Risk and Protective Factors in the Lives of Caregivers of Persons With Autism: Caregivers’ Perspectives

PURPOSE The purpose of this descriptive exploratory study is to understand the experience of being a caregiver of a person with autism spectrum disorder (ASD) in the light of the resilience theory. METHODS Qualitative data were collected as a part of a larger quantitative study. Ninety-three caregivers completed this qualitative study and responded to the two open-ended questions. In the parent study, subjects were recruited by convenience sampling from the Interactive ASD Network (IAN). FINDINGS The identified categories appeared to reflect three distinct categories consistent with the resilience theory, labeled as follows: risk factors, protective factors, and overlapping factors. PRACTICE IMPLICATIONS These findings help to inform the planning of tailored interventions to enhance caregivers’ resilience

The prevalence and impact of child maltreatment and other types of victimization in the UK: Findings from a population survey of caregivers, children and young people and young adults

Objectives: To measure the prevalence of maltreatment and other types of victimization among children , young people and young adults in the UK; to explore the risks of other types of victimization among maltreated children and young people at different ages; using standardised scores from self-report measures, to assess the emotional wellbeing of maltreated children, young people and young adults taking into account other types of childhood victimization, different perpetrators, non–victimization adversities and variables known to influence mental health. Methods: A random UK representative sample of 2,160 parents and caregivers, 2,275 children and young people and 1,761 young adults completed computer-assisted self-interviews. Interviews included assessment of a wide range of childhood victimization experiences and measures of impact on mental health. Results: 2.5% of children aged under 11 years, 6% of children and young people aged 11 to 17 years had one or more experiences of physical, sexual or emotional abuse, or neglect by a parent or caregiver in the past year and 8.9% of children under 11 years, 21.9% of young people aged 11 to 17 years and 24.5% of young adults had experienced this at least once during childhood. High rates of sexual victimization were found, 7.2% of females aged 11 to 17 and 18.6% of females aged 18 to 24 reporting childhood experiences of sexual victimization by any adult or peer that involved physical contact (from rape to sexual touching). Victimization experiences accumulated with age and overlapped. Children who experienced maltreatment from a parent or caregiver were more likely than those not maltreated to be exposed to other forms of victimization, to experience non-victimization adversity, a high level of polyvictimization and to have higher levels of trauma symptoms. Conclusions: The past year maltreatment rates for children under age 18 were seven to seventeen times greater than official rates of substantiated child maltreatment in the UK. Professionals working with children and young people in all settings should be alert to the overlapping and age related differences in experiences of childhood victimization to better identify child maltreatment and prevent the accumulative impact of different victimizations upon children’s mental health

Peer-to-Peer Healthcare

Analyzes how patients and caregivers use the Internet to obtain information about health concerns, care, and support, with a focus on online peer networks of those with chronic or rare conditions. Examines sources relied on by type of information sought

To tell or not to tell? Youth\u27s responses to unwanted internet experiences.

Abstract This study is one of the first that investigated youth\u27s response to unwanted Internet experiences, not only for those youth who were bothered or distressed but for all youth who reported the experience. Three types of response were examined: telling someone about the incident and ending the unwanted situation by active or passive coping. Responses to the following unwanted Internet experiences were analysed: Sexual solicitation, online harassment and unwanted exposure to pornography. The study was based on data from the Third Youth Internet Safety Survey (YISS-3), a telephone survey with a nationally representative U.S. sample of 1,560 Internet users, ages 10 to 17, and their caretakers. Youth\u27s responses to unwanted Internet experiences differ depending on the type of unwanted experiences, whether they are distressed or have other negative reactions caused by the incident and - to some degree - other youth characteristics and incident characteristics. For example, not all youth who are distressed tell someone and not all youth who tell someone are distressed. Also, the reasons for telling may differ depending on whom they tell, and youth tell somebody less often about their victimization if they also are online perpetrators, but of different types of unwanted Internet experiences. Internet safety information for parents and parents\u27 active mediation of Internet safety does not seem to result in youth telling more often about unwanted Internet experiences

Factors impacting antiretroviral therapy adherence among human immunodeficiency virus-positive adolescents in Sub-Saharan Africa: a systematic review

© 2018 The Royal Society for Public Health. Published by Elsevier Ltd. All rights reserved.Objectives: Eighty-two percent of human immunodeficiency virus (HIV)–positive adolescents live in Sub-Saharan Africa (SSA). Despite the availability of antiretroviral therapy (ART), adherence levels are suboptimal, leading to poor outcomes. This systematic review investigated factors impacting ART adherence among adolescents in SSA, including religious beliefs and intimate relationships. Methods: A systematic review was conducted between June and August 2016 using eight electronic databases, including Cochrane and PubMed. Published, ongoing and unpublished research, conducted in SSA from 2004 to 2016, was identified and thematic analysis was used to summarise findings. Results: Eleven studies from eight SSA countries, published in English between 2011 and 2016, reported on factors impacting ART adherence among adolescents living with HIV (ALHIV). Forty-four barriers and 29 facilitators to adherence were identified, representing a complex web of factors. The main barriers were stigma, ART side-effects, lack of assistance and forgetfulness. Facilitators included caregiver support, peer support groups and knowledge of HIV status. Conclusions: Stigma reflects difficult relations between ALHIV and their HIV-negative peers and adults. Most interventions target only those with HIV, suggesting a policy shift towards the wider community could be beneficial. Recommendations include engaging religious leaders and schools to change negative societal attitudes. Limitations of the review include the urban settings and recruitment of predominantly vertically infected participants in most included studies. Therefore, the findings cannot be extrapolated to ALHIV residing in rural locations or horizontally infected ALHIV, highlighting the need for further research in those areas.Peer reviewedFinal Accepted Versio

Caregivers’ experience of sleep management in Smith–Magenis syndrome: a mixed-methods study

Background: Smith–Magenis syndrome (SMS) is a rare genetic syndrome associated with a unique profile of early morning waking and daytime sleepiness. Children with SMS evidence high rates of self-injury and aggression and have a preference for adult over peer attention, with strong motivation to interact with a particular caregiver. In addition, people with SMS have lower adaptive functioning skills relative to cognitive abilities and demonstrate high levels of impulsivity. Taken together, these factors may result in individuals being awake overnight requiring vigilant caregiver supervision. Despite these complexities, no study has described the strategies caregivers take to keep their children with SMS safe overnight or considered the impact of these experiences on caregivers or the wider family. Methods:The current study used a mixed-methods approach to consider sleep management strategies and challenges for caregivers of people with SMS at different ages. Caregivers completed an international online survey about sleep management and related difficulties, use of interventions and access to services and support. Semi-structured interviews were conducted with 14 caregivers in the UK to increase understanding of caregiver experiences and priorities for change in the UK context. Interviews were transcribed verbatim and coded using thematic analysis. Results:Evidence from the online survey (n = 40) revealed wide-ranging impacts of poor sleep on the person with SMS and the wider family. Only 5% of caregivers reported that the sleep problems had no impact on their child, and 76% reported a moderately or extremely significant impact on themselves. For some individual caregivers, sleep management difficulties improved over time whereas for others no change was reported. Weekly respite emerged as the ideal provision for 49% of caregivers, although only 14% had access to this. The majority of caregivers (54%) received no respite. Thematic analysis of qualitative interviews revealed interactions between aspects of the behavioural phenotype of SMS which may contribute to complex and unusual presentations in relation to sleep management and safety. Conclusions: Caregivers’ priorities for sleep management and support were delineated, with key implications for services in terms of the use of SMS-sensitive strategies and respite provision

Child and Youth Victimization Known to Police, School, and Medical Authorities.

Presents the survey results from the National Survey of Children\u27s Exposure to Violence (NatSCEV) regarding authorities\u27 knowledge of victimization incidents involving children and youth, particularly police, school, and medical authorities. Compared with a similar study in the early 1990s, the survey found that authorities were more likely to know about NatSCEV survey participants\u27 exposure to violence, which may reflect efforts by authorities, criminal justice and child protection agencies, and advocates to promote disclosure. This increase in disclosure is also consistent with the decrease in child victimizations during the last two decades. The survey found that 46 percent of children who were victimized in the previous year had at least one victimization known to school, police, and medical authorities, with school authorities (e.g., teachers, principals, and counselors) being the most likely to know of the victimizations. However, police were most likely to know about many of the most serious victimizations. In general, authorities were most likely to know about serious victimizations, including sexual abuse by an adult, kidnapping, and gang or group assaults. They were least likely to know about victimizations committed by other youth, including peer and sibling assaults, dating violence, flashing, and completed or attempted rate. This bulletin also discusses factors that promote or hinder disclosure of victimization incidents to authorities, and the implications of the increase in disclosure for prevention and treatment. This is the fourth in a series of bulletins that present findings from NatSCEV, the most comprehensive nationwide survey to date of the incidence and prevalence of children’s exposure to violence across all ages, settings, and timeframes

Child Abuse and Neglect in the UK Today

This report presents new research findings from the NSPCC on child maltreatment in the United Kingdom, looking specifically at the prevalence and impact of severe maltreatment. We found that the rates of child maltreatment reported by young adults aged 18–24 were lower in 2009 than in 1998, suggesting maltreatment may be less prevalent today. However, significant minorities of children and young people in the UK today are experiencing severe maltreatment and this is associated with poorer emotional wellbeing, self-harm, suicidal ideation and delinquent behaviour

Ideabook: Libraries for Families

The IDEABOOK is a research-based framework to guide and broaden family engagement in libraries.The framework helps libraries move beyond thinking of family engagement as random, individual activities or programs, but rather as a system where library leadership, activities, and resources that are linked to goals. The framework represents a theory of change that begins with a set of elements—leadership, engagement, and support services—that build a pathway for meaningful family engagement beginning in the early childhood years and extending through young adulthood.This IDEABOOK was developed for anyone who works in a library setting—from library directors and children's and youth librarians, to volunteers and support staff—and shares many innovative ways that libraries support and guide families in children's learning and development