Mitochondrial disease: needs and problems of children, their parents and family. A systematic review and pilot study into the need for information of parents during the diagnostic phase.

Title

Mitochondrial disease: needs and problems of children, their parents and family. A systematic review and pilot study into the need for information of parents during the diagnostic phase.

Creator

Noorda G; Hermans-Peters M; Smeitink JA; van Achterberg T; Kemps H; Goverde W; Schoonhoven L

Publisher

Journal Of Inherited Metabolic Disease

Date

2007

Subject

Child; Humans; Adult; Parent-Child Relations; Interviews as Topic; Questionnaires; Pilot Projects; Research Design; Longitudinal Studies; Patient Selection; Reproducibility of Results; Mitochondrial Diseases/diagnosis/psychology; Parents/education

Description

OBJECTIVE: Firstly, this paper aims to systematically review the mitochondrial disease literature to identify studies assessing the needs and problems in the daily life of children with a mitochondrial disease and of their parents and family. The second aim is to provide more insight into the need for information by the parents of these children during the diagnostic process while in hospital. DESIGN: A systematic review and a pilot study, using a qualitative (focus group interviews; n = 7) and a quantitative (questionnaire; n = 37) design. RESULTS: Mothers reported great socioeconomic and psychoaffective strain and showed psychopathological symptoms in the two studies published with respect to this topic. The pilot study showed that parents considered an honest and interested attitude of the person who is giving the information as most important. Furthermore they wanted oral and written information and a central point where they could go with their questions at any time they felt the need. The need for information increased during the four phases of the diagnostic process and was highest in the fourth phase. CONCLUSIONS: The few studies found in the review, combined with expectations that having a mitochondrial disease must have a great impact on these children and their parents and family, call for more research in their needs and problems. Furthermore, there are gaps in the current information provision to parents of these children. A better understanding of the needs and problems of these children and their family is essential for effective care planning and might result in an improved quality of life.
2007

Rights

Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).

Type

Journal Article

Citation List Month

Backlog

Pages

333-340

Issue

3

Volume

30

Citation

Noorda G; Hermans-Peters M; Smeitink JA; van Achterberg T; Kemps H; Goverde W; Schoonhoven L, “Mitochondrial disease: needs and problems of children, their parents and family. A systematic review and pilot study into the need for information of parents during the diagnostic phase.,” Pediatric Palliative Care Library, accessed May 17, 2022, https://pedpalascnetlibrary.omeka.net/items/show/14433.

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