75 Parental perspective about the health and development of their extremely preterm child

2021 ◽  
Vol 26 (Supplement_1) ◽  
pp. e55-e57
Author(s):  
Audrey-Anne Milette ◽  
Lindsay Richter ◽  
Claude-Julie Bourque ◽  
Annie Janvier ◽  
Kate Robson ◽  
...  
Keyword(s):  
Online Survey ◽  
Birth Outcome ◽  
Well Being ◽  
Subject Area ◽  
Common Source ◽  
Perinatal Medicine ◽  
Extremely Preterm ◽  
Health And Development ◽  
Parental Responses

Abstract Primary Subject area Neonatal-Perinatal Medicine Background Preterm birth outcome studies and clinical follow-up have traditionally focused on neurodevelopment. We previously showed in a selected sample of parents that they also valued other types of outcomes. Objectives This study aimed to validate these findings in a more diverse cohort by examining parental perspectives about the positive and negative aspects of their very preterm child’s health and development in relation to level of neurodevelopment impairment (NDI). Design/Methods Parents of children born < 29 weeks gestational age in 2016-2018 and seen at two Canadian neonatal follow-up clinics were invited to complete an online survey about their level of agreement with statements about their child’s health, development, and well-being. Parental responses in relation to their child’s level of NDI were examined using Kruskal-Wallis and chi-square for trends tests. Results 199 parental responses were obtained for 165 children (65% of eligible children). Of these children, 52%, 27% and 21% had, respectively, no, mild to moderate, and severe NDI. Development was the most common source of concerns (49%), followed by the child’s future (35%), and physical health (35%). Parents of children with severe NDI were more likely to express concerns than those with mild to moderate or no NDI. Parents rated their child’s health relatively high with a median score of 8/10 (range 3-10). Children with no NDI were given higher scores than those with NDI (p = 0.004). Regardless of level of NDI, almost all parents agreed with their child being happy (p = 1.000) and having a positive personality (p = 0.207). Figure 1 shows that parental concerns increased with level of NDI. Conclusion Parents of preterm children have a balanced perspective on their child’s outcome. Integrating their views when developing core sets of important outcomes for neonatal follow-up is critical.

scholarly journals The Influence of Friends on Teen Vaping: A Mixed-Methods Approach

2021 ◽  
Vol 18 (13) ◽  
pp. 6784
Author(s):  
Allison L. Groom ◽  
Thanh-Huyen T. Vu ◽  
Robyn L. Landry ◽  
Anshula Kesh ◽  
Joy L. Hart ◽  
...  
Keyword(s):  
Social Media ◽  
Peer Influence ◽  
Urban Areas ◽  
Online Survey ◽  
Strong Association ◽  
Self Esteem ◽  
Demographic Variables ◽  
Common Source ◽  
Sources Of Information

Vaping is popular among adolescents. Previous research has explored sources of information and influence on youth vaping, including marketing, ads, family, peers, social media, and the internet. This research endeavors to expand understanding of peer influence. Our hypothesis is that friends’ influence on teen vapers’ first electronic nicotine delivery systems (ENDS) use varies by demographic variables and awareness of ENDS advertising. In August–October 2017, youth (n = 3174) aged 13–18 completed an online survey to quantify ENDS behaviors and attitudes and were invited to participate in follow-up online research in November-December 2017 to probe qualitative context around perceptions and motivations (n = 76). This analysis focused on the ENDS users, defined as having ever tried any ENDS product, from the survey (n = 1549) and the follow-up research (n = 39). Among survey respondents, friends were the most common source of vapers’ first ENDS product (60%). Most survey respondents tried their first ENDS product while “hanging out with friends” (54%). Among follow-up research participants, the theme of socializing was also prominent. ENDS advertising and marketing through social media had a strong association with friend networks; in fact, the odds of friends as source of the first vaping experience were 2 times higher for those who had seen ENDS ads on social media compared with other types of media. The influence of friends is particularly evident among non-Hispanic Whites, Hispanics/Latinos, those living in urban areas, those living in high-income households, those with higher self-esteem, and those who experiment with vaping. These findings support the premise that peer influence is a primary social influencer and reinforcer for vaping. Being included in a popular activity appears to be a strong driving force.

scholarly journals Going through the lockdown: a longitudinal study on the psychological consequences of the coronavirus pandemic

2021 ◽  
Vol 23 (3) ◽  
Author(s):  
Salvatore Gullo ◽  
Ilaria Misici ◽  
Arianna Teti ◽  
Michele Liuzzi ◽  
Enrico Chiara
Keyword(s):  
Social Support ◽  
Longitudinal Study ◽  
Normative Data ◽  
Online Survey ◽  
Ad Hoc ◽  
Well Being ◽  
Psychological Consequences ◽  
Snowball Sampling ◽  
Data Points

Coronavirus 2019 pandemic lockdown in Italy lasted for 2 months, 1 week and 2 days. During this long period, one of the longest in Europe, the restrictions produced effects on people’s psychological well-being, with consequences that also continued after lockdown. The purpose of the study is to investigate these effects and how they changed in the general population over a period of time. We are also interested in exploring people’s post-lockdown anxiety and concerns. We conducted an online survey using snowball sampling techniques. The longitudinal study consisted of four administrations covering a period of 10 weeks between April (baseline) and June (last follow-up). Levels of anxiety and depression were assessed by GAD-7 and PHQ-9, coping strategies were assessed by Brief Resilient Coping Scale (BRCS) and social support was assessed by MSPSS. Post-lockdown anxiety was explored by developing a set of ad-hoc questions. PCA was used to determine the principal categories of post-lockdown anxiety/concern resulting from the ad-hoc questions. Longitudinal data, given their nested structure, were analyzed through mixed modeling. Of the 411 responders at baseline, 169 had at least 3 out of 4 data points; the analysis was therefore conducted on this sample. Levels of depression and anxiety were found to be significantly higher in the study sample in comparison with normative samples for each of the fourtime points; levels of coping showed that scores from the study sample were significantly lower than normative data at all-time points. Levels of perceived social support were significantly lower than normative data at the baseline and the first follow-up. The results of the study suggest that the lockdown experience had enduring consequences on the mental health of individuals. Prevention and support interventions to limit the psychological distress caused by COVID-19 should be taken into consideration in countries experiencing a second wave of the pandemic.

Socio-cultural Adjustment and Well-being in Third Culture Kids and their Families: Protocol for a Longitudinal Study (Preprint)

2021 ◽  
Author(s):  
Yoon Phaik Ooi ◽  
Marnie Reed ◽  
Emma Marchal-Jones ◽  
Andrea Meyer ◽  
Jens Gaab
Keyword(s):  
Online Survey ◽  
Well Being ◽  
Cultural Adjustment ◽  
Third Culture Kids ◽  
Third Culture ◽  
Validated Questionnaires ◽  
Family Interview ◽  
One Year ◽  
The One

BACKGROUND Increasing globalization has led to more families with children being relocated each year, high-lighting the importance of issues such as acculturation, adjustment, and psychological well-being in this population. These children, commonly known as Third Culture Kids (TCKs), often spend a significant part of their developmental years in cultures foreign to them. OBJECTIVE Our longitudinal study aims to examine the roles of cognitive, psychological, socio-cultural, and family factors on the longitudinal trajectories of TCKs and their families’ well-being and socio-cultural adjustment over time. METHODS This study adopts both quantitative and qualitative procedures. Data from both procedures will be collected at baseline and at 1-year follow-up. We aim to recruit 150-200 participants between 7 and 17 years old and one of their primary caregivers. After providing informed consent, participants will complete an online survey. Outcome measures include validated questionnaires on well-being and socio-cultural adjustment. Predictor measures include validated questionnaires on negative self-thoughts, emotion regulation, resilience, psychological attributes, self-esteem, stress, acculturative stress, cultural intelligence, couple satisfaction, and family functioning. A multiple regression model will be used to analyze the quantitative data. In addition, 15-20 families who participated in the online survey will be randomly selected to take part in a family interview focusing on questions related to well-being, relocation experiences, cultural issues, and challenges. A concurrent triangulation mixed-method design will be used to analyze and interpret data from both quantitative and qualitative methods. RESULTS To date, a total of 131 participants and 120 parents have completed the baseline online survey. In addition, 28 children and 24 parents have completed the one-year follow-up online survey. A total of 6 families have completed the baseline family interview while 2 families have completed the one-year follow-up interview. Transcription of the interview is on-going. CONCLUSIONS Findings from this study would enable us to understand the adjustment processes, and risk and protective factors associated with TCKs and their families’ well-being and socio-cultural ad-justment in Switzerland, which could have implications on the development of intervention pro-grams for individuals and families to address acculturation and adjustment issues. CLINICALTRIAL Not Applicable

scholarly journals Follow-Up Survey of the Impact of COVID-19 on People Living with HIV during the Second Semester of the Pandemic

2021 ◽  
Vol 18 (9) ◽  
pp. 4635
Author(s):  
Joseph Nelson Siewe Fodjo ◽  
Edlaine Faria de Moura Villela ◽  
Stijn Van Hees ◽  
Pieter Vanholder ◽  
Patrick Reyntiens ◽  
...  
Keyword(s):  
Online Survey ◽  
Psychosocial Support ◽  
Well Being ◽  
Hiv Care ◽  
People Living With Hiv ◽  
Daily Routines ◽  
Persons Living With Hiv ◽  
Living With Hiv ◽  
The Impact

COVID-19 affects persons living with HIV (PLWH) both directly (via morbidity/mortality) and indirectly (via disruption of HIV care). From July–November 2020, an online survey was conducted to investigate the psychosocial well-being of PLWH and changes in HIV care during the second semester of the COVID-19 outbreak. Data were collected on the socio-demographic characteristics of PLWH, their psychosocial well-being, impact of COVID-19 preventive measures on their daily routines and HIV follow-up. Of the 247 responses analyzed (mean age: 44.5 ± 13.2 years; 73.7% male), 67 (27.1%) and 69 (27.9%) respondents screened positive for anxiety (GAD-2 score ≥ 3) and depression (PHQ-2 score ≥ 3), respectively. HIV care had returned to pre-COVID-19 state for 48.6% PLWH, and 108 (43.7%) had no HIV follow-up during the past month. Over three quarters (76.1%) of respondents expressed willingness to receive the COVID-19 vaccine. Compared to previous findings in April 2020, substance use increased from 58.6% to 67.2% (p < 0.001). Our findings suggest that the well-being and medical follow-up of PLWH are still affected after almost a year into the COVID-19 outbreak. Remote HIV follow-up (telemedicine) with psychosocial support should be envisaged in the medium to long-term. Given that most PLWH accept COVID-19 vaccination, they may be prioritized for this intervention.

scholarly journals Longitudinal online survey in well-being research: first experiences from CRO-WELL project

2018 ◽  
Vol 8 (1) ◽  
Author(s):  
MSc. Lana Lučić ◽  
Dr. Sc. Tihana Brkljačić ◽  
Dr. Sc. Ljiljana Kaliterna Lipovčan
Keyword(s):  
Online Survey ◽  
Longitudinal Research ◽  
Well Being ◽  
Future Research ◽  
Online Application ◽  
Advantages And Disadvantages ◽  
Initial Questionnaire ◽  
Mail Address ◽  
E Mail

The aim of this report was to analyse positive and negative aspects of online administration of longitudinal well-being survey and to provide suggestions and guidelines for future research. The aim of CRO-WELL (Croatian Longitudinal Well-being Study) research was to follow well-being indicators longitudinally, on a large sample (N>5 000).For the purpose of the research we developed online platform with integrated questionnaire to assess various variables related to well-being. Participants could assess the application via various browsers, and it was also adjusted for smart phones.  “Friendly use” of the online application, understanding of questions and answering method, as well as ethical concerns, was tested using focus groups and individual trials. To enable matching the participants from two waves, every participant had to log in to the web page using his/her e-mail address. While e-mail address was protected by data-base, special computer-programme created token associated with each participant. A year after completing the initial questionnaire, participants were automatically invited to complete the follow-up. This paper brings review of designing and conducting a longitudinal research having in mind advantages and disadvantages of online survey.

scholarly journals Understanding Threats to Young Children’s Green Space Access in Unlicensed Daycare Centers in Japan

2020 ◽  
Vol 17 (6) ◽  
pp. 1948
Author(s):  
Christoph D. D. Rupprecht ◽  
Lihua Cui
Keyword(s):  
Public Health ◽  
Urban Planning ◽  
Online Survey ◽  
Green Space ◽  
Public Investment ◽  
Institutional Support ◽  
Well Being ◽  
Daycare Centers ◽  
Health And Development ◽  
Daycare Providers

Access to green space (GS) is vital for children’s health and development, including during daycare. In Japan, deregulation to alleviate daycare shortages has created a new category of so-called unlicensed daycare centers (UDCs) that often lack dedicated GS. UDCs rely on surrounding GS, including parks, temples and university grounds, but reports of conflicts highlight the precarity of children’s well-being in a rapidly aging country. Knowledge about GS access in Japanese UDCs remains scarce. Our mail-back survey (n = 173) of UDCs and online survey (n = 3645) of parents investigated threats to GS access during daycare across 14 Japanese cities. Results suggest that UDCs use a variety of GS and aim to provide daily access. Caregivers are vital in mediating children’s access, but locally available GS diversity, quality and quantity as well as institutional support were perceived as lacking. Parents did not rank GS high among their priorities when selecting daycare providers, and showed limited awareness of conflicts during GS visits. Implications of this study include the need for caregivers and parents to communicate and collaborate to improve GS access, and the importance of strong public investment into holistically improving GS diversity, quality and quantity from the perspective of public health and urban planning.

Identifying, Understanding, and Working with Grieving Parents in the NICU, Part II: Strategies

2005 ◽  
Vol 24 (4) ◽  
pp. 27-40 ◽  
Author(s):  
Kirsti Dyer
Keyword(s):  
Health Care ◽  
Health Care Professionals ◽  
Family Members ◽  
Well Being ◽  
Coping With Stress ◽  
Follow Up Care ◽  
Health And Development ◽  
Health And Well Being

Supporting parents in coping with stress and loss improves the health and development of their child. This article looks at the need for monitoring the health and well-being of parents of infants in the NICU, including practical matters for health care professionals providing follow-up care. It is important to increase public and professional awareness of the grief response. Practical suggestions for coping with the NICU experience, many of them from professionals who are also parents of NICU patients, are offered for grieving parents and family members.

scholarly journals Viability and thresholds for treatment of extremely preterm infants: survey of UK neonatal professionals

2021 ◽  
pp. fetalneonatal-2020-321273
Author(s):  
Lydia Mietta Di Stefano ◽  
Katherine Wood ◽  
Helen Mactier ◽  
Sarah Elizabeth Bates ◽  
Dominic Wilkinson
Keyword(s):  
Preterm Infants ◽  
Nurse Practitioners ◽  
Active Treatment ◽  
Online Survey ◽  
Neonatal Resuscitation ◽  
Lower Threshold ◽  
Grey Zone ◽  
Perinatal Medicine ◽  
Extremely Preterm ◽  
Extremely Preterm Infants

BackgroundDecisions about treatments for extremely preterm infants (EPIs) born in the ‘grey zone’ of viability can be ethically complex. This 2020 survey aimed to determine views of UK neonatal staff about thresholds for treatment of EPIs given a recently revised national Framework for Practice from the British Association of Perinatal Medicine.MethodsThe online survey requested participants indicate the lowest gestation at which they would be willing to offer active treatment and the highest gestation at which they would withhold active treatment of an EPI at parental request (their lower and upper thresholds). Relative risks were used to compare respondents’ views based on profession and neonatal unit designation. Further questions explored respondents’ conceptual understanding of viability.Results336 respondents included 167 consultants, 127 registrars/fellows and 42 advanced neonatal nurse practitioners (ANNPs). Respondents reported a median grey zone for neonatal resuscitation between 22+1 and 24+0 weeks’ gestation. Registrars/fellows were more likely to select a lower threshold at 22+0 weeks compared with consultants (Relative Risk (RR)=1.37 (95% CI 1.07 to 1.74)) and ANNPs (RR=2.68 (95% CI 1.42 to 5.06)). Those working in neonatal intensive care units compared with other units were also more likely to offer active treatment at 22+0 weeks (RR=1.86 (95% CI 1.18 to 2.94)). Most participants understood a fetus/newborn to be ‘viable’ if it was possible to survive, regardless of disability, with medical interventions accessible to the treating team.ConclusionCompared with previous studies, we found a shift in the reported lower threshold for resuscitation in the UK, with greater acceptance of active treatment for infants <23 weeks’ gestation.

10 High spontaneous ductal closure even at the extreme of prematurity

2021 ◽  
Vol 26 (Supplement_1) ◽  
pp. e7-e7
Author(s):  
Gabriela de Carvalho Nunes ◽  
Punnanee Wutthigate ◽  
Jessica Simoneau ◽  
Marc Beltempo ◽  
Guilherme Sant'Anna ◽  
...  
Keyword(s):  
Premature Infants ◽  
Gestational Age ◽  
Ductus Arteriosus ◽  
Subject Area ◽  
Outpatient Setting ◽  
Perinatal Medicine ◽  
Extremely Preterm ◽  
Ductal Closure ◽  
Catheter Closure ◽  
Preterm Newborns

Abstract Primary Subject area Neonatal-Perinatal Medicine Background Extremely preterm newborns are at risk of prolonged patency of the ductus arteriosus (PDA). Current literature has failed to indicate improvement in outcomes after exposure to strategies promoting ductal closure. As such, our center abandoned these practices in 2013. Objectives Describe the spontaneous PDA closure in premature infants, including those infants born at the extreme of gestational age (&lt; 26 weeks). Design/Methods Retrospective study of newborns &lt; 29 weeks, admitted within 24 hours after birth between 2015 and 2019 and without genetic or congenital anomalies. Newborns who were last known to be alive, with an available echocardiography, and who were not exposed to any intervention to accelerate PDA closure were included. Images were reviewed by experts blinded to the outcomes. Results 296 infants were analyzed. 37 (12%) did not survive their hospitalization, and 16 were exposed to interventions to accelerate ductal closure at some point during their lifetime (4 ligations, 4 catheter-closure, 5 ibuprofen and 3 acetaminophen). Out of the 243 remaining newborns, 214 had at least one echocardiography to ascertain ductal patency or closure (100% of those &lt;26 weeks). The average gestational age was 26.3±1.5 weeks, with 84 (39%) being &lt;26 weeks. PDA closed spontaneously in 194 (91%), with 60 having closure ascertainment after discharge (average age at closure ascertainment of 36.4 [IQR: 34.4 – 40.1] weeks). Of the 84 &lt;26 weeks, 76 (90%) had confirmation of ductal closure. The 20 infants with an open PDA at the last evaluation were followed in an outpatient setting and considered small/restrictive. In our cohort, 92/243 (38%) were exposed to post-natal steroids. In the &lt;26 weeks group, 74% were exposed to steroids, at a cumulative dose of 1.64 [0.89 – 2.44] mg/kg. BPD was found in 57% of the overall cohort and in 79% of &lt;26 weeks. Conclusion The majority of newborns &lt; 29 weeks, and even those at the extreme of gestational age (&lt; 26 weeks) spontaneously closed their PDA before term-corrected age. While BPD rate was similar to previous cohorts, post-natal steroids use was high.

scholarly journals Research Study Protocol: Using health information systems to address patients concerns in general practice: the COAC Intervention development and feasibility study

2021 ◽  
Author(s):  
Mairead Murphy ◽  
Chris Salisbury ◽  
Tom Palmer ◽  
Geoff Wong ◽  
Jude Hancock ◽  
...  
Keyword(s):  
General Practice ◽  
Feasibility Study ◽  
Complex Intervention ◽  
Online Survey ◽  
Health Knowledge ◽  
Well Being ◽  
Randomised Control Trial ◽  
Programme Theory ◽  
Patient Reported

Abstract BackgroundProblems are missed in up to 50% of primary care consultations. This is costly for the NHS, both in terms of reconsultation rates and in missed opportunities to increase patient empowerment. Research suggests that interventions at each end of the consultation can help to address patient concerns. At consultation initiation, sharing the results from electronic patient-reported outcome measures (ePROMs) with clinicians can help to elicit concerns. At consultation closure, providing the patient with written information to supplement spoken can improve recall and adherence.Aims and ObjectivesAim: To develop and test a complex intervention designed to more comprehensively address patients’ concerns in general practice, thereby reducing re-consultation rates, improving patients’ well-being and health knowledge, reducing health concerns and increasing patients’ confidence in their health provision and health plan. The aims will be achieved through two studies. Firstly a complex intervention will be designed, which uses an ePROM at consultation opening and a report printed or texted at consultation closure. Secondly, this intervention will be tested to establish the feasibility both of the intervention and of a randomised control trial (RCT) of the intervention.Methods1. Intervention Design Study: This will involve:1. Design of an online questionnaire system using practice SMS/email systems and online survey software to allow patient self-completion of a pre-consultation questionnaire and a report showing low-scoring questionnaire items, which is shared with GPs or nurses.2. Testing the pre-consultation system with 45 patients in 3 rounds, using a person-based approach, with iterative adjustments made based on patient, administrator, receptionist, nurse and GP feedback after each round.3. Design of an electronic template, integrated with the patient record, to provide a printable consultation-closure report to patients on issues raised in the consultation, advice given, treatment, follow-up and safety-netting.4. Testing the consultation-closure report iteratively with 45 patients in 3 rounds, using a person-based approach, with iterative adjustments made based on patient and GP/nurse feedback after each round.2. Feasibility Study: The intervention will be tested in a cluster-randomised framework as follows:1. Refinement of the intervention and update to programme theory.2. Randomisation of six practices: four randomised to intervention, and two to control.3. Recruitment of 30 patients per practice: 120 intervention and 60 control.4. Data Collection of quantitative data via GP/nurse-report, patient-report and health records. Interview of GPs, nurses, practice manager, administrators and receptionists and up to 30 patients.5. Realist evaluation of the data to identify and understand the mechanisms by which outcomes have occurred within the programme theory.6. Data analysis of recruitment rates, follow-up rates, data completeness, re-consultation rates within one/three months and other outcomes measures to assess feasibility of a future RCT.7. Evaluation of pre-agreed success criteria to decide whether to continue to RCT, stop, or modify the intervention.Timelines for deliveryStudy 1 will be completed from October 2019 – March 2021 and study 2 from April 2021 – April 2022.Anticipated impact and disseminationResults will be disseminated through targeted communications in social media, the University of Bristol website, policy briefings, academic papers, patient participation groups, community associations and seminars and conferences. The study output resources will be made available for immediate use. If progression criteria are met, we will aim to complete a randomised control trial within five years.

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