Humanizing Health and Social Care Support for People With Intellectual and Developmental Disabilities: Protocol for a Scoping Review

Madison Milne-Ives; Rohit Shankar; Dan Goodley; Kirsten Lamb; Richard Laugharne; Tracey Harding; Edward Meinert

doi:10.2196/31720

Humanizing Health and Social Care Support for People With Intellectual and Developmental Disabilities: Protocol for a Scoping Review

JMIR Res Protoc. 2022 May 4;11(5):e31720. doi: 10.2196/31720.

Authors

Madison Milne-Ives¹, Rohit Shankar², Dan Goodley³, Kirsten Lamb⁴, Richard Laugharne⁵, Tracey Harding⁶, Edward Meinert^{1

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Affiliations

¹ Centre for Health Technology, University of Plymouth, Plymouth, United Kingdom.
² Peninsula Medical School, Faculty of Health, University of Plymouth, Plymouth, United Kingdom.
³ School of Education, University of Sheffield, Sheffield, United Kingdom.
⁴ Faculty of Health, University of Plymouth, Plymouth, United Kingdom.
⁵ Cornwall Partnership National Health Service Foundation Trust, Bodmin, United Kingdom.
⁶ School of Nursing and Midwifery, Faculty of Health, University of Plymouth, Plymouth, United Kingdom.
⁷ Harvard TH Chan School of Public Health, Harvard University, Boston, MA, United States.
⁸ Department of Primary Care and Public Health, School of Public Health, Imperial College London, London, United Kingdom.

PMID: 35507388
PMCID: PMC9118084
DOI: 10.2196/31720

Abstract

Background: Health care is shifting toward a more person-centered model; however, people with intellectual and developmental disabilities can still experience difficulties in accessing equitable health care. Given these difficulties, it is important to consider how humanizing principles, such as empathy and respect, can be best incorporated into health and social care practices for people with intellectual and developmental disabilities to ensure that they are receiving equitable treatment and support.

Objective: The purpose of our scoping review is to provide an overview of the current research landscape and knowledge gaps regarding the development and implementation of interventions based on humanizing principles that aim to improve health and social care practices for people with intellectual and developmental disabilities.

Methods: The PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews) and PICOS (Population, Intervention, Comparator, Outcome, and Study) frameworks will be used to structure the review. A total of 6 databases (PubMed, MEDLINE, Embase, CINAHL, PsycINFO, and Web of Science) will be searched for English articles published in the previous 10 years that describe or evaluate health and social care practice interventions underpinned by the humanizing principles of empathy, compassion, dignity, and respect. Two reviewers will screen and select references based on the eligibility criteria and extract the data into a predetermined form. A descriptive analysis will be conducted to summarize the results and provide an overview of interventions in the following three main care areas: health care, social care, and informal social support.

Results: The results will be included in the scoping review, which is expected to begin in October 2022 and be completed and submitted for publication by January 2023.

Conclusions: Our scoping review will summarize the state of the field of interventions that are using humanizing principles to improve health and social care for adults with intellectual and developmental disabilities.

International registered report identifier (irrid): PRR1-10.2196/31720.

Keywords: delivery of health care; developmental disabilities; empathy; intellectual disability; patient care management; patient-centered care; respect; social care; social support; social work.

©Madison Milne-Ives, Rohit Shankar, Dan Goodley, Kirsten Lamb, Richard Laugharne, Tracey Harding, Edward Meinert. Originally published in JMIR Research Protocols (https://www.researchprotocols.org), 04.05.2022.