Mothers’ lived experience of caring for children with inborn errors of amino acid metabolism
Abstract Background Inborn 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. Methods This is an inte...
| Main Authors: | , , , |
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| Format: | Article |
| Language: | English |
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BMC
2023-06-01
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| Series: | BMC Pediatrics |
| Subjects: | |
| Online Access: | https://doi.org/10.1186/s12887-023-03946-x |
| _version_ | 1797795537948246016 |
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| author | Sara Shirdelzade Monir Ramezani Peyman Eshraghi Abbas Heydari |
| author_facet | Sara Shirdelzade Monir Ramezani Peyman Eshraghi Abbas Heydari |
| author_sort | Sara Shirdelzade |
| collection | DOAJ |
| description | Abstract Background Inborn 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. Methods This 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. Results Six 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. Conclusion Mothers 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. |
| first_indexed | 2024-03-13T03:19:29Z |
| format | Article |
| id | doaj.art-c145a0c513024a9381f5949ef6c468b1 |
| institution | Directory Open Access Journal |
| issn | 1471-2431 |
| language | English |
| last_indexed | 2024-03-13T03:19:29Z |
| publishDate | 2023-06-01 |
| publisher | BMC |
| record_format | Article |
| series | BMC Pediatrics |
| spelling | doaj.art-c145a0c513024a9381f5949ef6c468b12023-06-25T11:27:54ZengBMCBMC Pediatrics1471-24312023-06-012311910.1186/s12887-023-03946-xMothers’ lived experience of caring for children with inborn errors of amino acid metabolismSara Shirdelzade0Monir Ramezani1Peyman Eshraghi2Abbas Heydari3Department of Pediatrics, School of Nursing and Midwifery, Mashhad University of Medical SciencesNursing and Midwifery Care Research Center, Mashhad University of Medical SciencesDepartment of Pediatric and Endocrinology, School of Medicine, Mashhad University of Medical SciencesNursing and Midwifery Care Research Center, Mashhad University of Medical SciencesAbstract Background Inborn 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. Methods This 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. Results Six 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. Conclusion Mothers 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.https://doi.org/10.1186/s12887-023-03946-xLived experienceMotherInborn errors of metabolismChildrenQualitative |
| spellingShingle | Sara Shirdelzade Monir Ramezani Peyman Eshraghi Abbas Heydari Mothers’ lived experience of caring for children with inborn errors of amino acid metabolism BMC Pediatrics Lived experience Mother Inborn errors of metabolism Children Qualitative |
| title | Mothers’ lived experience of caring for children with inborn errors of amino acid metabolism |
| title_full | Mothers’ lived experience of caring for children with inborn errors of amino acid metabolism |
| title_fullStr | Mothers’ lived experience of caring for children with inborn errors of amino acid metabolism |
| title_full_unstemmed | Mothers’ lived experience of caring for children with inborn errors of amino acid metabolism |
| title_short | Mothers’ lived experience of caring for children with inborn errors of amino acid metabolism |
| title_sort | mothers lived experience of caring for children with inborn errors of amino acid metabolism |
| topic | Lived experience Mother Inborn errors of metabolism Children Qualitative |
| url | https://doi.org/10.1186/s12887-023-03946-x |
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