Abstract
BackgroundConsistent evidence suggests that children’s palliative care is not equitable and managed clinical networks (MCNs) have been recommended as a solution. This study explored the perspectives of health professionals involved in the development of a children’s palliative care MCN, with an aim to identify barriers and enablers of successful implementation.MethodsThematic analysis of semi-structured interviews and focus groups with 45 healthcare staff with a role in developing the MCN or in the delivery of children’s palliative care (September 2019–March 2020).ResultsThe study explored health professionals’ perceptions of the MCN features that had helped to formalise governance processes, establish training and networking opportunities, standardise practice, and improve collaboration between organisations. These include the funded MCN co-ordinator, committed individuals who lead the MCN, and a governance structure that fosters collaboration. However, the MCN’s development was impeded by cross-cutting barriers including limited funding for the MCN and children’s palliative care more generally, no shared technology, lack of standards and evidence base for children’s palliative care, and shortage of palliative care staff. These barriers impacted on the MCN’s ability to improve and evaluate palliative care provision and affected member engagement. Competing organisational priorities and differences between NHS and non-NHS members also impeded progress. Training provision was well received, although barriers to access were identified.ConclusionsKey features of children’s palliative care can act as barriers to developing a managed clinical network. Managing expectations and raising awareness, providing accessible and relevant training, and sharing early achievements through ongoing evaluation can help to sustain member engagement, which is crucial to a network’s success.
Highlights
Consistent evidence suggests that children’s palliative care is not equitable and managed clinical networks (MCNs) have been recommended as a solution
The study was designed with two phases of data collection, both aimed at understanding the perceptions of individuals with different relationships to the MCN
The majority of the participants in this phase were in management roles as a result of the makeup of the MCN’s internal structures
Summary
Consistent evidence suggests that children’s palliative care is not equitable and managed clinical networks (MCNs) have been recommended as a solution. Provision may be “good in some areas, [but] in others it is generally unclear who is providing what (if anything), and to whom, leading to Papworth et al BMC Palliative Care (2021) 20:20 substantial unmet needs” [5] Evidence consistently shows this inequality [3, 5, 9, 10], with patchy geographical distribution of provision [3, 11], differing structures, services and models of care among providers [5, 12, 13], and a lack of collaboration and coordination between these organisations [3, 5, 12]. Unlike informal professional networks which are organic by nature, the key feature of MCNs is that they are formal and managed entities in which the emphasis “shifts from buildings and organisations to services and patients” [14], often requiring members to “‘surrender sovereignty’ to achieve shared objectives” [20]
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