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

Content Provider	Springer Nature : BioMed Central
Author	Guerin, Suzanne Kiernan, Gemma Courtney, Eileen McQuillan, Regina Ryan, Karen
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.
Related Links	https://bmchealthservres.biomedcentral.com/counter/pdf/10.1186/s12913-020-05754-w.pdf
Ending Page	10
Page Count	10
Starting Page	1
File Format	HTM / HTML
ISSN	14726963
DOI	10.1186/s12913-020-05754-w
Journal	BMC Health Services Research
Issue Number	1
Volume Number	20
Language	English
Publisher	BioMed Central
Publisher Date	2020-10-08
Access Restriction	Open
Subject Keyword	Public Health Health Administration Health Informatics Nursing Research Life-limiting neurodevelopmental disability Children and families Services Delphi study
Content Type	Text
Resource Type	Article
Subject	Health Policy

Sl.	Authority	Responsibilities	Communication Details
1	Ministry of Education (GoI), Department of Higher Education	Sanctioning Authority	https://www.education.gov.in/ict-initiatives
2	Indian Institute of Technology Kharagpur	Host Institute of the Project: The host institute of the project is responsible for providing infrastructure support and hosting the project	https://www.iitkgp.ac.in
3	National Digital Library of India Office, Indian Institute of Technology Kharagpur	The administrative and infrastructural headquarters of the project	Dr. B. Sutradhar bsutra@ndl.gov.in
4	Project PI / Joint PI	Principal Investigator and Joint Principal Investigators of the project	Dr. B. Sutradhar bsutra@ndl.gov.in Prof. Saswat Chakrabarti will be added soon
5	Website/Portal (Helpdesk)	Queries regarding NDLI and its services	support@ndl.gov.in
6	Contents and Copyright Issues	Queries related to content curation and copyright issues	content@ndl.gov.in
7	National Digital Library of India Club (NDLI Club)	Queries related to NDLI Club formation, support, user awareness program, seminar/symposium, collaboration, social media, promotion, and outreach	clubsupport@ndl.gov.in
8	Digital Preservation Centre (DPC)	Assistance with digitizing and archiving copyright-free printed books	dpc@ndl.gov.in
9	IDR Setup or Support	Queries related to establishment and support of Institutional Digital Repository (IDR) and IDR workshops	idr@ndl.gov.in

The Pediatric Palliative Care Network: Serving children with life-limiting illnesses and their families

The Pediatric Palliative Care Network : Serving children living with life-limiting illnesses and their families

Development of nursing quality care process metrics and indicators for intellectual disability services: a literature review and modified Delphi consensus study

Socio-demographic disparities in receipt of clinical health care services during the COVID-19 pandemic for Canadian children with disability

NDIS Participants with Psychosocial Disabilities and Life-Limiting Diagnoses: A Scoping Review

“Non-palliative care” – a qualitative study of older cancer patients’ and their family members’ experiences with the health care system

Prevalence, trends, and specialized palliative care utilization in Taiwanese children and young adults with life-limiting conditions between 2008 and 2017: a nationwide population-based study

Towards a values framework for integrated health services: an international Delphi study

Experiences of healthcare, including palliative care, of children with life-limiting and life-threatening conditions and their families: a longitudinal qualitative investigation.

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

Similar Documents

The Pediatric Palliative Care Network: Serving children with life-limiting illnesses and their families

The Pediatric Palliative Care Network : Serving children living with life-limiting illnesses and their families

Development of nursing quality care process metrics and indicators for intellectual disability services: a literature review and modified Delphi consensus study

Socio-demographic disparities in receipt of clinical health care services during the COVID-19 pandemic for Canadian children with disability

NDIS Participants with Psychosocial Disabilities and Life-Limiting Diagnoses: A Scoping Review

“Non-palliative care” – a qualitative study of older cancer patients’ and their family members’ experiences with the health care system

Prevalence, trends, and specialized palliative care utilization in Taiwanese children and young adults with life-limiting conditions between 2008 and 2017: a nationwide population-based study

Towards a values framework for integrated health services: an international Delphi study

Experiences of healthcare, including palliative care, of children with life-limiting and life-threatening conditions and their families: a longitudinal qualitative investigation.

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