 12 , 13 , 14 ]. Taking the multiple impacts that RDs can cause into account, the socioemotional support and advice on family management models for dealing with a child’s illness are among the challenges that health professionals have to face [ 15 , 16 , 17 , 18 , 19 , 20 ].…”
Rare diseases produce multiple impacts for the people who suffer from them, but they also have repercussions for their families, education and healthcare. The objective of this study is to analyze the coordination between healthcare and education professionals who intervene with children and adolescents with rare diseases. It is a qualitative study designed with a critical paradigm, and it was carried out through focus group discussions. A total of 50 people participated in the study, including healthcare professionals, teachers and families. The results suggest that poor communication and coordination negatively impact minors with rare diseases, placing an extra burden on their families, who take on an intermediary role in communication. Participants in the study recognized coordination as an area for improvement as it can compromise equitable social and health services and inclusive education. Other measures must also be put into action at the public administration level not only to establish protocols for intersectoral coordination, but also to increase the knowledge and awareness of staff involved in health and education interventions for children with rare diseases.
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