scholarly journals Signs of deterioration in infants discharged home following congenital heart surgery in the first year of life: a qualitative study

2016 ◽  
Vol 101 (10) ◽  
pp. 902-908 ◽  
Author(s):  
Jenifer Tregay ◽  
Katherine L Brown ◽  
Sonya Crowe ◽  
Catherine Bull ◽  
Rachel L Knowles ◽  
...  
Keyword(s):  
Qualitative Study ◽  
Congenital Heart ◽  
Heart Surgery ◽  
Home Monitoring ◽  
Congenital Heart Surgery ◽  
Warning Signs ◽  
First Year ◽  
At Risk Children ◽  
Seeking Help ◽  
First Year Of Life

AimsTo describe the ways in which parents recognise and make decisions about their child's symptoms following discharge home after congenital heart interventions in the first year of life and their experiences of seeking help.MethodsThis was a qualitative study involving semistructured interviews with parents. Twenty-one parents were recruited to the study. Parents all had a child who had congenital heart surgery in their first year of life between September 2009 and October 2013 at one of three UK cardiac centres; the children had either died or were readmitted as an emergency following initial discharge.ResultsSome parents were unable to identify any early warning signs. Others described symptoms of deterioration including changes in feeding and appearance, respiratory distress and subtle behavioural changes that may not be routinely highlighted to parents at discharge. Several barriers to accessing prompt medical assistance were identified including parents feeling that their concerns were not taken seriously, long wait times and lack of protocols at A&E.ConclusionsOur study highlights behavioural symptoms as being a potentially underemphasised sign of deterioration and identifies a number of barriers to parents accessing support when they are concerned. It is important that parents are encouraged to seek advice at the earliest opportunity and that those health professionals at the front line have access to the information they need in order to respond in an appropriate and timely way. A role for home monitoring was also noted as potentially useful in identifying at risk children who appear clinically well.

scholarly journals Parental experience of the neuromotor development of children with congenital heart disease: an exploratory qualitative study

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Elena Mitteregger ◽  
Martina Wehrli ◽  
Manuela Theiler ◽  
Jana Logoteta ◽  
Irina Nast ◽  
...  
Keyword(s):  
Congenital Heart Disease ◽  
Heart Disease ◽  
Qualitative Study ◽  
Motor Development ◽  
Congenital Heart ◽  
Healthcare Professionals ◽  
Qualitative Content Analysis ◽  
First Year ◽  
First Year Of Life ◽  
Neuromotor Development

Abstract Background Children with severe congenital heart disease (CHD) are a group of children at risk for neurodevelopmental impairments. Motor development is the first domain to show a delay during the first year of life and may significantly contribute to parental concerns, stress, and difficulties in early child-parent attachment. Thus, the aim of the study was to better understand the wishes and concerns of parents of children with CHD and explore their experience of their children’s neuromotor development in the first year of life. Methods In this qualitative study, fourteen families were recruited. Their children were aged 1–3 years and had undergone open heart surgery within the first 6 months of life. Semi-structured interviews were audio-recorded and transcribed. The data was explored within an expert group, and a qualitative content analysis was conducted using VERBI MAXQDA software 2020. The study was conducted in accordance with the COREQ checklist. Results Parents of children with CHD reported several burdens and needs. Parental burdens concerned the child’s motor development, their own physical and psychological strain, and difficulties in communication with healthcare professionals. The needs, parents reported included supporting their child’s motor development, a medical coordinator, and better communication between healthcare professionals and parents. During the first phase of their children’s illness, parents underwent a dynamic transitional phase and expressed the need to rely on themselves, to trust their children’s abilities, and to regain self-determination in order to strengthen their self-confidence. Conclusions It is essential to involve parents of children with CHD at an early stage of decision-making. Parents are experts in their children and appreciate medical information provided by healthcare professionals. Interprofessional teamwork, partnering with parents, and continuous support are crucial to providing the best possible care for children and their families. Family-centred early motor intervention for CHD children might counteract the effect of parental overprotection and improve children’s motor development and thus strengthen child-parent interaction. In future work, we aim to evaluate a family-centred early motor intervention for children with CHD developed on the basis of this qualitative study. Trial registration Not applicable.

Beyond 30 Days: Analysis of Unplanned Readmissions During the First Year Following Congenital Heart Surgery

2020 ◽  
Vol 11 (2) ◽  
pp. 177-182 ◽  
Author(s):  
Entela B. Lushaj ◽  
Joshua Hermsen ◽  
Glen Leverson ◽  
Susan G. MacLellan-Tobert ◽  
Kari Nelson ◽  
...  
Keyword(s):  
Risk Factors ◽  
High Risk ◽  
Congenital Heart ◽  
Heart Surgery ◽  
Hospital Readmissions ◽  
Congenital Heart Surgery ◽  
First Year ◽  
Term Survival ◽  
Viral Illness ◽  
First 90 Days

Objective: We investigated the incidence and etiologies for unplanned hospital readmissions during the first year following congenital heart surgery (CHS) at our institution and the potential association of readmissions with longer term survival. Methods: We retrospectively reviewed 263 patients undergoing CHS at our institution from August 2011 to June 2015. Scheduled readmissions were excluded. Results: Seventy patients accrued a total of 120 readmissions (1.7 readmission/patient) within one year after surgery. The first readmission for 57% of the patients was within 30 days postdischarge. Twenty-two patients were first readmitted between 31 and 90 days postdischarge. Eight patients were first readmitted between 90 days and 1 year postdischarge. Median time-to-first readmission was 21 days. Median hospital length of stay at readmission was two days. Causes of 30-day readmissions included viral illness (25%), wound infections (15%), and cardiac causes (15%). Readmissions between 30 and 90 days included viral illness (27%), gastrointestinal (27%), and cardiac causes (9%). Age, STAT category, length of surgery, intubation, intensive care unit, and hospital stay were risk factors associated with readmissions based on logistic regression. Distance to hospital had a significant effect on readmissions ( P < .001). Patients with higher family income were less likely to be readmitted ( P < .001). There was no difference in survival between readmitted and non-readmitted patients ( P = .68). Conclusions: The first 90 days is a high-risk period for unplanned hospital readmissions after CHS. Complicated postoperative course, higher surgical complexity, and lower socioeconomic status are risk factors for unplanned readmissions the first 90 days after surgery. Efforts to improve the incidence or readmission after CHS should extend to the first 3 months after surgery and target these high-risk patient populations.

scholarly journals Going home after infant cardiac surgery: a UK qualitative study

2016 ◽  
Vol 101 (4) ◽  
pp. 320-325 ◽  
Author(s):  
Jenifer Tregay ◽  
Jo Wray ◽  
Sonya Crowe ◽  
Rachel Knowles ◽  
Piers Daubeney ◽  
...  
Keyword(s):  
Qualitative Study ◽  
Home Monitoring ◽  
First Year ◽  
Framework Analysis ◽  
Patient Journey ◽  
Cardiac Intervention ◽  
Tertiary Centre ◽  
The Uk ◽  
Effective Transfer ◽  
First Year Of Life

ObjectiveTo qualitatively assess the discharge processes and postdischarge care in the community for infants discharged after congenital heart interventions in the first year of life.DesignQualitative study using semistructured interviews and Framework Analysis.SettingUK specialist cardiac centres and the services their patients are discharged to.SubjectsTwenty-five cardiologists and nurses from tertiary centres, 11 primary and secondary health professionals and 20 parents of children who had either died after discharge or had needed emergency readmission.ResultsParticipants indicated that going home with an infant after cardiac intervention represents a major challenge for parents and professionals. Although there were reported examples of good care, difficulties are exacerbated by inconsistent pathways and potential loss of information between the multiple teams involved. Written documentation from tertiary centres frequently lacks crucial contact information and contains too many specialist terms. Non-tertiary professionals and parents may not hold the information required to respond appropriately when an infant deteriorates, this contributing to the stressful experience of managing these infants at home. Where they exist, the content of formal ‘home monitoring pathways’ varies nationally, and families can find this onerous.ConclusionsService improvements are needed for infants going home after cardiac intervention in the UK, focusing especially on enhancing mechanisms for effective transfer of information outside the tertiary centre and processes to assist with monitoring and triage of vulnerable infants in the community by primary and secondary care professionals. At present there is no routine audit for this stage of the patient journey.

scholarly journals LONG-TERM TRANSPLANT-FREE SURVIVAL AFTER CONGENITAL HEART SURGERY

2021 ◽  
Vol 77 (18) ◽  
pp. 481
Author(s):  
Lazaros Kochilas ◽  
Amanda Thomas ◽  
Chao Zhang ◽  
J’Neka Claxton ◽  
Courtney McCracken ◽  
...  
Keyword(s):  
Congenital Heart ◽  
Heart Surgery ◽  
Congenital Heart Surgery ◽  
Free Survival
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