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Peer-reviewedCC BY-NC 4.0BMJ Open

Unpacking caregiver stigma in health conditions: a systematic review of conceptualisations, measurement tools and health outcomes

  • Nele Loecher1
  • Lara Counts2
  • Luke Zabotka3
  • Anneliese Williams4
  • Kayla Wynja2
  • Sara Malone5,6
  • Dylan Graetz2
6 affiliations
  1. 1Universitätsklinikum Würzburg, Würzburg, Germany
  2. 2St Jude Children’s Research Hospital, Memphis, Tennessee, USA
  3. 3Surgery, Washington University in St Louis School of Medicine, St Louis, Missouri, USA
  4. 4Purdue University, West Lafayette, Indiana, USA
  5. 5Brown School of Social Work, Washington University in Saint Louis, Saint Louis, Missouri, USA
  6. 6Department of Pediatrics, Washington University in Saint Louis, Saint Louis, Missouri, USA
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Abstract

Objectives: To examine the definitions, measurement tools, demographic, medical and psychosocial correlates of caregiver stigma to provide an overview of the field and recommendations for future research.

Design: Subanalysis of a parent systematic review using narrative synthesis.

Data sources: Embase, Ovid MEDLINE, Scopus, Cochrane Central Register of Controlled Trials, Cochrane Database of Systematic Reviews, Cumulated Index to Nursing and Allied Health Literature, APA PsycINFO, Global Health and ClinicalTrials.gov were searched in July 2024.

Eligibility criteria: The parent review included studies that (1) were peer-reviewed, (2) full-length, (3) used a quantitative tool to measure stigma, (4) measured stigma that was related to a health condition and (5) were available in English, Spanish or Arabic. This subanalysis included studies involving caregivers of individuals with physical health conditions.

Data extraction and synthesis: Studies were included in this subanalysis using data points extracted from the parent review. Additional data on definitions and associations were extracted and analysed using narrative synthesis. All data extraction and quality assessment were conducted by two reviewers.

Results: After removing duplicates, 10 427 studies were screened and 27 from 16 countries across nine health conditions were included. Most studies (77.8%) exclusively examined caregivers of paediatric patients. Most studies (77.8%) did not define caregiver stigma and those that did varied significantly in definitions used. Similarly, 23 different questionnaires were employed to measure caregiver stigma with little overlap. Nonetheless, greater caregiver stigma was consistently associated with more severe disease characteristics, decreased medication adherence and worse mental health outcomes for both patient and caregiver. Three studies examined psychosocial interventions, all of which successfully reduced caregiver stigma.

Conclusions: Caregiver stigma is a pervasive and consistent problem across countries and conditions, associated with worse outcomes for patients and caregivers. Initial evidence suggests that this stigma can be reduced through intervention to improve medical outcomes.

PROSPERO registration number: CRD42023433176.

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Cite

BibTeXRIS
BibTeX
@article{loecher2026unpacking,
  title = {{Unpacking caregiver stigma in health conditions: a systematic review of conceptualisations, measurement tools and health outcomes}},
  author = {Nele Loecher and Lara Counts and Luke Zabotka and Anneliese Williams and Kayla Wynja and Sara Malone and Dylan Graetz},
  journal = {BMJ Open},
  year = {2026},
  month = oct,
  doi = {10.1136/bmjopen-2026-119598},
  url = {https://bmjopen.bmj.com/lookup/doi/10.1136/bmjopen-2026-119598},
  note = {CC BY-NC 4.0},
}
RIS
TY  - JOUR
TI  - Unpacking caregiver stigma in health conditions: a systematic review of conceptualisations, measurement tools and health outcomes
AU  - Nele Loecher
AU  - Lara Counts
AU  - Luke Zabotka
AU  - Anneliese Williams
AU  - Kayla Wynja
AU  - Sara Malone
AU  - Dylan Graetz
PY  - 2026
DA  - 2026/10/27
JO  - BMJ Open
DO  - 10.1136/bmjopen-2026-119598
UR  - https://bmjopen.bmj.com/lookup/doi/10.1136/bmjopen-2026-119598
AB  - Objectives: To examine the definitions, measurement tools, demographic, medical and psychosocial correlates of caregiver stigma to provide an overview of the field and recommendations for future research.  Design: Subanalysis of a parent systematic review using narrative synthesis.  Data sources: Embase, Ovid MEDLINE, Scopus, Cochrane Central Register of Controlled Trials, Cochrane Database of Systematic Reviews, Cumulated Index to Nursing and Allied Health Literature, APA PsycINFO, Global Health and ClinicalTrials.gov were searched in July 2024.  Eligibility criteria: The parent review included studies that (1) were peer-reviewed, (2) full-length, (3) used a quantitative tool to measure stigma, (4) measured stigma that was related to a health condition and (5) were available in English, Spanish or Arabic. This subanalysis included studies involving caregivers of individuals with physical health conditions.  Data extraction and synthesis: Studies were included in this subanalysis using data points extracted from the parent review. Additional data on definitions and associations were extracted and analysed using narrative synthesis. All data extraction and quality assessment were conducted by two reviewers.  Results: After removing duplicates, 10 427 studies were screened and 27 from 16 countries across nine health conditions were included. Most studies (77.8%) exclusively examined caregivers of paediatric patients. Most studies (77.8%) did not define caregiver stigma and those that did varied significantly in definitions used. Similarly, 23 different questionnaires were employed to measure caregiver stigma with little overlap. Nonetheless, greater caregiver stigma was consistently associated with more severe disease characteristics, decreased medication adherence and worse mental health outcomes for both patient and caregiver. Three studies examined psychosocial interventions, all of which successfully reduced caregiver stigma.  Conclusions: Caregiver stigma is a pervasive and consistent problem across countries and conditions, associated with worse outcomes for patients and caregivers. Initial evidence suggests that this stigma can be reduced through intervention to improve medical outcomes.  PROSPERO registration number: CRD42023433176.
SN  - 2044-6055
SN  - 2044-6055
ER  -