Understanding Parental Preferences for Participants in Medical Decision-making for Their Hospitalized Children

Dadlez, Nina M.; Bisonó, Gabriela M.; Williams, Camille Y.; Rosenthal, Susan L.; Hametz, Patricia

doi:10.1542/hpeds.2017-0008

Cited by 15 publications

(17 citation statements)

References 36 publications

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“…Some parents who have experienced shared medical decision making reported feeling that healthcare providers present information in a manner that encourages parents to agree with the healthcare provider recommendations. 46,47 The experience of the 22-week GA mother, referenced in the results, highlights how the P3 app can empower parents to effectively advocate their treatment preference to the medical team. We envision that the smartphone based education will supplement and not replace the information parents receive during preterm birth hospitalization.…”

Section: Discussionmentioning

confidence: 99%

“…Family deliberation is especially important for preterm birth decision making as research reveals that for high risk decisions the preference is to share the burden of decision making with the other parent. 46 Most P3 app users reported that because of the app they discussed pregnancy and prematurity issues with their partner and shared information with other family members.…”

Section: Discussionmentioning

confidence: 99%

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Smartphone-based prenatal education for parents with preterm birth risk factors

Kim

Barnekow

Ahamed

et al. 2019

Patient Education and Counseling

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Half of all premature births in the United States have preterm birth associated risk factors. • Prematurity education is currently offered to parents upon hospitalization for preterm birth. • Lack of prematurity education before the birth hospitalization leaves parents unprepared. • Smartphone-based prenatal prematurity education benefited parents at-risk for preterm birth. • In the majority of participants, the smartphone-based prenatal prematurity education did not increase parental anxiety.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Smartphone-based prenatal education for parents with preterm birth risk factors

Kim

Barnekow

Ahamed

et al. 2019

Patient Education and Counseling

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“…The present study found that the mean score on satisfaction with parental participation was significant. Additionally, as in other studies, involving parents in childcare was very important for the participant parents and increased their satisfaction with their children's healthcare (Dadlez et al, 2018).…”

Section: Discussionmentioning

confidence: 59%

“…From parents' point of view, effective treatment and care for their children, and a desire to maintain these factors, are universal (Disch & Adwan, 2014). The presence of parents and their participation in care is an aspect of caregiving that should not be ignored because it reduces emotional stress in the child, increases their feeling of trust, enables the child to cope with anxiety during hospitalization and protects the parent–child relationship while meeting the needs of both parties (Dadlez, Bisono, Williams, Rosenthal, & Hametz, 2018; Daneman et al, 2003).…”

Section: Introductionmentioning

confidence: 99%

The effect of parental participation in the care of hospitalized children on parent satisfaction and parent and child anxiety: Randomized controlled trial

Çamur

Karabudak

2020

Int J of Nursing Practice

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Background Child hospitalization is a stressful experience for both children and their parents. Parents should establish effective communication with healthcare professionals to be able to participate in the care of their children in the hospital environment. Aims and Objectives The purpose of the study was to determine the effect of parental participation in the care of hospitalized children on parent satisfaction and parent and child anxiety. Design The design used for this study was randomized controlled trial. Methods The study data were collected between 1 February and 31 May 2016. Frequency, percentage, paired t test, Mann–Whitney U and Wilcoxon were used to analyse the data. Results The study compared the parents' pretest and posttest scores on the anxiety and found that there was a statistically significant difference between the posttest scores of intervention and control groups. There was also a statistically significant difference parental participation and overall satisfaction subscales of the parent satisfaction as well as their total scores and mean scores. Comparison of the children's posttest scores on the anxiety inventory also found a statistically significant difference. Conclusion The study concluded that parental participation in the care of hospitalized children increases parent satisfaction with healthcare, and reduces anxiety of both parents and children.

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“…Most of the changes families would like to see are reported by caregivers of individuals with other rare conditions as well. This desire of family caregivers to improve care by including aspects of FCC has been noted in numerous studies (Dadlez et al, 2018;Michael et al, 2014;Uhl et al,2013). The desire to increase collaboration between family caregivers with their indepth knowledge and lived experience of providing care to a loved one with a rare condition and healthcare providers has been noted by both caregivers (Currie & Szabo, 2019) and members in the medical community (Baumbusch et al, 2018), with an understanding that listening to patient feedback would help develop a greater trusting relationship between the two (Gómez-Zúñiga et al, 2019).…”

Section: Discussionmentioning

confidence: 98%

Caregivers of individuals with Rubinstein–Taybi syndrome: Perspectives, experiences, and relationships with medical professionals

Webster

Wiley

Schorry

et al. 2021

Journal of Genetic Counseling

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Rubinstein-Taybi syndrome (RTS) is a rare genetic disorder. Family-centered care (FCC) is a healthcare delivery approach that aims to create an equal partnership between caregivers and providers. FCC has been shown to improve parental wellbeing, their knowledge of the condition and care, and improve their feelings of self-efficacy and personal control. The purpose of this study was to explore the healthcare experiences of family caregivers of children and adults with RTS to understand the issues they encounter when working with medical professionals and to examine their perspectives on how to improve FCC. Primary family caregivers of individuals with RTS took an online mixed-method survey that contained three primary components: a demographic survey, the Measures of Processes of Care-20 (MPOC-20) [a measure of the FCC an individual feels they receive], and a qualitative assessment of negative and positive interactions with medical professionals and priority areas for improvement. Qualitative data were analyzed using thematic analysis. Quantitative data were analyzed with descriptive statistics. An analysis of variance test was used to determine whether values statistically differed between different-age groups of individuals with RTS being cared for. Sixty-three caregivers completed the survey. The average score of the Providing General Information subscale of the MPOC-20 was 3.18, lower than that seen in other studies. The average scores of the other subscales of the MPOC-20 ranged from 4.60 to 5.02, comparable to other studies of caregivers of children with other medical conditions. All aspects of FCC were ranked as important by caregivers. There were no differences in MPOC-20 values between those caring for the individuals with RTS in different-age groups reviewed. In the qualitative responses, parents noted that experiences with medical professionals would be improved if healthcare providers actively provided FCC, collaborated with parents and other providers, respected caregivers' time and breadth of knowledge and lived experience, gave a more balanced description of the condition, showed greater respect toward their loved ones and included them in the conversation, and made an effort to learn about RTS. The changes that parents would like to see in their child's care were not specific to one discipline and could be implemented by all healthcare specialists.

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Understanding Parental Preferences for Participants in Medical Decision-making for Their Hospitalized Children

Abstract: Parents of hospitalized children want to participate in medical decision-making. Desire for the involvement of other family members is complex; therefore, discussions regarding parental preferences are necessary.

Cited by 15 publications

References 36 publications

Smartphone-based prenatal education for parents with preterm birth risk factors

Smartphone-based prenatal education for parents with preterm birth risk factors

The effect of parental participation in the care of hospitalized children on parent satisfaction and parent and child anxiety: Randomized controlled trial

Caregivers of individuals with Rubinstein–Taybi syndrome: Perspectives, experiences, and relationships with medical professionals

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