Mothers’ lived experience of caring for children with inborn errors of amino acid metabolism

BMC Pediatrics

Research

Peyman Eshraghi¹  Sara Shirdelzade²  Abbas Heydari³  Monir Ramezani³ 

[1] Department of Pediatric and Endocrinology, School of Medicine, Mashhad University of Medical Sciences, Mashhad, Iran;Department of Pediatrics, School of Nursing and Midwifery, Mashhad University of Medical Sciences, Mashhad, Iran;Nursing and Midwifery Care Research Center, Mashhad University of Medical Sciences, Mashhad, Iran;

关键词: Lived experience;    Mother;    Inborn errors of metabolism;    Children;    Qualitative;   

DOI  :  10.1186/s12887-023-03946-x

 received in 2022-09-20, accepted in 2023-03-08,  发布年份 2023

来源: Springer

【 摘 要 】

BackgroundInborn errors of amino acid metabolism are chronic conditions that have many sequels. Mothers of these children are facing different challenges which are underdetermined. This study was done to explore lived experience of mothers caring for these children.MethodsThis is an interpretive phenomenology with van Manen’s approach which has 6 steps. Data were gathered by convenience and purposeful sampling. Nine mothers with different experiences were interviewed and the interviews were audiotaped.ResultsSix final themes were revealed from the exploring mothers’ experiences including the future tied to the past, psychosis in the shadow of a lost ideal child, rebellion and blaming, the ways of escaping difficulties, self-forgetting in the shadow of full-time care, passing difficulties in the duality of hope-hopelessness, caring in a continuum of isolation-socialization.ConclusionMothers have multiple challenges in taking care of their children, especially psychologically and financially. So, nurses must plan programs for helping mothers of children with inborn errors of amino acid metabolism to reduce the effects of disease on mothers and consequently the children and the whole family.

【 授权许可】

CC BY   
© The Author(s) 2023. corrected publication 2023

【 图 表 】

Fig. 4