eHealth interventions for parents in neonatal intensive care units: a systematic review

Dol, Justine; Delahunty‐Pike, Alannah; Siani, Sheren Anwar; Campbell-Yeo, Marsha

doi:10.11124/jbisrir-2017-003439

Cited by 48 publications

(50 citation statements)

References 38 publications

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“…Alderdice et al recently published a study that reviewed potential websites that families found useful after discharge home [55]. A recent meta-analysis suggested families have generally accepted mHealth interventions while in the NICU [56] which may be translated to the outpatient settings as well. Other studies have supported the use of webcams in the NICU and videoconferencing with families at home [57,58].…”

Section: Discussionmentioning

confidence: 99%

Viewpoints from families for improving transition from NICU-to-home for infants with medical complexity at a safety net hospital: a qualitative study

et al. 2019

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Background: We have limited information on families' experiences during transition and after discharge from the neonatal intensive care unit. Methods: Open-ended semi-structured interviews were conducted with English or Spanish-speaking families enrolled in Medicaid in an urban high-risk infant follow up clinic at a safety-net center, which serves preterm and high-risk term infants. We generated salient themes using inductive-deductive thematic analysis. Results: Twenty-one participants completed the study. The infant's median (IQR) birth weight was 1750 (1305, 2641) grams; 71% were Hispanic and 10% were Black non-Hispanic; 62% reported living in a neighborhood with 3-4th quartile economic hardship. All were classified as having chronic disease per the Pediatric Medical Complexity Algorithm and 67% had medical complexity. A conceptual model was constructed and the analysis revealed major themes describing families' challenges and ideas to support transition centered on the parent-child role and parent self-efficacy. The challenges were: (1) comparison to normal babies, (2) caregiver mental health, (3) need for information. Ideas to support transition included, (1) support systems, (2) interventions using mobile health technology (3) improved communication to the primary care provider and (4) information regarding financial assistance programs. Specific subthemes differed in frequency counts between infants with and without medical complexity. Conclusions: Families often compare their preterm or high-risk infant to their peers and mothers feel great anxiety and stress. However, families often found hope and resilience in peer support and cited that in addition to information needs, interventions using mobile health technology and transition and financial systems could better support families after discharge.

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Section: Discussionmentioning

confidence: 99%

Viewpoints from families for improving transition from NICU-to-home for infants with medical complexity at a safety net hospital: a qualitative study

et al. 2019

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“…While convenient, information on the Internet is often unregulated and may be inaccurate, making it difficult for parents to evaluate the quality and relevance of the information (D'Alessandro & Dosa, 2001;Nicholl et al, 2017). In a systematic review on eHealth interventions for parents in neonatal intensive care, Dol et al (2017) reported that 84% of parents found information on the Internet harder to understand than information provided by clinicians. Moreover, 73% of parents reported that the information they found online was inadequate (Dol et al, 2017).…”

Section: Education and Information Methodsmentioning

confidence: 99%

“…Additionally, the information needs of parents with children with chronic illnesses may change over time as they become experts in their child's day-to-day management (Hummelinck & Pollock, 2006). With unmet informational needs, families increasingly seek out other sources of information, such as the Internet, to fill gaps in knowledge; however, parents often become frustrated by the lack of reliable and trustworthy informational resources (Dol et al, 2017;Lewis et al, 2005).…”

Section: Introductionmentioning

confidence: 99%

Exploring Informational Needs of Parents of Children with Intestinal Failure: A Thematic Analysis

Ragan

Duffett‐Leger

Laing

et al. 2021

Journal of Pediatric Nursing

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Information seeking has been observed to be important for the coping and empowerment of parents of children with rare diseases. This study was conducted to better understand the education needs of families of children with pediatric intestinal failure (IF) and how technology might be effectively leveraged to address these needs. We hypothesized families would benefit from an electronic education platform encompassing the aspects of medical and management knowledge required by parents. A qualitative methodology using thematic analysis (Braun & Clarke, 2006) was utilized. Purposeful sampling was adopted to recruit 10 parents/caregivers of children with IF who then participated in a 1:1 semi-structured interview. Interviews were recorded, transcribed and themes identified through open and focused coding. Four qualitative themes emerged: (1) reliable electronic or printed information resources relevant to their child's unique needs are lacking; (2) educational program with in-person and hands-on learning is preferred for transition to home; (3) practical and relatable information was valued over medical knowledge as children's needs evolved; and (4) creation of electronic resources would be useful for information seeking and sharing. This study revealed that parents of children with IF have high informational and educational needs and sought information beyond what they received.Participants stressed the importance of their informational needs related to practical day-to-day management rather than medical knowledge. Although digital resources were considered valuable, a blended approach of care team discussions and electronic tools was preferred for receiving knowledge and skills. Parents' connections with other caregivers was also noted as important for practical day-to-day management information, as well as supporting their wellbeing. Gaining an understanding of parents' informational needs will assist in the creation of a digital education tool that is accessible, user-friendly, and emphasizes practical information.iii Other practice implications include developing additional strategies to enhance parental coping and resiliency to reduce the stress associated with the uncertainty of their child's diagnosis.

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“…Provide telehealth support after discharge [150][151][152][153][154][155] 36. Use technology and social media to support families [156][157][158][159][160][161][162][163][164][165] 37. Facilitate access to all necessary clinical specialists after discharge 121,134 38.…”

Section: Addendummentioning

confidence: 99%

Our Responsibility to Follow Through for NICU Infants and Their Families

2020

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This supplemental material is licensed by Vermont Oxford Network under a Creative Commons Attribution-NonCommercial 4.0 International License Under the following terms:• Attribution -You must give appropriate credit, provide a link to the license, and indicate if changes were made You must indicate if you modified the material and retain an indication of previous modifications.You may do so in any reasonable manner, but not in any way that suggests the licensor endorses you or your use.

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eHealth interventions for parents in neonatal intensive care units: a systematic review

Cited by 48 publications

References 38 publications

Viewpoints from families for improving transition from NICU-to-home for infants with medical complexity at a safety net hospital: a qualitative study

Viewpoints from families for improving transition from NICU-to-home for infants with medical complexity at a safety net hospital: a qualitative study

Exploring Informational Needs of Parents of Children with Intestinal Failure: A Thematic Analysis

Our Responsibility to Follow Through for NICU Infants and Their Families

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