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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.

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.
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.
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=77) 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.
0141-8955
333-340
Noorda, G.
bf9a41b4-e402-4cd6-8866-397901d1e68c
Hermans-Peters, M.
fcf13724-2267-4ddc-8fb6-db79c01e222f
Smeitink, J.
c9635f5f-452c-4da3-ad3a-6c8240992878
van Achterberg, T.
1b413585-49b3-4989-a1b6-7fb4d4bac453
Kemps, H.
d3d5bca5-3fed-470a-8dc5-3a9717e712e1
Goverde, W.
4231fbf0-1640-4997-a9d2-56ba8072799e
Schoonhoven, L.
46a2705b-c657-409b-b9da-329d5b1b02de
Noorda, G.
bf9a41b4-e402-4cd6-8866-397901d1e68c
Hermans-Peters, M.
fcf13724-2267-4ddc-8fb6-db79c01e222f
Smeitink, J.
c9635f5f-452c-4da3-ad3a-6c8240992878
van Achterberg, T.
1b413585-49b3-4989-a1b6-7fb4d4bac453
Kemps, H.
d3d5bca5-3fed-470a-8dc5-3a9717e712e1
Goverde, W.
4231fbf0-1640-4997-a9d2-56ba8072799e
Schoonhoven, L.
46a2705b-c657-409b-b9da-329d5b1b02de

Noorda, G., Hermans-Peters, M., Smeitink, J., van Achterberg, T., Kemps, H., Goverde, W. and Schoonhoven, L. (2007) 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. Journal of Inherited Metabolic Disease, 30 (3), 333-340. (doi:10.1007/s10545-007-0426-0). (PMID:17508266)

Record type: Article

Abstract

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=77) 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.

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Accepted/In Press date: 14 February 2007
e-pub ahead of print date: 11 May 2007
Published date: June 2007
Organisations: Faculty of Health Sciences

Identifiers

Local EPrints ID: 386279
URI: http://eprints.soton.ac.uk/id/eprint/386279
ISSN: 0141-8955
PURE UUID: 68fbdb2f-b95a-423d-95b6-c8170194bdf0
ORCID for L. Schoonhoven: ORCID iD orcid.org/0000-0002-7129-3766

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Date deposited: 29 Jan 2016 12:40
Last modified: 20 Jul 2019 00:43

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