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Living with a rare disease - experiences and needs in pediatric patients and their parents
BACKGROUND: A rare disease (RD) diagnosis and therapy can affect the family’s quality of life and mental health. A lack of information and missing care options lead to helplessness and psychological stress within families. This work aims to identify patients’ and parents’ experiences in daily life a...
Autores principales: | , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
BioMed Central
2023
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10422846/ https://www.ncbi.nlm.nih.gov/pubmed/37568186 http://dx.doi.org/10.1186/s13023-023-02837-9 |
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author | Witt, Stefanie Schuett, Katharina Wiegand-Grefe, Silke Boettcher, Johannes Quitmann, Julia |
author_facet | Witt, Stefanie Schuett, Katharina Wiegand-Grefe, Silke Boettcher, Johannes Quitmann, Julia |
author_sort | Witt, Stefanie |
collection | PubMed |
description | BACKGROUND: A rare disease (RD) diagnosis and therapy can affect the family’s quality of life and mental health. A lack of information and missing care options lead to helplessness and psychological stress within families. This work aims to identify patients’ and parents’ experiences in daily life and with the health care system as well as their needs and current pathways to psychosocial care to develop implementation strategies adapted to the families’ needs. METHODS: The present analysis is part of the national multicenter study “Children Affected by Rare Disease and Their Families-Network (CARE-FAM-NET).“ We conducted semi-structured telephone interviews with children, adolescents, and young adults with RD (aged 12 to 21 years) and parents of children with RD (aged 0 to 17 years). We analyzed the transcribed and anonymized interviews using the method of focused interview analyses to identify previous experiences with medical and psychosocial care and possible needs for improvement and support. RESULTS: Seventy-four parents of children with RD and 15 children, adolescents, and young adults with RD participated. Five main themes emerged. Daily life with an RD: RD affects the everyday and social life of the respondents, negatively impacting mental well-being. Experiences with the health care system: The long diagnostic path is stressful for families. Professionals’ lack of information/education leads to inadequate care for those affected. Psychosocial support: Families do not know about psychosocial care services. In some cases, the families take advantage of psychosocial support services (such as support groups or advocacy groups), which are predominantly very helpful. Difficulties and barriers: Time, socio-legal and organizational problems burden families and lead to advantages in using psychosocial services. Improvements for patient-oriented support: Those affected wished for timely, preventive support (especially in administrative and socio-legal matters) and education regarding psychosocial care services. CONCLUSION: RD represent a great challenge for all family members – patients, parents, and siblings. The patients’ and parents’ previous experiences in daily life, medical and psychosocial care show a need for target-group specific support, including training of health care professionals and low-threshold access care services and practical help for all family members. |
format | Online Article Text |
id | pubmed-10422846 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2023 |
publisher | BioMed Central |
record_format | MEDLINE/PubMed |
spelling | pubmed-104228462023-08-13 Living with a rare disease - experiences and needs in pediatric patients and their parents Witt, Stefanie Schuett, Katharina Wiegand-Grefe, Silke Boettcher, Johannes Quitmann, Julia Orphanet J Rare Dis Research BACKGROUND: A rare disease (RD) diagnosis and therapy can affect the family’s quality of life and mental health. A lack of information and missing care options lead to helplessness and psychological stress within families. This work aims to identify patients’ and parents’ experiences in daily life and with the health care system as well as their needs and current pathways to psychosocial care to develop implementation strategies adapted to the families’ needs. METHODS: The present analysis is part of the national multicenter study “Children Affected by Rare Disease and Their Families-Network (CARE-FAM-NET).“ We conducted semi-structured telephone interviews with children, adolescents, and young adults with RD (aged 12 to 21 years) and parents of children with RD (aged 0 to 17 years). We analyzed the transcribed and anonymized interviews using the method of focused interview analyses to identify previous experiences with medical and psychosocial care and possible needs for improvement and support. RESULTS: Seventy-four parents of children with RD and 15 children, adolescents, and young adults with RD participated. Five main themes emerged. Daily life with an RD: RD affects the everyday and social life of the respondents, negatively impacting mental well-being. Experiences with the health care system: The long diagnostic path is stressful for families. Professionals’ lack of information/education leads to inadequate care for those affected. Psychosocial support: Families do not know about psychosocial care services. In some cases, the families take advantage of psychosocial support services (such as support groups or advocacy groups), which are predominantly very helpful. Difficulties and barriers: Time, socio-legal and organizational problems burden families and lead to advantages in using psychosocial services. Improvements for patient-oriented support: Those affected wished for timely, preventive support (especially in administrative and socio-legal matters) and education regarding psychosocial care services. CONCLUSION: RD represent a great challenge for all family members – patients, parents, and siblings. The patients’ and parents’ previous experiences in daily life, medical and psychosocial care show a need for target-group specific support, including training of health care professionals and low-threshold access care services and practical help for all family members. BioMed Central 2023-08-11 /pmc/articles/PMC10422846/ /pubmed/37568186 http://dx.doi.org/10.1186/s13023-023-02837-9 Text en © The Author(s) 2023 https://creativecommons.org/licenses/by/4.0/Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/ (https://creativecommons.org/licenses/by/4.0/) . The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/ (https://creativecommons.org/publicdomain/zero/1.0/) ) applies to the data made available in this article, unless otherwise stated in a credit line to the data. |
spellingShingle | Research Witt, Stefanie Schuett, Katharina Wiegand-Grefe, Silke Boettcher, Johannes Quitmann, Julia Living with a rare disease - experiences and needs in pediatric patients and their parents |
title | Living with a rare disease - experiences and needs in pediatric patients and their parents |
title_full | Living with a rare disease - experiences and needs in pediatric patients and their parents |
title_fullStr | Living with a rare disease - experiences and needs in pediatric patients and their parents |
title_full_unstemmed | Living with a rare disease - experiences and needs in pediatric patients and their parents |
title_short | Living with a rare disease - experiences and needs in pediatric patients and their parents |
title_sort | living with a rare disease - experiences and needs in pediatric patients and their parents |
topic | Research |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10422846/ https://www.ncbi.nlm.nih.gov/pubmed/37568186 http://dx.doi.org/10.1186/s13023-023-02837-9 |
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