Dataset Information

Parents' perceptions of core outcomes in neonatal research in two Nigerian neonatal units.

ABSTRACT:

Background

There is a scarcity of information regarding the most important outcomes for research in neonatal units in low-resource settings. Identification of important outcomes by different stakeholder groups would inform the development of a core outcome set (COS) for use in neonatal research.

Objective

To determine the perceptions and opinions of parents of newborn babies regarding what outcomes were most important to them in order to contribute towards development of a COS for neonatal research in sub-Saharan Africa.

Methods

Semistructured interviews were undertaken with parents, mostly mothers, of babies admitted to one neonatal unit in North central and one in Southwest Nigeria. Participants were purposively sampled to include parents of babies with common neonatal problems such as prematurity.

Results

We conducted 31 interviews. The most frequently raised outcomes were breast feeding, good health outcomes for their baby, education, growth and financial cost. Parents placed more emphasis on quality of life and functional status than health complications.

Conclusions

The opinions of parents need to be considered in developing a COS for neonatal research in low-resource settings. Further research should assess the opinions of families in other low-resource settings and also engage a broader range of stakeholders.

SUBMITTER: Read SK

PROVIDER: S-EPMC7279647 | biostudies-literature | 2020

REPOSITORIES: biostudies-literature

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Publications

Parents' perceptions of core outcomes in neonatal research in two Nigerian neonatal units.

Read Sarah Kathryn SK Jibril Aisha A Tongo Olukemi O Akindolire Abimbole A Abdulkadir Isa I Nabwera Helen H Sinha Ian I Allen Stephen S

BMJ paediatrics open 20200604 1

<h4>Background</h4>There is a scarcity of information regarding the most important outcomes for research in neonatal units in low-resource settings. Identification of important outcomes by different stakeholder groups would inform the development of a core outcome set (COS) for use in neonatal research.<h4>Objective</h4>To determine the perceptions and opinions of parents of newborn babies regarding what outcomes were most important to them in order to contribute towards development of a COS for ...[more]

PMID: 32548311

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Project description:BackgroundChildren's intentions should be respected. Parents are the key persons involved in decision-making related to their children. In Japan, the appropriate ages and standards for a child's consent and assent, approval, and decision-making are not clearly defined, which makes the process of obtaining consent and assent for clinical research complex. The purpose of this paper is as follows: to understand the attitudes and motives of parents concerning children's participation in medical research and the factors influencing their decision-making. We also sought to clarify who has the right to be involved in decisions regarding children's participation in research.MethodsA semi-structured Internet survey on parents' opinions and attitudes and preferences concerning medical research involvement was conducted. Children were divided into three age groups (6-10-year-olds, 11-14-year-olds, and 15-18-year-olds), with three illness severity categories. Possible correlations between the number of children, children's ages, parents' educational levels, and parents' attitudes were examined.ResultsAmong the participants, 42.3% recognized the term "informed consent." The proportion of participants who understood "informed consent" increased with educational level. Four out of five participants did not know, or had not heard of, the term "informed assent." Furthermore, the percentage of those who understood the term "informed assent" increased with academic level. Participants generally believed in prioritizing parents' opinions over children's, and that parents and children would ideally reach a joint decision. Although many parents favored collaborative decision-making, they also wanted their own will reflected in the decision and felt they should receive important information before their children do. Decision-making was affected by the condition's severity and prognosis. This indicates that most Japanese parents believe that their children have the right to know their disease name and treatment; nonetheless, they should be protected. Parents' values and judgments regarding medical intervention involving their children varied.ConclusionsChildren's ability to consent to treatment and research believed to be in their best interests should be assessed appropriately. They should be permitted to provide consent or assent, and their views should be respected. Involving children in decision-making fosters more open communication and transparency between medical professionals, parents, and children.

Dataset Information

Parents' perceptions of core outcomes in neonatal research in two Nigerian neonatal units.

Background

Objective

Methods

Results

Conclusions

Publications

Parents' perceptions of core outcomes in neonatal research in two Nigerian neonatal units.

Similar Datasets

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