Integration of palliative care in services for children with life-limiting neurodevelopmental disabilities and their families: a Delphi study

Abstract

Background The aim of this study was to explore expert professionals’ opinions on service provision to children under six with life-limiting neurodevelopmental disabilities (LLNDD), including the goals of care and the integration and coordination of palliative care in general and specialist services. Methods A Delphi design was used with three questionnaire rounds, one open-ended and two closed response rounds. Primary data collected over a six-month period from expert professionals with five years’ (or more) experience in pediatric, intellectual disability and/or palliative care settings. Ratings of agreement and prioritization were provided with agreement expressed as a median (threshold = 80%) and consensus reported as interquartile ranges. Stability was measured using non-parametric tests. Results Primary goals of care were achievement of best possible quality of life, effective communication and symptom management. Service integration and coordination were considered inadequate, and respondents agreed that areas of deficiency included palliative care. Improvement strategies included a single care plan, improved communication and key worker appointments. Conclusions The findings suggest that services do not serve this group well with deficiencies in care compounded by a lack of information on available services and sub-optimal communication between settings. Further research is needed to develop an expert-based consensus regarding the care of children with LLNDD.

Between equilibrium and chaos, with little restitution: a narrative analysis of qualitative interviews with clinicians and parent carers of children with medical complexity

“…This difference in burden highlights the need for comprehensive support systems that address the emotional, financial, and physical challenges faced by parents/guardians to support better outcomes [ 49 – 54 ]. Consistent with our findings and existing literature, staff members may benefit from streamlined processes and accessible resources to facilitate interpersonal communication and information transfer to fulfil their care coordination responsibilities [ 28 , 45 , 55 ].…”

A Delphi Based Approach to the Assessment of New Marine Litter Reduction and Processing Technologies

“…As examples of works using just a single measure, we have the following: percentage of agreement (Mubarak et al, 2019;Bhandari et al, 2020;Nasa et al, 2021;Frew et al, 2021;Shaw et al, 2021); mean (Barzekar et al, 2011). Examples of works using cumulative measures are: IQR and mean (De Brito et al, 2017); IQR and median (Rezapour et al, 2019;Everink et al, 2020); IQR and percentage of agreement (Chen and Jiang, 2020;Guerin et al, 2020); percentage of agreement and median (Ahmed et al, 2021); percentage of agreement and mean (Santos et al, 2018); mean, median and percentage of agreement (Lima-Rodrıǵuez et al, 2013); IQR, median and percentage of agreement (Bentley et al, 2016;Price et al, 2020).…”

“…That is why the literature indicates inference statistics (Kalaian & Kasim, 2012) such as Chi-squared (Dajani et al, 1979 andNasa et al, 2021), Wilcoxon signed-rank (De Vet et al, 2005;De Brito et al, 2017;Brunt et al, 2018;Mubarak et al, 2019;Bhandari et al, 2020;Chen and Jiang, 2020;Guerin et al, 2020;Price et al, 2020), McNemar (Lambat et al, 2019) and Kappa coefficient (Barrios et al, 2021) tests to evaluate the stability of respondent answers between consecutive rounds. If no changes are detected for any statements, the Delphi is stopped.…”