Browsing by Subject "Parents"

Background

Methods

Results

Conclusion

Abstract

There is a population of individuals classified as having Autism Spectrum Disorder (ASD). This group of people should be included in places of worship, the schools they attend and the communities where they reside. Consequently, they are sometimes excluded from some occurrences that others experience.

Utilizing personal stories (of successes and sometimes failures), ASD parent interviews and research, I will offer suggestions for inclusion and enlighten the areas where there tends to be exclusion. My focus is the church and how church leaders may become involved in the lives of ASD parishioners to enhance inclusion in not only the church, but the school and the community as well.

My research shows that ASD parents would like their children to experience church as they have. Although willing, most churches, may lack the ability to oblige for various reasons. Schools where inclusion is not encouraged, rests primarily on the shoulders of the principals. Like pastors in churches, principals in schools have influence and can spearhead inclusion efforts in their respective entities. Community entities are willing to accommodate ASD clientele and have done so when approached to comply.

I contend where any of these entities are not willing to foster inclusion, then the church can and most often should become involved to assist, with the necessary training. In other words, the church must do what the church has always done – stand up for those who are unable to do so for themselves.

Keywords: Autism, church, community, inclusion, parents, school

Abstract

There is a population of individuals classified as having Autism Spectrum Disorder (ASD). This group of people should be included in places of worship, the schools they attend and the communities where they reside. Consequently, they are sometimes excluded from some occurrences that others experience.

Utilizing personal stories (of successes and sometimes failures), ASD parent interviews and research, I will offer suggestions for inclusion and enlighten the areas where there tends to be exclusion. My focus is the church and how church leaders may become involved in the lives of ASD parishioners to enhance inclusion in not only the church, but the school and the community as well.

My research shows that ASD parents would like their children to experience church as they have. Although willing, most churches, may lack the ability to oblige for various reasons. Schools where inclusion is not encouraged, rests primarily on the shoulders of the principals. Like pastors in churches, principals in schools have influence and can spearhead inclusion efforts in their respective entities. Community entities are willing to accommodate ASD clientele and have done so when approached to comply.

I contend where any of these entities are not willing to foster inclusion, then the church can and most often should become involved to assist, with the necessary training. In other words, the church must do what the church has always done – stand up for those who are unable to do so for themselves.

Keywords: Autism, church, community, inclusion, parents, school

Hypoxic ischemic encephalopathy (HIE) is a serious birth complication of full term infants; 40-60% of affected infants die by 2 years or have severe disabilities. Infants with HIE often have a normal gestation and parents anticipate a healthy birth. HIE can be managed with aggressively with moderate hypothermia < 6 hours of life, cardiopulmonary support, and seizure management. Experimental interventions such as moderate hypothermia > 6 hours of life and umbilical cord stem cell transplant are also available. Additional decision-making for these infants may include long-term developmental therapy, nutritional support, and respiratory support. However, who makes these decisions, what factors influence decision-making and the long-term impact of decision-making on parents and health care providers remains unknown. Therefore, the purpose of this study was to explore parental and health care provider decision-making for infants with HIE.

A longitudinal case study design was used to study 11 cases of infants with HIE. Each case included the infant, the parent, and the infant's providers. Infant medical record data, interviews and questionnaires were used to collect data from infant birth through 6 months of age. Content analysis was used to analyze the interviews. Descriptive statistics were used with the questionnaires. Visualization techniques were used to search for patterns and trends in the assembled data.

All infants required resuscitation and their treatment plans included aggressive care or aggressive and experimental care. The level of parental participation varied with in the first week of life depending on whether the infant was enrolled in experimental interventions plus aggressive care or only aggressive care. Parental hopefulness was lower in parents of infants who received experimental interventions, but the infants receiving experimental interventions were less critically ill than infants who received aggressive care only. Parental stress was also lower among parents of infants who received experimental interventions over the first 2 months of life.

Parents were concerned about the short and long-term impact of HIE, few parents understood that even though their infant had appropriate developmental outcomes at 6-months that did mean that neurological damage occurred. However in one case of an infant, the neurological development became central to the parental decision-making for the infant. Parents became less hopeful as diagnostic examinations continued find more complex conditions that were individually not problematic for the parents, but when the complexity of the infant's illnesses continued to unfold, parents feared that too many complications existed for their daughter to have an acceptable quality of life. Yet, when parents broached the topic of transitioning from aggressive care to palliative care with providers, they were told that withholding/withdrawing treatment was not appropriate for the infant. Not discussing withholding or withdrawing treatment ultimately created conflict between parents and providers due to differences in opinions about the predicted neurological outcomes for the infant. The conflict led to distrust and parents regretted most decisions they made for their infant.

Parental and provider decision-making is complex and many of the decisions within the 6-month trajectory were made within the first 6 hours of birth. Parents felt that the decision-making was appropriate in most cases, but the extent of the infant's injury remains unknown. How parents will evaluate the decision-making when the infant begins to miss developmental milestones is unknown. Results from this dissertation suggest that decision-making is a trajectory and decisions are not made in isolation. Implications for practice include discussing and educating parents during the first 6 months and later about developmental milestones and the importance of continuing therapy, even when the infant appears normal. Providers can also acknowledge to parents, up front, that the extent of the neurological injury is unknown and different providers may have different opinions about the long-term effects. By acknowledging these differences, providers can begin discussing the treatment options with parents and educating them about the specific needs of their infant.

Background: In 2016, 36.7 million people globally were living with HIV and approximately 70% knew their status. Novel HIV testing methods and strategies are needed to reach the first “90-90-90” target by 2020; that is 90% of people living with HIV know their status. Children and adolescents face additional barriers to HIV testing that stem from gaps in provider-initiated testing and counselling (PITC), parents’ concerns related to stigma and discrimination, and beliefs that children living with HIV cannot survive to adolescence. PITC barriers and the stigma and discrimination parents’ may face when seeking HIV testing and counselling (HTC) for their children could be reduced through a novel HIV testing strategy, which includes oral fluid tests (OFTs) and parents performing oral fluid HIV self-tests (O-HIVST) on their children. Therefore, the study aims of this thesis were: 1) to determine the sensitivity, specificity, positive predictive value (PPV), and negative predictive value (NPV) of an OFT for HIV in children aged 2-18 using the standard point of care rapid diagnostic test (RDT) as a reference, 2) to explore parents’/guardians’ and older adolescent’s knowledge of, and attitudes about, OFTs and O-HIVST, 3) to explore parents’/guardians’ and older adolescent’s preferences when undergoing O-HIVST. No studies to our knowledge have examined the diagnostic accuracy of OFTs in children or the facilitators of O-HIVST performed by a parent or guardian on their children.

Methods: We conducted the study in two large urban hospitals in Harare, Zimbabwe. The sample included children and adolescents aged 2-18 whose HIV status was unknown. We performed an OFT, followed by a finger-prick RDT to validate the OFT results. In addition, we conducted in-depth interviews (IDIs) with parents/guardians of children aged 2-15 and older adolescents aged 16-18. Quantitative analysis included tabulating descriptive statistics and calculating sensitivity, specificity, PPV, and NPV of the OraQuick ADVANCE® Rapid HIV-1/2 Antibody Test. Thematic qualitative analysis was conducted on the IDIs.

Results: Preliminary sensitivity results of the OFT showed high sensitivity at 100% (95% CI 83.89, 100.00) and high specificity at 99.77% (95% CI 99.17, 99.97) compared to the finger-prick RDT. In addition, PPV was 91.30% (95% CI 71.96, 98.93), and NPV was 100% (95% CI 99.57, 100.00). Qualitative findings showed low knowledge of OFTs and O-HIVST among parents and adolescents. However, participants reported favorable attitudes towards performing O-HIVST on themselves and their children and also reported a preference for a wide range of uptake mechanisms when asked about O-HIVST. Participants expressed concern about O-HIVST but felt that counselling could reduce unfavorable reactions to positive O-HIVST results.

Conclusions: The preliminary analysis confirmed the OFT has high sensitivity, but a larger sample size is needed to obtain a more accurate estimate of OFT sensitivity. If future findings confirm our preliminary results, we recommend OFTs as a method to increase HIV testing and uptake among children. Participants’ low knowledge of OFTs and O-HIVST indicate sensitization is needed before scale up of this new method. We also recommend O-HIVST implementation include a variety of strategies to increase O-HIVST uptake among children and adolescents who may face barriers to traditional HTC.

Background

Objective

Participants and setting

Methods

Results

Conclusions

Background: Pneumococcal vaccines could protect children from being infected by some of the deadly Streptococcus pneumonia bacteria. However, since the pneumococcal vaccines have not yet been listed in China’s National Immunization Program (NIP), their coverage remains low due to the non-mandate and self-paid features. Parents are usually the key decision makers regarding their children’s PCV13 vaccine taking. Their exposure to vaccine information from trusted sources might influence this decision-making process. This study aims to explore the association between trust in information sources and parents’ knowledge, attitudes, and practices regarding PCV13 vaccination for children in the Yangtze River Delta region, China.Methods: This study applied an explanatory sequential mixed-method design, combining a web-based quantitative survey (N = 1,871) and qualitative interviews (N =19). Adult parents who had at least one child aged less than 24 months (including 24 months) and lived in the Yangtze River Delta region were recruited. A Five-Point Likert scale measured the level of trust in different sources. Adjusted Ordinary Least Square (OLS) regression model was applied to estimate the association between participants’ level of trust in different information sources and the primary outcomes. Semi-structured individual interviews were conducted. A thematic analytic approach was adopted to analyze the transcripts. Results: CDC received the highest trust score (4.48/5). High levels of uncertainty were identified in parents’ PCV13 knowledge. Age, gender, education, and annual household income were related to varied trust levels in specific sources. After controlling the effect of covariates, trust in healthcare institution sources was significantly associated with better PCV13 knowledge, less vaccine hesitancy, and a higher likelihood of vaccine uptake. Trust in official media was negatively associated with vaccine uptake. Trust in online community sources was positively associated with vaccine uptake. The qualitative study also identified parents’ trust in healthcare-related sources. Parents would consult multiple sources for vaccine information. Insufficient information provision during the vaccination process was one of the key drivers of vaccine information seeking. Parents had varied informed levels about PCV13 when making vaccination decisions. Conclusion: Healthcare institution sources were highly trusted and crucial in enhancing parents’ vaccine knowledge and acceptance of PCV13. The influence of online community sources on vaccine uptake is worth more attention. Public health policymakers could utilize media platforms with high engagement among parents for future optional vaccine promotion. Public health workers could consider embedding vaccine information provision into the pediatric vaccination process to inform parents’ decision-making better.