Integration of Parent and Nurse Perspectives of Communication to Plan Care for Technology Dependent Children: The Theory of Shared Communication

Giambra, Barbara K.; Broome, Marion E.; Sabourin, Teresa Chandler; Buelow, Janice M.; Stiffler, Deborah

doi:10.1016/j.pedn.2017.01.014

Cited by 14 publications

(19 citation statements)

References 15 publications

Supporting

Mentioning

Contrasting

Unclassified

Order By: Relevance

“…Future interventions will need to consider the evolution of families' relationship with health care providers, described by Thorne and Robinson [26][27][28] as moving from "naïve trusting" to "disenchantment" to "guarded alliance." In future work, researchers should also consider the theory of shared communication described by Giambra et al 29,30 As visualized in our conceptual model (Fig Our study has several strengths. We obtained in-depth qualitative data using interviews and family journaling from a broad group of families whose children had extensive histories of hospitalizations and clinical deteriorations.…”

Section: Conceptual Modelmentioning

confidence: 96%

The Parent Role in Advocating for a Deteriorating Child: A Qualitative Study

Brady

Giambra

Sherman³

et al. 2020

Hospital Pediatrics

Self Cite

View full text Add to dashboard Cite

BACKGROUND AND OBJECTIVES: Families of children with medical complexity are experts on their child's baseline behavior and temperament and may recognize changes in their hospitalized child's health before clinicians. Our objective was to develop a comprehensive understanding of how families identify and communicate their child's deteriorating health with the hospital-based health care team. METHODS:In this qualitative study, our multidisciplinary team recruited family members of hospitalized children with neurologic impairment. Interviews, conducted in the hospital, were audio recorded, deidentified, and transcribed. By using inductive thematic analysis, each transcript was independently coded by 3 or 4 team members. Members met regularly to reach consensus on coding decisions. Patterns observed were organized into themes and subthemes.RESULTS: Participants included 28 family members of 26 hospitalized children 9 months to 17 years of age. Children had a mean of 9 hospitalizations in the previous 3 years. Analysis resulted in 6 themes. First, families often reported their child "writes his own book," meaning the child's illness narrative rarely conformed to textbooks. Second, families developed informal, learned pathways to navigate the inpatient system. Third, families stressed the importance of advocacy. Fourth, families self-identified as "not your typical parents" and discussed how they learned their roles as part of the care team. Fifth, medical culture often did not support partnership. Finally, families noted they are often "running on empty" from stress, fear, and lack of sleep.CONCLUSIONS: Families of children with medical complexity employ mature, experience-based pathways to identify deteriorating health. Existing communication structures in the hospital are poorly equipped to incorporate families' expertise.

show abstract

Section: Conceptual Modelmentioning

confidence: 96%

The Parent Role in Advocating for a Deteriorating Child: A Qualitative Study

Brady

Giambra

Sherman³

et al. 2020

Hospital Pediatrics

Self Cite

View full text Add to dashboard Cite

show abstract

“…Relational communication behaviors included in the process are asking, listening, explaining, advocating, negotiating roles, and verifying understanding (defined in Table 1). The use of these behaviors was perceived by both parents and nurses to be foundational for the achievement of mutual understanding of the plan of care for the child with a chronic condition while the child was hospitalized (Giambra, Broome, Sabourin, Buelow, & Stiffler, 2017). Whether the TSC communication behaviors used by parents and nurses in the inpatient setting are also used in the outpatient clinic setting to discuss the care of a child with a chronic condition has not been studied.…”

Section: Background/significancementioning

confidence: 99%

Exploration of Parent–Provider Communication During Clinic Visits for Children With Chronic Conditions

Giambra¹,

Haas²,

Britto³

et al. 2018

Journal of Pediatric Health Care

Self Cite

View full text Add to dashboard Cite

show abstract

“…On the contrary, most of the time nurses and other clinical staff attention is primarily focused on the needs of the critically ill children, with little consideration paid to the parents’ needs [4]. Parents require guidance from healthcare providers, especially when they are in high tech and potentially frightening environment like an ICU, in order to effectively provide care for their children [5, 6]. Parents rely on the guidance of nurses’ who are continually present in the ICU rather than other healthcare providers, including doctors, who commonly only meet with parents during ward rounds.…”

Section: Introductionmentioning

confidence: 99%

Parents and nurses telling their stories: the perceived needs of parents caring for critically ill children at the Kilimanjaro Christian Medical Centre in Tanzania

2019

View full text Add to dashboard Cite

BackgroundParents have significant responsibility in the care of their critically ill children who have been admitted to the intensive care unit (ICU). When staying with their children in the hospital, they also have particular needs that should be adequately acknowledged and responded to by healthcare providers. Moreover, when their needs are not identified and addressed, parents may experience stress and anxiety as a result. This study describes the needs of parents caring for hospitalized critically ill children, as perceived by parents and nurses.MethodsThis study used a descriptive qualitative research design. Five focus group discussions with nurses and parents of critically ill children, who were purposefully recruited, were conducted at the Kilimanjaro Christian Medical Centre Hospital. A qualitative content analysis guided the analysis of the data.ResultsTwo themes emerged from the perceptions of parents and nurses about the needs of parents caring for hospitalized critically ill children. These were: “engaging parents in the care of their children” and “receiving psychosocial support”. Both parents and nurses identified the importance of providing adequate information about their children’s progress, encouraging and involving parents in the care of their children and having flexible visiting time for parents was vital when caring for critically ill children.ConclusionsThis study provides an in-depth understanding of parents’ needs when caring for critically ill children in the hospital setting. Nurses caring for these children should understand the needs of parents and integrate the parents into the daily care of their children. Nurses should also continuously support, inform and engage parents during child-caring procedures. Finally, visiting times for intensive care units should be flexible and allow more time for parents to connect with their hospitalized children.

show abstract

Integration of Parent and Nurse Perspectives of Communication to Plan Care for Technology Dependent Children: The Theory of Shared Communication

Cited by 14 publications

References 15 publications

The Parent Role in Advocating for a Deteriorating Child: A Qualitative Study

The Parent Role in Advocating for a Deteriorating Child: A Qualitative Study

Exploration of Parent–Provider Communication During Clinic Visits for Children With Chronic Conditions

Parents and nurses telling their stories: the perceived needs of parents caring for critically ill children at the Kilimanjaro Christian Medical Centre in Tanzania

Contact Info

Product

Resources

About