Dataset Information

Parental understanding of our communication of morbidity associated with paediatric cardiac surgery: a qualitative study.

ABSTRACT:

Background

Following paediatric cardiac surgery, quality of life may be significantly impacted by morbidities associated with cardiac surgery. Parental understanding of the potential for postoperative morbidity is important for informed decision making. As part of a broader research study, we aimed to elicit parental understanding and experience of the communication of morbidities following their child's cardiac surgery, using traditional focus groups together with an online forum.

Methods

The Children's Heart Federation set up and moderated a closed, anonymous online discussion group via their Facebook page, focusing on complications, information needs and methods of providing families with information. Additionally, we ran three focus groups with parents/carers, moderated by an experienced independent professional. Focus groups were recorded and transcribed and a single transcript was generated from the online forum. All transcripts were thematically analysed.

Results

All data were collected in 2014. The forum ran over 3 months in 2014 and involved 72 participants. Focus groups involved 13 participants. Three broad themes were identified: (1) clinicians' use of language, (2) feeling unprepared for complications and (3) information needs of families.

Conclusions

Clinicians' language is often misunderstood, with wide variability in the way morbidities are described, and between differing teams looking after the same child. Information may not be easily absorbed or retained by families, who often felt unprepared for morbidities that arose after their child's heart surgery. Here, we propose key principles of good communication tailored to the individual receiving it.

SUBMITTER: Rajagopal V

PROVIDER: S-EPMC7047488 | biostudies-literature | 2020

REPOSITORIES: biostudies-literature

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Publications

Parental understanding of our communication of morbidity associated with paediatric cardiac surgery: a qualitative study.

Rajagopal Veena V Brown Katherine K Pagel Christina C Wray Jo J

BMJ paediatrics open 20200226 1

<h4>Background</h4>Following paediatric cardiac surgery, quality of life may be significantly impacted by morbidities associated with cardiac surgery. Parental understanding of the potential for postoperative morbidity is important for informed decision making. As part of a broader research study, we aimed to elicit parental understanding and experience of the communication of morbidities following their child's cardiac surgery, using traditional focus groups together with an online forum.<h4>Me ...[more]

PMID: 32154385

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Project description:ObjectivesGiven the current excellent early mortality rates for paediatric cardiac surgery, stakeholders believe that this important safety outcome should be supplemented by a wider range of measures. Our objectives were to prospectively measure the incidence of morbidities following paediatric cardiac surgery and to evaluate their clinical and health-economic impact over 6 months.DesignThe design was a prospective, multicentre, multidisciplinary mixed methods study.SettingThe setting was 5 of the 10 paediatric cardiac surgery centres in the UK with 21 months recruitment.ParticipantsIncluded were 3090 paediatric cardiac surgeries, of which 666 patients were recruited to an impact substudy.ResultsFamilies and clinicians prioritised:Acute neurological event, unplanned re-intervention, feeding problems, renal replacement therapy, major adverse events, extracorporeal life support, necrotising enterocolitis, postsurgical infection and prolonged pleural effusion or chylothorax.Among 3090 consecutive surgeries, there were 675 (21.8%) with at least one of these morbidities. Independent risk factors for morbidity included neonatal age, complex heart disease and prolonged cardiopulmonary bypass (p<0.001). Among patients with morbidity, 6-month survival was 88.2% (95% CI 85.4 to 90.6) compared with 99.3% (95% CI 98.9 to 99.6) with none of the morbidities (p<0.001). The impact substudy in 340 children with morbidity and 326 control children with no morbidity indicated that morbidity-related impairment in quality of life improved between 6 weeks and 6 months. When compared with children with no morbidities, those with morbidity experienced a median of 13 (95% CI 10.2 to 15.8, p<0.001) fewer days at home by 6 months, and an adjusted incremental cost of £21 292 (95% CI £17 694 to £32 423, p<0.001).ConclusionsEvaluation of postoperative morbidity is more complicated than measuring early mortality. However, tracking morbidity after paediatric cardiac surgery over 6 months offers stakeholders important data that are of value to parents and will be useful in driving future quality improvement.

Project description:Parenting and providing extensive care to a child with a life-limiting or life-threatening disease while being aware of the future loss of the child are among the most stressful parental experiences. Due to technical and medical improvements, children are living longer and are increasingly cared for at home. To align healthcare professionals' support with the needs of parents, a clear understanding of prominent experiences and main coping strategies of parents caring for a child in need of palliative care is needed. An interpretative qualitative study using thematic analysis was performed. Single or repeated interviews were undertaken with 42 parents of 24 children with malignant or non-malignant diseases receiving palliative care. Prominent reported parental experiences were daily anxiety of child loss, confrontation with loss and related grief, ambiguity towards uncertainty, preservation of a meaningful relationship with their child, tension regarding end-of-life decisions and engagement with professionals. Four closely related coping strategies were identified: suppressing emotions by keeping the loss of their child at bay, seeking support, taking control to arrange optimal childcare and adapting to and accepting the ongoing change(s).Conclusion: Parents need healthcare professionals who understand and carefully handle their worries, losses, parent-child relationship and coping strategies. What is Known: • In paediatric palliative care, parents have a daunting task in fulfilling all caregiving tasks while striving for control of their child's symptoms, a life worth living and a family balance. What is New: • Prominent experiences were: continuous management of anxiety of child loss, feelings of uncertainty, tension with end-of-life decision making and engagement with professionals. Parents experienced unique significance to their child, reinforcing a meaningful parent-child relationship. • Relevant coping strategies were: suppressing emotions, seeking support, taking control to arrange optimal care and adapting to the ongoing changes. • To provide tailored support, professionals need to understand parents' perceptions, relationship with their child and coping strategies.

Project description:ObjectiveThe aim of this study was to examine parents' and healthcare professionals' experiences and perceptions of parental readiness for resuscitation of their child in a paediatric hospital.DesignThis exploratory descriptive qualitative study used content analysis. Participants shared their experiences and perceptions about parental readiness for cardiopulmonary resuscitation through semi-structured and in-depth interviews. MAXQDA 2020 software was also used for data analysis.SettingThe setting was two large teaching paediatric hospitals in Iran (Este Azerbaijan and Mashhad).ParticipantsParticipants were 10 parents and 13 paediatric healthcare professionals (8 nurses and 5 physicians). Selection criteria were: (a) parents who experienced their child's resuscitation crisis at least 3 months prior and (b) nurses and physicians who were working in emergency rooms or intensive care wards with at least 2 years of experience on the resuscitation team.ResultsParticipants shared their experiences about parental readiness for resuscitation of their child in four categories: awareness (acceptance of resuscitation and its consequences; providing information about the child's current condition and prognosis), chaos in providing information (defect of responsibility in informing; provide selective protection of information; hardness in obtaining information), providing situational information (honest information on the border of hope and hopeless; providing information with apathy; providing information as individual; dualism in blaming; assurance to parents; presence of parents to better understand the child's situation) and psychological and spiritual requirements (reliance on supernatural power; need for access to a psychologist; sharing emotions; collecting mementos).ConclusionThe results of this study provide insight on the needs of parents and strategies to use to prepare them for their child's resuscitation crisis, which can be used to enhance family centred care practices in paediatric acute care settings.

Dataset Information

Parental understanding of our communication of morbidity associated with paediatric cardiac surgery: a qualitative study.

Background

Methods

Results

Conclusions

Publications

Parental understanding of our communication of morbidity associated with paediatric cardiac surgery: a qualitative study.

Similar Datasets

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