Hearing Parents’ Voices: Parental Refusal of Cochlear Implants and the Zone of Parental Discretion

It has been forty years since the first multi-channel cochlear implant was used in Australia. While heralded in the hearing world as one of the greatest inventions in modern medicine, not everyone reflects on this achievement with enthusiasm. For many people in the Deaf community, they see the cochlear implant as a tool that reinforces a social construct that pathologizes deafness and removes Deaf identity. In this paper, I set out the main arguments for and against cochlear implantation. While I conclude that, on balance, cochlear implants improve the well-being and broaden the open futures of deaf children, this does not justify mandating implants in circumstances where parents refuse them because this may compound unintended harms when society interferes in the parent-child relationship. For this reason, I argue that parental refusal of cochlear implantation falls within Gillam’s concept of the zone of parental discretion.

Belgian Consensus Recommendations to Prevent Vitamin K Deficiency Bleeding in the Term and Preterm Infant

Neonatal vitamin K prophylaxis is essential to prevent vitamin K deficiency bleeding (VKDB) with a clear benefit compared to placebo. Various routes (intramuscular (IM), oral, intravenous (IV)) and dosing regimens were explored. A literature review was conducted to compare vitamin K regimens on VKDB incidence. Simultaneously, information on practices was collected from Belgian pediatric and neonatal departments. Based on the review and these practices, a consensus was developed and voted on by all co-authors and heads of pediatric departments. Today, practices vary. In line with literature, the advised prophylactic regimen is 1 or 2 mg IM vitamin K once at birth. In the case of parental refusal, healthcare providers should inform parents of the slightly inferior alternative (2 mg oral vitamin K at birth, followed by 1 or 2 mg oral weekly for 3 months when breastfed). We recommend 1 mg IM in preterm <32 weeks, and the same alternative in the case of parental refusal. When IM is perceived impossible in preterm <32 weeks, 0.5 mg IV once is recommended, with a single additional IM 1 mg dose when IV lipids are discontinued. This recommendation is a step towards harmonizing vitamin K prophylaxis in all newborns.

The Assessment of Risk Factors for Development of Disability in Children with Congenital Hypothyroidism in Uzbekistan within a Neonatal Screening

The aim of this study was to detect the most significant risk factors leading to disability in children with congenital hypothyroidism (CH) in the autonomous Republic of Karakalpakstan (RK) during neonatal screening (NS). Methods and Results: We used data of patients with CH registered within NS in the RK in 1998-2019 by the Center for Screening of Mother and Child. To predict and calculate the most significant risk factors for disability in children with CH, we used the method of normalizing intensive indicators by E. Shigan, based on the Bayes theorem. The study recruited 111 patients with CH aged from 2 months to 20 years. Among the patients, there were 79(71.2%) girls and 32(28.8%) boys. Additionally, 34(30.6%) children with CH had been disabled since childhood. The lack of compensation after the start of treatment had the highest and most significant degree of disability risk (RR=6.39, 95% CI: 7.4-1.2). Among patients diagnosed outside of screening, disability developed 4.1 times more often than with the results of NS (RR=4.0, 95% CI: 1.1-10.6). In CH patients diagnosed outside of screening, “absence of reagents” was a significant factor increasing the risk of disability by 6.1 times (RR=6.1, 95% CI: 1.8-11.2). Such risk factors as “home delivery” and “parental refusal of the primary test” increased the risk of disability by 3.4 times (RR=3.4, 95% CI: 2.5-8.4) and 1.6 times (RR=2.4, 95% CI: 2.93-7.12), respectively. The possible errors or false-negative answers in the “normal” secondary test and the “normal” primary test increased the risk of disability by 3.3 times (RR=4.0, 95% CI: 3.2-10.7) and 2.4 times (RR=2.42, 95% CI: 2.93-7.12), respectively. Factors such as the “late response to retesting” (RR=0.82 95% CI: 0.65-0.54), “late awareness on the part of the medical staff” (RR=0.29, 95% CI: 0.27- 0.08), and "parental refusal of treatment" (RR=1.03, 95% CI: 0.81-0.84) showed less significance in patients' disability. The “starting treatment after 1 month” factor was 4.2 times more likely to result in disability than “starting treatment before 1 month” (RR=4.2, 95% CI: 4.5 -1.1). Cancellation of levothyroxine by parents for children up to 3 years of age and cancellation of treatment by parents after 3 years more likely resulted in disability by 1.4 times (RR=1.43, 95% CI: 1.4 -2.01) and 3.3 times (RR=3.33, 95% CI: 3.3-10.9), respectively. Conclusion: the most significant risk factors for the development of disability in children with CH in the RK were (in descending order): no compensation after starting treatment, no reagents for screening, starting treatment after 1 year, diagnostics outside of screening, cancellation of L-T4 by parents before and after age 3 years, false-negative secondary TSH test, false-negative primary test, parents refusing the primary test, and childbirth at home.

Parental refusal to child’s vaccination.

-

Medical neglect in Ontario: Implications for health care provision

Objectives This study explores child welfare investigations for medical neglect in Ontario, Canada, focusing on household, family and child characteristics of such investigations and factors associated with substantiated victimization. Methods This analysis used data from the Ontario Incidence Study of Reported Child Abuse and Neglect 2018. Bivariate analyses compared medical neglect with other neglect investigations to create a profile of medical neglect investigations in Ontario, and a binary logistic regression determined which case characteristics were associated with substantiation of medical neglect. Results Compared with other neglect investigations, medical neglect investigations were more likely to involve children less than 1 year old and caregivers under 21 years old, households that had run out of money in the past 6 months for basic necessities, primary caregivers with few social supports, mental health issues or drug/solvent abuse concerns, and children with at least one functioning concern. Medical neglect investigations in which the primary caregiver had few social supports were almost four times more likely to be substantiated (OR=3.698, P&lt;0.05). Conclusions While the public’s perception of medical neglect tends to focus on parental refusal of treatment due to philosophical/religious beliefs, this Ontario sample indicates that medical neglect is often driven by financial constraints and a lack of social support. Implications for health care providers within a universal health care system are discussed.

Perceived parental acceptance and rejection and its relationship to Alexithymia disorder among adolescents with the Autism Spectrum at integrated schools in Jeddah: القبول والرفض الوالدي المدرك وعلاقته باضطراب الأليكسيثيميا لدى المراهقين ذوي طيف الأوتيزم بمدارس الدمج بمدينة جدة

The study aims to reveal the relationship of parental acceptance/ rejection by the (father- mother) as perceived by the children and the disorder of Alexithymia among a sample of adolescents with an Autism spectrum, with some demographic variables (gender- economic and social level- the work of the mother). Depending on the descriptive analytical approach The sample of the study consisted of (40) male and female adolescents with Autism Spectrum Disorder. Their ages ranged between (15: less than 19 years). A measure of parental acceptance and rejection (the mother-father version) was applied to them (was translated into Arabic by Mamdouha Salama, 2011), Toranto Scale of Alexithymia (translated into Arabic by Aladdin Kafafi- Fouad Al-Dawash 2011), and The Economic and Social Level List prepared (Razan Kurdi, 2012), was applied on the sample of study. The results indicated that a statistically significant correlation between parental acceptance- rejections by the (father-mother), as perceived by the children and between their alexithymia. The results also indicated there are differences between parents in the awareness of children of the acceptance and parental refusal in the direction of the mothers. The results also indicated Parental acceptance and rejection (the image of the mother) differed according to some demographic variables (gender in the direction of males- economic and social level in the direction of the high level- mother's work in the direction of non-working mothers). The results also indicated that Parental acceptance and rejection (the image of the father) differed according to some demographic variables (gender in the direction of female- economic and social level in the direction of the high level). Alexithymia also differed according to some demographic variables (gender in the direction of males- economic and social level in the direction of high level- mother's work in the direction of non-working mothers).

“It’s Like 1998 Again”: Why Parents Still Refuse and Delay Vaccines

We conducted a qualitative study from 2018 to 2019 to update the reasons why US parents’ refuse or delay vaccines. Four focus groups and 4 semi-structured interviews involving 33 primary care pediatric providers were conducted in Washington and Colorado. A thematic analysis was conducted to identify themes related to reasons for parental refusal or delay. Five predominant themes were identified: (1) vaccine safety, (2) relative influence of information sources, decision-makers, and timing, (3) low perceived risk of contracting vaccine-preventable disease, (4) lack of trust, and (5) religious objection. Vaccine safety was the theme mentioned most frequently by providers (N = 45 times by 26 providers) and religious objection to vaccination was referred to the least (N = 6 times by 6 providers). Provider-reported reasons for parental refusal or delay of childhood vaccines in 2018 to 2019 remain similar to those reported in previous studies.