Effectiveness of Interventions to Promote Physical, Psychological, and Socioeconomic Well-being Outcomes of Parents of Children With Neurodevelopmental Disabilities: Protocol for a Systematic Review

Abstract

Background It is well recognized that parents of children with neurodevelopmental disabilities can experience a considerable burden of care associated with their child’s disability, which can potentially impact their functioning and quality of life. Historically, the intervention efforts in pediatric rehabilitation have focused primarily on the child’s development and well-being and much less on parental and family well-being. The impact that a child’s diagnosis might have on parents remains unclear, and it is unknown how we can best support parents on their journey of childhood disability. It is, therefore, important to synthesize the published evidence on interventions for parents of children with neurodevelopmental disabilities so that clinicians can be better informed about the ways in which families they work with can be supported. Objective This manuscript presents the protocol for a systematic review of the effectiveness of interventions aiming to improve the physical, psychological, or socioeconomic well-being of parents of children with neurodevelopmental disabilities when compared to usual care or no care. Methods We will systematically search 4 databases (MEDLINE, Embase, PsycINFO, and CINAHL) from the year 2000 until the search date, for randomized controlled trials that evaluated the effectiveness of interventions to improve parental physical, psychological, or socioeconomic well-being. Two authors will independently screen the titles and abstracts, which will then be followed by full-text screening. After the eligibility assessment, two reviewers will independently extract data and conduct a risk of bias assessment using the Cochrane risk-of-bias tool. We will assess the quality of evidence using the Grading of Recommendations, Assessment, Development and Evaluation approach. If the data allow, we will perform a pairwise meta-analysis or network meta-analysis. We plan to evaluate the coherence of the network with a global test by using the node-splitting method. Results As of May 30, 2022, there have been two searches of data initiated: in September 2020 for articles published since 2000 and an updated search in January 2022 for articles published since 2020. We have screened all the titles and abstracts and performed eligibility assessment. However, the final number of references is still not available due to the additional information needed for some of the potentially eligible studies. The results from this systematic review will be published in an indexed journal within a year after this protocol is published. Conclusions This study is expected to identify a variety of programs to address the well-being needs of parents of children with neurodevelopmental disabilities and provide directions on how parents can best be supported within health care. Such interventions might help professionals and stakeholders in creating service delivery models that can enhance parental well-being and minimize the risks to their physical, psychological, and socioeconomic functioning. Trial Registration PROSPERO CRD42021230706; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=230706 International Registered Report Identifier (IRRID) DERR1-10.2196/38686

Bienestar psicológico, apoyo social y sobrecarga en los progenitores de hijos con discapacidad

“…Contrario a esto, los hallazgos de este estudio sugieren que las madres de niños con DI reportan una percepción de apoyo social menor en contraste al percibido por los padres. Parece posible que estos resultados se deban a los estereotipos atribuidos a la condición de discapacidad del niño y los comentarios negativos provenientes del círculo social o familiar más próximo que lleva a estas madres a una situación de marginación social (Novak-Pavlic et al, 2022) y, por tanto, a apreciar niveles medios de apoyo social.…”

“…Según los resultados del impacto de la crianza en el bienestar general de quienes cuidan a menores con diversos diagnósticos de DID, concluye que proporcionar cuidado a un menor con DID se asocia con efectos adversos en la salud, siendo más marcados en situaciones de discapacidades múltiples y menos notorios en casos de síndrome de Down (Masefield et al, 2020). Novak-Pavlic et al (2022) indagaron la experiencia de familias que tienen hijos con diagnósticos de DID, encontrando que algunas condiciones como el agotamiento en el rol de cuidador, subempleo, desempleo y la marginación social inciden negativamente en las puntuaciones de bienestar psicológico de los progenitores. En respuesta a estas situaciones, los cuidadores principales exploran posibles alternativas y recursos que ayuden a afrontar adecuadamente su experiencia (Hsu et al, 2021).…”