Evidence map›Paper›PMID 36832390›Full record

ArticleChildren (Basel, Switzerland)2023

Caregivers' Perspective on the Psychological Burden of Living with Children Affected by Sickle Cell Disease in Kinshasa, the Democratic Republic of Congo.

Patricia V M Lelo, Faustin Nd Kitetele, Cathy E Akele, David Lackland Sam, Michael J Boivin, Esperance Kashala-Abotnes

Open access · goldAbstract read
In one paragraph

Article in Children (Basel, Switzerland), 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers.

0numbers the graph read from it
0cells of the map it votes in
3citing papers in PubMed
1.4field-weighted citation impact, top 18% of its field
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

3 citing papers in PubMed, 5 citations in OpenAlex.

  1. Article
  2. The intersection of sickle cell disease, stigma, and pain in Africa.Hematology. American Society of Hematology. Education Program · 2024
    Review
  3. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

6 authors at 3 institutions in 3 countries.

Patricia V M LeloDepartment of Infectious Diseases, Kalembelembe Pediatric Hospital, Kinshasa 012, Democratic Republic of the Congo.
Faustin Nd KiteteleDepartment of Infectious Diseases, Kalembelembe Pediatric Hospital, Kinshasa 012, Democratic Republic of the Congo.ORCID 0000-0002-6963-8825
Cathy E AkeleDepartment of Infectious Diseases, Kalembelembe Pediatric Hospital, Kinshasa 012, Democratic Republic of the Congo.
David Lackland SamCentre for International Health (CIH), Faculty of Medicine, University of Bergen, 5020 Bergen, Norway.ORCID 0000-0003-4275-0697
Michael J BoivinDepartment of Psychiatry, Michigan State University, East Lansing, MI 48824, USA.ORCID 0000-0002-0097-1777
Esperance Kashala-AbotnesCentre for International Health (CIH), Faculty of Medicine, University of Bergen, 5020 Bergen, Norway.
Kinshasa General Hospital · CDUniversity of Bergen · NOMichigan State University · US

Funding

This research received partial funding from the Norwegian Council of Norway under the project Enfance Africaine 234469/H10
6 · The paper itself

Abstract

There is limited information on knowledge, perceptions, and management of sickle cell disease (SCD) in Africa in general and in the Democratic Republic of the Congo (DRC) in particular. This study explored knowledge, perceptions, and burden of 26 parents/caregivers of children with SCD in three selected hospitals in Kinshasa, DRC. We conducted a focus group with in-depth interviews with parents/caregivers of children affected with SCD. Four themes were discussed, including knowledge and perceptions, diagnosis and management, society's perceptions, and the psychosocial burden and the quality of life of the family affected by SCD. The majority of participants/caregivers felt that society, in general, had negative perceptions of, attitudes toward, and knowledge about SCD. They reported that children with sickle cell are often marginalized, ignored, and excluded from society or school. They face a number of challenges related to care, management, financial difficulties, and a lack of psychological support. The results suggest the need to promote measures and strategies to improve knowledge and management of SCD in Kinshasa, DRC.

Indexed as

caregiversDR Congoknowledgemanagementperceptionpsychological burdensickle cell disease

Identifiers

PMID36832390
PMCPMC9955617
OpenAlexW4318613333

What OpenQuestion holds

Textmetadata
LicenceCC BY
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.