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Treatment non-adherence in pediatric long-term medical conditions: systematic review and synthesis of qualitative studies of caregivers' views

Treatment non-adherence in pediatric long-term medical conditions: systematic review and synthesis of qualitative studies of caregivers' views
Treatment non-adherence in pediatric long-term medical conditions: systematic review and synthesis of qualitative studies of caregivers' views
Background

Non-adherence to prescribed treatments is the primary cause of treatment failure in pediatric long-term conditions. Greater understanding of parents and caregivers’ reasons for non-adherence can help to address this problem and improve outcomes for children with long-term conditions.

Methods

We carried out a systematic review and thematic synthesis of qualitative studies. Medline, Embase, Cinahl and PsycInfo were searched for relevant studies published in English and German between 1996 and 2011. Papers were included if they contained qualitative data, for example from interviews or focus groups, reporting the views of parents and caregivers of children with a range of long-term conditions on their treatment adherence. Papers were quality assessed and analysed using thematic synthesis.

Results

Nineteen papers were included reporting 17 studies with caregivers from 423 households in five countries. Long-term conditions included; asthma, cystic fibrosis, HIV, diabetes and juvenile arthritis. Across all conditions caregivers were making on-going attempts to balance competing concerns about the treatment (such as perceived effectiveness or fear of side effects) with the condition itself (for instance perceived long-term threat to child). Although the barriers to implementing treatment regimens varied across the different conditions (including complexity and time-consuming nature of treatments, un-palatability and side-effects of medications), it was clear that caregivers worked hard to overcome these day-to-day challenges and to deal with child resistance to treatments. Yet, carers reported that strict treatment adherence, which is expected by health professionals, could threaten their priorities around preserving family relationships and providing a ‘normal life’ for their child and any siblings.

Conclusions

Treatment adherence in long-term pediatric conditions is a complex issue which needs to be seen in the context of caregivers balancing the everyday needs of the child within everyday family life. Health professionals may be able to help caregivers respond positively to the challenge of treatment adherence for long-term conditions by simplifying treatment regimens to minimise impact on family life and being aware of difficulties around child resistance and supportive of strategies to attempt to overcome this. Caregivers would also welcome help with communicating with children about treatment goals.
qualitative research, qualitative synthesis, child health, medication adherence, long-term conditions, caregivers
1471-2431
1-10
Santer, M.
3ce7e832-31eb-4d27-9876-3a1cd7f381dc
Ring, N.
a7c4e67b-b168-4184-8d0d-a1c63629f8f2
Yardley, L.
64be42c4-511d-484d-abaa-f8813452a22e
Geraghty, A.W.
2c6549fe-9868-4806-b65a-21881c1930af
Wyke, S.
65b17997-94a6-44ea-9b43-efc5bf308f58
Santer, M.
3ce7e832-31eb-4d27-9876-3a1cd7f381dc
Ring, N.
a7c4e67b-b168-4184-8d0d-a1c63629f8f2
Yardley, L.
64be42c4-511d-484d-abaa-f8813452a22e
Geraghty, A.W.
2c6549fe-9868-4806-b65a-21881c1930af
Wyke, S.
65b17997-94a6-44ea-9b43-efc5bf308f58

Santer, M., Ring, N., Yardley, L., Geraghty, A.W. and Wyke, S. (2014) Treatment non-adherence in pediatric long-term medical conditions: systematic review and synthesis of qualitative studies of caregivers' views. BMC Pediatrics, 14 (63), 1-10. (doi:10.1186/1471-2431-14-63). (PMID:24593304)

Record type: Article

Abstract

Background

Non-adherence to prescribed treatments is the primary cause of treatment failure in pediatric long-term conditions. Greater understanding of parents and caregivers’ reasons for non-adherence can help to address this problem and improve outcomes for children with long-term conditions.

Methods

We carried out a systematic review and thematic synthesis of qualitative studies. Medline, Embase, Cinahl and PsycInfo were searched for relevant studies published in English and German between 1996 and 2011. Papers were included if they contained qualitative data, for example from interviews or focus groups, reporting the views of parents and caregivers of children with a range of long-term conditions on their treatment adherence. Papers were quality assessed and analysed using thematic synthesis.

Results

Nineteen papers were included reporting 17 studies with caregivers from 423 households in five countries. Long-term conditions included; asthma, cystic fibrosis, HIV, diabetes and juvenile arthritis. Across all conditions caregivers were making on-going attempts to balance competing concerns about the treatment (such as perceived effectiveness or fear of side effects) with the condition itself (for instance perceived long-term threat to child). Although the barriers to implementing treatment regimens varied across the different conditions (including complexity and time-consuming nature of treatments, un-palatability and side-effects of medications), it was clear that caregivers worked hard to overcome these day-to-day challenges and to deal with child resistance to treatments. Yet, carers reported that strict treatment adherence, which is expected by health professionals, could threaten their priorities around preserving family relationships and providing a ‘normal life’ for their child and any siblings.

Conclusions

Treatment adherence in long-term pediatric conditions is a complex issue which needs to be seen in the context of caregivers balancing the everyday needs of the child within everyday family life. Health professionals may be able to help caregivers respond positively to the challenge of treatment adherence for long-term conditions by simplifying treatment regimens to minimise impact on family life and being aware of difficulties around child resistance and supportive of strategies to attempt to overcome this. Caregivers would also welcome help with communicating with children about treatment goals.

Text
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More information

Published date: 4 March 2014
Keywords: qualitative research, qualitative synthesis, child health, medication adherence, long-term conditions, caregivers
Organisations: Primary Care & Population Sciences

Identifiers

Local EPrints ID: 363475
URI: https://eprints.soton.ac.uk/id/eprint/363475
ISSN: 1471-2431
PURE UUID: a7fb0d8d-f91e-4bb2-8e3a-2c716f82c326
ORCID for M. Santer: ORCID iD orcid.org/0000-0001-7264-5260
ORCID for L. Yardley: ORCID iD orcid.org/0000-0002-3853-883X

Catalogue record

Date deposited: 25 Mar 2014 11:28
Last modified: 15 Oct 2019 00:49

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Contributors

Author: M. Santer ORCID iD
Author: N. Ring
Author: L. Yardley ORCID iD
Author: A.W. Geraghty
Author: S. Wyke

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