Who is supporting the parents during their child's cancer treatment? A qualitative study through the lens of compassion.

PURPOSE: Parents of children/adolescents with cancer are placed in a state of severe suffering due to serious concerns, fears, and radical daily life changes. Human support is an important source of support for successful coping. This study explored fundamental aspects of parents' daily, social, and personal life during their child's treatment to deepen our understanding of 'who' plays a significant role in supporting parents, and how, and to what extent this support is provided. METHODS: This qualitative study was undertaken in a compassion paradigm, designed and guided by Heidegger's and Gadamer's philosophy and compassionate methods. Data were generated through ethnographic observations (144 h), focus group interviews (n = 2), and individual/couple interviews (n = 16) at two Danish hospitals. Inductive content analysis was used to analyse data. RESULTS: Overall, support from peers, health professionals, and social networks constituted significant sources of support. Especially peers and health professionals had a continuous support role, which was fundamental for establishing interpersonal closeness and relieving suffering. Sharing responsibilities between parents and among social networks seemed to ease the emotional and practical burden. However, to ensure effectiveness, social networks must be available, outreach, and responsive to needs. Moreover, parents disclosed little self-awareness and resources and options for self-care due to a combination of lack of awareness, time, and space in the hospitals. CONCLUSION: Safeguarding interpersonal and interparental understanding and closeness in parental care is essential. One way is building resilience and a broader human-to-human-based safety net around the family, including social networks and professional psychosocial support, advantageously using compassion.

Father Groups in the Neonatal Intensive Care Unit: A Supportive Intervention.

BACKGROUND: Parents' participation in the neonatal intensive care unit (NICU) reduces length of stay and positively affects infants' psychological, cognitive, and behavioural outcomes. Healthcare professionals in the NICU focus on both parents, but tend to have the main focus on the mother and the infant. Therefore, fathers may experience a lack of support and feel that they are being disregarded in the NICU. PURPOSE: To study fathers' experiences with father groups during NICU admission with their preterm infant. The father group is a 90-minute intervention based on dialogue between fathers and a male healthcare professional. METHODS: A qualitative content analysis was conducted using 10 online semistructured interviews with fathers participating in a father group. The study was reported according to the Standards for Reporting Qualitative Research. RESULTS: The overall theme emerging from our analysis was "Emotional support, encouragement, and an enhanced capacity to deal with the situation and with life in the NICU." This theme emerged from the categories "Meeting with peers and sharing reflections" and "Fathers' territory" based on 5 subcategories. IMPLICATIONS FOR PRACTICE: Participation in father groups gives fathers recognition for being important as parents in the NICU, improves fathers' mental well-being, and enhances their coping capacity. Father groups support fathers in the NICU and can be integrated into NICU practices and policies to enhance a family-centered approach. IMPLICATIONS FOR RESEARCH: This study revealed a need for further research to determine whether participation in a father group has a measurable effect on clinical outcomes.

Feeding Practice, Nutrition, and Growth in Infants with Abdominal Wall Defects and Esophageal Atresia: A Retrospective Case-Control Study.

INTRODUCTION: Infants born with abdominal wall defects and esophageal atresia (EA) are at risk of impaired growth. Little is known about the optimal nutritional strategy and its impact on growth for these infants. This study aims to explore nutrition, focusing on breastfeeding, and the presumed impact on infant growth during the first year of life. MATERIALS AND METHODS: We performed a registry study. The participants comprised infants born with gastroschisis, omphalocele, or EA from 2009 to 2020. Breastfed healthy infants from the Odense Child Cohort served as the control group. Descriptive statistics were applied when presenting data on nutrition. Growth data were converted to weight z-scores at birth and at discharge, and estimated weight z-scores at 6 and 12 months were calculated. Univariate regression analysis was applied. RESULTS: The study included 168 infants in the study group and 403 infants in the control group. Exclusive breastfeeding rates at discharge were as follows: 55.7% (gastroschisis), 58.3% (omphalocele), 50.9% (EA), and 7.7% (long-gap EA). For the study group our data demonstrate no difference in growth at 1 year of age when comparing mother's milk to formula feeding. During the first year of life, infants in the study group showed slower growth compared with the control group. At 12 months of age, all infants had a mean weight z-score above -2. CONCLUSION: Breastfeeding in infants with abdominal wall defects and EA can be established without compromising growth. Mother's milk can be recommended for infants with abdominal wall defects and EA.

How to support fathers of preterm infants in early parenthood - An integrative review.

PROBLEM: Preterm birth is a stressful event. Paternal experiences of having a preterm infant indicate a need for tailored support. However, it is unclear which interventions work best. This review presents the evidence on existing healthcare interventions to support fathers of preterm infants in early parenthood, how effective they are and paternal experiences with the interventions. ELIGIBILITY CRITERIA: The integrative review process of Whittemore and Knafl was used to guide the study. A structured and comprehensive literature search was conducted in PubMed (MEDLINE), Embase, CINAHL, PsycInfo, Cochrane, Scopus, Web of Science, SweMed+, and Proquest Dissertation & Thesis Global. SAMPLE: A total of 18 qualitative and quantitative studies were included in the review. The Mixed Methods Appraisal Tool was used to assess quality. RESULTS: Three overall themes were identified in the analysis: 1) Skin-to-skin contact supported interaction between infant and father, 2) information impacted paternal experiences of stress, anxiety, and development of fatherhood, 3) fathers' relationships with the nurses oscillated between conflict and assistance. CONCLUSIONS: Our findings show that targeted interventions could support father-infant interaction and reduce stress among fathers of preterm infants. IMPLICATIONS: Fathers of preterm infants rely on nurses to support their engagement in early parenthood, while nurses facilitate the interventions that engage the fathers. It is also essential to develop a culture within the neonatal intensive care unit that encourages the presence of fathers and enhances educational nursing strategies for supporting fathers of preterm infants during early parenthood.

Central line-associated bloodstream infection in infants admitted to a level lllneonatal intensive care unit.

INTRODUCTION: Central line (CL)-associated bloodstream infection (CLABSI) is one of the most common and yet preventable hospital-acquired infections in infants admitted to neonatal intensive care units (NICUs) and is associated with significant morbidity. The objectives of this retrospective study were to 1) determine the incidence rates of CLABSI in infants admitted to a level lll NICU and to 2) identify independent CLABSI risk factors in high-risk infants. METHODS: Data were collected from patient medical records, and incidence rates were calculated per 1,000 CL days and per 1,000 patient (PT) days. Univariate analyses were performed to identify potential risk factors associated with CLABSI, and those with a p-value ≤ 0.05 were assessed in multivariate analyses. RESULTS: The cohort represented 382 infants in whom 512 CLs were inserted. The CLABSI incidence rates per 1,000 CL days and per 1,000 PT days were 13.41 and 3.18, respectively. The only independent risk factor for CLABSI was prolonged CL dwell-time for the groups of umbilical catheters (adjusted odds ratio (aOR) = 1.42 per day (95% confidence interval (CI): 1.15-1.75)) and central venous catheters (aOR = 1.04 per day (95% CI: 1.01-1.07)). CONCLUSION: Compared with other high-income countries, our overall incidence rate seems high. Since units of measurement and the definition used for CLABSI vary between studies, it is important to keep this in mind when comparing findings. Future research should focus on preventative measures in relation to CLs. FUNDING: none Trial registration. not relevant.

The Voice of Parents of Children With a Congenital Anomaly - A EUROlinkCAT Study.

EUROlinkCAT aims to investigate the health and educational outcomes of children with congenital anomalies for the first 10 years of their lives. We also aim to facilitate the development of a more reciprocal relationship between families with children with congenital anomalies, health and social care professionals, and researchers by conducting focus groups. The aim of the focus groups and parent interviews was to investigate parental experiences of having a child with a heart defect requiring surgery, cleft lip, spina bifida or Down Syndrome and to identify their research priorities. In total, seven interviews with 12 parents and eight focus groups with 58 parents and two caregivers were conducted in four European countries. We found that parents request more positive information with a focus on quality of life and what the children can achieve rather than solely on the negative aspects and limitations of the congenital anomaly. Some parents also highlighted discrepancies between the family's need for support and the lack of support received from the local authority. Finally, it was challenging for the parents to address specific research priorities. Future research should therefore focus on the potential of a child with a congenital anomaly.

Association between neonatal homecare for preterm infants and incidence of severe postpartum depression in mothers.

BACKGROUND: Understanding the association between neonatal homecare and postpartum depression could contribute to the design of evidence-based interventions to prevent postpartum depression. We aimed to determine whether the change from inpatient stays in neonatal intensive care units to offering neonatal homecare was associated with a reduced incidence rate of severe postpartum depression among mothers who gave birth prematurely. METHODS: We conducted a register-based population-wide study of all mothers who gave birth prematurely 1994-2017 to live-born infants and spent at least one night in the Neonatal Intensive Care Unit. We performed an interrupted time series analysis to investigate the incidence rate ratio of severe postpartum depression before and after the implementation of neonatal homecare. Neonatal homecare was implemented between 1994 and 2016. RESULTS: The total population consisted of 46,456 mothers and the median age was 30 years and interquartile range of 27-34 years. Overall 4.5 % of the mothers were diagnosed with severe postpartum depression. Prior to neonatal homecare no change in the incidence of severe postpartum depression was found; (incidence rate ratio=1.01 [95 % confidence interval: 0.97-1.05] every half year, p=0.69). The implementation was associated with a level change with an incidence rate ratio reduction of 23 % (incidence rate ratio=0.77 [95 % confidence interval: 0.64-0.93], p=0.007). LIMITATIONS: Limitations include potential underdiagnosis in early periods, lack of randomization, and different periods of implementation of neonatal homecare. CONCLUSIONS: We found a possible association between the implementation of neonatal homecare and a 23 % reduced incidence rate of severe postpartum depression among mothers of preterm infants.

Growth and breastfeeding of preterm infants receiving neonatal tele-homecare compared to hospital-based care.

OBJECTIVE: Neonatal tele-homecare implies that parents of clinically stable preterm infants can manage tube feeding and establishment of oral feeding in the home. Support is provided from the neonatal intensive care unit (NICU) through a telehealth service. The aim of this study was to compare growth and breastfeeding rates amongst infants being managed in the NICU (conventional care) and by neonatal tele-homecare. METHODS: A total of 96 preterm infants with tube feeding requirements participated in the observational study of neonatal tele-homecare. Retrospective data in 278 preterm infants receiving standard care in the same neonatal intensive care unit prior to implementation of neonatal tele-homecare were used for comparison. Rates of breastfeeding and growth were monitored during neonatal tele-homecare. Infant weights were converted to standard deviation weight-for-age z-scores based on a reference. RESULTS: There was no significant difference in rates of exclusive breastfeeding between the neonatal tele-homecare infants and the controls. Among the very preterm singleton infants more neonatal tele-homecare infants were exclusively breastfed at discharge compared to the controls (p = 0.04). There was no significant difference in median weight for age z-scores at discharge. CONCLUSION: This study demonstrates that neonatal tele-homecare may be an appropriate model of care for the management of preterm infants outside of the hospital environment; with the added benefit of higher rates of breastfeeding at time of discharge for very preterm infants.