Mothers' Support Preferences With Their Chronically Ill Child's Health Care Team
Pediatric palliative care; Health communication; Pediatric nursing; Chronic illness; Social support
Children living with medical complexities are a growing population in the United States. Supportive pediatric health care team members are arguably the single most important factor in helping mothers manage their child's multifaceted condition. To better understand what constitutes helpful support from health care team members, we interviewed 17 mothers affiliated with a pediatric palliative care program at a large Midwestern U.S. hospital. Using Charmaz's approach to grounded theory analysis, we found that mothers desired a collaborative partnership with their child's health care team. However, the development of this partnership was contingent upon team members' effective use of informational, emotional, and network support. We identified two specific strategies that qualified each of these three different types of helpful supportive communication. These strategies may be implemented into training and educational programs for health care professionals to improve their communication skills.
Rafferty KA; Nemmers-Bello S; Tietz S; Lipovac M
Western Journal of Nursing Research
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/01939459211030338" target="_blank" rel="noreferrer noopener">10.1177/01939459211030338</a>
A Qualitative Examination Of Physician Gender And Parental Status In Pediatric End-of-life Communication
In this study we utilized the framework of patient-centered communication to explore the influence of physician gender and physician parental status on (1) physician-parent communication and (2) care of pediatric patients at the end of life (EOL). The findings presented here emerged from a larger qualitative study that explored physician narratives surrounding pediatric EOL communication. The current study includes 17 pediatric critical care and pediatric emergency medicine physician participants who completed narrative interviews between March and October 2012 to discuss how their backgrounds influenced their approaches to pediatric EOL communication. Between April and June of 2013, participants completed a second round of narrative interviews to discuss topics generated out of the first round of interviews. We used grounded theory to inform the design and analysis of the study. Findings indicated that physician gender is related to pediatric EOL communication and care in two primary ways: (1) the level of physician emotional distress and (2) the way physicians perceive the influence of gender on communication. Additionally, parental status emerged as an important theme as it related to EOL decision-making and communication, emotional distress, and empathy. Although physicians reported experiencing more emotional distress related to interacting with patients at the EOL after they became parents, they also felt that they were better able to show empathy to parents of their patients.
Bateman LB; White ML; Tofil NM; Clair JM; Needham BL
Health Communication
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="https://doi.org/10.1080/10410236.2016.1196412">10.1080/10410236.2016.1196412</a>
A Time to Live and a Time to Die: Heterotopian Spatialities and Temporalities in a Pediatric Palliative Care Team
Anthropology; Attitude to Death; child; communication; death; humans; palliative care; Parents/psychology; patient care team; pediatric hospitals; pediatrics; spatial analysis; time factors; uncertainty
The death of a child creates especially poignant feelings and extreme stress, distress, and devastation for family members and healthcare providers. In addition, serious or long-term illness forces a reconstruction of our experiences with time and space. In this paper, we report on a long-term ethnographic study of a Pediatric Palliative Care Team (PPCT). Using the concepts of spatiality and temporality; Deleuze's concepts of smooth and striated spaces; Innis's concepts of space and time biases; Foucault's concept of heterotopian space-places with multiple layers of meaning; and a related concept of heterokairoi-moments in time with multiple possibilities-we consider how the PPCT constructs and reconstructs meaning in the midst of chaos, ethical dilemmas, and heartbreaking choices.
Davis C S; Snider M J; King L; Shukraft A; Sonda J D; Hicks L; Irvin L
Health Communication
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1080/10410236.2018.1443262" target="_blank" rel="noreferrer noopener">10.1080/10410236.2018.1443262</a>
Parent perceptions of the quality of information received about a child's cancer
adolescent; Child; Cross-Sectional Studies; Female; Humans; infant; Male; Neoplasms; Adult; Parents; Questionnaires; Professional-Family Relations; Preschool; Health Communication
BACKGROUND: Parents' perceptions of the quality of information communicated by their child's oncologist about the child's cancer are not well understood. PROCEDURE: We conducted a cross-sectional survey of 194 parents of children with cancer (response rate 70%), treated at the Dana-Farber Cancer Institute and Boston Children's Hospital, Boston, Mass, and the children's physicians. Parents were asked to report the quality of information received about the child's cancer in several domains. RESULTS: Most parents reported that information about their child's cancer had been excellent (49%) or good (41%) overall, and ratings were similar for information about diagnosis (P = 0.62) and treatment (P = 0.59). Fewer parents felt they received high quality information about how cancer treatment is working (P < 0.001), likelihood of cure (P < 0.001), what the diagnosis means for the future (P < 0.001), and whether there is a cause for the child's cancer (P < 0.001). In multivariable models, parents were more likely to consider information of high quality when they also rated physician communication style highly. The accuracy of their knowledge on likelihood of cure and the child's future limitations, however, was not associated with quality ratings. CONCLUSIONS: Although parents feel that they have received high quality cancer information overall, parents feel they receive lower quality information about issues relating to the child's future. Yet quality ratings are not associated with their actual knowledge. Parent perceptions of quality represent one, but not the only, facet of communication quality.
2013-11
Kaye E; Mack JW
Pediatric Blood & Cancer
2013
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1002/pbc.24652" target="_blank" rel="noreferrer">10.1002/pbc.24652</a>
Communication and the Appraisal of Uncertainty: Exploring Parents' Communication with Credible Authorities in the Context of Chronic Childhood Illness
semi structured interview; terminal care; diagnostic error; human; article; child; female; male; diagnosis; childhood; clinical article; uncertainty; congenital blood vessel malformation
Individuals with chronic illnesses must manage long-term uncertainty as they cope with the ways the illness influences their lives. In the context of pediatric illnesses, parents must manage uncertainty during the diagnosis and treatment of their child's illness. It is common for children with complex chronic illnesses to see multiple specialists for the treatment of their condition. While previous research has explored parents' uncertainty during a child's diagnosis and during end-of-life care, less is known about these experiences when the child is referred to a team of specialists for treatment. The aim of the current study was to explore how specialists, as credible authorities, influence parents' uncertainty during parents' first visit to a multidisciplinary clinic for the care of their child's complex chronic illness. Data were collected through semi-structured interviews with 29 parents after their child's first visit to a vascular anomaly clinic at a large Midwestern children's hospital. The results suggest parents' communication with credible authorities facilitates effective uncertainty management primarily through the mechanism of uncertainty reappraisal. The results also suggest that specialists, as credible authorities, are a key mechanism in the appraisal of uncertainty for conditions that are often misdiagnosed and mismanaged.
Kerr AM; Harrington NG; Scott AM
Health communication
2019
<a href="http://doi.org/10.1080/10410236.2017.1399508" target="_blank" rel="noreferrer noopener">10.1080/10410236.2017.1399508</a>
When Facing Hopeful and Hopeless Experiences: Using Snyder's Hope Theory to Understand Parents' Caregiving Experiences for Their Medically Complex Child
health communication; hope theory; Parent–child relationships; parental caregivers; pediatric complex chronic conditions
INTRODUCTION: An emerging subpopulation within pediatric chronic illness is children living with complex chronic conditions. Managing a child's complex chronic conditions can be emotionally taxing for parents. Many parents regard hope as a "life-sustaining and essential" process for them. METHOD: We used the central concepts within Snyder's hope theory to guide our directed content analysis of parents' interviews about their hopeful and hopeless experiences. Our sample consisted of primarily Christian married mothers. RESULTS: We found themes within each concept of Snyder's hope theory that clarifies the social and communicative processes that facilitate more hopeful thinking for parents. DISCUSSION: Understanding how individuals communicate or enact hopeful thinking is an important contributor to performing hope in social settings like hospitals and nonprofit organizations (Ronald McDonald House) that support parents with medically complex children. Our findings indicate that messages should help parents identify care solutions, offer words of encouragement, and help parents create life goals that maintain a child's quality of life.
Rafferty K A; Beck G; McGuire M
Journal of Pediatric Health Care
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.pedhc.2020.06.003" target="_blank" rel="noreferrer noopener">10.1016/j.pedhc.2020.06.003</a>
"You Are Not Alone": Advice Giving for Parents of Children Living with Complex Chronic Conditions
complex chronic conditions; Advice; health communication; parental caregivers; pediatric healthcare; social support
Parental advice giving serves as an important form of informational support for parents of children living with complex chronic conditions (CCCs). These messages can provide backchannel insights into social challenges, best practices, and may offer different forms of experiential wisdom garnered from their own parental caregiving experiences. Contributing to the naturalistic, health-context investigations of advice messages, we interviewed 35 parents who discussed their experiences with parenting their medically complex child. Part of the broader interview protocol asked parents about advice they would offer to other parents like them. We conducted a thematic analysis of parents' responses to these questions to understand advice content, form of advice giving messages, challenges experienced by parents, and suggested best practices for managing a child's CCC. We present our findings and discuss implications on educating health care professionals about how to cultivate advice networks and the need for more parent peer mentoring programs.
Rafferty KA; Beck GA
Health Communication
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1080/10410236.2019.1636341" target="_blank" rel="noreferrer noopener">10.1080/10410236.2019.1636341</a>
"I Will Communicate With You, But Let Me Be In Control": Understanding How Parents Manage Private Information About Their Chronically Ill Children.
Parents have a significant role in the management of a child's chronic condition. Parents are often the only consistent individuals managing a child's health across his or her childhood and adolescence (e.g., present for all appointments and medical procedures). Many of the responsibilities required of parents involve communication work, where parents must strategically and actively design messages as they interact with medical professionals, other family, and friends. Using communication privacy management theory, we analyzed interviews conducted with 35 parents to understand the motivations and strategies involved in their regulation of information about their child's chronic condition. These findings have important practical implications because parental involvement in a chronically ill child's care has direct effects on familial adaptation and adjustment.
Rafferty KA; Hutton K; Heller S
Health Communication
2017
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="https://doi.org/10.1080/10410236.2017.1384432" target="_blank" rel="noreferrer">10.1080/10410236.2017.1384432</a>
"you Know The Medicine, I Know My Kid": How Parents Advocate For Their Children Living With Complex Chronic Conditions
Caring for a child with a chronic condition has received considerable attention in the pediatric health literature. Today, approximately 1 out of 5 North American children are diagnosed with a chronic condition that requires parents to become caregivers and advocates. Although advocacy is regarded as a significant aspect to parental caregiving, more research is needed to better define this oversimplified and misrepresented concept in clinical practice and research. Subsequently, we interviewed 35 parents of children diagnosed with complex chronic conditions. Within our analysis, we identified three themes that elaborate upon how parental advocacy is socially constructed through communication behaviors and partnerships with other people (e.g., medical professionals, family, school educators). We also discuss the emotional side of advocacy, and proffer suggestions to practitioners who work with parents to form collaborative care teams.
Rafferty KA; Sullivan SL
Health Communication
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
DOI: 10.1080/10410236.2016.1214221
End-of-Life Decision Making Between Doctors and Parents in NICU: The Development and Assessment of a Conversation Analysis Coding Framework
Conversation; Critically ill patient; Decision making; Disability; Doctors; Interrater reliability; Parents
We report the development and assessment of a novel coding framework in the context of research into neonatal end-of-life decision making conversations. Data comprised 27 formal conversations between doctors and parents of critically ill babies, recorded in two neonatal intensive care units. The coding framework was developed from a qualitative analysis of the recordings using the method of conversation analysis (CA). Codes underpinned by our qualitative analysis had in the main moderate to strong agreement (inter-rater reliability) between coders; three codes had lower agreement reflecting the use of euphemisms for death and disability. Coding these interactions confirmed the significance of the doctors' talk in terms of parental involvement in decision-making, whilst highlighting areas warranting further qualitative analysis. This quantifiable representation provides a novel outcome based on evidence that is internal to the conversation rather than influenced by other factors related to the baby's care or outcome.
Shaw C; Connabeer K; Drew P; Gallagher K; Aladangady N; Marlow N
Health Communication
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1080/10410236.2022.2059800" target="_blank" rel="noreferrer noopener">10.1080/10410236.2022.2059800</a>
Death Talk: Basic Linguistic Rules And Communication In Perinatal And Paediatric End-of-life Discussions.
Communication; Death; Decision Making; Female; Humans; Linguistics; Male; Parents/psychology; Pediatrics; Perinatal Death; Pregnancy; Professional-family Relations; Terminal Care/methods; Terminally Ill
Consumer Health Information; Decision-making; End-of-life Care; Health Communication
OBJECTIVE:
This paper considers clinician/parent communication difficulties noted by parents involved in end-of-life decision-making in the light of linguistic theory.
METHODS:
Grice's Cooperative Principle and associated maxims, which enable effective communication, are examined in relation to communication deficiencies that parents have identified when making end-of-life decisions for the child. Examples from the literature are provided to clarify the impact of failing to observe the maxims on parents and on clinician/parent communication.
RESULTS:
Linguistic theory applied to the literature on parental concerns about clinician/parent communication shows that the violation of the maxims of quantity, quality, relation, and manner as well as the stance that some clinicians adopt during discussions with parents impact on clinician/parent communication and lead to distrust, anger, sadness, and long-term difficulties coping with the experience of losing one's child.
CONCLUSION:
Parents have identified communication deficiencies in end-of-life discussions. Relating these communication deficiencies to linguistic theory provides insight into communication difficulties but also solutions.
PRACTICE IMPLICATIONS:
Gaining an understanding of basic linguistic theory that underlies human interactions, gaining insight into the communication deficiencies that parents have identified, and modifying some communication behaviours in light of these with the suggestions made in this article may lead to improved clinician/parent communication.
Xafis V; Watkins A; Wilkinson D
Patient Education And Counseling
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).