Using network analysis to map the formal clinical reporting process in pediatric palliative care: a pilot study

Abstract

Background: Continuity of care is a key component of care in complex and chronic conditions. Despite its importance, it is often absent in chronic-disease management. One challenge has been identifying tools to measure care continuity. In one context important to families, namely pediatric palliative care, we undertook a project to identify continuity and to pilot the use of network analysis as a tool. Methods: Network analysis studies patterns of relationships or interactions between members, providing qualitative and quantitative description of network structure. Results: In this report we applied network analysis to paper records of clinical consultations and reports for 6 patients with complex conditions. A high degree of discontinuity was identified, and care was fragmented amongst specialist and generalist providers. Information was shared selectively and often moved in only one direction. Conclusions: Families have anecdotally reported frustration with poor continuity of care. Network analysis can be a useful tool in describing the discontinuity of care experienced by families dealing with complex and chronic conditions. This tool could be expanded to other systems such as electronic health records and many other health care situations.

Investigations of the Pediatric Hospice Care in Taiwan

“…4 The limited number of referrals from pediatricians and the continuity of care remain an issue with regard to the overall pediatric hospice/palliative care. 2,26 Similar to the previous results regarding geriatric terminally ill patients, 27 family physicians provide most of the in-hospice services among pediatric hospice care at this time. Due to the special requirements of terminally ill pediatric patients, it is not enough to only have family physician-oriented hospice care.…”

The networks of care surrounding cancer palliative care patients

“…This research adds to the literature on mapping care networks in palliative care,16 17 expanding on this work and other descriptive network mapping studies by including all types of communication even informal undocumented interaction and extending who is considered to be part of ‘the network’ such as family, friends and other non-professionals.…”

“…The majority of ‘social network’ research for patients with cancer has focused on on-line support or friendship/family networks in terms of practical or emotional support, or impact on quality of life and survival 15 16. A pilot study reporting on written information transmission for six paediatric palliative care patients,17 demonstrates the methodological potential of mapping palliative care networks, but considers only formal, written information sent and received between certain key individuals/departments. Community support networks for carers of people at the end of life used social network analysis, to demonstrate changes in support network size over time for most carers,18 but the position of the patient and HSCPs in the majority of networks was unclear.…”

Continuidade e transição do cuidado de crianças com condições crônicas: uma revisão de escopo

“…Especialmente para a criança com condições crônicas, é importante que a continuidade do cuidado se dê ao longo de toda a rede de serviços (Miller, et al, 2009), sendo identificada como uma questão primordial para pais e enfermeiros no cuidado a crianças com condições crônicas (Baird, et al, 2016;Zanello, et al, 2015). Ou seja, promover a continuidade do cuidado é fundamental para a atenção pediátrica de alta qualidade (Enlow, Passarella & Lorch, 2017;Siden & Urbanoski, 2011).…”

“…Contudo, pesquisa qualitativa que entrevistou 47 pais de crianças com condições crônicas revelou que a percepção dos pais foi de que os serviços de saúde não se comunicam uns com os outros, e a função de relatar os eventos de saúde da criança a cada profissional, acaba sendo responsabilidade dos cuidadores (Miller, et al, 2009). Outra questão evidenciada foi a frustração dos pais quanto à ausência de fluxos pré-definidos entre os serviços de saúde para assistência à criança com condições crônicas (Siden & Urbanoski, 2011). Pais e enfermeiros de crianças com condições crônicas hospitalizadas se sentem confusos sobre as próximas etapas da assistência à saúde após a alta (Baird, et al, 2016).…”