TY - JOUR
T1 - Lived Experiences of Fragile X Syndrome Caregivers
T2 - A Scoping Review of Qualitative Studies
AU - Kamga, Karen Kengne
AU - De Vries, Jantina
AU - Nguefack, Seraphin
AU - Munung, Syntia Nchangwi
AU - Wonkam, Ambroise
N1 - Funding Information:
This study was supported by the NIH Common Fund H3Africa Initiative: Award number U54HG009790 to AW and JD; Award Number U01 HG008226-01 to JD, Award numbers U01HG009716, U01HG007459, NIH/NHLBI U24HL135600 to AW.
Funding Information:
We thank Gill Morgan, librarian at the health science libraries at the University of Cape Town, South Africa, and for her assistance in the search process. We are confirming that the work was conducted to fulfill a Ph.D. degree requirement of KK. Funding. This study was supported by the NIH Common Fund H3Africa Initiative: Award number U54HG009790 to AW and JD; Award Number U01 HG008226-01 to JD, Award numbers U01HG009716, U01HG007459, NIH/NHLBI U24HL135600 to AW.
Publisher Copyright:
© Copyright © 2020 Kamga, De Vries, Nguefack, Munung and Wonkam.
PY - 2020/2/27
Y1 - 2020/2/27
N2 - Fragile X Syndrome (FXS) is the most common x-linked monogenic cause of Intellectual Disability (ID) and Autism Spectrum Disorder (ASD). Taking care of children with ID is challenging and overwhelming due to the multiple facets of caregiving. This scoping review aimed at summarizing the qualitative literature on the experiences of families living with FXS, identify key themes and determine the gaps in the extant literature. We conducted a literature search in May 2019 using four databases; PubMed, Web of Science, African-Wide-Information, and Scopus. The keywords used in our search strategy were associated with caregivers, lived experiences, FXS, and qualitative research. All English language articles with full-text reporting were included. Studies associated with other neurodevelopmental conditions and quantitative studies were excluded. We identified 12 out of 203 articles that described the lived experiences of families with FXS. Most articles originated from the United States of America and mothers were the main caregivers. We summarized our findings into four major themes which are; grief experiences, challenges of living with FXS, coping mechanisms and the need to plan for future outcomes. This scoping review highlights the scarcity of qualitative FXS literature in the African population and frustrations endured by families with FXS due to the low knowledge of FXS by healthcare workers. More research is needed to evaluate the impact of living with FXS in males and fathers.
AB - Fragile X Syndrome (FXS) is the most common x-linked monogenic cause of Intellectual Disability (ID) and Autism Spectrum Disorder (ASD). Taking care of children with ID is challenging and overwhelming due to the multiple facets of caregiving. This scoping review aimed at summarizing the qualitative literature on the experiences of families living with FXS, identify key themes and determine the gaps in the extant literature. We conducted a literature search in May 2019 using four databases; PubMed, Web of Science, African-Wide-Information, and Scopus. The keywords used in our search strategy were associated with caregivers, lived experiences, FXS, and qualitative research. All English language articles with full-text reporting were included. Studies associated with other neurodevelopmental conditions and quantitative studies were excluded. We identified 12 out of 203 articles that described the lived experiences of families with FXS. Most articles originated from the United States of America and mothers were the main caregivers. We summarized our findings into four major themes which are; grief experiences, challenges of living with FXS, coping mechanisms and the need to plan for future outcomes. This scoping review highlights the scarcity of qualitative FXS literature in the African population and frustrations endured by families with FXS due to the low knowledge of FXS by healthcare workers. More research is needed to evaluate the impact of living with FXS in males and fathers.
KW - care givers
KW - fragile X syndrome
KW - lived experience
KW - qualitative research
KW - scoping review
UR - http://www.scopus.com/inward/record.url?scp=85082442080&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=85082442080&partnerID=8YFLogxK
U2 - 10.3389/fneur.2020.00128
DO - 10.3389/fneur.2020.00128
M3 - Review article
AN - SCOPUS:85082442080
SN - 1664-2295
VL - 11
JO - Frontiers in Neurology
JF - Frontiers in Neurology
M1 - 128
ER -