What Do Children with Chronic Diseases and Their Parents Think About Pediatricians? A Qualitative Interview Study

Konstantynowicz, Jerzy; Marcinowicz, Ludmiła; Abramowicz, Paweł; Abramowicz, Magdalena

doi:10.1007/s10995-016-1978-0

Cited by 25 publications

(22 citation statements)

References 21 publications

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“…While prior studies have emphasized the importance of clear communication with families during FCR ( 5 , 6 , 14 , 15 ), our study demonstrated that parents believe these factors also impact their engagement in the rounding process. One prior study showed, however, that fewer than half of parents understood the plan of care discussed during FCR ( 16 ).…”

Section: Discussioncontrasting

confidence: 60%

Parent Perspectives on Participation in Family-Centered Rounds and Informational Resource Use

et al. 2020

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Objectives: Family-centered rounds (FCR) can improve communication and patient/family engagement. While use of informational resources (e.g., tablets, computers on wheels, paper notes) can guide FCR, there are limited data concerning parental perspectives on how use of these resources during FCR, or other factors, affect their engagement. Our objectives were to examine parental perspectives on factors that affect their participation during FCR and preferences for informational resources used. Methods: We performed a cross-sectional study with English-speaking parents ( n = 200), of pediatric inpatients at an academic medical center, present during FCR. We surveyed parents to ascertain factors they believed affect their engagement during FCR. We asked about their preferences regarding informational resources used by the medical team. Responses were analyzed using descriptive statistics. Parents described their reasoning behind resource preferences, and we categorized these responses. Results: Parents reported that participation was affected by: clarity of the medical team's explanations (78.5%), understanding the information (75.5%), the child's health (74.5%), and being asked for their input (71%). Few (25%) parents believed the informational resource affects participation. Tablets were the preferred resource (24%) due to portability and ease of use, although 56% of parents had no preference. Conclusions: Parents of hospitalized children placed importance on delivery of clear information and an “invitation” to participate during FCR. The resource used by the team was less important, although tablets were most preferred. Next steps are to examine factors associated with objective measures of participation and further study FCR in families with limited English proficiency.

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Section: Discussioncontrasting

confidence: 60%

Parent Perspectives on Participation in Family-Centered Rounds and Informational Resource Use

et al. 2020

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“…All the mothers in this study described the importance of seeking information to better care for their child’s health. Education was seen as an integral part of a doctor’s role, but often limited in terms of detail, attention or time [ 43 , 44 ]. Patients (and parents) frequently seek their own information, particularly from the internet, to appear more committed to their child’s health; they wanted health providers to listen to their concerns and engage in meaningful discussion about their child’s health [ 45 ].…”

Section: Discussionmentioning

confidence: 99%

Health care experiences of mothers of children with bronchiectasis in Counties Manukau, Auckland, New Zealand

Jepsen

Charania

Mooney

2018

BMC Health Serv Res

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BackgroundBronchiectasis is a worsening public health problem in New Zealand. This study aimed to explore the health care experiences of mothers of children with bronchiectasis in the Counties Manukau District Health Board area of Auckland, New Zealand.MethodsSemi-structured interviews were undertaken with ten mothers of children with bronchiectasis. Data were analysed using thematic analysis.ResultsFive themes emerged: 1) Searching for answers, describing mothers’ search for a diagnosis; 2) (Dis)empowerment, describing mothers’ acquisition of knowledge, leading to empowerment; 3) Health care and relationships, describing the impact of relationships on the mother’s health care experiences; 4) A juggling act, describing the challenges of juggling health care with school, work and family; 5) Making it work, describing how mothers overcome barriers to access health care for their child.ConclusionsThe health provider-parent relationship was crucial for fostering positive health care experiences. Mothers’ acquisition of knowledge facilitated empowerment within those relationships. Additionally, mothers’ perceptions of the quality and benefit of health services motivated them to overcome barriers to accessing care. Study findings may help to improve health care experiences for parents of children with bronchiectasis if identified issues are addressed.Electronic supplementary materialThe online version of this article (10.1186/s12913-018-3532-9) contains supplementary material, which is available to authorized users.

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“…Although not broadly studied, presence of jargon in the clinical context has been evaluated in adult populations to a limited extent, including jargon relating to chief complaint,[12, 15] complex medical terminology,[16–19] use of statistics,[20] contextual jargon (lay terms with specific meaning in the clinical context),[19] and provision of explanations. [17, 18, 21, 22] All play a role in creating communication barriers between clinicians and families. For example, a randomized crossover trial found that adult patients with chronic illnesses had better understanding of their conditions when medical terminology was translated in clinical correspondence.…”

Section: Introductionmentioning

confidence: 99%

“…[22] Similarly, studies evaluating parents of children with diabetes and chronic illnesses indicated that parents may misunderstand and resent medical jargon, and endorsed clearer language and communication techniques to allow for parent understanding. [23] [21] Additionally, clinician use of jargon created barriers for the clinician/parent relationship, when parents considered use of language they could not comprehend as an avoidance of direct conversation. [21] Jargon use persists despite findings in research showing evidence of parents’ negative and emotional reactions to clinician jargon,[12, 24] parental lack of understanding of complex language,[20–23, 25, 26] and parental difficulty recalling and understanding complex medical dialogue.…”

Section: Introductionmentioning

confidence: 99%

“…[23] [21] Additionally, clinician use of jargon created barriers for the clinician/parent relationship, when parents considered use of language they could not comprehend as an avoidance of direct conversation. [21] Jargon use persists despite findings in research showing evidence of parents’ negative and emotional reactions to clinician jargon,[12, 24] parental lack of understanding of complex language,[20–23, 25, 26] and parental difficulty recalling and understanding complex medical dialogue. [27] [16–19, 24, 25] [13, 28–30] A greater understanding of the factors associated with surgeon jargon use might facilitate better parent-clinician communication[31] and optimize surgical decision-making.…”

Section: Introductionmentioning

confidence: 99%

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Surgeon use of medical jargon with parents in the outpatient setting

Links¹,

Callon²,

Wasserman³

et al. 2019

Patient Education and Counseling

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Objective: Unexplained medical terminology impedes clinician/parent communication. We describe jargon use in a pediatric surgical setting. Methods: We evaluated encounters between parents of children with sleep-disordered breathing (SDB; n=64) and otolaryngologists (n=8). Participants completed questionnaires evaluating demographics, clinical features, and parental role in decision-making via a 4-point categorical item. Two coders reviewed consultations for occurrence of clinician and parent utterance of medical jargon. Descriptive statistics established a profile of jargon use, and logistic regression evaluated associations between communication factors with jargon use. Results: Unexplained medical jargon was common (mean total utterances per visit=28.9,SD=19.5,Range=5–100), including SDB-specific jargon (M=8.3,SD=8.8), other medical terminology (M=13.9,SD=12) and contextual terms (M=3.8,SD=4). Parents used jargon a mean of 4.3 times (SD=4.6). Clinicians used more jargon in consults where they perceived parents as having greater involvement in decision-making (OR=3.4,p<0.05) and when parents used more jargon (OR=1.2,p<0.05). Conclusions: Jargon use in pediatric surgical consultations is common and could serve as a barrier to informed or shared parent decision-making. This study provides a foundation for further research into patterns of jargon use across surgical populations. Practice Implications: Results will be integrated into communication training to enhance clinician communication, foster self-awareness in language use, and create strategies to evaluate parental understanding.

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What Do Children with Chronic Diseases and Their Parents Think About Pediatricians? A Qualitative Interview Study

Cited by 25 publications

References 21 publications

Parent Perspectives on Participation in Family-Centered Rounds and Informational Resource Use

Parent Perspectives on Participation in Family-Centered Rounds and Informational Resource Use

Health care experiences of mothers of children with bronchiectasis in Counties Manukau, Auckland, New Zealand

Surgeon use of medical jargon with parents in the outpatient setting

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