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1.
Pediatr Surg Int ; 40(1): 61, 2024 Feb 29.
Article in English | MEDLINE | ID: mdl-38421506

ABSTRACT

PURPOSE: This study aimed to explore parents' experience of sham feeding their baby born with esophageal atresia at home, waiting for reconstructive surgery. METHOD: Semi-structured interviews were conducted with parents of six children born with esophageal atresia waiting for delayed reconstruction. The interviews were analyzed using qualitative content analysis. RESULTS: Parents experienced that sham feed reinforced the healthy abilities in their baby. They had faith in their own ability as parents to care for their child as well as to see to their baby's strength to cope with difficulties. Parents expressed that the health care system can hinder as well as be a major support on their way to a more normal life at home while waiting for reconstructive surgery. CONCLUSION: The experience of sham feeding at home while waiting for reconstructive surgery is characterized by positive aspects both for children born with esophageal atresia and their parents.


Subject(s)
Esophageal Atresia , Surgery, Plastic , Infant , Child , Humans , Esophageal Atresia/surgery , Health Status , Parents , Qualitative Research
2.
J Pediatr Surg ; 58(9): 1646-1655, 2023 Sep.
Article in English | MEDLINE | ID: mdl-36635161

ABSTRACT

BACKGROUND: Children with long-gap esophageal atresia (LGEA) face a high risk of digestive and respiratory morbidity, but their mental health outcomes have not been investigated. We aimed to identify the prevalence of mental health problems in children with LGEA, associated factors and health-related quality of life (HRQOL). METHODS: Twenty-six children with LGEA aged 3-17 were recruited nationwide in Sweden. One of their parents and adolescents aged 11-17 completed information on the child's mental health (Strength and Difficulties Questionnaire), generic (PedsQL 4.0) and condition-specific HRQOL (EA-QOL). Parents gave information on current child symptomatology. Mental health level was determined using validated norms; abnormal≥90 percentile/borderline≥80 percentile/normal. Elevated levels were considered borderline/abnormal. Data were analyzed using descriptives, correlation and Mann-Whitney-U test. Significance level was p < 0.05. RESULTS: Twelve children with LGEA aged 3-17 (46%) had elevated scores of ≥1 mental health domain in parent-reports, whereas 2 adolescents (15%) in self-reports. In parent-reports, 31% of the children had elevated levels of peer relationship problems, with associated factors being child sex male (p = 0.037), airway infections (p = 0.002) and disturbed night sleep (p = 0.025). Similarly, 31% showed elevated levels of hyperactivity/inattention, and associated factors were male sex (p = 0.005), asthma (p = 0.028) and disturbed night sleep (p = 0.036). Elevated levels of emotional symptoms, seen in 20%, were related to swallowing difficulties (p = 0.038) and vomiting problems (p = 0.045). Mental health problems correlated negatively with many HRQOL domains (p < 0.05). CONCLUSIONS: Children with LGEA risk mental health difficulties according to parent-reports, especially peer relationship problems and hyperactivity/inattention, with main risk factors being male sex, airway problems and sleep disturbances. This should be considered in follow-up care and research, particularly since their mental health problems may impair HRQOL. LEVELS OF EVIDENCE: Prognosis study, LEVEL II.


Subject(s)
Esophageal Atresia , Quality of Life , Adolescent , Child , Humans , Male , Female , Esophageal Atresia/complications , Esophageal Atresia/epidemiology , Mental Health , Sweden/epidemiology , Prevalence , Surveys and Questionnaires , Parents/psychology
3.
Orphanet J Rare Dis ; 17(1): 239, 2022 06 20.
Article in English | MEDLINE | ID: mdl-35725462

ABSTRACT

BACKGROUND: In 10-15% of children with esophageal atresia (EA) delayed reconstruction of esophageal atresia (DREA) is necessary due to long-gap EA and/or prematurity/low birth weight. They represent a patient subgroup with high risk of complications. We aimed to evaluate postoperative morbidity and health-related quality of life (HRQOL) in a Swedish national cohort of children with DREA. METHODS: Postoperative morbidity, age-specific generic HRQOL (PedsQL™ 4.0) and condition-specific HRQOL (The EA-QOL questionnaires) in children with DREA were compared with children with EA who had primary anastomosis (PA). Factors associated with the DREA group's HRQOL scores were analyzed using Mann-Whitney U-test and Spearman's rho. Clinical data was extracted from the medical records. Significance level was p < 0.05. RESULTS: Thirty-four out of 45 families of children with DREA were included and 30 returned the questionnaires(n = 8 children aged 2-7 years; n = 22 children aged 8-18 years). Compared to children with PA(42 children aged 2-7 years; 64 children aged 8-18 years), there were no significant differences in most early postoperative complications. At follow-up, symptom prevalence in children aged 2-7 with DREA ranged from 37.5% (heartburn) to 75% (cough). Further digestive and respiratory symptoms were present in ≥ 50%. In children aged 8-18, it ranged from 14.3% (vomiting) to 40.9% (cough), with other digestive and airway symptoms present in 19.0-27.3%. Except for chest tightness (2-7 years), there were no significant differences in symptom prevalence between children with DREA and PA, nor between their generic or condition-specific HRQOL scores (p > 0.05). More children with DREA underwent esophageal dilatations (both age groups), gastrostomy feeding (2-7 years), and antireflux treatment (8-18 years), p < 0.05. Days to hospital discharge after EA repair and a number of associated anomalies showed a strong negative correlation with HRQOL scores (2-7 years). Presence of cough, airway infection, swallowing difficulties and heartburn were associated with lower HRQOL scores (8-18 years), p < 0.05. CONCLUSIONS: Although children with DREA need more treatments, they are not a risk group for postoperative morbidity and impaired HRQOL compared with children with PA. However, those with a long initial hospital stay, several associated anomalies and digestive or respiratory symptoms risk worse HRQOL. This is important information for clinical practice, families and patient stakeholders.


Subject(s)
Esophageal Atresia , Child , Cough/complications , Esophageal Atresia/complications , Esophageal Atresia/surgery , Heartburn/complications , Humans , Morbidity , Quality of Life , Sweden , Treatment Outcome
4.
Worldviews Evid Based Nurs ; 13(3): 207-15, 2016 Jun.
Article in English | MEDLINE | ID: mdl-26790051

ABSTRACT

BACKGROUND: Clinical practical guidelines (CPGs) may enhance evidence-based practice, but require implementation. Computer reminders have previously shown various effects in supporting implementation; in a concomitant study, we found no effect on complications in peripheral venous catheters (PVCs) or registered nurses' (RNs) adherence to a CPG in pediatric care. Yet, there is a need to determine how reminders operate in particular contexts. AIM: To depict if, in what context, and how computer reminders regarding evidence-based management of PVC in pediatric care are applied according to RNs' actions and experience. METHODS: Qualitative data from nonparticipant observations and interviews with 18 RNs in four intervention units at a pediatric hospital were analyzed with content analysis. FINDINGS: Attention given to the computer reminders varied; the RNs noticed them in units where there was an agreement about the management and recording of PVCs, but not elsewhere. Rather, computer reminders did not facilitate adherence to the PVC-CPG where the CPG was not acknowledged from the start. RNs who knew how to manage PVCs had peer support and received additional reminders, which suggested that the computer reminders added to the significance of PVCs in pediatric care. LINKING EVIDENCE TO ACTION: While the computer reminders alone did not support CPG implementation, they further increased the attention to PVCs in contexts where there was a readiness to change along with a supportive culture. We suggest further studies tailoring implementation strategies to include electronic means if there is a beneficial context.


Subject(s)
Catheterization, Peripheral/methods , Nurses/psychology , Reminder Systems/standards , Adult , Evidence-Based Practice/methods , Evidence-Based Practice/standards , Female , Guideline Adherence/standards , Humans , Infusions, Intravenous , Male , Middle Aged , Qualitative Research , Reminder Systems/statistics & numerical data , Software/standards , Surveys and Questionnaires
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