Journal articles: 'Parent-held Child Health Record'

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Talbot, Marjorie A. "Parent held child health records." Primary Health Care 6, no. 10 (November 1996): 14–15. http://dx.doi.org/10.7748/phc.6.10.14.s15.

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Chutiyami, Muhammad, Shirley Wyver, and Janaki Amin. "Are Parent-Held Child Health Records a Valuable Health Intervention? A Systematic Review and Meta-Analysis." International Journal of Environmental Research and Public Health 16, no. 2 (January 14, 2019): 220. http://dx.doi.org/10.3390/ijerph16020220.

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Parent-held child health record (PHCHR), a public health intervention for promoting access to preventive health services, have been in use in many developed and developing countries. This review aimed to evaluate the use of the records toward promoting child health/development. We searched PubMed, PsycINFO, CINAHL, Cochrane Library and Google Scholar to identify relevant articles, of which 32 studies met the inclusion criteria. Due to considerable heterogeneity, findings were narratively synthesised. Outcomes with sufficient data were meta-analysed using a random-effects model. Odds Ratio (OR) was used to compute the pooled effect sizes at 95% confidence interval (CI). The pooled effect of the PHCHR on the utilisation of child/maternal healthcare was not statistically significant (OR = 1.31, 95% CI 0.92–1.88). However, parents who use the record in low- and middle-income countries (LMIC) were approximately twice as likely to adhere to child vaccinations (OR = 1.93, 95% CI 1.01–3.70), utilise antenatal care (OR = 1.60, 95% CI 1.23–2.08), and better breastfeeding practice (OR = 2.82, 95%CI 1.02–7.82). Many parents (average-72%) perceived the PHCHR as useful/important and majority (average-84%) took it to child clinics. Health visitors and nurses/midwives were more likely to use the record than hospital doctors. It is concluded that parents generally valued the PHCHR, but its effect on child health-related outcomes have only been demonstrated in LMIC.

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Davies, Alyson. "Professional attitudes towards parent-held child health records." British Journal of Community Nursing 4, no. 8 (September 1999): 381–89. http://dx.doi.org/10.12968/bjcn.1999.4.8.7458.

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Price, Sarah, Naomi Fulop, and Andrew Mills. "Sharing information: An evaluation of a parent-held child health record scheme." Critical Public Health 2, no. 3 (July 1991): 32–37. http://dx.doi.org/10.1080/09581599108406820.

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Davies, Alyson. "Parent-held child health records: an evaluation of parental attitudes." British Journal of Community Nursing 4, no. 5 (May 1999): 242–49. http://dx.doi.org/10.12968/bjcn.1999.4.5.7488.

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VOLKMER, R. E., M. A. GOULDSTONE, and C. P. NINNES. "Parental perception of the use and usefulness of a parent-held child health record." Journal of Paediatrics and Child Health 29, no. 2 (March 10, 2008): 150–53. http://dx.doi.org/10.1111/j.1440-1754.1993.tb00470.x.

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POLNAY, LEON, and HEATHER ROBERTS. "Evaluation of an easy to read parent-held information and record booklet of child health." Children & Society 3, no. 3 (December 18, 2007): 255–60. http://dx.doi.org/10.1111/j.1099-0860.1989.tb00350.x.

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Miller, S. A. "A trial of parent held child health records in the armed forces." BMJ 300, no. 6731 (April 21, 1990): 1046. http://dx.doi.org/10.1136/bmj.300.6731.1046.

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Stacy, Richard D., Manoj Sharma, and William Alvin Torrence. "Evaluation of the use of a Parent-Held Child Health Record by Pregnant Women and Mothers of Young Children." Californian Journal of Health Promotion 6, no. 1 (September 1, 2008): 138–42. http://dx.doi.org/10.32398/cjhp.v6i1.1298.

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The purpose of this evaluation was to document (a) the level of patients’ satisfaction with use of a personal parent-held child health record (PHCHR), (b) their frequency of using it for specific reasons, (c) behavior changes participants made due to use of this record, and (d) perceived barriers to using the PHCHR. Eighty-two mothers completed the 22-item validated evaluation instrument. Patients reported high levels of satisfaction with all applicable use of the PHCHR. Respondents believed the PHCHR was a useful tool that served as a cue to increase their action in health seeking behaviors. Healthcare providers may consider use of PHCPR for pregnant women and mothers of young children.

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Chutiyami, Muhammad, Shirley Wyver, and Janaki Amin. "Is Parent Engagement with a Child Health Home-Based Record Associated with Parents Perceived Attitude towards Health Professionals and Satisfaction with the Record? A Cross-Sectional Survey of Parents in New South Wales, Australia." International Journal of Environmental Research and Public Health 17, no. 15 (July 30, 2020): 5520. http://dx.doi.org/10.3390/ijerph17155520.

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We examined parent views of health professionals and satisfaction toward use of a child health home-based record and the influence on parent engagement with the record. A cross-sectional survey of 202 parents was conducted across New South Wales (NSW), Australia. Bivariate and multivariate logistic regressions were conducted to identify predictors of parent engagement with the record book using odds ratio (OR) at 95% confidence interval (CI) and 0.05 significance level. Parents reported utilizing the record book regularly for routine health checks (63.4%), reading the record (37.2%), and writing information (40.1%). The majority of parents (91.6%) were satisfied with the record. Parents perceived nurses/midwives as most likely to use/refer to the record (59.4%) compared to pediatricians (34.1%), general practitioners (GP) (33.7%), or other professionals (7.9%). Parents were less likely to read the record book if they perceived the GP to have a lower commitment (Adjusted OR = 0.636, 95% CI 0.429–0.942). Parents who perceived nurses/midwives’ willingness to use/refer to the record were more likely to take the record book for routine checks (Adjusted OR = 0.728, 95% CI 0.536–0.989). Both parent perceived professionals’ attitude and satisfaction significantly influenced information input in the home-based record. The results indicate that improvements in parent engagement with a child health home-based record is strongly associated with health professionals’ commitment to use/refer to the record during consultations/checks.

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Bjerkeli Grøvdal, Lillian, Anders Grimsmo, and Tom Ivar Lund Nilsen. "Parent-held child health records do not improve care: A randomized controlled trial in Norway." Scandinavian Journal of Primary Health Care 24, no. 3 (January 2006): 186–90. http://dx.doi.org/10.1080/02813430600819769.

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Koh, Hwan Cui, Sandy Kai Ting Ang, Janell Kwok, Hui Nee Tang, Chui Mae Wong, Lourdes Mary Daniel, and Winnie Goh. "The Utility of Developmental Checklists in Parent-held Health Records in Singapore." Journal of Developmental & Behavioral Pediatrics 37, no. 8 (October 2016): 647–56. http://dx.doi.org/10.1097/dbp.0000000000000305.

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Laugharne, Richard, and Claire Henderson. "Medical records: Patient-held records in mental health." Psychiatric Bulletin 28, no. 2 (February 2004): 51–52. http://dx.doi.org/10.1192/pb.28.2.51.

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‘But don't they get lost?’ This is usually the first comment made when the authors mention the use of patient-held records (PHRs) to colleagues. Nevertheless, PHRs have been used in mental health care as well as several other settings, including services for diabetes, cancer, maternity and child health. In some of these services, including mental health, PHRs have been an addition to clinician held standard notes, whereas in others the patient holds the only record for their care. The main purposes of introducing PHRs have been to empower patients with a sense of ownership of their care and to improve communication, between both patients and clinicians, as well as between different clinicians involved in that person's care (Laugharne & Stafford, 1996).

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Hamilton, Lauren, and Shirley Wyver. "Parental Use and Views of the Child Personal Health Record." Australian Educational and Developmental Psychologist 29, no. 1 (July 2012): 66–77. http://dx.doi.org/10.1017/edp.2012.2.

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In New South Wales, Australia, the Child Personal Health Record (CPHR, aka ‘The Blue Book’, which includes notes on health and development) is proclaimed as an important document with widespread use throughout the state. Despite the significance of the record, there are few published evaluations of the efficacy of the CPHR. Parental use and views of the CPHR were examined using a two-phase, mixed-method design. One hundred and twenty mothers completed an online questionnaire, which included questions on demographics, use and views of the CPHR and child care experience. Six of these mothers participated in a follow-up interview. Perceived value of the CPHR was at its highest when the child was younger and if the child was first-born. The CPHR is used by medical professionals, yet broadening its use may increase efficiency of information transfer and promote parent understanding of developmental records, especially on growth indicators such as head circumference, which are not well understood. Implications for CPHRs as an empowering tool for families are considered.

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Carlson, Jennifer L., Rachel Goldstein, Tyler Buhr, and Nancy Buhr. "Teenager, Parent, and Clinician Perspectives on the Electronic Health Record." Pediatrics 145, no. 3 (February 5, 2020): e20190193. http://dx.doi.org/10.1542/peds.2019-0193.

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McMaster, P., H. J. McMaster, and D. P. Southall. "Personal Child Health Record and Advice Booklet Programme in Tuzla, Bosnia Herzegovina." Journal of the Royal Society of Medicine 89, no. 4 (April 1996): 202–4. http://dx.doi.org/10.1177/014107689608900408.

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Personal child health records, held by the parents, have potential advantages in times of civil disorder. Via health and community workers, 939 booklets (incorporating health records and health advice) were distributed to displaced and other families near Tuzla. Subsequently mothers were invited to bring their children for examination. Five hundred and seventy-one children with their booklets returned to the clinics. The survey revealed high rates of dental caries (305 cases), anaemia (36), and scabies (20). The war had not affected the duration of breast feeding, and the children's nutrition was generally satisfactory. Immunization status was generally good, though rates were unacceptably low in children from certain areas, reflecting not only deficient provision in their place of origin but also failings in the programme for displaced persons. An informal survey indicated that parents and older children appreciated the health-information content of the booklet. In a disaster of this sort, the personal child health record and advice booklet serves the combined purpose of yielding essential epidemiological data, providing a permanent health record, and meeting a need for health education material.

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Rigby, Michael J., Catherine E. Chronaki, Shalmali S. Deshpande, Peter Altorjai, Maria Brenner, and Mitch E. Blair. "European Union initiatives in child immunization— the need for child centricity, e-health and holistic delivery." European Journal of Public Health 30, no. 3 (October 23, 2019): 468–74. http://dx.doi.org/10.1093/eurpub/ckz199.

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Abstract Background Low childhood immunization rates in Europe are causing concern and have triggered several EU initiatives. However, these are counter-factual as they make immunization a stand-alone issue and cut across best practice in integrated child health services. They also focus unduly on ‘anti-vax’ pressures, generalize ‘vaccine hesitancy’ and overlook practical difficulties and uncertainties encountered by parents in real world situations about presenting children for immunization. Meanwhile European expertize in child health electronic record systems and relevant standards are ignored despite their being a potentially sound foundation ripe for enhancement. Methods Situation and literature reviews, and cohesion of two European research projects, led to shared investigation. As a result, two cross-sectoral expert workshops were held to consider digital health standards for harmonizing integrated preventive child health including immunization, and the work of other stakeholders such as the World Health Organisation and the European Centre for Disease Control. Results Progress in child health information models and digital health standards was assessed, areas needing further standards development identified and desirable steps towards innovation in service delivery and record keeping agreed. Conclusion The European Commission, member states and child health stakeholders should take an integrated approach to child health with immunization as a component. Service delivery should be sensitive to parental concerns and challenges, and the way child- and family-centric data are recorded and used should be enhanced. Services should be enabled by the International Patient Summary and related electronic health record standards and linkages, and evaluated to assess most effective systems and practice.

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Elliott, Anne. "When a child needs protection: What does it matter why?" Children Australia 23, no. 4 (1998): 5–8. http://dx.doi.org/10.1017/s1035077200008816.

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Despite the claims of statutory child protection authorities to be ‘child-centred’, the language used to record responses to child abuse and neglect allegations still focuses heavily upon parental actions. In most Australian states, child protection records perpetuate an emphasis on how harm was caused and by whom. This paper illustrates that parental blame – theoretically a concept of the past – is alive and well within child protection recording systems, and raises the implications of this for the development of policy frameworks and service delivery. It is argued that recent moves by some states towards differential responses actually perpetuate a focus on the parent to the detriment of a focus on the child’s needs. A better way of conceptualising the outcomes of child protection assessments – focusing on a child’s protective needs – is suggested.

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Barrett, Elizabeth. "Tied to the worldly work of writing: Parent as ethnographer." Journal of Intellectual Disabilities 23, no. 2 (November 26, 2017): 190–202. http://dx.doi.org/10.1177/1744629517741008.

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Parent narratives have contributed to ethnographic accounts of the lives of children with autism, but there are fewer examples of parents producing their own autoethnographies. This article explores the affordances of an online blog for enabling a parent of a child with autism to produce a written record of practice which may be considered ‘autoethnographic’. Richardson’s framework for ethnography as Creative Analytic Process (CAP) is applied to extracts from a blog post in order to consider its contribution, reflexivity, aesthetic merit and impact. The article addresses the methodological and ethical implications of reconceptualizing parents as researchers and the potential contribution of new writing platforms to the development of auto/ethnography.

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Stevens, Michael M. "“Shuttle sheet”: A patient-held medical record for pediatric oncology families." Medical and Pediatric Oncology 20, no. 4 (1992): 330–35. http://dx.doi.org/10.1002/mpo.2950200412.

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Bush, Terry, Susan J. Curry, Jack Hollis, Louis Grothaus, Evette Ludman, Tim McAfee, Michael Polen, and Malia Oliver. "Preteen Attitudes about Smoking and Parental Factors Associated with Favorable Attitudes." American Journal of Health Promotion 19, no. 6 (July 2005): 410–17. http://dx.doi.org/10.4278/0890-1171-19.6.410.

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Purpose. To describe youth smoking-related attitudes and evaluate the effects of parental factors on child adoption of positive attitudes about smoking. Design. This study used baseline and 20-month data from a family-based smoking-prevention study (82.9% completed both surveys). Setting. Telephone recruitment from two health maintenance organizations. Subjects. Children aged 10 to 12 years and one parent of each child (n = 418 families) were randomly assigned to a frequent assessment cohort (12.5% of participants). Intervention. Families received a mailed smoking-prevention packet (parent handbook, videotape about youth smoking, comic book, pen, and stickers), outreach telephone counselor calls to the parent, a newsletter, and medical record prompts for providers to deliver smoking-prevention messages to parents and children. Measures. Demographics, tobacco status, attitudes about smoking (Teenage Attitudes and Practices Survey), family discussions about tobacco, family cohesiveness (family support and togetherness), parent involvement, parent monitoring, and parenting confidence. Results. One-third of the children endorsed beliefs that they could smoke without becoming addicted, and 8% to 10% endorsed beliefs on the benefits of smoking. Children's positive attitudes about smoking were associated with lower family cohesiveness (p = .01). Parental use of tobacco was the only significant predictor of children's positive attitudes about tobacco at 20 months (p = .03). Conclusions. Children as young as 10 years underestimate addictive properties of smoking, which may place them at risk for future smoking. Parental use of tobacco and family cohesiveness are important factors in the formulation of preteen attitudes about smoking.

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Narayan, O., S. Davies, K. Bakewell, W. Lenney, and F. Gilchrist. "229 Review of personal hand held record for cystic fibrosis children." Journal of Cystic Fibrosis 13 (June 2014): S105. http://dx.doi.org/10.1016/s1569-1993(14)60364-7.

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Zimmerman, Kathrin, Bobby May, Katherine Barnes, Anastasia Arynchyna, Elizabeth N. Alford, Gustavo Chagoya, Caroline Arata Wessinger, et al. "Hydrocephalus-related quality of life as assessed by children and their caregivers." Journal of Neurosurgery: Pediatrics 26, no. 4 (October 2020): 353–63. http://dx.doi.org/10.3171/2020.4.peds19660.

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OBJECTIVEHydrocephalus is a chronic medical condition that has a significant impact on children and their caregivers. The objective of this study was to measure the quality of life (QOL) of children with hydrocephalus, as assessed by both caregivers and patients.METHODSPediatric patients with hydrocephalus and their caregivers were enrolled during routine neurosurgery clinic visits. The Hydrocephalus Outcomes Questionnaire (HOQ), a report of hydrocephalus-related QOL, was administered to both children with hydrocephalus (self-report) and their caregivers (proxy report about the child). Patients with hydrocephalus also completed measures of anxiety, depression, fatigue, traumatic stress, and headache. Caregivers completed a proxy report of child traumatic stress and a measure of caregiver burden. Demographic information was collected from administration of the Psychosocial Assessment Tool (version 2.0) and from the medical record. Child and caregiver HOQ scores were analyzed and correlated with clinical, demographic, and psychological variables.RESULTSThe mean overall HOQ score (parent assessment of child QOL) was 0.68. HOQ Physical Health, Social-Emotional Health, and Cognitive Health subscore averages were 0.69, 0.73, and 0.54, respectively. The mean overall child self-assessment (cHOQ) score was 0.77, with cHOQ Physical Health, Social-Emotional Health, and Cognitive Health subscore means of 0.84, 0.79, and 0.66, respectively. Thirty-nine dyads were analyzed, in which both a child with hydrocephalus and his or her caregiver completed the cHOQ and HOQ. There was a positive correlation between parent and child scores (p < 0.004 for all subscores). Child scores were consistently higher than parent scores. Variables that showed association with caregiver-assessed QOL in at least one domain included child age, etiology of hydrocephalus, and history of endoscopic third ventriculostomy. There was a significant negative relationship (rho −0.48 to −0.60) between child-reported cHOQ score and child-reported measures of posttraumatic stress, anxiety, depression, and fatigue. There was a similar significant relationship between caregiver report of child’s QOL (HOQ) and caregiver assessment of the child’s posttraumatic stress symptoms as well as their assessment of burden of care (rho = −0.59 and rho = −0.51, respectively). No relationship between parent-reported HOQ and child-reported psychosocial factors was significant. No clinical or demographic variables were associated with child self-assessed cHOQ.CONCLUSIONSPediatric patients with hydrocephalus consistently rate their own QOL higher than their caregivers do. Psychological factors such as anxiety and posttraumatic stress may be associated with lower QOL. These findings warrant further exploration.

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Hui, Yat Man Louise, Julie Stevenson, and Gisselle Gallego. "Transnational parent–child separation and reunion during early childhood in Chinese migrant families: An Australian snapshot." Australian Journal of Child and Family Health Nursing 16, no. 1 (July 2019): 16–23. http://dx.doi.org/10.33235/ajcfhn.16.1.16-23.

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Limited international research exists on reasons for transnational child care, or developmental consequences of separations and reunions on young Chinese children. This descriptive study portrays a sample of children from Chinese migrant families residing in western Sydney, New South Wales, Australia, whose parents temporarily relinquished their care to grandparents in China. Data were collected via retrospective health record audits. The majority of parents were first-time parents and the majority of children were first-borns sent back to China during infancy. The average duration of transnational parent–child separation was 20 months. Results showed that male child subjects who experienced multiple transnational separations and reunions were more vulnerable to problems associated with disrupted attachment. This study links parental decision for transnational child care and feelings of disempowerment in their parenting role with patriarchal family values and expectations, and their own adverse early experiences. This study may assist child and family health (CFH) professionals identify, understand and help Chinese parents who may be considering transnational child care to avoid or ameliorate adverse consequences, or alternatively, to support parents following reunion to establish or re-establish attachment relationships with their child, and parent well to optimise their child’s development. Study findings increase the evidence base on reasons for transnational child care, and the complex range of developmental and psychological problems children and parents in this study faced following reunion.

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Koyama, Tatsuya, and Nobuo Yoshiike. "Association between Parent and Child Dietary Sodium and Potassium Intakes: Aomori Prefectural Health and Nutrition Survey, 2016." Nutrients 11, no. 6 (June 23, 2019): 1414. http://dx.doi.org/10.3390/nu11061414.

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This study investigated the association between parent and child sodium and potassium intakes using data from the 2016 Aomori Prefectural Health and Nutrition Survey. We analyzed one day dietary record data of 103 mothers, 94 fathers, 51 children aged 1–3 years, 39 children aged 4–6 years, 91 children aged 7–14 years, and 56 children aged 15–19 years. We also examined the association of sodium and potassium intake between co-habiting grandparents and their grandchildren. After adjusting for covariates, the total daily sodium intake in mothers was positively associated with that in children for every age group. Potassium intakes by the mothers during breakfast and dinner were positively associated with those in children aged 1–3, 4–6, and 7–14 years. The associations in sodium and potassium intakes between fathers and children were weaker. In addition, these associations were similar to those between the sodium intakes of grandchildren and their grandparents. The association between mother and child sodium and potassium intakes at breakfast and dinner was related to the consumption of similar foods, which suggests the importance of home environment in influencing total dietary sodium and potassium intake in Japanese people.

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Nelson, Suchitra, Mary Beth Slusar, Shelley Curtan, David Selvaraj, and Andrew Hertz. "Formative and Pilot Study for an Effectiveness-Implementation Hybrid Cluster Randomized Trial to Incorporate Oral Health Activities into Pediatric Well-Child Visits." Dentistry Journal 8, no. 3 (September 1, 2020): 101. http://dx.doi.org/10.3390/dj8030101.

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Background: Dental caries in pediatric patients are noted to have broad impacts on systemic health and well-being. Thus, utilizing an effectiveness-implementation hybrid I design, the Pediatric Providers Against Cavities in Children’s Teeth (PACT) trial is investigating multi-level interventions at the practice (incorporation of oral health in electronic medical record [EMR]) and provider levels (theory-based didactic and skills training to communicate oral health facts to parent/caregiver, give a prescription to see a dentist and a list of area dentists) to increase dental utilization among 3 to 6 year old Medicaid-enrolled children attending well-child visits (WCV). The formative and pilot work for the larger main trial are presented. Methods: Formative work—Focus groups with 26 participants (Community leaders, providers, parent/caregivers); and key informant interviews with practice leadership (n = 4). Topics discussed were: core oral health (OH) information to communicate at WCVs and study logistics. Transcripts were coded and analyzed using Atlas.ti; Pilot study was refined using the formative findings and was conducted at two pediatric practices to test the implementation of: the provider didactic and skills training curriculum; EMR incorporation of four OH questions; logistics of incorporating OH activities at a WCV; and parent/caregiver recruitment. Results: Formative work showed that providers and parent/caregivers required knowledge of dental caries, and a list of area Medicaid-accepting dentists. Providers and practice leadership advised on the logistics of incorporating oral health into WCVs. All groups suggested asking parent/caregivers their preferred method of contact and emphasizing importance of OH to motivate participation. Utilizing these findings, the curriculum and protocol was revised. The pilot study in two practices successfully implemented the protocol as follows: all seven providers were trained in two 45 min didactic education and skills session; incorporation of OH questions into practices EMR; recruited 86 child-parent dyads (95% participation) at the WCV; providers delivered the OH intervention to parent/caregivers in <2 min and 90% completed EMR documentation of OH questions. These findings were instrumental in finalizing the main PACT trial in 18 practices. The RE-AIM framework is used in the main trial to collect effectiveness and implementation measures at baseline and follow-up visits. Conclusions: The formative and pilot findings were instrumental in refining the OH intervention and protocol which has resulted in successful implementation of the main trial. Trial Registration: Clinical trials.gov, Registered 9 November 2017, NCT03385629.

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Ming, David Y., George L. Jackson, Jessica Sperling, Megan Gray, Noelle Wyman Roth, Tracy Spears, Victoria Parente, and Hayden Bosworth. "Mobile Complex Care Plans to Enhance Parental Engagement for Children With Medical Complexity." Clinical Pediatrics 58, no. 1 (October 7, 2018): 34–41. http://dx.doi.org/10.1177/0009922818805241.

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Care plans can reduce care fragmentation for children with medical complexity (CMC); however, implementation is challenging. Mobile health innovations could improve implementation. This mixed methods study’s objectives were to (1) evaluate feasibility of mobile complex care plans (MCCPs) for CMC enrolled in a complex care program and (2) study MCCPs’ impact on parent engagement, parent experience, and care coordination. MCCPs were individualized, updated quarterly, integrated within the electronic health record, and visible on parents’ mobile devices via an online portal. In 1 year (September 1, 2016, to August 31, 2017), 94% of eligible patients (n = 47) received 162 MCCPs. Seventy-four percent of parents (n = 35) reviewed MCCPs online. Forty-six percent of these parents (n = 16) sent a follow-up message, and the care team responded within 8 hours (median time = 7.2 hours). In interviews, parents identified MCCPs as an important reference and communication tool. MCCPs for CMC in a complex care program were feasible, facilitated parental engagement, and delivered timely communication.

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Chutiyami, Muhammad, Shirley Wyver, and Janaki Amin. "Parent engagement with the New South Wales child health home‐based record: A cross‐sectional survey and a retrospective chart review." Child: Care, Health and Development 47, no. 5 (April 23, 2021): 635–44. http://dx.doi.org/10.1111/cch.12871.

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Gutiérrez, Susana J., Maria Fagnano, Elise Wiesenthal, Alana D. Koehler, and Jill S. Halterman. "Discrepancies between medical record data and parent reported use of preventive asthma medications." Journal of Asthma 51, no. 4 (January 30, 2014): 446–50. http://dx.doi.org/10.3109/02770903.2013.878351.

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Chutiyami, Muhammad, Shirley Wyver, and Janaki Amin. "Is parent engagement with a child health home-based record influenced by early child development and first-born status? hypotheses from a high-income countries’ perspective." Medical Hypotheses 137 (April 2020): 109605. http://dx.doi.org/10.1016/j.mehy.2020.109605.

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Santelli, Betsy, George H. S. Singer, Nancy DiVenere, Connie Ginsberg, and Laurie E. Powers. "Participatory Action Research: Reflections on Critical Incidents in a PAR Project." Journal of the Association for Persons with Severe Handicaps 23, no. 3 (September 1998): 211–22. http://dx.doi.org/10.2511/rpsd.23.3.211.

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This article describes a participatory action research (PAR) project designed to evaluate Parent to Parent programs in five states in the United States. The PAR team consisted of two groups: 1) parent leaders of programs that create one-to-one matches between help-seeking parents of children with disabilities and volunteer supporting parents and 2) university-based researchers. Based on a narrative record of the project, critical incidents are presented along with reflections of factors that contributed to the success of the project overall. The project successfully gathered evaluative data about Parent to Parent self-help programs. Results of both the PAR project and the study it created are presented. A process of developing a shared understanding of the programs and of the purposes for evaluating them, along with an on-going willingness of parents and researchers to compromise, led to creative solutions to difficulties that arose in meeting the needs of researchers and parents. As a result of the project, published data from a controlled experimental study are now available showing that Parent to Parent assisted parents in developing more positive views of their circumstances and a stronger sense of efficacy in coping with family and child challenges. Interviews indicated some of the reasons why Parent to Parent succeeds and fails. The study also revealed operational problems in the programs that were previously unrecognized. As a result of the project, the participating programs have made several changes to improve their services and they have begun to use the research data to support their legitimacy to funders and to expand their services to new populations.

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Wright, Adam, Aileen P. Wright, Skye Aaron, and Dean F. Sittig. "Smashing the strict hierarchy: three cases of clinical decision support malfunctions involving carvedilol." Journal of the American Medical Informatics Association 25, no. 11 (July 26, 2018): 1552–55. http://dx.doi.org/10.1093/jamia/ocy091.

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Abstract Clinical vocabularies allow for standard representation of clinical concepts, and can also contain knowledge structures, such as hierarchy, that facilitate the creation of maintainable and accurate clinical decision support (CDS). A key architectural feature of clinical hierarchies is how they handle parent-child relationships — specifically whether hierarchies are strict hierarchies (allowing a single parent per concept) or polyhierarchies (allowing multiple parents per concept). These structures handle subsumption relationships (ie, ancestor and descendant relationships) differently. In this paper, we describe three real-world malfunctions of clinical decision support related to incorrect assumptions about subsumption checking for β-blocker, specifically carvedilol, a non-selective β-blocker that also has α-blocker activity. We recommend that 1) CDS implementers should learn about the limitations of terminologies, hierarchies, and classification, 2) CDS implementers should thoroughly test CDS, with a focus on special or unusual cases, 3) CDS implementers should monitor feedback from users, and 4) electronic health record (EHR) and clinical content developers should offer and support polyhierarchical clinical terminologies, especially for medications.

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Crook, Joanne, Deepa Patel, Vanessa Marvin, and Barry Jubraj. "P036 Patients with learning disability, views on the use of a patient-held medication passport." Archives of Disease in Childhood 104, no. 7 (June 19, 2019): e2.41-e2. http://dx.doi.org/10.1136/archdischild-2019-nppc.46.

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AimTo establish the views of adolescent patients with learning disabilities and their carers, of the patient-held medication passport (My Medication Passport-MMP). MethodsA questionnaire was devised to find out if patients/carers thought a patient-held record of their medications (the MMP) was useful and to suggest improvements as appropriate. The MMP is a patient-held record of medicines use available as a passport sized booklet.1 MMPs were distributed to patients and carers for them to read and review at a patient focus group. Ethics approval was not required for this study.Results20 questionnaires were sent and a total of 17 completed questionnaires were returned (85% response rate). 70% (n=12) of the questionnaires were completed by carers, 24% (n=4) by family members and 1% (n=1) by a patient. 100% (n=17) of carers/patients who reviewed the MMP found it useful. When asked about features they liked about MMP; Seven carers noted the MMP was easy to use; four carers felt MMP was a good way to keep (personal) medicines information up to date; with three further clarifying that it could be used as a ‘concise way of keep track (of medicines)’ and two specified they liked that ‘all the information is in one book’. When Patients/carers were asked for ways MMP could be improved; two carers asked for more space to document past medication, including an area to ‘keep track of the behaviours and how it is exhibited because of the medication’; one carer noted that ‘some youngsters would benefit from more visual learning’ and one asked for a version to be made available via app on smart phone. Limitations included a small sample with limited exposure to MMP. The patient group sampled may not be representative.ConclusionPassports as tools aim to help patients better manage their medicines and have been successfully used in a patient with learning disability.2 It is encouraging to see that this small group of patients with learning disability find the MMP useful. Suggested adaptations to MMP for this patient group included it being more visual, and having areas for past medication. Other trials of MMP have suggested that it may require a section surrounding medicines administration. Patients have since been directed to the MMP app which can be downloaded onto a smartphone. There are many opportunities for future work including conducting an evaluation of the MMP in use over time and across different sectors, and to determine what patients actually record in the MMP.ReferencesBarber S, et al. Evaluation of My Medication Passport: a patient-completed aide-memoire designed by patients, for patients, to help towards medicines optimisation. BMJ Open4(8). https://bmjopen.bmj.com/content/4/8/e005608Jubraj B. Use of a medication passport in a disabled child seen across many care settings. BMJ Case Reports. 25 February 2015; http://casereports.bmj.com/content/2015/bcr-2014-208033Save

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Mares, Sarah, Louise Newman, Michael Dudley, and Fran Gale. "Seeking Refuge, Losing Hope: Parents and Children in Immigration Detention." Australasian Psychiatry 10, no. 2 (June 2002): 91–96. http://dx.doi.org/10.1046/j.1440-1665.2002.00414.x.

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Objective: To record observations made by the authors on a series of visits between December 2001 and March 2002 to two of Australia's immigration detention centers and to consider the mental health consequences of Australia's policy of mandatory immigration detention of asylum seekers for families and children. Conclusions: Parents and children in immigration detention are often vulnerable to mental health problems before they reach Australia. Experiences in prolonged detention add to their burden of trauma, which has an impact not only on the individual adults and children, but on the family process itself. Immigration detention profoundly undermines the parental role, renders the parent impotent and leaves the child without protection or comfort in already unpredictable surroundings where basic needs for safe play and education are unmet. This potentially exposes the child to physical and emotional neglect in a degrading and hostile environment and puts children at high risk of the developmental psychopathology that follows exposure to violence and ongoing parental despair. Psychiatrists have a role in advocating for appropriate treatment of these traumatized and vulnerable parents and children.

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Chutiyami, Muhammad, Shirley Wyver, and Janaki Amin. "Predictors of Parent Use of a Child Health Home-Based Record and Associations with Long-Term Child Health/Developmental Outcomes: Findings from the Longitudinal Study of Australian Children from 2004 to 2016." Journal of Pediatric Nursing 59 (July 2021): e70-e76. http://dx.doi.org/10.1016/j.pedn.2021.02.002.

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Pratt-Chapman, Mandi L., Jeanne Murphy, Dana Hines, Ruta Brazinskaite, Allison R. Warren, and Asa Radix. "“When the pain is so acute or if I think that I’m going to die”: Health care seeking behaviors and experiences of transgender and gender diverse people in an urban area." PLOS ONE 16, no. 2 (February 23, 2021): e0246883. http://dx.doi.org/10.1371/journal.pone.0246883.

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Introduction Approximately 1.4 million transgender and gender diverse (TGD) adults in the United States have unique health and health care needs, including anatomy-driven cancer screening. This study explored the general healthcare experiences of TGD people in the Washington, DC area, and cancer screening experiences in particular. Methods Twenty-one TGD people were recruited through word of mouth and Lesbian Gay Bisexual Transgender Queer (LGBTQ)-specific community events. Participant interviews were conducted and recorded via WebEx (n = 20; one interview failed to record). Interviews were transcribed using Rev.com. Two coders conducted line-by-line coding for emergent themes in NVivo 12, developed a codebook by consensus, and refined the codebook throughout the coding process. Member checking was conducted to ensure credibility of findings. Results Three major themes served as parent nodes: health-care seeking behaviors, quality care, and TGD-specific health care experiences. Within these parent nodes there were 14 child nodes and 4 grand-child nodes. Subthemes for health care seeking behaviors included coverage and costs of care, convenience, trust/mistrust of provider, and provider recommendations for screening. Subthemes for quality of care included professionalism, clinical competence in transgender care, care coordination, provider communication, and patient self-advocacy. Overall, transgender men were less satisfied with care than transgender women. Conclusions Results suggest a need for improved provider communication skills, including clear explanations of procedures and recommendations for appropriate screenings to TGD patients. Results also suggest a need for improved clinical knowledge and cultural competency. Respondents also wanted better care coordination and insurance navigation. Overall, these findings can inform health care improvements for TGD people.

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Chung, Rebecca K., Una Olivia Kim, and Mir Abdul Basir. "Differing perspectives on parent access to their child’s electronic medical record during neonatal intensive care hospitalization: a pilot study." Journal of Maternal-Fetal & Neonatal Medicine 31, no. 8 (April 10, 2017): 1078–84. http://dx.doi.org/10.1080/14767058.2017.1306853.

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Raven, D., F. Jörg, E. Visser, R. A. Schoevers, and A. J. Oldehinkel. "Predicting Secondary Mental Health Care Use in Adolescence using Self-, Parent- and Teacher-reported Problem Behavior in a Community-based Record-linkage Study." European Psychiatry 41, S1 (April 2017): S83—S84. http://dx.doi.org/10.1016/j.eurpsy.2017.01.264.

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IntroductionIn adolescence, help-seeking is affected by different actors. The influence of each actor on help-seeking is often studied in isolation, or, if multiple informants are included, using only few assessments of adolescents’ mental health.ObjectivesThe aim of this study is to determine the extent to which self-, parent- and teacher-reported problem behavior predict secondary care in adolescence and to what extent the informants’ relative importance changes over time.MethodsData from the Dutch community-based cohort study tracking adolescents’ individual lives survey (TRAILS) were linked to administrative records of secondary care from 2000 (age 9) to 2011 (age 21). Internalizing and externalizing problems were assessed using the youth self-report, child behavior checklist and teacher checklist of psychopathology at ages 11, 13 and 16, and the adult self-report at age 19.ResultsThe annual incidence of secondary care fluctuated between 1.3% and 2.4%. In Cox regression analyses that adjusted for sociodemographic covariates and problem behavior, internalizing problems but not externalizing problems predicted secondary care. Secondary care between the ages 11 to 13 years was predicted best by teachers, between the ages 13 to 16 by parents, and between the ages 16 to 21 by adolescents.ConclusionsThe relative importance of informants for predicting secondary care shifts over time, which suggests that each informant is the driving force behind secondary care at a different phase of adolescence. The treatment gap may be reduced by improving problem recognition of teachers in secondary education and by educating young adults about mental health problems.Disclosure of interestThe authors have not supplied their declaration of competing interest.

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Cunliffe, Helen, and Rachel Smith. "P14 Discord between patients’ general practitioner repeat prescriptions and the medication list held by a paediatric cf centre." Archives of Disease in Childhood 103, no. 2 (January 19, 2018): e2.16-e2. http://dx.doi.org/10.1136/archdischild-2017-314585.23.

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AimTo audit GP repeat prescription records in comparison with medication lists held in patients’ electronic notes (EMIS) in our centre, to identify any discrepancies and pharmacist interventions.MethodBetween October 2011 and June 2014, a pharmacist retrospectively reviewed the CF Centre medication lists, and compared them with the patient’s GP repeat prescription (accessed using Summary Care Record), identifying differences in doses, formulation, and directions. In addition, omissions from each list, drug-class duplications, drugs requiring cessation, and dosing errors were noted.The last date of dispensing was used as an indicator of adherence, and where necessary, GPs were contacted for further information.Pharmacist interventions requiring further action were recorded.ResultsDrugs (n=2009), were reviewed from 232 patient episodes. Total number of pharmacist interventions was 589 (29.3% drugs), with 20 prescribing errors identified as being clinically significant requiring immediate resolution. Dose and formulation discrepancies were noted in 141 (7.0%) and 48 (2.4%) drugs respectively. Omissions occurred on the GP prescription for 73 medications (3.6%), 30 of which were unlicensed. There were 69 (3.4%) omissions on the CF Unit medication list. Common drugs missed off the GP prescriptions were unlicensed medicines (ULM), accounting for 40% of GP omissions. Common drugs missed off the CF Centre drug list were dietary products and ‘acute’ courses (e.g. antifungals, eradication regimens) initiated by the CF Centre. The CF Centre was unaware of some GP prescribing of contraceptives and inhalers.25 patients were identified as having adherence issues.Only 35/232 (15%) prescriptions matched identically.ConclusionsThis audit identified the need for a more thorough medicine review and reconciliation in the clinic, which should at least include the GP repeat prescription. The audit identified areas of discrepancy between the CF Centre list and the GP prescription, that were previously unknown and had not been considered. It is essential that teams are aware of additional prescribing by GPs and the medication list at the CF Centre should be updated at each clinic visit. Communication regarding drug therapy needs to be improved between the CF Centre and GPs.A comprehensive medication review should to be completed before altering any drug/doses in response to poor clinical response, as it cannot be assumed that patients have access to, or are taking, medicines as perceived by the CF Team. A pharmacist in a CF clinic would be ideally placed to complete this.

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Kanungo, Shibani, Jayne Barr, Parker Crutchfield, Casey Fealko, and Neelkamal Soares. "Ethical Considerations on Pediatric Genetic Testing Results in Electronic Health Records." Applied Clinical Informatics 11, no. 05 (October 2020): 755–63. http://dx.doi.org/10.1055/s-0040-1718753.

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Abstract Background Advances in technology and access to expanded genetic testing have resulted in more children and adolescents receiving genetic testing for diagnostic and prognostic purposes. With increased adoption of the electronic health record (EHR), genetic testing is increasingly resulted in the EHR. However, this leads to challenges in both storage and disclosure of genetic results, particularly when parental results are combined with child genetic results. Privacy and Ethical Considerations Accidental disclosure and erroneous documentation of genetic results can occur due to the nature of their presentation in the EHR and documentation processes by clinicians. Genetic information is both sensitive and identifying, and requires a considered approach to both timing and extent of disclosure to families and access to clinicians. Methods This article uses an interdisciplinary approach to explore ethical issues surrounding privacy, confidentiality of genetic data, and access to genetic results by health care providers and family members, and provides suggestions in a stakeholder format for best practices on this topic for clinicians and informaticians. Suggestions are made for clinicians on documenting and accessing genetic information in the EHR, and on collaborating with genetics specialists and disclosure of genetic results to families. Additional considerations for families including ethics around results of adolescents and special scenarios for blended families and foster minors are also provided. Finally, administrators and informaticians are provided best practices on both institutional processes and EHR architecture, including security and access control, with emphasis on the minimum necessary paradigm and parent/patient engagement and control of the use and disclosure of data. Conclusion The authors hope that these best practices energize specialty societies to craft practice guidelines on genetic information management in the EHR with interdisciplinary input that addresses all stakeholder needs.

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Clare, Michael. "The UK ‘Looking After Children’ Project: Fit for ‘out-of-home care’ practice in Australia?" Children Australia 22, no. 1 (1997): 29–35. http://dx.doi.org/10.1017/s1035077200008063.

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This paper, based on material previously presented at the ACWA Biennial Conference in Sydney, describes the design, development and implementation of the ‘Looking After Children’ practice and management materials in the UK. The paper traces the research and practice background to the trialing of these out-of-home care assessment and planning materials in the UK, where they are expected to be adopted and implemented by all statutory agencies by the end of 1998. The international interest in the Assessment and Action Record is supported by an exploration of the arguments for child-focussed assessment and planning for ‘placement as a process – not an event’. Finally there is coverage of the three recently completed pilot projects in Western Australia. An argument is made for the adoption and adaptation of these materials as potential practice standards for the ‘State as parent’.

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D’Arinzo, Lauren, Krisha Patel, Tevin Carrington, Miatta Goba, and Jeffrey Gerber. "1120. Reliability of Parent-Reported Pediatric Antibiotic Use in a Longitudinal Birth Cohort." Open Forum Infectious Diseases 6, Supplement_2 (October 2019): S398. http://dx.doi.org/10.1093/ofid/ofz360.984.

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Abstract Background Depending on the population of interest, it is not always feasible to acquire electronic health record (EHR) data for antibiotic prescribing in longitudinal outpatient studies. Even when available, EHR algorithms are limited to only capturing in-network prescriptions. Thus, there is value in learning more about the reliability of parent-reported data to see whether this approach can be validated for epidemiologic research. Methods We examined antibiotic prescribing in the MAGIC (Microbiome, Antibiotics, and Growth Infant Cohort) Study, a longitudinal birth cohort of healthy newborns followed through 2 years of life. An informatics algorithm within an EHR platform was developed such that the study team received a text message alert every time a study participant who sought care in the Children’s Hospital of Philadelphia (CHOP) Care Network was prescribed an antibiotic. Families were also asked every 3 months whether their child had been prescribed an antibiotic in the past 3 months. We compared parent-reported antibiotic use with antibiotic use that generated an alert in the EHR. Results Among the 104 EHR-documented antibiotic exposures in 3-month spans, 52 (50%) were reported by parents at the relevant time point. Of the 52 nonreported antibiotic prescriptions that generated alerts, 4 (4%) were explicitly not reported by families and the remaining 48 exposures (46%) were not reported because the family did not answer the question at the relevant time point. There were 11 total exposures that were patient-reported without documented EHR alerts. Conclusion In this longitudinal birth cohort, only half of in-network, EHR-generated alerts for antibiotic prescriptions were reported by parents, and parent-reported antibiotic exposures occurred outside of the pediatric network that, by definition, could not generate EHR-based alerts. These results suggest that the most effective method for quantifying antibiotic use may be using EHR data supplemented with parent-reported data. Disclosures All authors: No reported disclosures.

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Zell, E., R. Peak, L. Rodewald, and T. Ezzati-Rice. "Reliability of Vaccination Cards and Parent-Derived Information for Determining Immunization Status: Lessons from the 1994 National Health Interview Survey (NHIS) Provider Record Check (PRC) Study. ♦ 592." Pediatric Research 41 (April 1997): 101. http://dx.doi.org/10.1203/00006450-199704001-00612.

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Gumede-Moyo, Sehlulekile, Jim Todd, Virginia Bond, Paul Mee, and Suzanne Filteau. "A qualitative inquiry into implementing an electronic health record system (SmartCare) for prevention of mother-to-child transmission data in Zambia: a retrospective study." BMJ Open 9, no. 9 (September 2019): e030428. http://dx.doi.org/10.1136/bmjopen-2019-030428.

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ObjectiveThis study aimed to investigate the challenges in implementing a Zambian electronic health records (EHR) system labelled ‘SmartCare’ from diverse stakeholder perspectives in order to improve prevention of mother-to-child transmission (PMTCT) data collection so that SmartCare can be used for clinic performance strengthening and programme monitoring.DesignThis is a qualitative retrospective study.Setting and participantsSmartCare is a Zambian Ministry of Health (MoH)-led project funded by the US Centre for Disease Control and Prevention. Data were collected using in-depth interviews, observations and focus group discussions (FGDs) between September and November 2016. Seventeen in-depth interviews were held with a range of key informants from the MoH and local and international organisations implementing SmartCare. Four data entry observations and three FGDs with 22 pregnant and lactating women seeking PMTCT services were conducted. Data were analysed using a thematic content approach.ResultsThe SmartCare system has evolved from various patient tracking systems into a multifunctional system. There is a burden of information required so that sometimes not all is collected and entered into the database, resulting in poor data quality. Funding challenges impede data collection due to manpower constraints and shortages of supplies. Challenges associated with data collection depend on whether a paper-based or computer-based system is used. There is no uniformity in the data quality verification and submission strategies employed by various IPs. There is little feedback from the EHR system at health facility level, which has led to disengagement as stakeholders do not see the importance of the system.ConclusionSmartCare has structural challenges which can be traced from its development. Funding gaps have resulted in staffing and data collection disparities within IPs. The lack of feedback from the system has also led to complacency at the operational level, which has resulted in poor data quality in later years.

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Macfarlane, A. "'Personal child health records' held by parents." Archives of Disease in Childhood 67, no. 5 (May 1, 1992): 571–72. http://dx.doi.org/10.1136/adc.67.5.571.

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S., Jagadish A., Asha Benakappa, Naveen Benakappa, and Gini Morgan. "A randomized control trial of hypothermia alert device in low birth weight newborns and the effect on kangaroo mother care and weight gain." International Journal of Contemporary Pediatrics 7, no. 1 (December 24, 2019): 52. http://dx.doi.org/10.18203/2349-3291.ijcp20195725.

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Background: Lack of thermal protection is one of the major challenges faced by developing nations for newborn survival. Early detection and subsequent prevention of hypothermia through Kangaroo Care could lead to significant health outcomes for the newborn. Hypothermia alert device is a bracelet that monitors for early hypothermia by sensing the extremities and sounding an alarm for parents to take action.Methods: In a randomized controlled trial, the effect of the hypothermia alert device on KMC compliance at home and weight gain of newborns on 4th week follow-up was evaluated. New borns discharged from the neonatal intensive care unit at Indira Gandhi Institute of Child Health (IGICH). Neonates who were LBW (less than 2500 grams) were included in the study once they were stable and ready for discharge. Neonates were given a hypothermia alert device to monitor their temperatures for hypothermia for 4 weeks. Weekly follow-ups were held with parents and to record measurements of growth. Additionally, parents were given a KMC diary to track sessions of KMC. Neonates were given either a placebo bracelet or a BEMPU Bracelet. Bracelets were identical and both monitored for hypothermia, however only the BEMPU Bracelet gave an alarm when the newborn was hypothermic.Results: Statistically 44 neonates completed the 4-week trial; 23 were in the control group and 21 were in the BEMPU group; of these, 19 participants in the control group completed KMC diaries and 19 BEMPU group completed KMC diaries. The results of the clinical trial reveal that parents of neonates in the BEMPU group demonstrated better compliance to KMC. In the BEMPU group, the average daily time spent doing KMC was significantly higher in first (3.02 v 1.96 h, p=0.016) and fourth (3.04 v 2.38 h, p=0.094) week of discharge. There was an increase of weight gain in the BEMPU group after the first (25.7 v 20.7 g, p=0.1.85) and fourth (28.3 v 22.9 g, p=0.057) week of discharge.Conclusions: The hypothermia alert device was found to be an effective intervention to promote parent adherence to Kangaroo Care and weight gain.

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Mabhala, Mzwandile, Winifred Adaobi Esealuka, Amanda Nkolika Nwufo, Chinwe Enyinna, Chelsea Nonkosi Mabhala, Treasure Udechukwu, John Reid, and Asmait Yohannes. "Homelessness Is Socially Created: Cluster Analysis of Social Determinants of Homelessness (SODH) in North West England in 2020." International Journal of Environmental Research and Public Health 18, no. 6 (March 16, 2021): 3066. http://dx.doi.org/10.3390/ijerph18063066.

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Poverty creates social conditions that increase the likelihood of homelessness. These include exposure to traumatic life experiences; social disadvantages such as poor educational experiences; being raised in a broken family, care homes or foster care; physical, emotional, and sexual abuse; and neglect at an early age. These conditions reduce people’s ability to negotiate through life challenges. This cross-sectional study documents the clustering and frequency of adverse social conditions among 152 homeless people from four cities in North West England between January and August 2020. Two-step cluster analysis showed that having parents with a criminal record, care history, and child neglect/abuse history was predictive of homelessness. The cluster of indicator variables among homeless people included sexual abuse (χ2 (N = 152) = 220.684, p < 0.001, Cramer’s V = 0.7), inappropriate sexual behaviour (χ2 (N = 152) = 207.737, p < 0.001, Cramer’s V = 0.7), emotional neglect (χ2 (N = 152) = 181.671, p < 0.001, Cramer’s V = 0.7), physical abuse by step-parent (χ2 (N = 152) = 195.882, p < 0.001, Cramer’s V = 0.8), and physical neglect (χ2 (N = 152) = 205.632, p < 0.001, Cramer’s V = 0.8). Poverty and homelessness are intertwined because of the high prevalence of poverty among the homeless. Poverty sets up a chain of interactions between social conditions that increase the likelihood of unfavourable outcomes: homelessness is at the end of the interaction chain. Interventions supporting families to rise out of poverty may also reduce entry into homelessness.

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Caserta, Mary T., Peter A. Wyman, Hongyue Wang, Jan Moynihan, and Thomas G. O'Connor. "Associations among depression, perceived self-efficacy, and immune function and health in preadolescent children." Development and Psychopathology 23, no. 4 (October 21, 2011): 1139–47. http://dx.doi.org/10.1017/s0954579411000526.

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AbstractExperimental animal studies and adult research consistently show that stress exposure and/or psychological symptoms are associated with poorer health and immune functioning. The application to children is not yet clear, however, and we lack developmental models for studies in this area. The objective of this paper was to test the hypothesis that self-reported self-efficacy and depression, two markers of psychological well-being in children, would predict immunity and rate of illnesses. The data are based on a prospective study of 141 healthy, normally developing children aged 7–13 years who were recruited from an ambulatory pediatric setting. Children completed self-efficacy and depression measures and had blood obtained for IL-6 plasma levels and natural killer cell functional assays on three occasions, 6 months apart. Parents maintained weekly child illness diaries over 1 year using a thermometer to record fever. Parent psychiatric symptoms and income were used as covariates. Results indicated that, across the three occasions of measurement collected over the 1-year period, higher perceived self-efficacy was significantly associated with lower plasma interleukin 6 concentrations. There was no overall main effect of depressive symptoms on immune measures; however, for older girls, higher depression was associated with elevated natural killer cell cytotoxicity and an increased rate of total illnesses and febrile illnesses. The findings provide some of the first evidence that psychological processes are associated with immunity and health in a normally developing sample of preadolescents. Furthermore, the pattern of results suggests a modified model of a link between psychological well-being and immunological processes in children. These results build on and expand research on the notion of allostatic load and develop a groundwork for developmental studies in this area.

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Inusa, Baba, SallyAnn Wakeford, and Fenella Kirkham. "Overnight Respiratory Support for Prevention of Morbidity in Sickle Cell Disease (POMS 2a) - Parent and Child Preferences." Blood 126, no. 23 (December 3, 2015): 4457. http://dx.doi.org/10.1182/blood.v126.23.4457.4457.

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Abstract PURPOSE: Obstructive sleep apnea and nocturnal hypoxemia are common in children with sickle cell disease (SCD) and some degree of improvement has been reported following adenotonsillectomy(Finch et al., 2013). NOT and continuous positive airways pressure (CPAP) have shown some benefits in children and adolescent patients(Hargrave, 2003). While NOT and CPAP are offered to children with or without co-morbidities, there are concerns about acceptability and safety(Makani et al., 2009). The data on patient preference is limited in childhood and more so for those with SCD. To achieve optimal adherence to therapy in SCD, Auto-Adjusting Positive Airways Pressure (APAP), where airway pressure is delivered only when obstruction occurs, may be a more acceptable option than CPAP(Marshall et al., 2009). Therefore prior to designing Phase II and III trials that are adequately powered, this study sought to: i) identify parent/caregiver and child treatment preference; ii) assess whether parent/caregiver or child should manage the electronic pain diary; iii) assess any treatment effect on Health Related Quality of Life (HRQOL) in children; and iv) explore the relationship of treatment adherence to: a) experience of pain, and b) overall clinical benefit from the intervention. HYPOTHESES: 1. Treatment adherence of children or adults with would be directly related a) HRQOL quantitative measures, and b) improvement in symptoms reported through semi-structured interviews of patients; 2. Children >8 years would be able to record their experience of pain in an appropriate electronic pain diary; 3. Treatment adherence would be predictive of effect on pain frequency. METHOD: We utilised mixed-methods to explore the primary endpoint of patient experience of treatment intervention, and the secondary endpoint of pain, in a sample of 11 children (aged >8 years) with homozygous SCD. The statistician was blinded to order of intervention. Two interventions NOT and APAP were conducted for one week each in randomized order, with a washout week between interventions. Qualitative data was obtained through in-depth interviews with children and their parents/caregivers conducted by a research psychologist using content method of analysis; quantitative measures were explored employing the Pediatric Quality of Life InventoryTM (PedsQL)(Panepinto et al., 2013) including the sickle module. All analyses were preliminary, exploratory and mainly descriptive. The secondary endpoint of pain was captured utilizing a pain rating scale and symptom assessment on smart technology via an iPad(Jacob et al., 2012). Other secondary outcomes included adverse events, daytime oxygen saturation, and lung function.. All variables were reported for three time points: baseline, post-intervention 1 and post-intervention 2. RESULTS: Analysis of interviews between children and parents/caregivers revealed similarities in expectations prior to treatment, and variations in post-study perception of treatment. Parents/caregivers and children emphasised impact on other family members, practical concerns and challenges as objective criteria for treatment preference, while children additionally emphasized night time positive/negative sensory experiences: e.g. airflow, dreams, breathing, sound, as influences for treatment preference. Belief that treatment is beneficial only for children with breathing difficulties emerged as an influence on both expectation and perception of positive benefits. In 7 children for whom APAP adherence data were available, pain was noted after 3 nights with a median adherence of 5.23 (range 4.0-6.1) hours and was not noted after 38 nights with a median adherence of 8.03 (range 3.21-10.19) hours (p=0.2). For 4 children with pain recorded on 2, 2, 2 and 4 days in the pre-treatment week, 3 recorded no pain on APAP and the child with 4 days pre-treatment recorded 2 days on APAP. CONCLUSIONS: These data reveal some variation in approaches toward treatment preferences between parents/caregivers and children, and supports an inclusive approach to facilitate appropriate treatment choice. Adherence data are not available for oxygen but there is some evidence for reduction in pain in relation to APAP adherence. This trial will contribute to understanding in participant feasibility and acceptability for therapeutic intervention. Research results will be used to inform design of the Phase II and III trials. Disclosures No relevant conflicts of interest to declare.

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Bramante, Carolyn. "79885 Self-Weighing in Adolescents with Obesity: Attitudes of Teens and their Parents." Journal of Clinical and Translational Science 5, s1 (March 2021): 33–34. http://dx.doi.org/10.1017/cts.2021.491.

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ABSTRACT IMPACT: Obesity is a quickly growing pandemic that negatively impacts health, and clinicians and clinics must employ all evidence-based tools (such as self-monitoring) to help patients control their weight. OBJECTIVES/GOALS: The objective of this study was to understand patient and parent perspectives on using daily self-weighing for adolescents with obesity who are seeking obesity treatment. The secondary objective was to understand perspectives on connecting smart-scales to the electronic medical record for messaging, feedback, and reminders between visits. METHODS/STUDY POPULATION: Thirty adolescents with obesity who were seeking obesity treatment at a tertiary pediatric weight management clinic were recruited into a single-arm feasibility study to create and assess a connection between blue-tooth scales and the electronic medical record. These adolescents and their parents were then approached about conducting exit interviews about their experience in the feasibility study -- their perspectives on connecting bluetooth scales connected to the electronic health record and using daily self-weighing at home to help them reach their healthy weight goals. The interviews were conducted by a trained interviewer who was not a PI or Co-I on the feasibility study, recorded, and transcribed. The interviews were organized on themes including technical challenges, mood, stress, clinic feedback. RESULTS/ANTICIPATED RESULTS: The main theme expressed by participants and parents was related to past experiences of their weight loss journey. Sub-themes included: technical challenges with apps, parental involvement in weighing, being told by clinicians to weigh, and intervention impact. Most parents desired more directions and help with setting up the app connection to the EHR. Most parents did not ask their child daily about their weight status as they did not want to cause stress. Some adolescents found it stressful when parents asked about daily weight status; others found it helpful or at least not stressful. Most participants had never been advised by their clinician to regularly self-weigh. Most found it helpful to monitor their weight regularly. Most asked for reminders from clinic to weight and for feedback on weight between visits. DISCUSSION/SIGNIFICANCE OF FINDINGS: Overall, adolescents with obesity reported self-weighing as being helpful and most wanted some, but not daily, involvement from parents. Most parents wanted additional technological support to create the scale set-up. Nearly all parents and adolescents wanted the weights to be connected to clinic, and for there to be feedback from clinic on weight.

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Journal articles on the topic 'Parent-held Child Health Record'

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