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Caring for a sick/disabled child

The following resources examine particular issues and challenges for family members caring for children under 18 with a long-term condition, including physical disability, mental health and learning disability.

Click on the title of any resource to find out more about the source of the information such as the type of reference, ISBN/ISSN, publication year, keywords. A number of these fields can be used to find further resources i.e. with the same keywords, or by the same author using the links on the right-hand side and within the Key Information box.

You can also click on an author's name in the list below to find further resources by that author, and use the DOI and other links to access the original source material (note: some source materials require subscription or permission to access).

Caring for a cerebral palsy child: a caregivers perspective at the University Teaching Hospital, Zambia

Background: Cerebral palsy is a major cause of disability and most survivors are left with residual disability and are dependent on parents/caregivers for essential care. This study aimed to determine the experiences of parents/caregivers of cerebral palsy children receiving out-patient physiotherapy. Methods: A concurrent mixed methods was used to collect data in the present study. The modified caregiver strain index (MCSI-13) was used to detect Disturbed sleep, Inconvenient/Tiresome, Physical strain, Confining, Family changes, Changes in personal plan, Other demands, Emotional adjustments, Upsetting behavior, Patient has changed, Work adjustments, Financial Strain and Feeling Overwhelmed (strain morbidity) in 25 parents/caregivers of CP children. A purposive sample of 25 parents/caregivers was selected for both the quantitative part and qualitative part of the study. The study was conducted at Community Based Intervention Association Out-patients at the University Teaching Hospital in Lusaka, Zambia. The MCSI was used to collect quantitative data and in-depth interviews provided the qualitative data. Results: The median age of the participants was 33.6 years and a range of 27 to 50 years. The study sample consisted of more females (92%) than males (8%). being overwhelmed and inconvenient/tiresome followed by family adjustments and work adjustment 72 and 68% respectively for each were the experiences mostly highlighted by the parents/caregivers in this study. When it came to the needs of the parents/caregivers more than half of them needed help with caring. To this effect participants expressed their perception; one mother had this to say, "…I need someone to help in caring. Sometimes I need to do some other things but can't, because if I do then no one will remain with the child…". Conclusion: This study point out to some evidence that the burden inflicted on those caring for children with cerebral palsy should be addressed if the quality of care for those with cerebral palsy is to be improved.

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Economic burden and health-related quality of life associated with Prader-Willi syndrome in France

Background: To date, there has been no published comprehensive estimation of costs related to Prader-Willi syndrome (PWS). Our objective was therefore to provide data on the economic burden and health-related quality of life associated with PWS in France in order to raise awareness of the repercussions on individuals suffering from this syndrome and on caregivers as well as on the health and social care systems. Method: A retrospective cross-sectional study was carried out on 51 individuals recruited through the French PWS patient association. Data on their demographic characteristics and resource use were obtained from an online questionnaire, and costs were estimated by a bottom-up approach. The EQ-5D-5L health questionnaire was used to measure the health-related quality of life of individuals suffering from PWS and their caregivers. Results: The average annual cost of PWS was estimated at €58 890 per individual, with direct healthcare accounting for €42 299, direct non-healthcare formal costs €13 865 and direct non-healthcare informal costs €8459. The main contributors to PWS costs were hospitalisations and social services. Indirect costs resulting from loss of productivity in the labour market was €32 542 for adults suffering from PWS. Mean EQ-5D utility scores were 0.4 for individuals with PWS and 0.7 for caregivers. Conclusions: Prader-Willi syndrome represents a major economic burden from a societal perspective and has a significant impact on health-related quality of life both for individuals suffering from PWS and for their caregivers in France. These results underscore the need to develop tailored policies targeted at improving care. Likewise, a larger study collecting a broader range of medical characteristics should be undertaken to achieve more precise estimations.

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Perspectives of children, family caregivers, and health professionals about pediatric oncology symptoms: a systematic review

Objectives: To evaluate the existing body of evidence to determine the current state of knowledge regarding the perspectives of the following groups: (1) children with cancer, (2) family caregivers, and (3) healthcare professionals, about symptoms, as well as factors that may influence the symptom reports. Methods: A systematic search was performed for all types of studies that included the perspectives of at least two groups of participants' symptom reports. Children included anyone younger than 19 years of age who was diagnosed with any type of cancer. Electronic searches were conducted in five English databases and four Chinese databases. The appraisal of methodological quality was conducted using the GRADE criteria. Data were extracted into matrix tables. Results: Thirty-three studies were included. The pediatric oncology symptoms reported by children, family caregivers, and healthcare professionals were synthesized. Findings suggested that family caregivers' symptom reports were more closely aligned with children's reports than with the healthcare professionals' reports. Influencing factors on the different symptom reports included the children's diagnosis, symptom characteristics, social-demographic factors, and family caregivers' psychosocial status. Conclusions: Children with cancer should be the primary reporters for their symptoms. When there are reporters other than the children, the potential discrepancy between the different perspectives needs to be carefully considered.

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Codesign and Usability Testing of a Mobile Application to Support Family-Delivered Enteral Tube Care

Background: Enteral tubes are prevalent among children with medical complexity (CMC), and complications can lead to costly health care use. Our objective was to design and test the usability of a mobile application (app) to support family-delivered enteral tube care. Methods: Human-centered design methods (affinity diagramming, persona development, and software development) were applied with family caregivers of CMC to develop a prototype. During 3 waves of usability testing with design refinement between waves, screen capture software collected user-app interactions and inductive content analysis of narrative feedback identified areas for design improvement. The National Aeronautics and Space Administration Task Load Index and the System Usability Scale quantified mental workload and ease of use. Results: Design participants identified core app functions, including displaying care routines, reminders, tracking inventory and health data, caregiver communication, and troubleshooting. Usability testing participants were 80% non-Hispanic white, 28% lived in rural settings, and 20% had not completed high school. Median years providing enteral care was 2 (range 1-14). Design iterations improved app function, simplification, and user experience. The mean System Usability Scale score was 76, indicating above-average usability. National Aeronautics and Space Administration Task Load Index revealed low mental demand, frustration, and effort. All 14 participants reported that they would recommend the app, and that the app would help with organization, communication, and caregiver transitions. Conclusions: Using a human-centered codesign process, we created a highly usable mobile application to support enteral tube caregiving at home. Future work involves evaluating the feasibility of longitudinal use and effectiveness in improving self-efficacy and reduce device complications.

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The sibling's perspective: experiences of having a sibling with a learning disability and behaviour described as challenging

Purpose: Siblings of individuals with disabilities provide the most long-term care for an individual with disabilities, yet research on their experiences is limited. A majority of previous research focuses on young siblings from a parent's viewpoint. The purpose of this paper is to investigate the effects of having a sibling with a disability and behaviour described as challenging from adult siblings' perspectives. Design/methodology/approach: Six adult siblings of individuals with intellectual disabilities and behaviour described as challenging were interviewed about their responsibilities pertaining to their sibling, family relationships and the support that had been provided. The study used semi-structured interview methodology based on interview questions from previous research. Findings: Siblings described a multifaceted impact on their lives. They attributed aspects of their career choices, personal characteristics and family dynamics to having a sibling with a disability and behaviour that challenges. Siblings stressed the inadequate support that they have received throughout their lives. They are, in a sense, the invisible carers for their sibling but they are perceived by society as just a sibling. Siblings described an optimistic perspective on their lives, even though they expressed the difficulties that they have faced. Research limitations/implications: Due to the recruitment process and limited demographic of the participants, the findings may not be generalisable to the general population of siblings of individuals with disabilities. Further research should focus on a broader population. Practical implications: This study reinforces the need for more support for siblings of individuals with disabilities in childhood and in adulthood. Originality/value: This paper provides perspectives of individuals that have not been fully represented in previous research.

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A service evaluation of parent adherence with dysphagia management therapy guidelines: reports from family carers supporting children with complex needs in Greece

Purpose: Many children with complex needs exhibit eating, drinking, and/or swallowing disorders (dysphagia). These children often have associated learning needs, and require assistance from carers for daily tasks such as eating and drinking. The aim of this study was to identify which strategies to manage dysphagia were challenging for family carers, and reasons for any non-adherence. Method: In this service evaluation researchers observed carers during mealtimes, and investigated carer opinions of strategies used to minimise the risks of dysphagia. Eight children with complex needs aged 3.4–7.5 years and their primary family caregiver participated. Results: Adherence with speech and language pathologists' dysphagia recommendations overall was over 50% in all but one case. For specific strategies, the highest adherence was observed for diet modifications of foods (89%), communication during the mealtime (83%), amount of food to present (81%), and the pacing of fluids and foods (81%). Lower levels of adherence were identified in relation to postural management (58%), environmental changes (58%), utensils (56%), and preparatory strategies (49%). Conclusions: Adherence with use of strategies to support mealtimes was over 50% in all but one case. Findings suggest that support is essential to promote safe mealtimes, reduce family carers' stress and increase knowledge, confidence, and adherence in implementing dysphagia guidelines in the family home. Difficulties with eating, drinking and swallowing (dysphagia) can impact on the parent–child mealtime experience. Mealtime strategies as recommended by a speech-language pathologist can support children who have difficulties eating, drinking, and swallowing. Some strategies to support eating, drinking, and swallowing are easier for carers to adhere to than others. 

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The impact of pediatric hematopoietic stem cell transplant timing and psychosocial factors on family and caregiver adjustment

Background: The impact of pediatric hematopoietic stem cell transplant (HCT) on family functioning varies, but little is known about how the timing of HCT in children's treatment course contributes to this variability. This study examines how preexisting child, sibling, and family problems, the length of time between diagnosis to HCT, and children's age at HCT are associated with family and caregiver functioning. Procedure: Caregivers (n = 140) of children (≤18 years old) scheduled to undergo their first HCT completed the Psychological Assessment Tool-HCT and the Impact on Family Scale. Treatment information was extracted from electronic medical records. A bootstrapped multivariate path analysis was used to test the hypotheses. Results: More preexisting family problems related to greater caregiver perceived negative impact of their child's HCT across family and caregiver functioning domains. Less time between diagnosis and HCT was associated with greater caregiver personal strain, particularly for those with younger children undergoing HCT. Younger child age at HCT was also associated with a larger negative impact on family social functioning. Conclusions: Families with preexisting problems are the most at-risk for experiencing negative impacts related to their child's HCT. The timing of a child's HCT within their treatment course and the child's age during HCT may impact families' social functioning and caregiver adjustment. Screening families for preexisting family problems, particularly for families with young children or who are abruptly learning of their child's need for an HCT, may assist providers in identifying families who would benefit from earlier or more intensive psychosocial support.

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Prenusinersen economic and health-related quality of life burden of spinal muscular atrophy

Objective: To quantify the economic and health-related quality of life (HRQoL) burden incurred by households with a child affected by spinal muscular atrophy (SMA). Methods: Hospital records, insurance claims, and detailed resource use questionnaires completed by caregivers were used to capture the direct and indirect costs to households of 40 children affected by SMA I, II, and III in Australia between 2016 and 2017. Prevalence costing methods were used and reported in 2017 US dollar (USD) purchasing power parity (PPP). The HRQoL for patients and primary caregivers was quantified with the youth version of the EQ-5D and CareQoL multiattribute utility instruments and Australian utility weights. Results: The average total annual cost of SMA per household was $143,705 USD PPP for all SMA types (SMA I $229,346, SMA II $150,909, SMA III $94,948). Direct costs accounted for 56% of total costs. The average total indirect health care costs for all SMA types were $63,145 per annum and were highest in families affected by SMA II. Loss of income and unpaid informal care made up 24.2% and 19.8% respectively, of annual SMA costs. Three of 4 (78%) caregivers stated that they experienced financial problems because of care tasks. The loss in HRQoL of children affected by SMA and caregivers was substantial, with average caregiver and patient scores of 0.708 and 0.115, respectively (reference range 0 = death and 1 = full health). Conclusion: Our results demonstrate the substantial and far-ranging economic and quality of life burden on households and society of SMA and are essential to fully understanding the health benefits and cost-effectiveness associated with emerging disease-modifying therapies for SMA.

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A qualitative evaluation of caregivers' experiences, understanding and outcomes following diagnosis of FASD

Introduction: The effects of prenatal exposure to alcohol are wide-ranging and pervasive in nature. In response to growing concerns about the lifelong disabilities related to prenatal alcohol exposure, a fetal alcohol spectrum disorder (FASD) diagnostic clinic was established in 2012. This was the first multi-disciplinary service operating permanently within an Australian health service. The current study aimed to explore the lived experience of the diagnostic process for caregivers of children with FASD. Methods: Twelve caregivers were approached and ten participated in audiotaped interviews about caring for a child with FASD. Qualitative analysis was undertaken on transcribed interviews using NVivo 10 for thematic analysis. Results: The major themes that emerged were: a desire for future support for their child although uncertainty about how this support could be accessed; an understanding of FASD prior to assessment but a concerted concern that this condition was not recognised as a disability across educational and related settings; that a formal assessment process provided validation for caregiver concerns and that caregivers felt respected and understood by the clinical team during this process. Discussion: These findings highlight the concerns of caregivers, emphasising both the importance of diagnostic services and the need for provision of further support beyond diagnosis for a child with FASD. WHAT DOES THIS PAPER ADD?: This study provides information on the lived experiences of caregivers who attended the first multi-disciplinary FASD assessment and diagnostic service in Australia. This study provides valuable insight into the ongoing difficulties that families are experiencing following diagnosis in the current Australian context.

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Factors contributing to higher caregiving burden in Turkish mothers of children with autism spectrum disorders

Aim: The aim of this study was to explore the caregiver burden and related factors such as expressed emotion (EE), social support, life satisfaction, dyadic adjustment, post-traumatic growth, and socio-demographic characteristics of mothers with autism spectrum disorder (ASD) children. Methods: Sixty-two mothers of children with autism spectrum disorder and 60 mothers of typically developing children completed the Zarit Burden Scale, the Multidimensional Scale of Perceived Social Support, the Satisfaction with Life Scale, the Dyadic Adjustment Scale, the Expressed Emotion Scale, and the Post-Traumatic Growth Inventory. The Autism Behavior Checklist was used to examine the severity of autistic behaviors. A socio-demographic data form was applied to the subjects. Participants were recruited in Autistic Children Education Center, homes, and workplaces. Correlation analysis, independent-samples t-tests, post hoc Mann–Whitney U, and SEM tests were conducted for statistical analyses. results: Higher maternal caregiving burden was associated with lower life satisfaction and higher level of disability in Turkish children with ASD. Also, higher life satisfaction of mothers with ASD children was related to higher social support and dyadic adjustment, and lower EE. According to the SEM analysis, disability percentages, autism-related behaviors in children, and poor dyadic adjustment were significant predictors of caregiving burden in these mothers which in turn resulted with higher EE and poor life satisfaction. There are several studies that have investigated the distress in parents of children with developmental disabilities in general, but caregiving burden in ASD was not evaluated elsewhere in detail. Conclusions: These mothers need professional guidance and psychosocial support during the parenting process. Further studies that aim to investigate the whole family, including the father and the siblings, are also necessary.

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Differences in parental involvement in the care of children and adolescents with type 1 diabetes mellitus on multiple daily insulin injections versus continuous subcutaneous insulin infusion

Background: Assessing the degree of involvement of caregivers for children with type 1 diabetes mellitus (T1DM) in their diabetes care, differences in the degree of involvement based on the method of insulin administration (multiple daily injections: MDI/continuous subcutaneous insulin infusion: CSII), and its effect on glycemic control. Methods: This was a cross-sectional study with T1DM patients, ages 6-13 years using a six question survey derived from the Diabetes Family Responsibility Questionnaire (DFRQ). All caregivers (n=140) and participants between ages 11 and 13 (n=60) completed the survey. Results: Significant differences between MDI and CSII caregiver responses were found for responsibility for giving insulin boluses, as well as for rotation of infusion/injection sites (p<0.001 and p=0.03, respectively). A sub-analysis of caregiver responses for caregiver versus child responsibility for giving infusion boluses (excluding shared responsibility) showed that 36% of children in the CSII group had primary responsibility for giving insulin boluses, compared to 17% in the MDI group (p<0.001). The median agreement for all questions combined between participants and caregivers for ages 11-13 (n=60 pairs) was "poor" (κ=0.18). No significant effect of parental involvement on last 2-year average HbA1C was found for CSII or MDI groups (p>0.20). Conclusions: Caregiver reported diabetes care responsibility (mostly parent, mostly child, shared between parent and child) varies for certain aspects of diabetes related care for children ages 6-13, depending upon the mode of insulin administration. Based on the reported degree of parental collaboration, HbA1C did not differ significantly. However, long-term effects are yet to be determined in longitudinal studies.

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Siblings of children with Williams syndrome: Correlates of psychosocial adjustment and sibling relationship quality

Highlights: Overall, siblings of children with WS do not show heightened behavioural difficulties or anxiety compared to population norms. Caregivers report heightened emotional difficulties in some siblings of children with WS. Caregivers report fewer adjustment and relationship difficulties in siblings of children with WS than do the siblings themselves. Adjustment problems in siblings of children with WS are associated with increased caregiver depression and more sibling relationship conflict. Higher warmth in the sibling relationship is associated with increased prosocial behaviour in the child with WS. Background: Previous research has examined adjustment in parents of children with Williams syndrome (WS), but little is known about sibling outcomes. Aims To explore sibling adjustment and relationship quality, and their demographic, psychological and behavioural phenotypic correlates from the perspective of caregivers and siblings in families of children with WS. Methods and procedures: Forty-one caregivers of children with WS participated in this questionnaire study on the adjustment and relationship quality of the siblings. In 31 of these families, self-report data were also provided by the siblings themselves. Data were also gathered on potential correlates, including anxiety and social functioning in the child with WS, caregiver mental health, and sibling social support. Outcomes and results: Sibling adjustment was similar to population norms, though significantly increased caregiver-reported emotional difficulties were found. Siblings reported greater behavioural, emotional and relationship difficulties than caregivers perceived them to have. Some significant associations were found between the behaviour of the child with WS, sibling behaviour problems and sibling relationship quality. Conclusions and implications: A picture of relatively positive sibling adjustment and relationships emerged, but findings of individual differences and some emotional difficulties emphasise the need for an individualised approach to support in families of children with WS.

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Functional Independence of Children With Myelomeningocele: Is It Associated With the Informal Caregivers' Burden?

Purpose: This study aims to evaluate the association between the functional independence of children after postnatal spinal dysraphism correction and informal caregivers' burden. Design and Methods: This is a cross-sectional study conducted in a child neurosurgery clinic at a University hospital. We included informal caregivers of children between six months and seven-and-a-half years old who were operated on for spinal dysraphism correction due to myelomeningocele. Functional independence was assessed using the Pediatric Evaluation of Disability Inventory (PEDI). Caregivers' burden was assessed through the Caregiver Burden Scale (CBS). Results: Twenty-six caregivers were assessed, all mothers, aged 18-42years. Five provided child care and engaged in paid work. Regarding functional independence, 23.1% of the children were classified as needing supervision, 23.1% moderate assistance, 42.3% maximal assistance, and 11.5% total assistance. Median value for the overall CBS was 27.0 (22.0-53.0). The mean global CBS score was 1.42 and the mean PEDI score was 1.95. Correlations between PEDI and CBS scores were very close to zero. Conclusions: We found no association between the functional independence of children with myelomeningocele from 0 to 7years old and the burden of informal caregivers. Practice Implications: The effect of functional independence of children with myelomeningocele may be balanced by the caregivers' resilience so that caregivers' burden is not dependent upon the child's independence.

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Mental Health Interventions for Parent Carers of Children with Autistic Spectrum Disorder: Practice Guidelines from a Critical Interpretive Synthesis (CIS) Systematic Review

Background: Parent carers of children with Autism Spectrum Disorder (ASD) often report increased levels of stress, depression, and anxiety. Unmet parent carer mental health needs pose a significant risk to the psychological, physical, and social well-being of the parents of the child affected by ASD and jeopardize the adaptive functioning of the family as well as the potential of the child affected by ASD. Methods: This systematic review identifies key qualities of interventions supporting the mental health of parent carers and proposes practitioner-parent carer support guidelines. A search of four databases (Medline, PubMed, PsycINFO, and Social Science Data) was conducted to identify studies that met the following criteria: (1) an intervention was delivered to parent carers of a child with ASD under the age of 18 years; (2) the research design allowed for a comparison on outcomes across groups; and (3) outcome measures of the parent carers' mental health were used. Results: A total of 23 studies met the inclusion criteria. A critical interpretive synthesis approach was used to produce an integrated conceptualization of the evidence. Findings suggest practitioner guidelines to support the mental health and wellbeing of parent carers should include addressing the parent's self-perspective taking and skill for real time problem-solving.

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Risk of mortality among children, adolescents, and adults with autism spectrum disorder or attention deficit hyperactivity disorder and their first-degree relatives: a protocol for a systematic review and meta-analysis of observational studies

Background: Autism spectrum disorder (ASD) and attention deficit hyperactivity disorder (ADHD) are childhood onset neurodevelopmental disorders that may persist into adulthood. ASD and ADHD tend to run in families and may have a significant negative impact on the health and longevity of those with the disorder and their relatives. The aim of this study will be to analyze the risk of mortality among children, adolescents, and adults with ASD or ADHD and their first-degree relatives. Methods/design: We will conduct a systematic review and meta-analysis of observational studies. Searches of PubMed/MEDLINE, EMBASE, PsycINFO, SCOPUS, and ISI Web of Science will be used to identify epidemiological studies. Eligible studies will be observational studies reporting study-specific data for all-cause mortality or cause-specific mortality in children, adolescents, or adults with ASD or ADHD and/or their first-degree relatives. Cohort studies and case-control studies will be included. The primary outcome will be all-cause mortality. The secondary outcome will be cause-specific mortality. Two reviewers will independently screen references identified by the literature search, as well as potentially relevant full-text articles. Data will be abstracted, and study risk of bias/methodological quality will be appraised by two reviewers independently. The methodological quality of epidemiological studies will be appraised using the Newcastle-Ottawa Scale (NOS). Conflicts at all levels of screening and abstraction will be resolved through discussion. Random-effects meta-analyses of primary studies will be conducted where appropriate. Subgroup analyses for exploring statistical heterogeneity, if feasible, will include gender, age group, ethnicity, comorbidities, classification of cause of death, and relevant study characteristics. Discussion: Our study will establish the extent of the epidemiological evidence underlying the risk of mortality among children, adolescents, and adults with ASD or ADHD and their first-degree relatives. We anticipate that our findings will be of interest to patients, their families, caregivers, healthcare professionals, scientists, and policy makers. Implications for future epidemiological research will be discussed. Systematic Review Registration: PROSPERO CRD42017059955 .

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The day-to-day experiences of caring for children with Osteogenesis Imperfecta: A qualitative descriptive study

Aims and Objectives: To explore the day-to-day experiences of family caregivers who are caring for children with Osteogenesis Imperfecta (OI).; Background: Osteogenesis Imperfecta is a rare genetic condition known to cause bone fragility. Family caregivers of children with OI play an important role in helping these children live well at home. Design: A qualitative descriptive design was used.; Methods: A qualitative descriptive study was conducted in accordance with the COREQ guidelines. Adult family caregivers (n = 18) of children with OI were recruited from a university-affiliated, paediatric orthopaedic hospital in Montreal, Canada. Individual interviews were conducted, transcribed verbatim and inductively thematically analysed. Results: Osteogenesis Imperfecta family caregiving entailed: (a) managing regular day-to-day caregiving activities, including morning routines, evening routines and the facilitation of their child's mobilisation; (b) coping with periods that made the caregiving routine more challenging, such as fractures, surgeries and pain; and (c) devising long-term strategies to support day-to-day care, such as managing the environment, accessing medical and school resources, and coordinating care and respite. Conclusions: The day-to-day routine of caring for a child with OI may be disrupted by challenging periods and improved by long-term strategies developed to ease day-to-day care. These strategies suggest future directions for clinicians and policymakers to improve health services and caregiver well-being. Relevance to Clinical Practice: Clinical, policy and research endeavours need to incorporate new interventions to support the needs of family caregivers. These recommendations may be relevant to other clinicians and policymakers working with families living with rare and chronic physical conditions.

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A possibility for strengthening family life and health: Family members’ lived experience when a sick child receives home care in Sweden

Background: Families often prefer home care to hospital care, and home‐care services for ill children are increasing worldwide with limited knowledge of families’ needs during curative and palliative home care. The aim of this study was to elucidate family members’ lived experience when a sick child received home care from county‐based primary healthcare services. Methods: A descriptive qualitative design was chosen and 12 families including sick children receiving home care and their mothers, fathers and siblings in the south of Sweden were interviewed between December 2015 and January 2017. The transcribed interviews were analysed using a hermeneutic phenomenological approach. Results: The family members’ lived experience was described in three essential themes: “Strengthening family life” relates to how home care induced freedom and luxury in a strained period of life and supported the families’ everyday life. Usual social activities and relations were maintained as time and energy was saved when receiving home care. “Promoting health” relates to how the family members’ burden of illness decreased as the child's signs of illness alleviated and the well‐being of the whole family increased when the child received care in the home. This provided a peaceful respite for family members’ psychosocial recovery. The third theme, “Creating alliances,” relates to the importance of creating trustful alliances for communicating participation in care. If trustful alliances were not created, parents felt an overwhelming responsibility and family members became anxious. Conclusions: The findings suggest that care in the family's home is a useful complement to hospital care. Home care should be given with close attention to family members’ needs and conditions, as positive effects of home care might be jeopardised when expectations and possibilities are not successfully shared.

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'Knowing the Places of Care': How Nurses Facilitate Transition of Children with Complex Health Care Needs from Hospital to Home

Background: The number of children with complex health care needs continues to rise and they often have prolonged hospital stays with their discharge home being delayed by a range of factors. These delays occur despite the fact that, except in extraordinary circumstances, a child's home is the most appropriate place for them to receive long-term care. Methods: The aim of this qualitative interview-based study was to explore the work of nurses whose main role is supporting children and families move from an institutional place of care to long-term care within the family home. Analysis of interview transcripts was collaborative, interpretive, and thematic. A total of 46 participants (9 nurses and 37 local stakeholders) engaged in the study. Results: Findings reflect the ways in which the nurses facilitated transition of children with complex needs from hospital to home and the journeys the nurses took to develop the skills, knowledge, and networks needed to support this transition. 'Knowing the places of care' was fundamental to the success of the nurses' work. As the nurses' knowledge of the places (and processes) of care deepened, they were better able to act as informed guides to families and other professionals and to improve care. Conclusions: The nurses' practice was driven by the belief that the place where care occurs matters. Home was seen as a transformative and sustaining place where caring practices could become incorporated into an environment in which the family could exist and be nurtured together. 

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Impact of oral conditions of children/adolescents with Down syndrome on their families' quality of life

Aims: To assess the impact of oral conditions among children/adolescents with Down syndrome (DS) on the Oral Health-related Quality of Life (OHRQoL) of their families in comparison with a group without DS. Methods and Results: Families of 144 children/adolescents with DS aged 4-18 years were compared with families of individuals without DS. Dental caries experience (DMFT/dmft), clinical consequences of untreated dental caries (PUFA/pufa), gingival bleeding (GBI), visible plaque (VPI), and malocclusion were evaluated. Parents/caregivers answered the Family Impact Scale (FIS) and questionnaires on sociodemographic conditions and the health of children/adolescents. Data analysis included chi-square test and Poisson regression. There was no difference between groups regarding the impact of the children's/adolescents' oral condition on their families' OHRQoL for all domains and the total FIS score (P > 0.05). A negative impact on the OHRQoL of families of children/adolescents with DS was determined by dental caries (PR = 3.95, CI = 2.09-7.46), clinical consequences of untreated dental caries (PR = 1.83, CI = 1.18-2.84), defined malocclusion (PR = 2.75, CI = 1.23-6.13), and severe malocclusion (PR = 2.82, CI = 1.02-7.74). Conclusion: There is no difference on the OHRQoL of families of children/adolescents with and without DS. Dental caries experience, clinical consequences of untreated dental caries, defined malocclusion, and severe malocclusion determined the negative impact on the OHRQoL of families of children/adolescents with DS.

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The relationship between treatment attendance, adherence, and outcome in a caregiver-mediated intervention for low-resourced families of young children with autism spectrum disorder

Background: Rates of participation in intervention research have not been extensively studied within autism spectrum disorder. Such research is important given the benefit of early intervention on long-term prognosis for children with autism spectrum disorder. The goals of this study were to examine how family demographic factors predicted treatment attendance and adherence in a caregiver-mediated randomized controlled trial targeting core deficits of autism spectrum disorder, and whether treatment attendance and adherence predicted outcome. Methods: In all, 147 caregiver-child dyads from a low-resourced population were randomized to in-home caregiver-mediated module or group-based caregiver education module treatment. Treatment attendance, adherence, and outcome (time spent in joint engagement) were the primary outcome variables. Results: The majority of families who entered treatment (N = 87) maintained good attendance. Attendance was significantly predicted by socioeconomic status, site, and treatment condition. Families in caregiver-mediated module reported lower levels of treatment adherence, which was significantly predicted by site, condition, caregiver stress, and child nonverbal intelligence quotient. Dyads in caregiver-mediated module had significantly longer interactions of joint engagement, which was significantly predicted by an interaction between treatment attendance and condition. Conclusions: Overall, the results from this study stress the importance of considering demographic variables in research design when considering barriers to treatment attendance and adherence. 

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Adaption strategies used by siblings to childhood cancer patients

Objective: Siblings of childhood cancer patients experience social challenges. The results presented in this article are part of a larger qualitative study aiming to generate empirical knowledge about social consequences of childhood cancer from the family's perspective. Methods: Data were collected through interviews, observational studies, and questionnaires. The study included 68 childhood cancer patients, 39 siblings, and 39 parents from a total of 78 families. Grounded theory informed the data analysis. Results: Major life changes caused by childhood cancer entail an emotional hierarchy regarding the accommodation of each family member's need for help. This study identified a dynamic three‐variable, four‐adaption model for adaption strategies among siblings towards their parents, based on the sibling's perspective: (1) receives help without asking; (2) receives help after asking; (3) receives no help despite asking; and (4) receives no help and does not ask. Three variables are elaborative to understand the dynamic in adaption strategies: the patient's prognosis, the course of the disease, and the current situation of the diagnosed child. Even though the adaptions are reported by siblings, both patients and parents are aware of and concerned about the siblings' challenges. Conclusions: These results have implications for practice and have the potential to improve social and health care professionals' awareness and ability to offer support and information needed by the families and the siblings. The knowledge presented in this article should be considered basic health care information in line with other information such as treatment protocols.

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Coping Among Parents of Teens With Inflammatory Bowel Disease

Background: Parents of teens with inflammatory bowel disease must prepare their children for independent disease self-management. This study characterizes the stressors and coping strategies adopted among parents of teens with inflammatory bowel disease. Methods: Teens aged 16-22 years with inflammatory bowel disease who were consecutively seen by a pediatric gastroenterologist prior to transition to adult-centered care and their parents completed sociodemographic data, and two validated questionnaires for coping (Coping Health Inventory for Parents) and stress (Pediatric Inventory for Parents). Results: Sixty-six patient-parent pairs were enrolled in this study-impairment was highest in role function (e.g., trying to attend to the needs of other family members, being unable to go to work, and feeling uncertain about how to maintain consistent discipline). These concerns seemed to be most pronounced among parents of children 18 years and older (χ (df) = 1, p = .04) with Crohn disease (χ (df) = 1, p = .02). The top five listed concerns differed depending on the caregiver's gender. Parents of teens with inflammatory bowel disease are concerned about parenting role function. Parents of teens 18 years and older with Crohn disease reported the highest stress. Caregiver gender differences were noted.

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Internet Use Among Caregivers of Urban Children With Persistent Asthma

The article offers information on the internet use among caregivers of urban children with persistent asthma. It discusses that Asthma as the most common chronic disease of childhood in the U.S. It mentions that Internet provides an opportunity to support patients with chronic diseases outside of traditional health care settings.

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How congenital Zika virus impacted my child's functioning and disability: a Brazilian qualitative study guided by the ICF

Introduction: The Zika virus outbreak in Brazil has had devasting social, medical and financial consequences for families. Both researchers and clinicians are measuring longer-term outcomes to understand the impact of the Zika on child development, functioning and disability. Outcomes and tools used to measure them are very varied and we are unclear how meaningful they are to families and children. This study aimed to identify the parents' perspectives on relevant areas of functioning and disability that should be included as outcome measures for children with congenital Zika syndrome (CZS), as guided by the International Classification of Functioning, Disability and Health (ICF). Methods: This qualitative study included parents or caregivers of children aged 0-5 years with confirmed CZS from two states in northeastern Brazil. Interviews were conducted using focus groups. Content mapping followed the WHO's ICF linking rules. Three raters analysed the content using NVivo V.11. Results: Thirty-two caregivers participated in six focus groups, 88% were mothers with an average age of 30 years. Most children were male (59%) and all were level V (severe) to on the Gross Motor Function Classification System (GMFCS). Overall, 825 themes were mapped to 36 ICF categories. Although parents mentioned areas across all ICF domains, they reported that areas of mobility, eating and recreation were most relevant for them. In addition, environmental factors were highly identified as barriers, specifically services, policies and access to assistive devices. The most predominant facilitators within the environment were; immediate family support, kind relationships with therapists and support from the extended family. Conclusions: Although parents emphasised issues related to mobility, their greatest concerns involved environmental factors, such as access and quality of health and social services, systems and policies. These results reinforce the importance of including parents' perspectives when selecting or developing outcome measures for CZS.
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Burden of care in families of patients with early onset scoliosis

Background: Early onset scoliosis is a complex manifestation of a heterogenous group of disorders, often necessitating multiple medical and surgical interventions to address the spinal deformity and its accompanying comorbidities. Current literature documents decreases in the health-related quality of life of these patients; however, there is a distinct lack of published data examining the burden on their caregivers. The purpose of this study is to compare burden on caregivers of children with early onset scoliosis and those on caregivers of age-matched healthy peers. Methods: A multicenter retrospective cohort study was conducted by querying a national registry for patients with early onset scoliosis diagnosed before 10 years old whose caregivers completed the caregiver burden (CB) and financial burden (FB) domains of the Early Onset Scoliosis Questionnaire (EOSQ-24) before their treatment. Scores were compared by etiology and planned treatment. The study identified 503 patients categorized by etiology and eventual treatment type. Results: Overall, FB and CB scores for patients with early onset scoliosis were ≥10% worse than those of their age-matched peers, greater than the minimal clinically important difference for the EOSQ-24 (P < 0.001). Non-idiopathic patients' scores were ≥16% worse than age-matched peers regardless of future treatment (P < 0.001), while scores for idiopathic patients were varied. Idiopathic patients who went on to be observed had similar scores to national norms, but those who were managed either non-operatively (14% worse FB, 7% worse CB; P < 0.001) or operatively (25% worse FB, 27% worse CB; P > 0.05) had caregivers who reported greater burdens compared to those of healthy peers. Conclusions: This study suggests burdens on caregivers of patients with early onset scoliosis of nearly all etiologies are greater than those imposed on caregivers of healthy children, even before the additional stress of treatment is imposed. Level of evidence: II.

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The Transitional Experience of Family Caring for Their Child With a Tracheostomy

Aim: The purpose of this qualitative study was to describe the family experience of caring for their child with a tracheostomy due to a compromised airway during the transition from hospital to home, and to identify types of support that families request to be successful caregivers. Design and Methods: This study used a qualitative descriptive design with focus groups to answer semi-structured interview questions. The investigators followed basic content analysis to interpret descriptive data using three-person consensus. Results: Eighteen family members participated. Four themes emerged: "This is not the life I had planned: coming to accept the new reality;" "Don't make the hospital your home; don't make your home a hospital;" "Caregivers engage with providers that demonstrate competence, confidence, attentiveness, and patience;" and "Participants value the opportunity to give back and help others." Conclusions: Growth in the family caregiver role leads to personal transformation demonstrated by increased confidence, finding joy from their child, becoming an advocate for their child, and a resource for others. Family members described the transition to being 'in charge,' the relationship with the provider, and being able to advocate for getting the resources they needed in the home. Practice Implications: Relationships are as critical as teaching skills to families during hospitalization. Family members see considerable value in connecting with care providers. In addition, there is a desire to share their experience with other families that are beginning a similar journey. Participants requested a support approach that included competent providers, Web-based video education for skills training, family-to-family connection, and continued family group support after discharge.

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Parental fatigue before and after ventilation tube insertion in their children

Objective: To determine if there is a difference in fatigue for caregivers of children with otitis media pre and post ventilation tube insertion (VTI). Methods: Consecutive parents presenting with children at a pediatric otolaryngology practice at an academic medical center with recurrent otitis media who met criteria for VTI or who were following up within 6 weeks of VTI were surveyed with the Chalder Fatigue Scale (CFQ), a Visual Analogue Fatigue Scale (VAS-F), and demographic questions. Results: No significant demographic differences were found (P < 0.05) in the preop versus postop groups. 101 parents participated, 88 mothers and 13 fathers. 59.4% were married or cohabitating, 18.8% were single, 10.9% were divorced, and 10.9% declined to answer. 45.5% were aged 18-29 years, 50.1% were 30-39 years, 2.9% were 40+ years, 1.0% declined to answer. 53.0% were college graduates. 46 (45.5%) were preop and 55 (54.5%) were postop. There were no statistical differences between these groups for age, gender, marital status, education level or number or children in the household. Mean VAS-F, with 0 being worst fatigue and 10 being normal, was 5.256 in the preop group and 6.777 in the postop group (p < 0.001). Mean CFQ, with higher numbers meaning worse fatigue, was 15.749 in the preop group and 11.804 in the postop group (p = 0.002). Conclusion: Parental fatigue can have significant effects on the family. Fatigue in parents whose children have otitis media has not been previously described. VTI for recurrent otitis media in children is associated with improved fatigue in their parents.
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Emotional-Behavioral Disorders in Healthy Siblings of Children with Neurodevelopmental Disorders

Background and Objectives: Siblings of disabled children are more at risk of developing mental illnesses. More than 50 international studies show that about 8% of children and adolescents suffer from a mental disorder, which is almost always a source of difficulties both at the interpersonal level (in the family and with peers) and at school. Healthy siblings of children with disabilities are one of the groups most at risk for consequences in psychological health and well-being. As some authors suggest, siblings build their idea of "being people", in terms of character and personality, by continuously and daily confronting themselves with the theme of disability and a family context subjected to continuous stress. The following contribution aims to compare emotional-behavioral disorders in healthy siblings of children with autism spectrum disorder, in healthy siblings of children with Down's syndrome and in healthy siblings of children with typical development. Materials and Methods: The results involve 153 children from the region of Campania and their caregivers through the administration of the Strength and Difficulties Questionnaire. Results: From the data, it emerged that siblings of children with autism spectrum disorder and siblings of children with Down's syndrome have a greater emotional fragility, especially among male subjects. Conclusions: Our results require us to reflect on the clinical and policy measures needed to ensure the well-being of siblings of disabled children, mainly through appropriate sibling coping training.

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Chronic disease in children: Family experience in diagnostic reception

Objective: to know how the family experiences receiving the diagnosis of chronic disease of the child. Method: this is a descriptive and exploratory study, with a qualitative approach, with 15 family caregivers of children with chronic diseases. The technique used for the production of data was the semistructured interview, using a tape recorder. The responses were transcribed and analyzed according to the Thematic Analysis. Results: the family received the diagnosis of the child by the hospital doctor after childbirth or when the first symptoms of the disease appeared. Some were not informed, and the observation of signs of the disease was a source of stress and insecurity. Conclusion: receiving the diagnosis caused a strong reaction in the family that needed to modify their daily life to face the difficulties presented by the child and to find ways to take care of it effectively.

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Spiritual needs and communicating about death in nonreligious theistic families in pediatric palliative care: A qualitative study

Background: Spiritual support should be offered to all patients and their families regardless of their affiliated status with an organized religion. Aim: To understand nonreligious theistic parents’ spirituality and to explore how parents discuss death with their terminally ill children in mainland China. Design: Qualitative study. Setting/participants: This study was conducted in the hematology oncology center at Beijing Children’s Hospital. Participants in this study included 16 bereaved parents. Results: Participants described themselves as nonreligious but showed a tendency toward a particular religion. Parents sought religious support in the face of the life-threatening conditions that affected their child and regarded the religious belief as an important way to get psychological and spiritual comfort after experiencing the death of their child. Religious support could partially address parents’ spiritual needs. Parents’ spiritual needs still require other supports such as bereavement services, death education, and family support groups. Some parents stated that it was difficult to find a way to discuss death with their children. For patients who come from nonreligious theistic families, their understanding of death was more complex and may be related to atheism. Conclusion: Religious support could be an element of spiritual support for nonreligious theistic parents of terminally ill children. Multiple strategies including religious supports and nonreligious supports should be rationally integrated into spiritual support of nonreligious theistic family. Patient’s personal belief in death should be assessed before discussing death with them.

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Affiliate Stigma and Psychosocial Adaption Among Adolescents Who Have a Parent With Serious Mental Illness: Mediation Role of Family Cohesion

Aim: The current cross-sectional study examined the relationship between affiliate stigma and externalizing and internalizing problems by investigating the role of family cohesion among adolescents having a parent with serious mental illness (SMI). Method: One hundred sixty-four adolescents were recruited from two community mental health centers. Family cohesion, affiliate stigma, and adolescent internalizing and externalizing problems were assessed. Findings: A significant relationship was found between adolescent externalizing and internalizing problems and family cohesion (r = −0.462, p < 0.01 and r = −0.534, p < 0.001, respectively) and affiliate stigma (r = 0.512, p < 0.01 and r = 0.656, p < 0.001, respectively). Family cohesion partially mediated the relation between affiliate stigma and externalizing problems (Z = −4.97, p < 0.001) and fully mediated the relation between affiliate stigma and internalizing problems (Z = −5.18, p < 0.001). Conclusions: The current study highlights the need for effective interventions aimed at families to support parents with SMI in their parenting role and enhance family cohesion.

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The Long Road to Farewell: The Needs of Families With Dying Children

Background: Families of dying children are profoundly impacted by numerous interactions with health-care providers before, during, and after their child's death. However, there is a dearth of research on these families' direct, qualitative experiences with health-care providers. Methods: This study presents findings from interviews with 18 family members, predominantly parents, regarding their experiences with health-care providers during a child's terminal illness, from diagnosis to death. Findings: The importance of compassion emerged as a salient theme, manifested in myriad ways, and connected to participants' perception of caregiver presence in multiple domains. Families were likewise negatively affected by a wide variety of situations and behaviors that represented individual or institutional abandonment or nonpresence , and thus compounded the experience of loss. Discussion: Specifics and implications for practice are explored.

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Sleep disturbance and sleep insufficiency in primary caregivers and their children with cystic fibrosis

Background: Chronically ill children and their parents are at risk for sleep disorders and associated morbidity. Sleep disturbance prevalence and the relationships between parent and child sleep among children with CF are not well defined. Clarifying the presence and impact of sleep disturbances among pediatric CF patients and their parents could lead to improved health in this population. Methods: Cross-sectional study assessing parent-reported sleep in ninety-one CF patients (mean age 8.8 years; 53.8% female) and their primary caregivers. Sleep sufficiency determined using American Academy of Sleep Medicine guidelines; correlation coefficients computed for sleep problem domains; stepwise multiple linear regression determined predictive models for sleep duration. Results: Parents reported concerns about their own sleep and that of their children. Night waking and daytime sleepiness were most common in parents; prolonged sleep latency was most common for children. Most parents and children had inadequate sleep duration. School-age children had the highest frequencies of overall sleep concerns and inadequate sleep. Most parent and child sleep problem domains were significantly associated, with large effects for similar parent and child problems. Stepwise multiple linear regression demonstrated that CF caregiver/patient sleep duration was significantly predicted by insomnia symptoms. Conclusions: Many CF children and their parents experience sleep difficulties including inadequate sleep duration, with presence of sleep problems in many families whose children with CF had normal lung function. These data suggest that sleep health should be a CF Care Model component and should be a health care focus for families of children with other chronic illness.

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Falling through the gaps: how should HIV programmes respond to families that persistently deny treatment to children?

Introduction: Children living with HIV rely on adult caregivers for access to HIV testing and care, including clinical monitoring and adherence to treatment. Yet, many caregivers confront barriers to ensuring children's care, including fear of disclosure of the child's or the parents' HIV status, competing family demands, fluctuating care arrangements and broader structural factors such as entrenched poverty or alternative beliefs about HIV's aetiology and treatment. Thus, many children are "falling through the gaps" because their access to testing and care is mediated by guardians who appear unable or unwilling to facilitate it. These children are likely to suffer treatment failure or death due to their caregivers' recalcitrance. Discussion: This Commentary presents three cases from paediatric HIV services in Zimbabwe that highlight the complexities facing health care providers in providing HIV testing and care to children, and discusses the implications as a child's rights issue requiring both legal and programmatic responses. The cases provide examples of how disagreements between family members about appropriate care, conflicts between a child and caregiver and religious objections to medical treatment interrupt children's engagement with HIV services. In all three cases, no social or legal mechanisms were in place for health staff to intervene and prevent "loss to follow up." Conclusions: We suggest that conceptualizing this as a child's rights issue may be a useful way to raise the debate and move towards improved treatment access. Our cases reflect policy failure to facilitate access to children's HIV testing and treatment, and are likely to be similar across international settings. We propose sharing experiences and encouraging dialogue between health practitioners and global advocates for children's right to health to raise awareness that children are the bearers of rights even if they lack legal capacity, and that the failure of either the state or their caregiver to facilitate access to care is in fact a rights violation.

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Quality of life and challenges of family members of children with meningomyelocele

Objective: To identify the main challenges of the family of a child with meningomyelocele (MMC) and correlate the Zarit Burden Interview (ZBI) scale with the World Health Organization Quality of Life-BREF (WHOQOL - BREF). Methods: Questionnaires were sent through an online platform to groups of parents and caregivers of children with MMC. Four WHOQOL-BREF domains were evaluated: physical, psychological, social and environmental. Results: All correlations among the domains of the WHOQOL-BREF questionnaire with the Zarit Burden Interview (ZBI) scale were negative and significant with a higher magnitude value for ZBI x psychological domain with - 57.4% correlation (p < 0.001). Conclusion: The results of this study suggest the quality of life of mothers and caregivers of children with meningomyelocele is affected regarding functional capacity, emotional aspect, and mental health. Despite this, the participants present a positive view of their lives. The most common difficulties faced by caregivers were: performing bladder catheterization, providing general care, financial burden, and accessibility.

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The Impact of Childhood Health Conditions: Examining Experiences of the Family Around the Child

Background: Research has examined family functioning in relation to childhood chronic conditions; some findings suggest a detrimental impact of illness on functioning, others suggest no impact or instances of improved functioning. This review collated qualitative data, to understand the factors facilitating healthy functioning. Method: Four electronic databases were searched: Web of Science, Medline, CINAHL and Psych INFO and ten papers were identified. Results: A meta-ethnographic synthesis showed that families encounter a variety of potential stressors, such as distress following diagnosis. They manage these through various resources including contact with health services. The synthesis highlighted an appraisal process mediating the perception of stressors and resources. This process occurs on interconnected levels (individual, family and wider system) and it is this, rather than the specific stressors or resources encountered, that impacts functioning. Discussion: The challenges commonly encountered by families managing childhood chronic conditions can be experienced very differently depending on their systems of appraisal. This has clinical implications as health services should not only offer holistic support to families but regularly review how this support is perceived. Research could be extended to investigate which factors promote a more positive appraisal of challenging situations.

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Support for Fathers of Children With Heart Defects

Purpose: The purpose of the study was to illuminate the meanings of the lived experiences of support as disclosed by fathers of children with congenital heart defect (CHD). Narrative interviews were conducted individually with five fathers of children diagnosed with CHD. Methods: A phenomenological-hermeneutic method was used to interpret the verbatim transcribed narrative interviews. Findings: The meanings of the lived experiences of support for the fathers were identified in two themes and illustrate the fathers' feelings of being supported when being in a mutual relationship with others. A third theme illustrates the situation when support is absent. Conclusions: Our findings indicate that support for fathers of children with CHD might be best promoted by the philosophy of family-centered care.

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Translation and Testing of the Swedish Version of Iceland-Family Perceived Support Questionnaire With Parents of Children With Congenital Heart Defects

Background: There is a need for a suitable instrument for the Swedish context that could measure family members' perceptions of cognitive and emotional support received from nurses. The purpose of this study was to translate and test the psychometric properties of the Swedish version of the Iceland-Family Perceived Support Questionnaire (ICE-FPSQ) and, further, to report perceptions of support from nurses by family members of children with congenital heart defects (CHDs). Methods: A sample of 97 parents of children with CHD, living in Sweden, completed the Swedish translation of ICE-FPSQ. Findings: The Swedish version of ICE-FPSQ was found to be reliable and valid in this context. Parents scored perceived family support provided by nurses working in pediatric outpatient clinics as low, which suggests that nurses in these outpatient contexts in Sweden offered family nursing only sparingly.

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The experiences of family carers in the delivery of invasive clinical interventions for young people with complex intellectual disabilities: policy disconnect or policy opportunity?

Aims and Objectives: To explore the experiences of family carers in the delivery of invasive clinical interventions within community settings. Background: Many young people with intellectual disabilities present with complex health needs and require clinical interventions to sustain life. As the population lives into older age there is growing demand for the delivery of these interventions within the community setting. Design: An interpretivist qualitative design. Methods: Ten family carers of children with intellectual disabilities and complex care needs requiring invasive clinical interventions participated in semi-structured interviews. Results: There are barriers identified regarding the delivery of invasive clinical interventions in the home setting by social care support workers. These include a reluctance to carry out invasive clinical interventions both for family carers and staff, anxiety, a lack of knowledge and training and difficulties in recruiting appropriate staff. Conclusions: There needs to be strategic policy developments focusing on this population who are cared for in the community and require invasive clinical interventions. Relevance to Clinical Practice: Registered Nurses have a key role in educating and preparing families and social care support workers to safely deliver invasive clinical interventions in community settings for both children and adults with intellectual disabilities.

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The social ecology of aggression in youths with autism spectrum disorder

Aim: This study examined the social-ecological correlates of aggressive behavior in 120 youths with autism spectrum disorder. Methods: Youths were divided into three groups based on caregiver reports of the youth's aggressive acts: youths who engaged in acts of both physical and verbal aggression, youths who engaged only in acts of physical aggression, and nonaggressive youths. Caregivers and youths completed self-report instruments and behavior rating inventories that assessed youth individual functioning, family relations, and extrafamilial factors (i.e., peer relations, academic performance). Results: Results showed that youths who engaged in both verbal and physical aggression were characterized by poor sleep quality and victimization by peers, and their caregivers evidenced high levels of distress and avoidant coping. In contrast, youths who were physically but not verbally aggressive were distinguished by difficulties in social interaction and communication. In general, each group of youths who were aggressive experienced more problems with repetitive behaviors, family relations, and academic performance than did their nonaggressive counterparts. The implications of these findings for theory, research, and treatment are discussed.

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Understanding carers' lived experience of stigma: the voice of families with a child on the autism spectrum

Background: Existing research suggests that there are several unique challenges associated with caring for a child on the autism spectrum. Despite a growing evidence base regarding autism spectrum disorders and their increasing prevalence, children on the autism spectrum and their families continue to perceive stigmatisation from various sources throughout the community. These perceptions of stigma can profoundly impact the quality of life of these children and their carers alike. This exploratory study sought to investigate carers' perceptions of stigma in caring for a child with high functioning autism. Methods: Fifteen carers from Sydney and the South Coast regions of New South Wales, Australia, participated in semi-structured interviews regarding their caring experiences and any perceived encounters with stigma. Findings: Four domains of stigmatising experiences were identified: (i) lack of knowledge, (ii) judgement, (iii) rejection and (iv) lack of support. These domains were each reported to exist in four main contexts: (i) school, (ii) public, (iii) family and (iv) friends. These domains and contexts established a framework which provided a detailed account of how and where carers felt stigmatised, including the suggestion of a stigmatising pathway through the four domains. The main contexts in which stigma was perceived also appeared to be related, with those carers who experienced stigma in one context being more likely to report similar experiences in other contexts. Conclusions: Any attempts to empower carers in the face of stigmatisation should therefore consider each of these domains, the pathway that connects them and the relationship between different social contexts. Through identifying this pathway, supportive services can be acutely aware of how carers may perceive potentially stigmatising experiences and therefore provide appropriate interventions or support for the relevant stage of the pathway.

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The rural mother's experience of caring for a child with a chronic health condition: An integrative review

Aims and objectives: To identify and review the literature on rural mothers’ experiences in caring for a child with a chronic health condition. Background: Families living with a child who has a chronic health condition experience many challenges; these are often amplified for families living in rural areas, where issues such as the distance from services add further challenges the family must manage. Like many children, rural children with chronic health conditions are primarily cared for by their mothers. The additional strain of geography creates its own unique experiences for mothers who need to access the high‐quality care that their child requires. Design: Integrative literature review using the Equator PRISMA guidelines.MethodsA search of databases; Cochrane, CINAHL, Ovid, PubMed, ProQuest Health and Medicine, Informit and Scopus for studies published between 2005–2016 using an integrative review approach. A total of 1,484 studies were identified with an additional six studies found through snowballing. The search resulted in seven studies being meeting the inclusion criteria after using the Critical Appraisal Skills Programme. Results: Data from the seven articles were analysed, and the mothers’ experiences were synthesised into five themes: “struggling for resources,” “barriers in accessing services,” “strain of decision‐making,” “mother's physical and emotional breakdown” and “the daily management of family activities”. These five themes formed the basis of this article. Conclusions: The findings indicate that mothers from rural areas face additional barriers related to their rurality, including transportation difficulties, socioeconomic status and social isolation, and are challenged by limited access to specialty medical services, educators and allied health professionals. The literature review outcome will assist in informing nursing practice through identifying and allocating resources to reduce these barriers; rural mother experience will assist in enabling the child to reach their full developmental potential.Relevance to clinical practiceThere is a need for health professionals to understand the challenges and barriers rural mothers face in accessing services. Nurses can assist rural mothers to navigate and access the appropriate services in order to reduce health inequity, increase accessibility to services and reduce rural disadvantage for their child. Nurses and health professionals are in an ideal position to develop future models of care that optimise health outcomes and enable equity and access to services for rural children with chronic conditions similar to those experienced by their urban counterparts.

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“The child’s got a complete circle around him”. The care of younger children (5–11 years) with CFS/ME. A qualitative study comparing families’, teachers’ and clinicians’ perspectives’

Background: Society needs to improve the care of children with complex needs. Guidelines recommend integrating care across health and educational settings, however, there is little research on whether this is achieved or how this can be done in practice. Our aim was to address this gap by examining how the care of children (aged 5–11 years) with Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis (CFS/ME) is shared across home, education and health settings, in order to generate recommendations for integrating care. Methods: We undertook semi‐structured interviews with families (22 participants), teachers (11 participants) and healthcare providers (9 participants), analysing the data thematically and comparatively. Our analysis of the data was informed by a socio‐ecological perspective as we sought to understand the complexity of the relationships and systems around the child. Findings: The first theme focuses on the child (“individual level”); child‐centred care is seen as essential whilst acknowledging that the child has limited capacity to manage their own care. The second theme presents the distinct roles of parents, teachers and clinicians (“interpersonal and organisational levels”). The third describes how these three levels interact in the management of the child's care, in the context of the health and education systems and policies (“policy levels”). The fourth explores optimal ways to integrate care across home, school and clinical settings. Conclusions: In conclusion, there is opportunity to support a child with complex health needs by targeting the systems around the child; parents, teachers and clinicians, as well as education and health policy that can enable shared‐care. Involving schools in assessment, communicating diagnosis across settings and using a stepped‐care approach to integrated care may be beneficial. Further work is needed to explore these recommendations, with attention to the policy factors that may act as barriers and enablers.

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Treating Children with ASD: The Perspective of Caregivers

Purpose: Treatment of Autism Spectrum Disorders (ASD) is challenging. Parents/caregivers' perspective on the effectiveness of therapies and services available to their children is important but neglected in the literature on ASD.  This study investigated such perspective through questionnaire-guided interviews with a group of parents in the province of Manitoba (Canada). A secondary objective of the study was to explore how health care professionals and specifically pharmacists can assist in providing better care to children with ASD.  Methods: Informed consent was obtained from all participants. Data on diagnoses and prescribed medications were collected from medical charts. Parents/caregivers completed questionnaires during interviews scheduled at their convenience. Specific questions were asked to gather caregivers/parents' perspectives on the effectiveness of medications and non-pharmacological interventions in controlling symptoms experienced by their children.  Information on access to education and health services was also assessed. Common themes were identified using thematic analysis. Results: All children attended school, 88% were males, 50% experienced eating/sleeping difficulties; 69% reported Attention Deficit Hyperactivity Disorder comorbidity. Risperidone was reported to be effective in controlling aggressive behaviours. Methylphenidate and aripiprazole were often discontinued. Melatonin and occupational therapy services were said to be very useful. Access to behavioural therapy was often limited. Parents were concerned about lack of trained professionals in schools, limited understanding of their children's needs, and uncertainty for the future. Conclusions: Better education and awareness are necessary to help ASD children and their families. Pharmacists should explore opportunities to provide better services.
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Building bridges from hospital to home: Understanding the transition experience for the newly diagnosed pediatric oncology patient

Background: Caregivers of pediatric oncology patients are expected to understand and adhere to a complex medical plan of care while at home; yet little is known about how to assess and evaluate the caregivers' abilities to adequately meet these demands. The purpose of this study was to describe the issues and daily challenges faced by caregivers as they transition from hospital to home after their child's cancer diagnosis. Methods: Patients and caregivers received a home visit by an expert pediatric oncology nurse within 72 hours postdischarge after initial diagnosis. The nursing narrative notes from these visits were analyzed using content analysis. Findings: Four explanatory themes emerged; (1) 'We're doing okay,' (2) 'This isn't going so well,' (3) 'I could use a little help with this,' and (4) 'An RN in the house makes you feel safe and know what is correct.' These analyses revealed many caregivers achieved mastery of caring for the child at home; however, an overwhelming majority of caregivers expressed questions or concerns to the nurse during the home visit, even those achieving mastery of care. A home visit by an expert pediatric oncology nurse assisted the caregiver in transitioning to caring for the child at home. Conclusions: Such programs should be considered when planning transition programs from hospital to home.

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Employed Parents of Children Receiving Mental Health Services: Caregiver Strain and Work-Life Integration

Methods: Applying conservation of resources theory, we examined employment engagement (i.e., months of employment, hours worked per week, days of work missed due to the child's challenges) among caregivers of children and youth entering community-based mental health service systems. The sample included 3,569 caregivers who were employed at some point in the previous 6 months. Variables associated with employment included family interactions, number of children in the household, caregiver age and gender, and caregiver race and ethnicity. Findings: The findings suggest that caregivers' appraisals of their caregiving experiences were stronger predictors of work engagement than was child symptom severity. Conclusions: We concluded that supporting families as they care for children with emotional and behavioral disorders could reduce caregiver strain, thereby improving employment outcomes
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Impact of caring for children with medical complexity on parents' employment and time

Objectives: This study examined parental care of children with medical complexity (CMC) in terms of time spent providing care and impacts on employment and career.

Methods: We recruited caregivers of 153 CMC in a tertiary center complex care program to participate in a cross-sectional mail survey.

Results: Among 95 respondents (62% of eligible), 75% of primary caregivers and 53% of spouses experienced employment losses and one-third experienced negative career outcomes attributed to care for CMC. On weekdays during the day (6 a.m.-6 p.m.), 55% of caregivers provided care for 8 hours or more. On weekday evenings and nights, half of caregivers provided care for at least 6 hours, including 53% of caregivers who provided care from midnight to 6 a.m.; these proportions were higher on weekends. Compared to employed caregivers, non-employed caregivers reported spending more time providing care on weekdays (P = .001), but less time providing care on weekend evenings (P = .019). On weekend days and weekday evenings/nights, employment was not associated with duration of care.

Conclusions: Caring for CMC frequently impacts employment and careers of caregivers and spouses. Employed and non-employed caregivers invest substantial time in care. Research on CMC should include indirect costs of family care in terms of employment, income, and time. 

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The need to support caregivers during pediatric bone marrow transplantation (BMT): A case report

Objective: Pediatric bone marrow transplants represent a medically stressful, potentially traumatic experience for children and caregivers, and psychological support for parental caregivers is paramount to their long-term well-being. However, many medical centers do not have protocols in place to sustain caregiver well-being during these distressing experiences.

Method: We report on a case of a 10-month-old infant with Wiskott Aldrich Syndrome who was hospitalized for bone marrow transplantation.Result:We describe the significant burden that fell upon caregivers during and after a bone marrow transplantation.

Significance of results: This case helped guide our suggestions to improve care for caregivers. Several logistical hurdles could be overcome to alleviate some of these burdens. We suggest that a child psychologist or psychiatrist should be on patient care teams and be attentive to parental stress, impairments, or impediments to self-care, and signs of emergency of mental illness in this setting of medical trauma. Additionally, promotion of sleep hygiene and linkage to support systems can maximize resiliency. Finally, we believe that hospital administrators should partner with clinicians to facilitate routine support during highly stressful transitions of care.

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Measures for social support in raising a child with a disability: A scoping review

Background: The benefits of social support for caregivers raising a child with a disability have been identified in the literature. These benefits include the improvement of the mental and physical well‐being of the caregivers, improvement in caregiving styles, and overall improvement of family quality of life. Whilst the benefits of social support are widely reported, the definitions and measures of social support in the literature are varied.

Method: A scoping review was therefore undertaken to identify and describe the tools used to measure social support of primary caregivers (i.e., parents or grandparents) raising a child (0–18 years) with a congenital disability in international studies. Ten databases were systematically searched.

Results: Sixteen studies were included in the review, from which nine social support measures were identified. Attributes of the measures were searched from their referenced papers and described in terms of their reported psychometric properties.

Conclusions: Through the identification of the measures of social support and ensuring its accurate measurement, direction can be provided for intervention by allowing professionals to detect and address social support available. Future recommendations for research are made. 

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Parent-child interactions and childhood OCD: Comparing OCD families with other clinical and non-clinical families

Background and objectives: Family factors, such as family accommodation and parent-child characteristics, are hypothesised as important maintaining factors in paediatric OCD. There is limited research assessing parent and child behaviour amongst young people with OCD during family interactions. Thus, the current study sought to further explore parent-child interaction variables in OCD, using an observational design with three groups.

Methods: 23 young people with OCD, 30 young people with other anxiety disorders, and 23 young people with no clinical problems, along with their primary caregiver, completed a brief problem-solving discussion task designed to assess family interaction variables. Groups were compared on observer-rated and self-rated parent and child behaviours. It was expected that OCD families would differ from both anxious and nonclinical families on some behavioural dimensions, for example, rating lower on warmth, confidence, and positive problem solving.

Results: Results showed that young people in the OCD group could be differentiated from young people in the clinical and nonclinical comparison groups based on observed behaviour. Young people in the OCD group showed less warmth during their interactions and less confidence in their ability to solve the problem. These children and adolescents also had higher levels of doubt and withdrawal during interactions with their parent. Interestingly, parent behaviour did not differ between the groups, suggesting that parent behaviours are a less reliable indicator of OCD symptomatology.

Conclusions: During family interactions, young people with OCD behave in a different way to young people with another anxiety disorder as well as young people with no diagnosis. These findings provide interesting and important exploratory information relating to observed parent and child behaviour across different clinical and nonclinical groups. Limitations of this study are addressed and directions for future research are discussed.

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Quality of life in caregivers of young children with Prader-Willi syndrome

Background: This study aimed to measure quality of life (QOL) in primary caregivers of young childrenwith Prader-Willi syndrome (PWS).

Methods: The caregivers of 32 children aged from 6.1 to 71.2 months completed the Chinese version of the World Health Organization Quality of Life-BREF (WHOQOL-BREF). We also evaluated the social adaption capacity of these children with Infants-Junior Middle School Students' Social-Life Abilities Scale. Correlation test was used to explore the related factors to caregivers' QOL.

Results: Caregivers of young children with PWS had significantly lower QOL. The correlation analyses revealed that caregivers' QOL was lower in children with young age, combined diseases or symptoms or poor social adaption, or caregivers having concerns about the child.

Conclusions: Rearing a chilld with PWS may lead to decreased QOL. Psychological status of caregivers should be highlighted and social support should be given to families with PWS children.

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Transition experiences between hospital‐ and home‐care for parents of children with hypoplastic left heart syndrome

Purpose: Children with hypoplastic left heart syndrome (HLHS) experience numerous vulnerabilities during transitions from hospital to home during their first year of life. This paper examines the parents’ responses to the situations they experience during the initial interstage transition as described through illness blogs.

Design and methods: A qualitative descriptive design through inductive theme development using thematic analysis was performed for this study. Text data were used from publically available blogs written by parents of HLHS children on their feelings and experiences during transitions between hospital‐ and home‐care during the interstage period.

Results: Six blogs were analyzed. Overall, the lack of difference in normalcy for these parents and their families was apparent. Major themes included: thoughts and feelings when discharged from the hospital, difficulties with hospital readmissions, protecting their child from infection, and developing a support system.

Conclusions: Parents looked forward to going home and learned all they could about properly caring for their child before going home. They were disappointed and frustrated when returning to the hospital for either emergency or scheduled admissions and were not prepared to see their child in the intensive care unit environment again. Many parents isolated themselves and avoided the hospital as much as possible to avoid their child developing an infection. All parents had support systems through family and/or friends and found an unexpected sense of support through their blog families.

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Depression, anxiety and quality of life impairment in parents of children with functional lower urinary tract dysfunction

Background: Lower urinary tract dysfunction (LUTD) is a common clinical condition in children, frequently associated with emotional issues both among the patients and their families. The objective of the present study was to measure depressive and anxious symptoms and quality of life (QoL) in parents of LUTD patients.

Methods: This cross-sectional study applied Beck Depression and Anxiety Inventories and WHOQOL-Bref to 88 caregivers of children with LUTD followed at a tertiary care center. The prevalence of mental disorders in children and adolescents was assessed using the Child Behavior Check List (CBCL 6-18) answered by their caregivers. The association of clinical features and emotional aspects related to the caregivers' quality of life was evaluated through non-parametric correlation (Spearman) and multiple linear regression analysis.

Results: Most of the caregivers were mothers (88%), with a mean age of 41.5 (SD 8.7 years), 67% of them married or in a stable union, and 38% had not completed elementary school. Considering 19 as the cutoff point for the Beck scale, 44% of the sample had a clinical score for depressive symptoms and 43% for anxious symptoms. According to the parents' report, 56% of children with LUTD had a clinical score for behavioral problems in CBCL. Parents' QoL was impaired, and the predictors of poor QoL were the age of the patients and presence of depressive/anxious symptoms in caregivers. Parents' depression/anxiety symptoms and poor QoL significantly correlated with behavioral problems in their children. The CBCL total problems score correlated both to depression (r = 0.38, p < 0.01) and to anxiety in parents (r = 0.49, p < 0.01) (Figure).

Conclusions: These findings indicate a possible emotional impact of LUTD in patients' caregivers. Our study suggests that an approach to the family of LUTD patients' may be an important therapeutic resource for an effective clinical control of this condition. 

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Assessing the Impact of Atopic Dermatitis on the Patients' Parents with the Visual Instrument 'Caregiver-PRISM'

Background: There is a need to improve the quality of communication between clinicians and parents of young patients with atopic eczema (AE).

Objective: To create a tool to measure the suffering that caregivers experience in association with their child's AE (Caregiver Pictorial Representation of Illness and Self-Measure, Caregiver-PRISM), assess the validity and reliability, and identify factors associated with caregiver suffering.

Methods: Caregiver-PRISM was administered to 45 parents of patients from an AE outpatient service (Padua, Italy).

Results: Caregiver-PRISM had a good test-retest reliability (r = 0.85; t7 = 4.13; p < 0.05), content validity and construct validity when used in parents of AE children. Parents with a less positive family affective climate, higher education, or with children following a diet experienced higher suffering associated with their child's AE, demonstrated by lower Caregiver-PRISM scores (p < 0.05).

Conclusion: Our results support the use of Caregiver-PRISM in parents of AE patients to assess suffering associated with patients' illness. 

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The needs and service preferences of caregivers of youth with mental health and/or addictions concerns

Background: Caregivers experience significant strains as a result of navigating the complex mental health and/or addiction (MHA) system for their youth with MHA issues. We examined the characteristics of Ontario families with youth with MHA issues and their service needs.

Methods: A cross-sectional survey study investigated the characteristics and service needs of families with youth with MHA issues across the province of Ontario, Canada. A total of 840 caregivers were recruited.

Results: 259 participants (Mage = 45.94, SD = 7.11) identified as caregiving for at least one youth with MHA issues. The majority of the participants were female (70.7%), married (73.4%), and completed at least some college/Bachelor degree (59.1%). The mean age of youth was 16.72 years (SD = 5.33) and the most frequently reported diagnoses were Depression (30.1%), ADHD (27.8%) and Generalized Anxiety Disorder (21.2%). Regression results demonstrated that presently accessing services, presently seeking services, and higher levels of barriers MHA services were significantly predictive of identifying navigation as helpful for finding appropriate MHA services (2(7) = 28.69, p < .001, Nagelkerke R2 = .16). Furthermore, presently accessing services was significantly predictive of identifying case management as helpful (2(7) = 29.59, p < .001, Nagelkerke R2 = .156), and of identifying a primary healthcare provider as helpful (2(7) = 38.75, p < .001, Nagelkerke R2 = .197) for finding appropriate MHA services.

Conclusion: Identifying the nature and extent of youth MHA issues, service needs, and family preferences can inform the development of services that address families' needs and lend vital support for accessing services within a complex system. 

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Factors Affecting the Health of Caregivers of Children Who Have an Intellectual/Developmental Disability

There are a growing number of children with an ID/developmental disability. As well, there is evidence of poor health in the caregivers of these children. This article describes a narrative review of the literature regarding the mental and physical health of caregivers of children with ID/developmental disability. The review examined 162 papers. Twenty‐three different factors were identified that may have an effect on the health of these caregivers. Social determinants, individual caregiver variables, characteristics of the child with the disability, family characteristics, and support factors can all affect caregiver health. These variables are inter‐related and illustrate the need to account for complexity when studying the health of caregivers of children with ID/developmental disability.

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Psychosocial recommendations for the care of children and adults with epidermolysis bullosa and their family: evidence based guidelines

Epidermolysis Bullosa (EB) is a group of rare genetic disorders resulting in skin fragility and other symptoms. Commissioned by DEBRA International and funded by DEBRA Norway, this evidence-bases guideline provides recommendations to optimise psychosocial wellbeing in EB.An international multidisciplinary panel of social and health care professionals (HCP) and people living with EB was formed. A systematic international literature review was conducted by the panel following the Scottish Intercollegiate Guidelines Network (SIGN) methodology. The resulting papers underwent systematic selection and critique processes. Included papers were allocated to 6 different outcome groups to allow data synthesis and exploration: quality of life, coping, family, wellbeing, access to HCP and pain. Based on the evidence in those papers, recommendations were made for individuals living with EB, family and caregivers and HCP working in the field.Few studies have investigated interventions and which factors lead to better outcomes, but general recommendations can be made. EB is a complex disease impacting enormously on every aspect of psychosocial life. People and families living with EB need access to multidisciplinary support, including psychological guidance, in order to improve quality of life and psychosocial wellbeing. Interventions should stimulate social participation to prevent isolation. People with EB and their families should be able to access a supportive network. HCP should be well supported and educated about the complexity of EB. They should work collaboratively with those around the individual with EB (e.g. schools, employers etc.) to provide psychosocial opportunity and care.Attention should be paid to the psychosocial impact of EB as well as physical needs. Directions for research are indicated. 

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Care transition interventions for children with asthma in the emergency department

The emergency department (ED) is a critical point of identification and treatment for some of the most high-risk children with asthma. This review summarizes the evidence regarding care transition interventions originating in the ED for children with uncontrolled asthma, with a focus on care coordination and self-management education. Although many interventions on care transition for pediatric asthma have been tested, only a few were actually conducted in the ED setting. Most of these targeted both care coordination and self-management education but ultimately did not improve attendance at follow-up appointments with primary care providers, improve asthma control, or reduce health care utilization. Conducting any ED-based intervention in the current environment is challenging because of the many demands on ED providers and staff, poor communication within and outside of the medical sector, and caregiver/patient burden. The evidence to date suggests that ED care transition interventions should consider expanding beyond the ED to bridge the multiple sectors children with asthma navigate, including health care settings, homes, schools, and community spaces. Patient-centered approaches may also be important to ensure adequate intervention design, enrollment, retention, and evaluation of outcomes important to children and their families. 

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Unmet needs in PKU and the disease impact on the day-to-day lives in Brazil: Results from a survey with 228 patients and their caregivers

Background: Accumulation of phenylalanine (Phe) due to deficiency in the enzyme phenylalanine hydroxylase (PAH), responsible for the conversion of Phe into tyrosine leads to Phenylketonuria (PKU), a rare autosomal recessive inborn error of metabolism with a mean prevalence of approximately 1:10,000 to 1:15,000 newborns. Physical, neurocognitive and psychiatric symptoms include neurodevelopmental disorder as intellectual disability and autism spectrum disorder. The most common treatments such as low-Phe diet and supplements may decrease blood Phe concentrations, but neuropsychological, behavioral and social issues still occur in some patients. This study aimed to better understand (i) the Brazilian population's knowledge about newborn screening (NBS), the main diagnostic method for PKU, as well as (ii) the impacts of phenylketonuria in the daily lives of patients and parents.

Methods: Two surveys in Real World Data format gathering of Brazilian residents by online questionnaires with (i) 1000 parents of children up to 5 years old between March and April 2019; (ii) 228 PKU patients and caregivers in March 2019. The survey was conducted in partnership with Abril Publisher and two Brazilian patient associations: Metabolic Mothers and SAFE Brasil, for families with rare diseases and PKU patients, respectively.

Results: The first questionnaire shows that 93% of parents recognize the importance of NBS and 92% report that their children have undergone the test. Still, two out of ten participants did not know what the exam is or what it is for. From the second questionnaire nine out of ten patients had their PKU diagnosis by NBS. Although strict dietary controls for PKU were claimed by 44% of respondents from second questionnaire, 55% assume not following all nutritionist recommendations and 52% did not maintain routinely Phe control levels. In addition, 53% said they had high spending on medical appointments, therapies and purchase of special foods.

Conclusions: Despite the lack of understanding, the awareness of NBS importance is present in the studied population. The early diagnosis of most PKU patients in the study corroborates with neonatal screening central role of PKU early detection. The difficulty in adhering to dietary adjustments and the possibility that current and new therapeutic strategies other than diet could be determinant to achieve the recommended Phe levels. 

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The Effects of Caring for Young Children with Developmental Disabilities on Mothers’ Health and Healthcare Use: Analysis of Primary Care Data in the Born in Bradford Cohort

We explored the association between caregiving for preschool children with developmental disabilities and maternal health and healthcare use using linked primary care and Born in Bradford birth cohort data. Adjusting for prenatal health, healthcare use and socioeconomic status, mothers who were caregivers were more likely than other mothers to have symptoms of psychological distress (odds ratio 1.24; 95% CI 1.01, 1.53), exhaustion (1.42; 1.12, 1.80) and possibly head and musculoskeletal pain (1.18; 0.97, 1.43). Despite the higher prevalence of symptoms, they did not access healthcare services more and may seek healthcare for psychological distress less often (0.64; 0.40, 1.02). In general, socioeconomic disadvantage was associated with worse health. Pakistani ethnicity (versus white British) and prenatal consultation were strongly associated with higher postnatal consultation rates. Prenatal ill health, healthcare use and socioeconomic status are important factors in the detection of postnatal ill health via primary care services. If caregiver burden and the risk of under-detecting (and thus under treating) caregiver ill health is not addressed during the preschool period health inequalities between caregivers and other mothers and their families may persist and grow. The health of mothers of young disabled children, in particular their unmet health needs, warrants attention in research and clinical practice.

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Concerns and Needs of Support Among Guardians of Children on Cancer Treatment in Dar es Salaam: A Qualitative Study

Background: Cancer in children in Tanzania is a concerning health issue, yet there is a shortage of information about the experiences of the guardians of children who receive cancer treatment. Objective: To explore concerns and needs of support among guardians of children on cancer treatment in Dar es Salaam, Tanzania.

Method: Using a qualitative design, 3 focus group discussions were held with 22 guardians of children aged 9 to 17 years. Guardians were recruited from Muhimbili National Hospital, Dar es Salaam, where their children were receiving cancer treatment. Data were analyzed using thematic content analysis.

Results: Guardians experienced several issues during the initial stages of their child's cancer treatment, including the process of seeking a diagnosis, and experiences with care at the peripheral (regional) hospitals and national hospital. They also shared what they felt would lessen their difficult experiences. Seven themes emerged in this study: financial concerns, emotional concerns, barriers to cancer care, need for improved cancer care, need for information, need for tangible support, and gratitude and hope.

Conclusion: Guardians of children with cancer experience challenges during initial stages when seeking a diagnosis and have concerns and needs related to cancer care and treatment. Implications for practice: Improvements are needed regarding care at regional hospitals, the cancer diagnosis, and the recognition of early signs of cancer and quick referral to diagnostic centers, compassionate caring behaviors by healthcare workers, budgetary support from the government to meet the medication supply demands, and meeting stakeholders' support needs.

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Perceived Caregiver Stress, Coping, and Quality of Life of Older Ugandan Grandparent-Caregivers

With the continued loss of lives due to HIV/AIDS in sub-Saharan Africa, grandparents bear the stress of caring for children affected by the epidemic, often with very limited resources. Yet, despite the acknowledgement that these older adults serve as the backbone and safety net of the African family in this HIV/AIDS era, very limited research has focused on investigating the specific health outcomes of caregivers in this region and how these changes in health status impact the overall quality of life of caregivers. This study highlights the stress perceived by Ugandan grandparent-caregivers, its impact on their overall quality of life, and the coping strategies they use to manage their stress. Thirty-two grandparent-caregivers (age 50 years and older) were recruited from urban and rural areas in Uganda and individually interviewed in 2016. Using constructivist grounded theory as the qualitative methodology, the narratives generated from the semi-structured, one-on-one interviews were audio-recorded, transcribed, and analyzed using both open and axial coding as well as reflexive and analytic memoing. Descriptions of caregiver stress (physical, emotional, financial, and social) were reported. Additionally, study findings uniquely explore the impact of the perceived stress on the grandparents' overall quality of life. Study findings provide a foundation upon which clinicians, researchers, and policy-makers can design and implement effective interventions to improve the health and quality of life of grandparent-caregivers in sub-Saharan Africa.

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Care coordination for children with medical complexity in Japan: Caregivers' perspectives

Background: Little is known about the provision of care coordination to children with medical complexity (CMC) and their families in Japan. The aim of this study was to describe provision of care coordination and explore the factors associated with quality of care coordination for Japanese CMC and their families.

Methods: We used an exploratory cross-sectional study design. Participants were recruited at a children's hospital located in one prefecture, Japan. Primary caregivers raising children aged between <1 and 20 years and receiving reimbursements for their home-based medical care at a children's hospital were eligible to participants in this study. The study examined the relationship between parents' ratings of care coordination as 'adequate,' 'inadequate' or 'not received' and characteristics of children, parents, and families.

Results: Ninety-nine parents caring for CMC were included in the analysis. Of those, 22.2% reported their child had a care coordinator. Caregivers were divided into three groups depending on the quality of care coordination: Group 1 reported adequate care coordination; Group 2 reported inadequate care coordination; and Group 3 had no need for care coordination. We compared the socio-demographics of children, parents and families, their service use and the health-related quality of life (HR-QOL) and caregiver burden scores of parents across the three groups. The parents' free time, access to timely care for children and service satisfaction were positively associated with adequate care coordination for CMC and their families.

Conclusions: Providing adequate care coordination for CMC and their families is essential for access to timely services and more positive psychological health of parents. High quality care coordination for CMC and their families is urgently needed in Japan.

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An intensive family-based treatment guided intervention for medically hospitalized youth with anorexia nervosa: Parental self-efficacy and weight-related outcomes

Recent studies suggest the efficacy of family-based treatment (FBT) among youth with anorexia nervosa (AN) in intensive treatment settings. This study aimed to assess weight outcomes in youth who received an FBT intervention while hospitalized for medical complications of AN. Parental self-efficacy among participating caregivers was also measured. Post-discharge weights of 49 participants were compared with weights of 44 youth who were hospitalized prior to the provision of the FBT intervention. Youth who received the FBT intervention gained significantly more weight than youth in the retrospective treatment as usual group at 3 and 6 months following discharge. FBT youth were 2.84 times more likely than retrospective treatment as usual youth to achieve at least 95% of treatment goal weight at 6 months post-discharge. Finally, parental self-efficacy significantly increased in caregivers who participated in the FBT intervention. Findings provided preliminary support for the provision of FBT to medically hospitalized youth with AN. 

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Caring for Children Diagnosed with Autism Spectrum Disorder: Caregivers' Experiences

Although awareness about autism has increased in developed countries, more so than in developing countries, autism spectrum disorder (ASD) remains poorly understood by most South Africans, especially those in remote areas and in areas where research is limited. Furthermore, intervention services are often scarce or not available due to lack of knowledge amongst healthcare professionals. The current study aimed to explore caregivers' experiences of children with ASD in the Ehlanzeni District, Mpumalanga, South Africa. The study adopted a qualitative approach, and data was collected using semi-structured interviews, in which an interview guide was used. Twelve participants were selected purposively from the three different schools in the Ehlanzeni District and interviewed for the study. The data was analysed using thematic content analysis. The study adhered to ethical considerations. The findings of the study indicated that caregivers of children diagnosed with ASD experienced psychological stress; social stress; financial burden; lack of family support; and reported unavailability and accessibility of services. Therefore, information regarding a range of inexpensive interventions and educational programmes should be available for caregivers in order to reduce their psychological and social stress. Medicines should be available and accessible within the district to avoid caregivers having to travel long hours to access them, and to reduce their financial burden. Caregivers' support groups should also be established.

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Exploring neurodevelopmental outcome measures used in children with cerebral malaria: the perspectives of caregivers and health workers in Malawi

Background: Progress has been made in tackling malaria however there are still over 207 million cases worldwide, the majority in children. As survival rates improve, numbers of children with long-term neurodisabling sequelae are likely to increase. Most outcome studies in cerebral malaria (CM) have focused only on body function and structure and less on outcomes within the broader framework of the International Classification of Functioning and Disability (ICF). The aim of this study was to utilise qualitative methods to identify relevant clinical outcomes in CM to support formulation of a core outcome set relevant to CM and other acquired brain injuries for use in future clinical trials.

Methods: In depth interviews with parent/caregivers (CGs) of children with/without previous CM (N = 19), and in depth interviews with health professionals (N = 18) involved in their care were conducted in community and clinical settings in and around Blantyre, Malawi. Interviews were audio taped, transcribed, translated and a thematic content analysis was conducted. Themes were categorised and placed firstly in an iterative framework derived from the data but then within the ICF framework.

Results: Outcomes perceived as important to carers and professionals fulfilled each level of the ICF. These included impairment in body function and structure (contractures, impaired mobility, visual problems, seizures, cognitive function and feeding); activity and participation outcomes (learning, self-care, relationships in school, play and activities of daily living). Other issues emerging included the social and emotional implications of CM on the family, and balancing care of children with neurodisability with demands of daily life, financial pressures, and child protection. Themes of stigma and discrimination were described; these were perceived to negatively influence care, participation and integration of carer and child into the community.

Conclusions: Outcomes considered important for parents/caregivers and professionals working with children post CM cross all aspects of the ICF framework (impairment, functioning and participation). Outcomes emphasised by families and carers in cross-cultural settings must be given adequate attention when conducting clinical studies in these settings.

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Occupying 'in-hospitable' spaces: Parental/primary-caregiver perceptions of the impact of repeated hospitalisation in children under two years of age

The experience of having a child hospitalised is stressful and disrupts families in myriad ways; however, the experiences of parents/caregivers who encounter repeated admissions of a child with acute lower respiratory infections are under-researched. This project aims to explore these experiences, from a qualitative perspective, using the philosophical tenets of reflective lifeworld research. The research included 14 face-to-face interviews with parents, grandparents, or primary caregivers, of children who, whilst under two years of age, were admitted to hospital multiple times with a lower respiratory infection diagnosis. Many of the participants were from Māori or Samoan ethnic backgrounds. The findings of this single site study revealed that these parents/caregivers' experiences were characterised by feelings of powerlessness, offering descriptions of hospitals as harsh and difficult places to reside, they are 'in-hospitable'. The findings suggest that repeated hospitalisations created a cycle of stressful experiences that impacted both familial relationships and interactions with society. This study draws attention to this previously obscured population group, and calls health care practitioners and policy advisors to engage differently over issues involving families in similar positions.

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Administration of Home Intravenous Chemotherapy to Children by their Parents. Parents' Evaluation of a Nationwide Program

Objectives: Caring for a child with cancer can disrupt family life and financial stability, in addition to affecting the child's social, emotional, and educational development. Health care providers must consider ways to minimize the negative impact of illness and hospitalization on the child and family. This study evaluates a nationwide initiative to educate and support parents to administer chemotherapy to their child in their home.

Method: A questionnaire was circulated to parents participating in a home chemotherapy program from 2009 to 2014 (n = 140), seeking their perspective on the education program, and the benefits and concerns associated with administering home chemotherapy. Data analysis was conducted using a combination of descriptive statistics and content analysis.

Results: Questionnaires were received from 108 parents (response rate = 77%). Overall, the program was positively evaluated with 100% of parents (n = 108) reporting that the training met their needs. More than one-third of parents (41%, n = 44) initially felt nervous about home chemotherapy but reported that the education program helped assuage their concerns. Benefits included reduced financial costs, reduced travel time to hospital, less disruption to family life, and less stress for the child and family. No medication errors were reported during the evaluation period.

Conclusion: An important feature of the program is the partnership approach, which ensures that parents' decision to enter the program is informed, appropriate for their situation, and centered on the needs of the child. References

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Comparison of Caregiver Engagement in Telepractice and In-person Family-Centered Early Intervention

Telepractice—specifically, the use of high-speed internet and interactive videoconferencing technology to deliver real-time audio and video communications between the family and the practitioner—is gaining acceptance as an alternative means of providing family-centered early intervention to families of children who are deaf and hard of hearing. This study examined whether caregivers' reported perceptions of self-efficacy and involvement differed when early intervention was delivered in-person and through telepractice. The Scale of Parental Involvement and Self-Efficacy (SPISE) was used to evaluate perceptions of two groups of caregivers: one that received early intervention in-person (n  = 100) and a group who received services through telepractice (n  = 41). Results indicated that mode of delivery of services was not related to caregivers' perceptions of their self-efficacy or involvement. Further analysis revealed that although certain caregiver or child characteristics did influence some aspects of caregivers' beliefs about their self-efficacy or involvement, the effect of those variables was similar across both modes of delivery.

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'How families live ...' - the views and experiences of parent-carers who provide family placements to intellectual disability nursing students

Aim: We aimed to learn about the value of family placements from the perspective of parent-carers who provide them to nurse students via a Scottish university Family Placement Scheme.

Method: Qualitative interviews were conducted with seven parent-carers who provided a family placement over two academic years. Descriptive data was analysed, organized into themes and subject to content analysis: parents' descriptions of caring; their perceived value of family placements; and their views and experiences of participation in intellectual disability nurse education.

Results: Family placements are beneficial to nurse students and families with children with an intellectual disability. Description of wider aspects of caring was provided, offering insight into learning experiences of students on placement.

Conclusion: This model of learning provides opportunities for students to appreciate the reality of caring for a relative with an intellectual disability at home. Students develop their practice skills for working in partnership with family carers.

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Sustainable Family Care for Children with Disabilities

The majority of parents want to continue caring for their sons and daughters with disabilities at home, and they are expected and actively encouraged to do so. Notwithstanding, and for reasons that are not well understood, a substantial number of parents seek to place their disabled son or daughter out-of-home. The aim of this study was to investigate the attitudes of parent-carers in Alberta, Canada, toward out-of-home placement. The primary objective was to identify factors that may explain why some families, and not others, seriously consider out-of-home placement as an option for their child. This knowledge is vital for developing social care policies and programs that support parents and promote sustainable family care for children with disabilities. A stratified (by child age group) random sample of 538 families raising children with disabilities in Alberta, Canada took part. Participants completed the family life survey, which incorporated measures of child and family characteristics, sustainability of the daily routine, and out-of-home placement propensity. Results suggest that family placement propensity is inversely associated with the sustainability of the daily routine. Sustainability of the daily routine is, in turn, more strongly associated with social-ecological resources, including parental control-over-work and the adequacy of child care options, than with child characteristics, including activity limitations and behaviour problems. If families have the social-ecological resources they need to create and maintain a daily routine that is congruent with their values and goals, and with the needs, interests and competences of family members, then they are unlikely to give out-of-home placement any serious consideration. 

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Longitudinal Growth Curve Trajectories of Family Dynamics after Pediatric Traumatic Brain Injury in Mexico

Pediatric traumatic brain injury (TBI) represents a serious public health concern. Family members are often caregivers for children with TBI, which can result in a significant strain on familial relationships. Research is needed to examine aspects of family functioning in the context of recovery post-TBI, especially in Latin America, where cultural norms may reinforce caregiving by family members, but where resources for these caregivers may be scarce. This study examined caregiver-reported family satisfaction, communication, cohesion, and flexibility at three time points in the year post-injury for 46 families of a child with TBI in comparison to healthy control families. Families experiencing pediatric TBI were recruited from a large hospital in Guadalajara, Mexico, while healthy controls were recruited from a local educational center. Results from multilevel growth curve models demonstrated that caregivers of children with a TBI reported significantly worse family functioning than controls at each assessment. Families experiencing pediatric TBI were unable to attain the level of functioning of controls during the time span studied, suggesting that these families are likely to experience long-term disruptions in family functioning. The current study highlights the need for family-level intervention programs to target functioning for families affected by pediatric TBI who are at risk for difficulties within a rehabilitation context.

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Community participation of families of children with profound intellectual and multiple disabilities in South Africa

Background: Families struggle to support family members with profound intellectual and multiple disabilities (PIMD), especially in low resourced settings where formal services may not be available.

Method: The adapted Family Community Participation survey, measuring perceptions of community participation, was administered to 67 primary caregivers of children with PIMD in Cape Town by community-based rehabilitation workers.

Results: Families were most satisfied going to religious activities and getting together with family and friends. They were most dissatisfied with doing activities together in public and working or volunteering outside the home. Barriers to participation included negative attitudes, insufficient money and unavailability of community activities. Transportation, safety and security were additional challenges.

Conclusions: Participants advocate awareness raising, community support and provision of services to address barriers to community participation. Families should be consulted on community issues to integrate their specific family needs into the overall needs of the community.

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SAFE, a new therapeutic intervention for families of children with autism: a randomised controlled feasibility trial

Objectives: To establish the feasibility of a definitive randomised controlled trial of Systemic Autism-related Family Enabling (SAFE), an intervention for families of children with autism. 

Design: A randomised, controlled, multicentred feasibility study.; Setting: Participants were identified from three National Health Service (NHS) diagnosing centres in Plymouth and Cornwall and a community pathway.

Participants: 34 families of a child with a diagnosis of autism severity level 1 or 2 between 3 and 16 years. Four families were lost to follow-up.

Interventions: SAFE is a manualised five-session family therapy-based intervention delivered over 16 weeks and designed for families of children with autism. SAFE involves families attending five 3-hour sessions led by systemic practitioners.

Primary and Secondary Outcome Measures: The proposed primary outcome measure was the Systemic CORE 15 (SCORE-15). Proposed secondary outcome measures: Patient Health Questionnaire-Somatic Anxiety Depressive Symptoms, the Coding of Attachment-Related Parenting for use with children with Autism, the Child Behaviour Checklist (CBCL), the Reflective Functioning Questionnaire (RFQ) and the Caregiving Helplessness Questionnaire. Outcome measures were collected at baseline and 24 weeks post randomisation.

Results: All primary caregivers retained in the study completed the SCORE-15 at both time points. 34 of the target of 36 families were recruited and 88% of families were retained. Training for therapists was effective. Feedback revealed willingness to undergo randomisation. There was 100% attendance at appropriate sessions for core family members. The SCORE-15 showed reduction in scores for families receiving SAFE compared with controls suggesting positive change. Qualitative data also revealed that families found the study acceptable and families receiving SAFE experienced positive change. Feedback indicated that the SCORE-15 should be retained as a primary measure in a future trial, but secondary measures should be reduced.

Conclusions: This study indicates that a larger trial of SAFE is feasible. Findings suggest that SAFE can address current gaps in recommended care, can be confidently delivered by NHS staff and has potential as a beneficial treatment.

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Financial Challenges of Cancer for Adolescents and Young Adults and Their Parent Caregivers

This study examined the financial impact of cancer and the use of income support in adolescents and young adults (AYAs) with cancer and their parent caregivers. As part of a national Australian study exploring the psychosocial impacts of cancer, 196 AYAs ages 15 to 25 years, six to 24 months from diagnosis, and 204 parent caregivers from 18 cancer sites were surveyed. Logistic regression and chi-square analyses were conducted to assess the influence of clinical and sociodemographic variables on financial status. Qualitative responses were coded, and key themes were identified using thematic analysis. The findings indicate that more than half of AYAs and parents reported financial issues as a consequence of AYA cancer. Financial issues resulted from direct medical costs, associated costs from treatment, and indirect costs from loss of income. AYAs and parents reported that it was important for them to receive income support, both during and after cancer treatment. However, large proportions of those who reported needing income support had difficulty accessing it. AYAs and their families are substantially financially disadvantaged by cancer, many for a prolonged time. Patient- and family-centered assessments and interventions are required to reduce the financial burden of AYA cancer. 

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Overcoming the challenges of caring for a child with foetal alcohol spectrum disorder: a Pilbara community perspective

Introduction: Foetal alcohol spectrum disorder (FASD) is a neurodevelopmental impairment that may result in individuals experiencing poor development, cognitive issues and disruptive behaviours. In Australia, the prevalence of FASD is unknown; however, two studies have revealed the prevalence of FASD in high risk populations in Western Australia. Individuals with FASD may experience higher rates of negative outcomes including poor school performance, involvement with the justice system and incarceration, substance use and are at risk of being placed in out-of-home care. Caregivers of children with FASD can experience challenges and high levels of stress due to the disruptive behaviours displayed by many children diagnosed with FASD. Whilst experiences of caregivers raising children with FASD have been documented globally, little is known about the experiences of caregivers in a remote Australian context, particularly from an Australian Aboriginal perspective. This study aimed to investigate the experiences of caregivers in a remote Australian context. The findings will be valuable to inform programs at the family, community and broader policy levels that can help enhance children's development and wellbeing.

Methods: Participants (n=7) in this qualitative study were recruited through a FASD diagnostic clinic and family support organisation in the Port Hedland region of Western Australia. Eligible participants were previous or current caregivers of children with a FASD diagnosis or risk of FASD and provided informed consent before participating in semi-structured interviews using a phenomenological approach. The interviews were 30-60 minutes in duration and were audio-recorded and transcribed verbatim using NVivo 11 computer software, with all identifying information removed.

Results: The caregivers provided rich, descriptive narratives revealing the challenges and stress they experienced when they first started caring for their child with FASD. Caregivers articulated how they developed and adapted strategies through trial and error that enabled them to better manage disruptive behaviours and maintain a stable, calm environment. A thematic analysis revealed four major themes: the importance of routine and structure for the child and family, the importance of family support, the benefits of peer support groups and various social issues impacting children's development. Maintaining routine and structure had helped many caregivers mitigate stress and reduce disruptive behaviours, and family support allowed caregivers some respite whilst ensuring children remained connected to their biological families and culture. The caregivers also shared that peer support groups would be beneficial to share stories and strategies with others experiencing similar circumstances. Broader societal issues requiring attention at the community level were discussed, in addition to caregivers having awareness of the complexities impacting the children's biological families.

Conclusion: The caregivers in this study have gained valuable knowledge and wisdom through caring for a child with FASD that can benefit health professionals and the broader community. Whilst the caregivers in this study have overcome challenges through developing and adapting their own strategies, support services providing tailored programs for caregivers when they first start caring for a child with FASD would be beneficial. Furthermore, formal respite was not utilised by the caregivers in this study due to safety issues, inconsistent parenting and interrupted routines, therefore investigation into training respite caregivers in the area of FASD would be beneficial. Furthermore, respite services should consider provisions to include extended families and kinship relationships in a formal context to enable ongoing cultural and family connection, consistent parenting strategies and routines.

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The Cascading Coaching Model for Supporting Service Providers, Caregivers, and Children

Teaching caregivers to support their young children's language development is recommended as an effective early language intervention, and caregiver-implemented interventions are recognized as evidence-based. However, as the natural change agents for training and coaching caregivers, early intervention (EI) service providers are in need of professional development to effectively coach caregivers to use interventions with their child. The purpose of this study was to examine the Coaching Caregivers Professional Development program (CoCare PD) in which researchers train and coach EI service providers via telepractice in caregiver coaching, a set of skills useful in nurturing partnerships with families to support caregivers' use of evidence-based practices with their young children with disabilities. A single-case research study across four EI service providers was conducted and findings support a functional relation between training and coaching EI service providers via telepractice and providers' use of coaching practices with families on their caseload. 

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Supporting Spanish-Speaking Families with Children with Disabilities: Evaluating a Training and Coaching Program

Researchers report that caregiver-implemented communication interventions are effective and feasible. However, limited information is available on training and coaching programs for families who speak languages other than English in their homes. The purpose of this study was to evaluate a parent training and coaching program originally designed to support English-speaking families, then translated and modified to support Spanish-speaking families with young children with disabilities or speech delays. Specifically, this preliminary evaluation explored the extent to which the program had an impact on the following outcomes for the seven Spanish-speaking caregiver participants: (a) enhanced knowledge of the target communication strategies, (b) enhanced application and correct use of the target communication strategies, and (c) understanding of the feasibility, satisfaction, and perceived impact of the program. 

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Psychosocial aspects of children and families treated with hemodialysis

Introduction: The aim of this study was to analyze the selected psychosocial aspects of chronic kidney disease in children treated with hemodialysis (HD).

Methods: The study included 25 children treated with HD aged 2 to 18 years and their parents. Data concerning the illness and socio-demographic parameters was collected. We used the Paediatric Quality of Life Inventory (PedsQL) for patients and for their parents the PedsQL-proxy version, General Health Questionnaire (GHQ-12), Berlin Social Support Scales (BSSS), and the Caregivers Burden Scale (CBS) to evaluate health-related quality of life (QoL) of HD children and their primary caregivers.

Findings: In the PedsQL test, the QoL of HD children was lower than in healthy children. Children treated with HD assessed their QoL on the PedsQL questionnaire higher than the primary caregivers, on all subscales as well as an overall health-related QoL. Scoring below 2 on the GHQ-12 test was reported in 56% of mothers, which may indicate that psychological symptoms have intensified. There was no correlation between BSSS, CBS, and GHQ-12.

Discussion: The assessment of QoL in pediatric patients would allow for the earliest possible identification of their nonsomatic problems and irregularities. This could, consequently, contribute to improving QoL in both children with chronic kidney disease and their families. 

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Medical service use in children with cerebral palsy: The role of child and family factors characteristics

Aim: The aim of the study was to investigate the patterns of medical service use in children with cerebral palsy (CP), taking into account child and family characteristics.

Methods: Nine hundred and one parents and carers of children registered with the Victorian CP Register were invited to complete a survey. Participants were asked about their child's appointments with general practitioners and public and private paediatric medical specialists over the preceding 12 months. Information on family characteristics and finances was also collected. Data on CP severity and complexity were extracted from the CP Register.

Results: Three hundred and fifty parents and carers (39%) participated. Of these, 83% reported that their child had ≥1 appointment with a general practitioner over the preceding 12 months, while 84% had ≥1 appointment with a public or private paediatric medical specialist. Overall, 58% of children saw 2-5 different paediatric medical specialists, while 9% had appointments with ≥6 clinicians. Children with severe and complex CP were more likely to have had ≥1 appointment with a publically funded paediatric medical specialist and had seen a greater number of different clinicians over the study period. Family characteristics were not associated with service use.

Conclusions: Children with CP are managed by a number of paediatric medical specialists, and they continue to see a range of specialists throughout adolescence. In Victoria, differences in service use are not based on family characteristics; instead the highest service users are those with severe and complex CP. For this group, care co-ordination and information sharing between treating clinicians are important, if gaps in care are to be avoided.

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Family Burden After Out-of-Hospital Cardiac Arrest in Children

Objectives: To describe family burden among caregivers of children who survived out-of-hospital cardiac arrest and who were at high risk for neurologic disability and examine relationships between family burden, child functioning, and other factors during the first year post arrest.

Design: Secondary analysis of data from the Therapeutic Hypothermia after Pediatric Cardiac Arrest Out-of-Hospital trial.

Setting: Thirty-six PICUs in the United States and Canada.; Patients: Seventy-seven children recruited to the Therapeutic Hypothermia after Pediatric Cardiac Arrest Out-of-Hospital trial who had normal prearrest neurologic functioning and were alive 1 year post arrest.;

Interventions: Family burden was assessed using the Infant Toddler Quality of Life Questionnaire for children less than 5 years old and the Child Health Questionnaire for children 5 years old or older at baseline (reflecting prearrest status), 3 months, and 12 months post arrest. Child functioning was assessed using the Vineland Adaptive Behavior Scale II, the Pediatric Overall Performance Category, and Pediatric Cerebral Performance Category scales and caregiver perception of global functioning.

Measurements and Main Results: Fifty-six children (72.7%) were boys, 48 (62.3%) were whites, and 50 (64.9%) were less than 5 years old prior to out-of-hospital cardiac arrest. Family burden at baseline was not significantly different from reference values. Family burden was increased at 3 and 12 months post arrest compared with reference values (p < 0.001). Worse Pediatric Overall Performance Category and Pediatric Cerebral Performance Category, lower adaptive behavior, lower global functioning, and higher family burden all measured 3 months post arrest were associated with higher family burden 12 months post arrest (p < 0.05). Sociodemographics and prearrest child functioning were not associated with family burden 12 months post arrest.

Conclusions: Families of children who survive out-of-hospital cardiac arrest and have high risk for neurologic disability often experience substantial burden during the first year post arrest. The extent of child dysfunction 3 months post arrest is associated with family burden at 12 months.

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Smartphone apps to help children and adolescents with cancer and their families: a scoping review

Introduction: Considering the importance of empowering patients and their families by providing appropriate information and education, it seems smartphone apps provide a good opportunity for this group. The purpose of this review was to identify studies which used smartphone apps to help children and adolescents with cancer and their families.

Method: Arksey and O'Malley's framework was employed in this review. To examine the evidence on the design and use of smartphone apps for the target group, PubMed, Embase, Scopus and Web of Science databases were searched from 2007 to November 2018.

Results: Twenty-four articles met the inclusion criteria, with 33% being conducted in the USA and 21% in Canada. Moreover, in 20 studies (83%), app was specifically designed for children and adolescents, with only three studies (13%) for parents and one study (4%) for both. The main modules of smartphone apps in these studies included symptom assessment (90%), provision of information and education (74%), communication with caregivers (57%), social support (30%) and calendar and reminder (21%).

Conclusions: Due to the easy access to smartphones without a costly infrastructure compared to landline phones, the use of mobile health (m-Health) has become a suitable method of providing healthcare services, especially for cancer. Use of smartphone apps, increases patient and families' access to reliable and suitable education and information regarding the disease. Thus, healthcare policy-makers in developing or underdeveloped countries can exploit the health-related potentials of m-Health following the experience of developed countries.

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103. Implementation of a health literacy- informed educational intervention for children and caregivers during hospitalization with asthma...Association of pediatric program directors, virtual fall annual meeting, 2020, 14-16 october, 2020

Asthma is the most prevalent chronic disease of children. Poor health literacy and ineffective teaching can result in poorer outcomes, increased Emergency Department visits, readmissions, and increased costs to the system. Our primary aims for this project are: 1) Increase the percent of families who receive multimodal asthma education (verbal, video, and handout) during hospitalization for asthma. 2) Decrease rates of inpatient hospital readmissions for asthmatics aged 2-18. A multidisciplinary QI team including physicians, nurses, respiratory therapists, and ancillary providers was formed. Chart audits were done to assess baseline documentation of asthma education on the acute care floors from July 2017 through February 2019. Three PDSA cycles were conducted with interventions including: 1) identification of asthma nurse champions and pilot of new educational materials to families on our pilot unit (March 2019); 2) training all unit staff on asthma education materials (April-May 2019); 3) improvement of electronic medical record asthma education documentation (June-July 2019). Statistical process control charts were used to assess the impact of these interventions. Outcome measures were percent of encounters with any asthma education documented and readmission rates. Process measures were the percent of encounters with each multimodal (verbal, video, or handout) type. Balancing measures included hospital length of stay, time from admission to teaching, and time from discharge order placement to hospital discharge. Encounters with any asthma education documented increased from baseline of 63% to 84% post interventions, with special cause improvement noted. There was also an increase in video education from 0% to 65%. It is too early to report impact on hospital readmission rates which we continue to trend. Our interventions led to no change in our balancing measures. We have been able to successfully increase the overall patient and caregiver asthma education as well as increase use of multimodal methods of asthma teaching. New multimodal education materials implemented have standardized the content and process for asthma education. Ongoing efforts are being made to produce sustained change and to spread asthma education hospital wide. We speculate the project has potential to influence population level asthma outcomes as we continue to expand our reach throughout the health system and community.

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Depression and associated factors among parents of children diagnosed with cancer at Tikur Anbessa Specialized Hospital, Addis Ababa, Ethiopia

Background: The global cancer burden is estimated to have risen to 18.1 million new cases and 9.6 million deaths in 2018. The period of child's diagnosis negatively influences parents socially and psychologically leading to depression.

Objectives: The aim of the study was to assess the prevalence of depression, its associated factors and parent's experience towards care of their cancer diagnosed child.

Methods: A mixed approach quantitative and qualitative cross-sectional study was employed between 15 March and 1 April 2017. Systematic random sampling involving 275 participants in the quantitative and 20 conveniently selected participants for qualitative study were included in the study. Beck's depression inventory scale was used to collect data. Logistic regression including bivariate and multivariate analysis considering 95% confidence interval (CI) was utilized to examine association between dependent and independent variables. P-value <.05 was considered statistically significant. Thematic analysis was used to analyze qualitative data.

Results: The prevalence of depression among parents was 72.4%, with depression levels of: borderline 7.3%, moderate 6.2%, severe 6.5%, and extreme severe depression 3.3%. Single parenting, income, history of depression, and support source were associated with parental depression (adjusted odds ratio, AOR = 6.21; 95% CI: 2.66-14.52), (AOR = 0.34; 95% CI: 0.02-0.86), (AOR = 8; 95% CI: 1.7-37.4), (AOR = 38; 95% CI: 2.6-560), respectively.

Conclusion: Family income, single parenting, and support sources are determinant factors for parental depression in this study. Nurses should early detect parents at risk and give due attention to reduce the risk of depression. 

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Impact of Self-Efficacy on The Quality of Life of Children With Asthma and Their Caregivers

Introduction: Health-related quality of life is an important outcome measurement in the monitoring of asthma control. Self-efficacy is a determinant of self-management behaviors that can contribute to the improvement of asthma control and quality of life. Our objective was to analyze the relationship between self-efficacy and quality of life in children with asthma and their caregivers.

Methods: We included 176 patients aged 6-14 years with asthma, and determined their level of self-efficacy according to three groups (low, medium and high levels). Each child and their main caregiver completed the PAQLQ and PACQLQ questionnaires, respectively.

Results: PAQLQ range=1-7: 5.61±1.11; PACQLQ range=1-7: 5.42±1.35; self-efficacy range=0-60: low level 28.44±4.58; average level 37.41±1.7, and high level 47.50±5.5. Significant differences were observed in quality of life according to low-medium vs. high levels of self-efficacy. Specific related domains: PAQLQ emotions and PAQLQ symptoms with self-efficacy in problem-solving skills related to asthma and treatment self-efficacy; PACQLQ emotions with self-efficacy in problem-solving skills related to asthma.

Conclusions: A high level of self-efficacy is associated with a better quality of life for children and their caregivers. Based on these results, the measurement of self-efficacy could be incorporated in the assessment of educational interventions in self-management targeted at the quality of life of the patient and his or her family.

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Sleep Disturbance in Caregivers of Children With Respiratory and Atopic Disease

Objective: To examine sleep patterns and sleep disturbances in caregivers of children with chronic illness.

Methods: Caregivers of children with atopic dermatitis (AD, n = 35), asthma (AS, n = 27), atopic dermatitis and asthma (AD + AS, n = 57), ventilator assistance (VENT, n = 61), or typically developing (HEALTHY, n = 63) completed the Pittsburgh Sleep Quality Index, the Insomnia Severity Index, and three items examining reasons for parent sleep disruption.

Results: Compared with healthy families, caregivers of children with chronic illness reported poorer sleep quality, more symptoms of insomnia, and chronic partial sleep deprivation. VENT and AD caregivers had higher rates of sleep disruptions due to caregiving, whereas AS caregivers reported more sleep disruptions from stress about the child's health.

Conclusions: Deficient and poor-quality sleep in caregivers of children with chronic illness may have a significant impact on their health and well-being, as well as caregiving responsibilities. These data provide important information for pediatric psychologists working with these families.

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Family caregivers' reported nonadherence to the controller medication of asthma in children in Casablanca (Morocco): Extent and associated factors

Objective: Recent statistics show a relatively high prevalence of asthma among Moroccan children and a weak control over their symptoms. To our knowledge, no research has been carried out to document adherence to the controller treatment in this population. This study aims 1) to assess the extent of children's nonadherence to the controller treatment of asthma in an urban region of Morocco as reported by a family caregiver, and 2) to identify the associated factors.

Methods: We conducted a cross-sectional study among caregivers of asthmatic children (2-12 years old) in different health and education facilities of Casablanca-Settat. We administered face-to-face questionnaires incorporating validated instruments (Medication Adherence Rating Scale-Asthma (MARS-A), Beliefs about Medicines Questionnaire (BMQ), Asthma Knowledge Questionnaire). Univariate and multivariate log-binomial regressions evaluating the association between several factors and reported nonadherence were performed (prevalence ratios (PR) and 95% confidence intervals (CI)).

Results: Through two public hospitals, three private medical clinics, and one private school, 103 caregivers were recruited. Low adherence to the controller treatment of asthma was reported by 48% of the caregivers (MARS-A <45). In the multivariate model, caregivers with the lowest level of knowledge about asthma were almost three times more likely to report low adherence compared to caregivers with the highest level (PR = 2.93; 95% CI: 1.14-7.52).

Conclusions: This study highlights the finding that low adherence is widespread in this context and also the importance of targeting caregivers' knowledge of asthma for interventions. 

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Feeding a child with cerebral palsy: parents' difficulties

Background: The nutritional status of children with cerebral palsy (CP) is an issue where nurses have a major responsibility towards children and their parents.

Objectives: To assess the weight, height and body mass index of children with CP; To identify the caregivers’ perception of the nutritional status of their child with CP; To identify the caregivers’ difficulties in feeding their child; To identify the association between family functionality and the child’s weight.

Methodology: Mixed study with a sample of 104 children and their father/mother (104). The Anthropometric Assessment Questionnaire was applied to parents. Results: About 45% of children were below the 5th percentile. Most caregivers were aware of their child’s weight-for-height deficit. These caregivers’ difficulties were related to food spilling out of the mouth, choking, and frequent vomiting.

Conclusion: A high percentage of children with CP have weight-for-height deficit. Caregivers are aware of this issue, indicating difficulties in feeding their children. The families of children with weight-for-height deficit are the most dysfunctional families.

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Evaluation of the measurement properties of the Brazilian version of two quality-of-life questionnaires in food allergy - for children and their parents

Objective: To evaluate the psychometric properties of the Brazilian version of health-related quality-of-life questionnaires of children with food allergy and their parents.

Methods: The translation and cultural adaptation processes were previously performed, according to the method proposed by the World Health Organization. After this stage, the questionnaires were applied to 201 parents of children under 6 years of age with food allergy. The assessment of the psychometric properties included: evaluation of the internal consistency by Cronbach's alpha coefficient; of the reproducibility by the intraclass correlation coefficient between test and retest; and of the construct, using Spearman's correlation coefficient, comparing the obtained scores with those of generic questionnaires that evaluate health-related quality of life.

Results: The means of the obtained scores were 2.44 and 3.35, for the children and their parents, respectively. Cronbach's alpha coefficients were 0.85 and 0.91, respectively, which showed good internal consistency of the tools. The intraclass correlation coefficients between test and retest were 0.87 and 0.84 for children and their parents, respectively, showing good reproducibility for both questionnaires. The correlation between the specific and the generic questionnaires was significant (-0.27 for the children, -0.64 for their parents, p<0.05).

Conclusions: The specific questionnaires to evaluate the health-related quality of life of children with food allergy and of their parents were satisfactorily validated to be used in Brazil. 

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Social Networking Family of Caregivers during Hospitalization of Children

Objective: To identify and analyze the significant networks of family, social and hospital support described by the family caregivers of hospitalized children 5-12 years during the hospital stay.

Method: Descriptive study, exploratory and qualitative study conducted with 20 caregivers of children hospitalized in a hospital in a city in southern Brazil, through semi-structured interviews and significant social networks maps, tailored to the hospital setting.

Results: Data analysis showed that the most active social network was comprised of families through emotional support, material aid and services. Relations with hospital health care team and the hospital context were cited as providing support to the caregivers of the hospitalized child.

Conclusions: The identification of social networks in the child's hospitalization course enables equip professionals working in the institution aiming at better targeting of actions and care for the family and hospitalized children.

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Parental feeding concerns of infants and young children with oesophageal atresia

Aim: Feeding problems have been described in young children with oesophageal atresia (OA). The primary aim of this study was to determine the specific concerns of parents and carers of infants and young children with OA regarding introducing solids and moving up to family foods.

Methods: A questionnaire was developed for parents and carers of infants and children with OA, aged 12 months to 6 years. Questionnaires were completed by 20 parents attending a multidisciplinary OA clinic between June 2016 and June 2017. Demographics and parental concern regarding feeding milestones were collected. The Montreal Children's Hospital Feeding Scale was completed.

Results: The majority of children (95%) had type C OA. Eleven (55%) parents agreed/strongly agreed that they were concerned about their child's feeding prior to the introduction of solids and about moving to more textured solids. The most common concern was choking and food impaction for both time points. Twelve (60%) parents agreed/strongly agreed that the majority of mealtimes in their child's first 1-2 years of life were stressful. Thirteen (65%) parents reported avoiding particular foods due to their child's OA. The majority of children (n = 17) had no feeding difficulty according to an objective scale, and the rest had minor difficulty.

Conclusions: Parental concern around feeding still exists in infants and children without a severe feeding difficulty. Multidisciplinary involvement, including a dietitian and speech pathologist, from an early age is important for infants and children with OA.

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Caregiver and Adolescent Patient Perspectives on Comprehensive Care for Inflammatory Bowel Diseases: Building a Family-Centered Care Delivery Model

Background: Children with inflammatory bowel diseases (IBDs) require primary and gastrointestinal (GI) care, but little is known about patient and family preferences for care receipt. We aimed to understand caregiver perceptions of current healthcare quality, describe barriers to receiving healthcare, and elicit caregiver and adolescent preferences for how comprehensive care ideally would be delivered.

Methods: This was an anonymous survey of caregivers of 2- to 17-year olds with IBD and adolescents with IBD aged 13-17 years at a large, free-standing children's hospital. Surveys assessed patient medical history, family demographics, perceptions of health care quality and delivery, barriers to primary and GI care, and preferences for optimal care delivery.

Results: Two hundred and seventeen caregivers and 140 adolescents were recruited, 214 caregivers and 133 adolescents consented/assented, and 160 caregivers and 84 adolescents completed the survey (75% and 60% response rate, respectively). Mean patient age was 14 years (SD = 3); 51% male; 79% Crohn's disease, 16% ulcerative colitis, and 4% indeterminate colitis. Caregivers were primarily female (86%), Caucasian (94%), and living in a 2-caregiver household (79%). Most caregivers reported that their child's primary care physician (PCP) and GI doctor oversaw their primary care (71%) and their IBD care (94%), respectively. Caregivers were satisfied with communication with their PCP and GI providers (>90%) but did not know how well they communicated with one another (54%). Barriers to primary and GI care varied, and few caregivers (6%) reported unmet healthcare needs. Caregivers and adolescents saw PCPs and GI doctors having important roles in comprehensive care, though specific preferences for care delivery differed.

Conclusion: Caregivers and adolescent perspectives are essential to developing family-centered care models for children with IBD. 

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Sleep Outcomes for Parents of Children With Neurodevelopmental Disabilities: A Systematic Review

Parents of children with Neurodevelopmental Disabilities (NDDs) are at risk of sleep loss. No comprehensive systematic reviews examining parental sleep outcomes in caregivers of children with NDDs exist. A systematic search was conducted between June and August 2016 examining sleep quantity, quality, sleepiness, and fatigue outcomes of caregivers of children with NDDs. Of 7,534 citations retrieved, 33 met eligibility criteria. Most studies (n = 27) were cross-sectional, included a range of NDDs and were of “poor” (n = 14) or “fair” (n = 17) quality. Few good quality studies compared objectively measured sleep in parents of children with NDDs with parents with typically developing children. Parents of children with NDDs consistently reported significantly poorer subjective sleep quality. There is a paucity of good quality comparative studies, using well-validated measures, examining parental sleep outcomes. Future research should aim to fill this gap, providing greater insight to parents’ experiences, and identifying targets for intervention design and evaluation.

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Family-Focused Therapy for Bipolar Disorder: Reflections on 30 Years of Research

Family-focused therapy (FFT) is an evidence-based intervention for adults and children with bipolar disorder (BD) and their caregivers, usually given in conjunction with pharmacotherapy after an illness episode. The treatment consists of conjoint sessions of psychoeducation regarding bipolar illness, communication enhancement training, and problem-solving skills training. This paper summarizes over 30 years of research on FFT and family processes in BD. Across eight randomized controlled trials with adults and adolescents with BD, FFT and mood-stabilizing medications have been found to hasten recovery from mood episodes, reduce recurrences, and reduce levels of symptom severity compared to briefer forms of psychoeducation and medications over 1-2 years. Several studies indicate that the effects of FFT on symptom improvement are greater among patients with high-expressed emotion relatives. New research focuses on FFT as an early intervention for youth at risk for BD, neuroimaging as a means of evaluating treatment mechanisms, and progress in implementing FFT in community mental health settings. 

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Experiences of living with juvenile idiopathic arthritis: a qualitative systematic review protocol

Objective: The objective of this review is to identify, critically appraise and synthesize the available qualitative evidence to understand the experiences of children, young adults and their carers living with juvenile idiopathic arthritis in any setting.

Introduction: Juvenile idiopathic arthritis is the most common rheumatic disease in childhood. Despite the availability of effective treatments, the disease still has negative impacts on patients' and carers' lives. Patients' and carers' experiences of living with juvenile idiopathic arthritis have been recognized as important in the measurement of health status and treatment implementation. Addressing these needs will facilitate more effective management and treatment of the disease. This protocol describes a method for a systematic review regarding the perspectives from patients and carers in order to highlight the needs of families throughout their juvenile idiopathic arthritis journey.

Inclusion Criteria: Studies on the experiences of patients aged <21 years who have been diagnosed with juvenile idiopathic arthritis according to the International League of Associations for Rheumatology criteria, as well as the experiences of their carers, will be considered. Papers included in this review will include, but not be limited to, designs such as phenomenology, grounded theory and ethnography.

Methods: A comprehensive search using PubMed, CINAHL, Embase, PsycINFO and Web of Science was undertaken in August 2019. Available studies published in English from 2001 to 2019 will be included. The recommended JBI method for study selection, critical appraisal, data extraction and data synthesis will be used.

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Psychometric Properties of the Family Inventory of Resources for Management in a Sample of Iranian Family Caregivers of Cancer Patients

Objective: The aim of this study was to investigate the psychometric properties of the Family Inventory of Resources for Management (FIRM) in a sample of family caregivers of cancer patients.

Methods: In this methodological study, construct validity of the FIRM was evaluated by known groups and convergent validity in a convenience sample of family caregivers of cancer patients (n=104) referred to the outpatient oncology wards of five educational hospitals in Tehran from January to April 2016. Reliability was determined by assessing the internal consistency and stability of the instrument.

Results: The known-groups findings showed that there is a significant difference between the scores of the FIRM in family caregivers with different levels of caregiver burden (p<0.001). Also, the results of convergent validity showed that there is a moderate negative correlation (r=-0.50; p<0.001) between the total scores of the FIRM and the scores of the caregiver burden inventory (CBI). The FIRM showed a good internal consistency (α=0.85) and a good stability of the test-retest reliability result.

Conclusions: There is a sound psychometric basis for the use of the Persian translation of the FIRM for family studies in the Iranian population. 

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Short break and emergency respite care: what options for young people with life-limiting conditions?

Background: Service providers face difficult decisions about how best to develop services for the increasing numbers of young people with life-limiting conditions who require palliative care.

Objective: To explore alternative short break and emergency respite care options to children's hospice care.

Methods: A two-phase evaluation with young people, families and professionals.

Phase 1: qualitative semi-structured interviews and focus groups (n=53).

Phase 2: mixed-method survey (n=82), qualitative findings only.

Results: There were few, or no, appropriate short break and emergency respite care alternatives when children's hospice care was not available that can meet the need of young people with life-limiting conditions, creating anxiety for children's hospice users and those leaving the service as a result of reaching transition age or through no longer meeting the children's hospice eligibility criteria.

Conclusion: Access to appropriate short break and emergency respite care is required to prevent lifelong negative consequences for young people with life-limiting conditions, their family and society. Research is undoubtedly required to explore the impact and outcomes of children's hospice discharge for young people and their family. Particular attention should be paid to the lack of services for an increasing population making the transition from children's hospices. 

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'I Waited for It until Forever': Community Barriers to Accessing Intellectual Disability Services for Children and Their Families in Cape Town, South Africa

Background: Intellectual disability is more common in low- and middle-income countries than in high-income countries. Stigma and discrimination have contributed to barriers to people with intellectual disability accessing healthcare. As part of a larger study on caregiving of children with intellectual disability in urban Cape Town, South Africa, we interviewed a sub-group of families who had never used the intellectual disability services available to them, or who had stopped using them.

Methods: We employed a qualitative research design and conducted semi-structured interviews to explore the views and perspectives of parents and caregivers of children with intellectual disability who are not using specialised hospital services. We developed an interview guide to help explore caregivers' and parents' views.

Results: Results revealed that caregivers and parents of children with intellectual disability did not use the intellectual disability service due to financial difficulties, fragile care networks and opportunity costs, community stigma and lack of safety, lack of faith in services and powerlessness at effecting changes and self-stigmatisation.

Conclusion: Current findings highlight a need for increased intervention at community level and collaboration with community-based projects to facilitate access to services, and engagement with broader issues of social exclusion.

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Caregivers' and parents' explanatory models of intellectual disability in Khayelitsha, Cape Town, South Africa

Background: Post‐apartheid, understanding and management of intellectual disability remain poor in South Africa, complicated by various contextual and cultural explanations used to describe and conceptualize this condition.

Method: We conducted 20 semi‐structured interviews with primary caregivers and parents of children with intellectual disability residing in Khayelitsha, a low‐income setting in Cape Town, South Africa. We used Kleinman's Explanatory Models (EMs) of illness to explore terms used to describe and conceptualize this condition.

Results: Carers' explanatory models included biomedical causes, injuries during pregnancy or birth, as well as spiritual causes. It was reported that there were significant difficulties in accessing services and support, and difficulties with coping in the context of extreme poverty and deprivation.

Conclusions: Current findings highlight a need for collaboration between the biomedical and alternative healthcare systems in educating carers and parents regarding intellectual disability. 

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Carer stress in Fetal Alcohol Spectrum Disorders: the implications of data from the UK national specialist FASD clinic for training carers

Medical research literature is increasingly reporting high levels of stress among carers of children with Fetal Alcohol Spectrum Disorders (FASD). However, while there are a growing number of evidence-based innovations around the world for carer stress generally, there are no programmes in the UK for those looking after children with FASD. The aim of this study, therefore, is to provide an up-to-date profile of stress faced by these carers, to explore its sources and suggest directions for service development. Seventy-one carers and their child with FASD participated in a study designed for this purpose. Parental stress levels were assessed using the Parental Stress Index (PSI) and the characteristics of their children – cognition, adaptive behaviour, sensory processing and externalising behaviour function – by a battery of measures. Further correlational and regression analyses were carried out to explore the nature and source of the carer stress identified. When the levels of stress in families was measured, all six Child Domains on the PSI showed results that were above the clinically significant cut-off for high stress, while all seven Parent Domains were below this threshold. Significant associations were found between the PSI and child behaviours, but generally the Parent Domain and Child Behaviours were not correlated. Regression analysis found executive functioning difficulties in children to be the main predictors of carer stress but sensory difficulties were not significant, despite 83% of the children having elevated problems of this kind. Total stress scores among carers of children with FASD were elevated and far exceeded the threshold score on the PSI, suggesting a need for 'further professional consultation'. Consideration of parental needs and the development of evidenced-based interventions specific for these carers are highlighted as areas for future development.

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Family-centred care for children and young people with cerebral palsy: results from an Italian multicenter observational study

Background: Family‐centred care (FCC) is recognized as the model of best practice for the provision of services for children who have physical disabilities and their families.

Objective: To assess the overall perception of FCC provided in an Italian network of 17 rehabilitation services, as perceived by parents of children with cerebral palsy and professionals, and to explore whether children, families, service providers and service‐related characteristics influence parent satisfaction regarding service provision in an FCC practice.

Methods: The Measure of Processes of Care (MPOC‐20) for parents/caregivers and the Measure of Processes of Care for Service Providers (MPOC‐SP) for healthcare providers were used. For the purposes of the study, an ad hoc information form was developed to collect information concerning children, families, service providers and services.

Results: A total of 382 parents/caregivers and 269 healthcare providers completed the MPOC questionnaires. Parents and service providers both identified the domains for enabling partnerships and interpersonal sensitivity as a strength, while the domain relating to general information was always scored the lowest. An advanced maternal age, being a single parent, being unemployed and having lower socio‐economic status were factors identified as individually predictive of lower FCC scores on the MPOC‐20. Higher intensity treatment, inpatient services, primary healthcare settings and settings identified with limited financial resources and reduced space/time for each family were other variables significantly associated with less favourable MPOC‐20 ratings.

Conclusions: The perception of FCC provided was fairly positive, with some areas of improvement, such as the domain of provision of information. Professionals should, therefore, provide better communication and take more time in giving information and attention to parents. Potential sources of variation in parent perceptions of FCC based on family characteristics and the organization of services highlight the importance the need to support services through the provision of greater financial and human resources.

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"There Is No Before Cancer… There Is Only Cancer." Perceived Late Effects of Pediatric Cancer on Survivors

Background: Although "late effects" connotes experiencing effects later in life, they can emerge immediately after active treatment. The effects that survivors experience have been reported but rarely from the point of view of the survivors regarding their life after treatment.

Objective: To examine the perceived late effects of pediatric cancer on survivors and their self-identified primary support persons in order to understand the multifaceted nature of living after a pediatric cancer diagnosis.

Methods: Using a pragmatic interpretive phenomenology approach, 10 survivors of pediatric cancer (aged 21-28 years) and 9 of their support persons (aged 23-73 years) participated, completing background questionnaires and semistructured, one-on-one interviews. Interview transcripts were analyzed thematically.

Results: Both survivors and support persons acknowledged that survivors experienced negative physical and cognitive health outcomes that require follow-up care. Survivors acknowledged that their cancer experience and residual effects have changed the trajectory of their lives.

Conclusions: Research on young adult survivors of pediatric cancer and the residual/late effects and emotional outcomes they experience is warranted. Longitudinal research can aid in understanding how effects develop or worsen over time.

Implications for Practice: The findings of this study support The Children's Oncology Group Long-term Follow-up Guidelines for practitioners. As the frontline caring for these individuals and families, nurses' involvement in transitional care out of treatment is necessary. Continued involvement and understanding of long-term pediatric cancer survivorship for nurses are also imperative for continuity for survivors and families.

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The Balancing Act: Mothers' Experiences of Providing Care to Their Children With Cancer

The effect of pediatric cancer and its treatment are overwhelming-these effects are multifaceted and felt by the entire family unit throughout the diagnosis and treatment process. Children experience a plethora of effects as a result of the treatment process; however, it is imperative to remember that a pediatric cancer diagnosis affects parents physically, emotionally, and psychologically as well. While much of the pediatric cancer treatment occurs at the hospital or in clinics, parents are often faced with additional caregiving responsibilities at home, and in many cases, it is mothers who provide care to their children, while also attempting to care for the siblings of their ill children. This secondary data analysis examines the caregiving responsibilities of mothers from Southern Ontario, Canada, during the time from diagnosis to after their children's pediatric cancer treatment. Three subthemes emerged from the overall theme of caregiving: (1) "We tried to do as much as we could outside of the clinic," (2) "I had to be there for everything," and (3) "Most of the time we relied on other people." Each will be discussed in turn. The findings from this work provides insight to health care professionals on how to create or improve the current supports and resources provided to caregivers of children with cancer.

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Parent Perceptions on Transfers to Pediatric Emergency Departments and the Role of Telemedicine

Objective: Real-time audiovisual consultation (telemedicine) has been proven feasible and is a promising alternative to interfacility transfer. We sought to describe caregiver perceptions of the decision to transfer his or her child to a pediatric emergency department and the potential use of telemedicine as an alternative to transfer.

Methods: Semistructured interviews of caregivers of patients transferred to a pediatric emergency department. Purposive sampling was used to recruit caregivers of patients who were transferred from varying distances and different times of the day. Interviews were conducted in person or on the phone by a trained interviewer. Interviews were recorded, transcribed, and analyzed using modified grounded theory.

Results: Twenty-three caregivers were interviewed. Sixteen (70%) were mothers; 57% of patients were transported from hospitals outside of the city limits. Most caregivers reported transfer for a specific resource need, such as a pediatric subspecialist. Generally, caregivers felt that the decision to transfer was made unilaterally by the treating physician, although most reported feeling comfortable with the decision. Almost no one had heard about telemedicine; after hearing a brief description, most were receptive to the idea. Caregivers surmised that telemedicine could reduce the risks and cost associated with transfer. However, many felt telemedicine would not be applicable to their particular situation.

Conclusions: In this sample, caregivers were comfortable with the decision to transfer their child and identified potential benefits of telemedicine as either an adjunct to or replacement of transfer. As hospitals use advanced technology, providers should consider families' opinions about risks and out-of-pocket costs and tailoring explanations to address individual situations.

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Correlates of Subjective Caregiver Strain in Caregivers of Youth Evaluated in a Pediatric Psychiatric Emergency Room

Background: Although caregiver burden is relevant to the outcome for psychiatrically ill youth, most studies have focused on caregiver burden in the community or research settings. Therefore, we aimed at evaluating the subjective caregiver strain (SCS) at the time of presentation of youth to a pediatric psychiatric emergency room (PPER), assessing potential correlates to provide leads for improvements in formal support systems.

Methods: In this retrospective cohort study, the internalized, externalized, and total SCS were assessed in caregivers of youth <18 years of age consecutively evaluated at a PPER during a 1 year period using the Caregiver Strain Questionnaire. Sociodemographic and a broad range of clinical data were collected during the PPER visit using a 12-page semistructured institutional evaluation form. The Appropriateness of Pediatric Psychiatric Emergency Room Contact scale, incorporating acuity, severity and harm potential, was used to rate appropriateness of the visit.

Results: In caregivers of 444 youth, the internalized SCS was significantly higher than the externalized SCS (p < 0.001). Multivariable analyses indicated that higher total and externalized SCS were associated with disruptive behavior or substance abuse/dependent disorder diagnosis, presenting complaint of aggression, and discharge plan to the police. Higher total and internalized SCS were associated with lower child functioning, whereas total and internalized SCS were lower in adopted children. In addition, higher externalized SCS was associated with investigator-rated inappropriateness of the emergency visit, presenting complaint of defiance, and a lack of prior psychiatric ER visits.

Conclusions: High levels of CS in PPER highlight the necessity to adhere to existing guidelines regarding the inclusion of caregivers' perceptions into comprehensive psychiatric assessments. The particularly high strain in caregivers of children with externalizing disorders and in families with low-functioning youth may need to prompt PPER staff to provide efficient information on appropriate treatment options for these children and on support facilities for the parents.

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The relationship between barriers to care, caregiver distress, and child health-related quality of life in caregivers of children with cancer: A structural equation modeling approach

The current study examined the relationship between demographic variables, treatment factors, and perceived barriers to care to both caregiver distress and caregiver-reported child health-related quality of life in caregivers of children diagnosed with cancer utilizing path analysis. Parental distress is examined as a potential mediator between barriers to care and income, as well as child age and caregiver-reported health-related quality of life (HRQOL). The final model demonstrated close fit to the data. Family income and perceived barriers to care demonstrated direct effects on caregiver distress. Child age, treatment intensity, severity of illness, and caregiver distress also demonstrated direct effects on caregiver-reported HRQOL. These results suggest a significant relationship between burden of care, caregiver functioning, and caregiver-reported child outcomes and support the transactional relationship between caregiver and child functioning.

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The Implementation of Parent–Child Interaction Therapy for the Treatment of Tourette Syndrome and Disruptive Behavior

A diagnosis of Tourette syndrome (TS) can confer a plethora of negative outcomes including impaired psychosocial functioning, academic difficulties, disruptive behavior, and mood dysregulation. Further, children diagnosed with TS can engender immense amounts of burden and stress experienced by their caregivers which can put strain and tension on the parent–child relationship. Uncovering efficacious treatments for improving the quality of life for children diagnosed with TS and their families represents both a great challenge as well as a chief concern for professionals working with this population. The present case study describes the provision of parent–child interaction therapy for addressing behavioral problems in a 5-year-old boy diagnosed with TS. Results suggest improvements in child compliance, decreases in disruptive behaviors, and decreases in certain symptomatology associated with TS. Treatment implications for working with youth with TS are described in detail. 

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A Study to Assess the Quality of Life (QOL) Among Parents of Children with Acute Lymphoblastic Leukemia (ALL) Attending Oncology Out Patient Department (OPD) In Selected Hospital of Kolkata, West Bengal, India

Introduction: Acute Lymphoblastic Leukemia (ALL) is the most common childhood cancer. The leukemia affects not only the quality of life (QOL) of children but also their caregivers. This study aimed to identify the Quality of Life of parents of children with ALL and to find out the association between QOL of parents of children with ALL and the selected demographic variables.

Methods: A descriptive study was conducted to assess the QOL among parents of children with ALL. Non-probability purposive sampling technique was followed to select 70 parents of children with ALL attending oncology Outpatient Department in selected hospitals of Kolkata, West Bengal. Semi-structured interview was conducted and the 'Adult Carer Quality of Life (ACQOL)', the standardized questionnaire was used to assess the quality of life.

Results: The study findings revealed that majority (71.43%) of the parents were mother, maximum (77.14%) parents were belonged to the 30-40 years of age group, majority (42.86%) of the parents spent more than 60 hours per week for caring. It was found that majority of the clients 48 (68.57%) had perceived their quality of life as 'Mid-range'. There was a significant association between QOL and monthly family income and time (in hours) spent for caring per week.

Conclusion: The study was believed to be a helpful guide for future study on assessment of Quality of Life of any other caregivers in a large sample for better generalization.

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Therapeutic endings: Reflections on the termination of counselling-based research relationships among patients with cystic fibrosis and their caregivers

Some time and temporarily scholars suggest that separation is one of the most arduous of human experiences. Given what is often a long history of unpleasant relationship endings, the clients of therapy themselves may be particularly susceptible to painful ruptures. Informed by a qualitative approach, I describe and explain how 10 Canadian children living with cystic fibrosis and their caregivers felt at the end of a research-based counselling support programme. At the programmes' end, the participants reluctantly but unquestioningly accepted the decision. However, they expressed their desire for ongoing and continuous therapeutic opportunities to help them manage weighty emotional issues, such as living with grief and loss. I theorize the findings using time and temporality scholarship. Although academics and clinicians regard them as separate pillars, I suggest that participants experience considerable overlap between "research" and practice". Further, I propose that researchers and clinicians pay attention to therapeutic endings as an important issue in research. Finally, using a time and temporality lens, I use the findings to discuss how therapeutic work might better be regarded as occurring in the space of psychological time, rather than linear time. In so doing, it is evident that time and temporality are critical to how young people with CF and their families experience therapeutic endings. 

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Parent moral distress in serious pediatric illness: A dimensional analysis

Background: Moral distress is an important and well-studied phenomenon among nurses and other healthcare providers, yet the conceptualization of parental moral distress remains unclear.

Objective: The objective of this dimensional analysis was to describe the nature of family moral distress in serious pediatric illness.

Design and methods: A dimensional analysis of articles retrieved from a librarian-assisted systematic review of Scopus, CINAHL, and PsychInfo was conducted, focusing on how children, parents, other family members, and healthcare providers describe parental moral distress, both explicitly through writings on parental moral experience and implicitly through writings on parental involvement in distressing aspects of the child’s serious illness.

Ethical considerations: To promote child and family best interest and minimize harm, a nuanced understanding of the moral, existential, emotional, and spiritual impact of serious pediatric illness is needed. The cases used in this dimensional analysis come from the first author’s IRB approved study at the Children’s Hospital of Philadelphia and subsequent published studies; or have been adapted from the literature and the authors’ clinical experiences.

Findings: Three dimensions emerged from the literature surrounding parent moral distress: an intrapersonal dimension, an interpersonal dimension, and a spiritual/existential dimension. The overarching theme is that parents experience relational solace and distress because of the impact of their child’s illness on relationships with themselves, their children, family, healthcare providers, their surrounding communities, and society.

Discussion: Elucidating this concept can help nurses and other professionals understand, mitigate, or eliminate antecedents to parental moral distress. We discuss how this model can facilitate future empirical and conceptual bioethics research, as well as inform the manner in which healthcare providers engage, collaborate with, and care for families during serious pediatric illness.

Conclusion: Parent moral distress is an important and complex phenomenon that requires further theoretical and empirical investigation. We provide an integrated definition and dimensional schematic model that may serve as a starting point for future research and dialogue.

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The Association between Poverty and Family Financial Challenges of Caring for Medically Complex Children

More than 500,000 children in the United States live with medical complexity. Their families assume responsibility for care and are directly affected by the associated financial costs. In this retrospective, nonexperimental study of children with medical complexity (CMC) and their families, greater than 50% of families experienced financial challenges and left employment to care for CMC. Poverty level was significantly related to financial challenges. Considerations for including family financial challenges into clinical practice, nursing administration, and health policy are offered.

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Parenting in Serious Pediatric Illness: A Mixed Methods Study (GP768)

Objectives: Describe how parents prioritize parenting tasks and goals for their seriously ill and healthy children Illustrate how the process of trading-off one child's needs to meet those of another can contribute to parents' distress in serious pediatric illness.

Importance: Nearly two-thirds of children requiring palliative care services have siblings, thus parents must consider their children's various needs. Exploring parenting in serious pediatric illness and palliative care provides insight into parents' challenges and sources of distress, as well as opportunities for support.

Objective(s): The objective of this study was to describe parenting seriously ill children and their healthy siblings.

Method(s): Concurrent, cross-sectional, mixedmethods study to describe challenges parents face prioritizing tasks and goals for each child with qualitative data, compare parents' tasks and goals for seriously ill children and healthy siblings with quantitative data using a discrete choice experiment of parenting attributes, and describe parenting in terms of the process of prioritizing tasks and goals for all children in the family.

Results: Participants included 31 parents of seriously ill children who have healthy siblings and were admitted to a children's hospital. Qualitative interviews revealed how parents managed children's needs and their perceptions of the toll it takes. Quantitative data revealed parents prioritized ''making sure my child feels loved'' highest for ill and healthy children. Other goals for healthy siblings focused on maintaining emotional connection and regularity within the family and for ill children focused on illness management. Mixed methods analysis revealed parents engaged in a process of decision-making and tradingoff competing demands by considering needs which ultimately transformed the meaning of parenting.

Conclusion(s): Parental attempts to balance family needs may prompt them to trade-off one child's needs in order to meet those of another, even if this does not align with their parenting goals or perceived duties. This discrepancy may lead parents to believe they are not fulfilling their definition of ''being a good parent.'' Impact. Without understanding the various duties among which parents feel pulled to fulfill, providers may have an incomplete picture of family life. Future research can examine trade-offs and associated effects and how to support parent problem-solving and decision-making around trade-offs.

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The effectiveness of parental distraction during children's acute pain: The moderating effect of socioeconomic status

Background: Parental responses to children's pain shape how children interpret and cope with pain symptoms through parental modelling and operant conditioning. Evidence suggests that parental distraction is effective in reducing children's acute pain responses, but findings are inconsistent across pain tolerance, intensity and unpleasantness, and are limited to samples of primarily middle and upper-middle class families. Although socioeconomically disadvantaged families may have fewer psychological resources to cope with pain, no studies have examined whether the utility of parent distraction varies by family socioeconomic status (SES). The current study tested the hypothesis that relations between parental distraction and acute pain responses in children vary by family SES, with children from higher versus lower SES families experiencing more substantial benefits.

Methods: Children's pain symptoms and parents' use of verbal distraction during a cold pressor task were examined in a community sample of 530 twin children aged 7-12 years old and their primary caregivers.

Results: Parental distraction was positively associated with children's pain tolerance and unrelated to intensity and unpleasantness, but these associations are qualified by significant moderation. In families with higher SES, parental distraction was an effective technique in children's pain management, associated with more pain tolerance and less pain intensity and unpleasantness. However, for families with lower SES, these same benefits were not present.

Conclusions: Findings suggest that the effectiveness of parental distraction for children's acute pain may depend on family SES.

Significance: Study findings suggest that the effects of parental distraction on children's responses to an acute pain task vary by family SES. Although parental distraction may be effective for higher SES children, further research is needed to identify whether and why distraction may not be beneficial for lower SES families. 

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Impacts of caring for a child with the CDKL5 disorder on parental wellbeing and family quality of life

Background: Although research in this area remains sparse, raising a child with some genetic disorders has been shown to adversely impact maternal health and family quality of life. The aim of this study was to investigate such impacts in families with a child with the CDKL5 disorder, a newly recognised genetic disorder causing severe neurodevelopmental impairments and refractory epilepsy.

Methods: Data were sourced from the International CDKL5 Disorder Database to which 192 families with a child with a pathogenic CDKL5 mutation had provided data by January 2016. The Short Form 12 Health Survey Version 2, yielding a Physical Component Summary and a Mental Component Summary score, was used to measure primary caregiver's wellbeing. The Beach Center Family Quality of Life Scale was used to measure family quality of life. Linear regression analyses were used to investigate relationships between child and family factors and the various subscale scores.

Results: The median (range) age of the primary caregivers was 37.0 (24.6-63.7) years and of the children was 5.2 (0.2-34.1) years. The mean (SD) physical and mental component scores were 53.7 (8.6) and 41.9 (11.6), respectively. In mothers aged 25-54 years the mean mental but not the physical component score was lower than population norms. After covariate adjustment, caregivers with a tube-fed child had lower mean physical but higher mean mental component scores than those whose child fed orally (coefficient = -4.80 and 6.79; p = 0.009 and 0.012, respectively). Child sleep disturbances and financial hardship were negatively associated with the mental component score. The mean (SD) Beach Center Family Quality of Life score was 4.06 (0.66) and those who had used respite services had lower scores than those who had not across the subscales.

Conclusions: Emotional wellbeing was considerably impaired in this caregiver population, and was particularly associated with increased severity of child sleep problems and family financial difficulties. Family quality of life was generally rated lowest in those using respite care extensively, suggesting that these families may be more burdened by daily caregiving.

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Abuse and neglect of people with multiple sclerosis: A survey with the North American Research Committee on Multiple Sclerosis (NARCOMS)

Background: An estimated 100,000 Americans with advanced multiple sclerosis (MS) are at risk of mistreatment, yet we lack national prevalence data on abuse and neglect. Our objective was to determine the incidence and prevalence of caregiver abuse and neglect among U.S. adults with advanced MS.

Methods: Through an anonymous telephone survey with the North American Research Committee on Multiple Sclerosis (NARCOMS), we administered the validated Scale to Report Emotional Stress Signs - Multiple Sclerosis (STRESS-MS) and other study measures to 206 U.S. adults who had unpaid caregivers because of MS-related disability.

Results: 54.9% of respondents disclosed undergoing some form of mistreatment since first requiring caregiving by a family member or friend, including psychological abuse (44.2%), financial abuse (25.2%), neglect (16.5%), physical abuse (11.2%) or sexual abuse (8.3%). Many had experienced multiple forms of mistreatment. Mistreated respondents reported less social support, more alcohol use, and higher levels of fatigue and cognitive impairment. Daily caregiving increased mistreatment risk. Caregivers with mental illness were 13 times more likely to be abusive or neglectful. Poor premorbid relationships with caregivers nearly tripled mistreatment risk, while any significant alcohol use history by people with MS or caregivers doubled risk.

Conclusions: In a nationwide survey, over 50% of American adults with advanced MS reported mistreatment by caregivers.

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Rewards of parenting children and adolescents with spinal cord injuries

Study Design: Mixed-method study.; Objectives: Describe caregiver perspectives on the rewards of parenting youth with spinal cord injury (SCI) and explore the relationships between rewards and child/caregiver demographic characteristics and child psychosocial outcomes.; Setting: Data collection occurred at three pediatric specialty hospitals within a single hospital system in the United States. 

Methods: Self-identified primary caregivers (n=178) of children aged 1-18 years answered the question: 'What has been most rewarding in parenting a child with SCI'? and completed a questionnaire about their child's health-related quality of life (HRQOL). Participants aged 7-18 years (n=134) also completed tools assessing their community participation, anxiety, depression and HRQOL.

Results: Four reward themes emerged: Enhanced Resilience (for example, resilience in my child, self and family), Caregiver-Child Relationship, Connecting with Others, and Learning. Caregivers of children with lower self-reported school and overall psychosocial HRQOL were more likely to report Enhanced Resilience in their child. Caregivers whose children had fewer depressive symptoms, lower levels of participation and who were older at injury and interview felt rewarded by an enhanced Caregiver-Child Relationship. Caregivers of children with a broader context of participation and higher school and psychosocial HRQOL reported Connecting with Others. Finally, unemployed caregivers and those with less education were more likely to report Learning.

Conclusions: Caregivers reported a variety of rewards from parenting their children with SCI, and several relationships emerged between rewards and demographics and child psychosocial outcomes. Future research should further examine the positive experiences of caregivers and whether focusing on strengths might yield better long-term outcomes for children with SCI.

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The Effect of Barkley's family-oriented program on the burden of care on families of children with attention deficit-hyperactive disorder

Background: Attention deficit-hyperactive disorder (ADHD) is the most common behavioral disorders during childhood whose treatment is greatly dependent on families; therefore, families of such children should improve their relation with them so that they could enjoy their lives. Hence, this study was conducted to evaluate the effect of Barkley's family-oriented program on the burden of care on such families.

Materials and Methods: This clinical trial was conducted among 64 family care givers for children with ADHD. By simple sampling, samples passing the inclusion criteria were selected and randomly allocated into two groups of control and intervention. The intervention group received Barkley's family education program through 9 sessions; the control group participated in 3 group sessions and expressed their problems and experiences. Data were collected and analyzed using the Zarit Burden Interview.

Results: Burden of care was gradually reduced through the study in the intervention group, however, the mean score of burden of care did not have a significant reduction in the control group.

Conclusions: Because Barkley's family-oriented program was able to reduce the burden of care in families of children with ADHD, it is recommended to develop similar programs and evaluate them through various studies.

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Pediatric Hearing Aid Management: Parent-Reported Needs for Learning Support

Objectives: The aim of this study was to investigate parent learning and support needs related to hearing aid management for young children, and factors that influence parent-reported hours of hearing aid use.

Design: A cross-sectional survey design was used to collect survey data in seven states. The child's primary caregiver completed a demographic form, a questionnaire to explore parent learning and support needs as well as their challenges with hearing aid use, and the patient health questionnaire to identify symptoms of depression. Three hundred and eighteen parents completed the questionnaires.

Results: Responses were analyzed for 318 parents of children (M = 23.15 months; SD = 10.43; range: 3 to 51) who had been wearing hearing aids (M = 15.52; SD = 10.11; range: <1 to 50 months). Even though the majority of parents reported receiving the educational support queried, approximately one-third wanted more information on a variety of topics such as loaner hearing aids, what their child can/cannot hear, financial assistance, how to meet other parents, how to do basic hearing aid maintenance, and how to keep the hearing aids on their child. The most frequently reported challenges that interfered with hearing aid use (rated often or always) were child activities, child not wanting to wear the hearing aids, and fear of losing or damaging the hearing aids. Forty-two percent of parents reported that, on good days, their child used hearing aids all waking hours. Multiple regression was used to compare the effect on parent-reported typical hours of hearing aid use based on good days for the variables of (1) presence of depressive symptoms for the parent, (2) child age, (3) family income, (4) primary caregiver education level, (5) presence of additional disabilities for the child, (6) degree of hearing loss, and (7) length of time since the child was fitted with hearing aids. There were statistically significantly fewer hours of reported hearing aid use when parents reported mild to severe symptoms of depression, lower income, less education level, and when children had mild hearing loss or additional disabilities.

Conclusion: Although parents reported overall that their needs for hearing aid education and support had generally been met, there were important suggestions for how audiologists and other service providers could better meet parent needs. Hearing aid use for young children was variable and influenced by a variety of factors. Understanding parent experiences and challenges can help audiologists more effectively focus support. Audiologists are more likely to meet the needs of families if they take care to provide access to thorough and comprehensive education and ongoing support that is tailored to address the unique needs of individual families.

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Medical alert card: a valuable tool in the management of Hirschsprung's-associated enterocolitis from parental perspective

Purpose: Awareness of Hirschsprung's-associated enterocolitis (HAEC) among patient's families and medical staff can lead to prompt recognition of symptoms and earlier implementation of management. We designed an HAEC medical alert card to raise awareness of HAEC among medical staff and carers of children with Hirschsprung's disease (HD). Our aim was to investigate parental opinion on the utility of this tool.; Methods: All patients diagnosed with HD in two institutions over a period of 14 years received an HAEC alert card and were invited to answer a 1-year follow-up structured questionnaire.

Results: A total of 123 patients received an HAEC card. The response rate for the follow-up questionnaire was 62% (n = 76). The majority 96% (n = 73) of the responders considered the card useful. A total of 89% (n = 68) of patients or parents stated that they carry the card with them, while 39% (n = 30) of them have used it on 57 occasions. The majority (83%; n = 25) of these declared that, when presented, the card increased awareness among medical staff and on 53% (n = 16) occasions prompted contact with the tertiary centre.

Conclusion: The HAEC medical card was found useful by most parents of HD patients. This tool increased awareness of HAEC and improved communication between peripheral hospitals and tertiary paediatric institutions. Therefore, we feel the HAEC alert card may be used in institutions with high HD addressability.

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Longitudinal Trajectories of Caregiver Distress and Family Functioning After Community-Acquired Pediatric Septic Shock

Objectives: To identify trajectories and correlates of caregiver distress and family functioning in families of children who survived community-acquired septic shock. We hypothesized that: 1) a substantial subset of families would demonstrate trajectories of persistent elevated caregiver distress and impaired family functioning 12 months after hospitalization and 2) sociodemographic and clinical risk factors would be associated with trajectories of persistent distress and family dysfunction. 

Design: Prospective cohort.

Setting: Fourteen PICUs in the United States.

Patients: Caregivers of 260 children who survived community-acquired septic shock.; Interventions: None.

Measurements and Main Results: Caregivers completed ratings of distress on the Brief Symptom Inventory and of family functioning on the Family Assessment Device at baseline, 1, 3, 6, and 12 months after hospitalization. Results from group-based trajectory modeling indicated that 67% of the current sample was characterized by persistent low caregiver distress, 26% by persistent moderate to high distress that remained stable across 12 months (high-risk caregiver distress group), and 8% by initial high distress followed by gradual recovery. Forty percent of the sample was characterized by stable high family functioning, 15% by persistent high dysfunction across 12 months (high-risk family functioning group), 12% by gradually improving functioning, and 32% by deteriorating function over time. Independently of age, child race was associated with membership in the high-risk caregiver distress group (non-white/Hispanic; effect size, -0.12; p = 0.010). There were no significant sociodemographic or clinical correlates of the high-risk family functioning group in multivariable analyses.

Conclusions: Although the majority of families whose children survived community-acquired septic shock were characterized by resilience, a subgroup demonstrated trajectories of persistently elevated distress and family dysfunction during the 12 months after hospitalization. Results suggest a need for family-based psychosocial screening after pediatric septic shock to identify and support at-risk families.

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Qualitative Analysis of Parental Observations on Quality of Life in Australian Children with Down Syndrome

Objective: There are many challenges to health, functioning, and participation for children with Down syndrome; yet, the quality-of-life (QOL) domains important for this group have never been clearly articulated. This study investigated parental observations to identify QOL domains in children with Down syndrome and determined whether domains differed between children and adolescents.

Methods: The sample comprised 17 families whose child with Down syndrome was aged 6 to 18 years. Primary caregivers took part in semistructured telephone interviews to explore aspects of their child's life that were satisfying or challenging. Qualitative thematic analysis was implemented using a grounded theory framework to identify domains. The coded data set was divided into 2 groups (childhood and adolescence) at 3 age cut points to observe whether differences existed between the coded domains and domain elements: (1) 6 to 11 years with 12 to 18 years; (2) 6 to 13 years with 14 to 18 years; and (3) 6 to 15 years with 16 to 18 years.

Results: Eleven domains were identified: physical health, behavior and emotion, personal value, communication, movement and physical activity, routines and predictability, independence and autonomy, social connectedness and relationships, variety of activities, nature and outdoors, and access to services. No differences in domains and domain elements were identified across childhood and adolescence.

Conclusion: Our data form a preliminary framework from which to design investigations of the child's perspectives on life quality and suggest a range of necessary supports and services.

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Caregiver mental health and HIV-infected child wellness: perspectives from Ugandan caregivers

Prior studies indicate a substantial link between maternal depression and early child health but give limited consideration to the direction of this relationship or the context in which it occurs. We sought to create a contextually informed conceptual framework of this relationship through semi-structured interviews with women that had lived experience of caring for an HIV-infected child while coping with depression and anxiety symptoms. Caregivers explained their role in raising healthy children as complex and complicated by poverty, stigma, and isolation. Caregivers discussed the effects of their own mental health on child well-being as primarily emotional and behavioral, and explained how looking after a child could bring distress, particularly when unable to provide desired care for sick children. Our findings suggest the need for investigation of the reciprocal effects of child sickness on caregiver wellness and for integrated programs that holistically address the needs of HIV-affected families.

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Enablers of adherence to clinic appointments for children attending an antiretroviral clinic in Northern Nigeria: Perspectives of caregivers and care providers

Background: Nigeria has the highest burden of paediatric HIV infection, and the success of control efforts in the country is crucial to the global control of the HIV epidemic. However, defaults from schedules of care pose a threat to paediatric HIV control in Nigeria. This study was conducted in a pioneer facility for the implementation of the National HIV Prevention and Treatment Programmes.

Objective: The objective of this study was to explore factors that facilitate adherence to clinic appointments from perspectives of child caregivers and service providers.; Methods: This is a qualitative study using in-depth, face-to-face interviews conducted in 2016. Thirty-five participants were purposely sampled to comprise types of caregivers of HIV-exposed/infected children receiving care and from categories of service providers. The interviews were audio recorded, transcribed, thematically analysed and presented using a socioecological model.

Results: The themes that emerged from participants' narratives included advanced education, affluence and residing close to the clinic at the intrapersonal level. Stable family dynamics and support, HIV status disclosure and being a biologic parent or grandparent as caregiver emerged at the interpersonal level. At the community level, disclosure and support were identified, while at the health facility level, positive staff attitude, quality of healthcare and peer support group influence were factors identified to facilitate regular clinic attendance.

Conclusion: The factors that enable retention of children in care are multidimensional and intricately connected. Programme improvement initiatives should include regular assessment of clients' perspectives to inform implementation of strategies that could reinforce caregiver confidence in the health system. 

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Effect of a Videoconference-Based Online Group Intervention for Traumatic Stress in Parents of Children With Life-threatening Illness: A Randomized Clinical Trial

Importance: A substantial proportion of parents whose child is diagnosed with a life-threatening illness experience high levels of distress that can lead to long-term mental health difficulties. This can affect the child's recovery.

Objective: To evaluate the efficacy of an acceptance and commitment therapy-based group intervention, delivered using videoconferencing, in reducing posttraumatic stress symptoms (PTSS) in these parents.

Design, Setting, and Participants: This study was a randomized clinical trial of an intervention for parents with elevated acute stress symptoms. It was a single-site study conducted in a tertiary pediatric hospital in Australia. Parents of children aged 0 to 18 years admitted for a life-threatening illness or injury to the oncology, cardiology, or pediatric intensive care departments were eligible. Participants were screened for eligibility within the first month after diagnosis or admission and then were randomized to the intervention group or the waiting list control group 4 to 10 months after diagnosis or admission. Recruitment commenced January 2014, and final postintervention follow-up was completed in February 2018. Data analysis was performed from July to September 2018.

Interventions: Treatment was a psychological acceptance and commitment therapy-based group therapy program called Take a Breath, which consisted of a 6-session parent-mediated psychological intervention delivered via online videoconferences over the course of 8 weeks. Waiting list control participants received treatment as usual and were offered the intervention 3 months after randomization.

Main Outcomes and Measures: The primary outcome was PTSS, as measured by the Posttraumatic Stress Disorder Checklist-Version 5 (total score range, 0-80, with higher scores indicating greater symptom severity). The PTSS was measured both before and immediately after the intervention. Changes in psychological skills taught within the intervention were also evaluated, including acceptance, mindfulness, values-based living, and psychological flexibility.

Results: Of 1232 parents who were assessed for eligibility, 313 were randomized; 161 were allocated to the waiting list control group, and 152 were allocated to the intervention group. Of those allocated, 44 parents in the waiting list group and 37 in the intervention group completed the postintervention questionnaire and were analyzed (81 participants total; mean [SD] age, 37.17 [6.43] years). Sixty-five participants (80.2%) were women, 48 participants (59.3%) were married, and 40 participants (49.4%) lived in rural or regional areas, or in a different state. In addition, 24 parents (29.6%) were in the cardiology illness group, 32 parents (39.5%) were in the oncology group, and 25 parents (30.9%) were in the pediatric intensive care unit group. The intervention group demonstrated significantly greater improvements in PTSS compared with the waiting list group (Cohen d = 1.10; 95% CI, 0.61-1.59; P = .03). The mean Posttraumatic Stress Disorder Checklist-Version 5 scores decreased from 31.7 (95% CI, 27.0-36.4) to 26.2 (95% CI, 21.8-30.7) in the waiting list control group and from 23.3 (95% CI, 18.6-28.1) to 17.8 (95% CI, 13.8-21.8) in the intervention group.

Conclusions and Relevance: The findings of this study support the use of acceptance and commitment therapy to reduce PTSS in parents of very ill children, regardless of diagnosis. These findings also suggest that a brief, group format using a videoconferencing platform can be used effectively to access hard-to-reach populations, particularly fathers and caregivers living in nonmetropolitan areas.

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Challenges Following Hospital Discharge for Children With Medical Complexity

Objectives: The transition from hospital to home is a period of risk, particularly for children with medical complexity. Our aim was to identify and address discharge challenges through execution of postdischarge phone calls.

Methods: In this prospective study, we designed and executed a postdischarge phone call for patients discharged from an inpatient complex care team between May and November 2018. The call included dichotomous and open-ended questions to identify challenges regarding health status, follow-up appointments, medications, home nursing, medical supplies and/or equipment, and discharge instructions. These were recorded in the electronic health record. Details regarding identified challenges and corrective actions were categorized by 2 reviewers and adjudicated by a third reviewer if disagreement occurred.

Results: Descriptive statistics were used to summarize these findings. Sixty-seven phone calls were completed within 1 week of discharge. Two-thirds of calls identified at least 1 challenge, and more than one-third of calls identified 2 or more challenges for a total of 90 challenges. The most common challenges involved health status (26.7%), follow-up appointments (21.1%), and medications (20%). The majority of challenges were addressed by either caregivers or the multidisciplinary team, with the exception of home nursing challenges.

Conclusions: Discharge challenges were commonly identified by caregivers of children with medical complexity. The majority of postdischarge challenges were addressed, with some addressed by families themselves. These results can inform health care providers about challenges to anticipate and suggest future interventions to mitigate anticipated challenges for a safe discharge and transition of care for these at-risk patients. 

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Burden on parents of children with haemophilia: The impact of sociodemographic and child's medical condition

Aims and Objectives: To describe the perceived burden on parents of children with severe or moderate haemophilia and the impact of sociodemographic aspects and the child's medical condition on this.

Background: Parents of children with haemophilia face a multitude of demands. The child needs frequent intravenous injections, hospital visits, extra supervision and care. The child's illness and related management might have psychosocial effects on the parents.; Design: A multicentre, cross-sectional study.

Methods: Caregiver burden was evaluated in 102 parents of children with haemophilia, using the HEMOCAB questionnaire which consists of 54 items divided into 13 domains which are to be answered on a 5-point Likert scale. To assess the impact of sociodemographic aspects and clinical data on parental burden, linear regression analyses were undertaken. The study followed the STROBE checklist throughout the research process.

Results: Greater burden was seen in parents of children with past or present inhibitors, in parents of younger children, if a family member administered the clotting factor and in parents of children with overweight/obesity. No significant differences in burden were observed for type of haemophilia, if the child had bleeding in the past 12 months, if the child self-infused, had another family member with haemophilia or if the parent had more children.

Conclusions: Parental perceived burden can be negatively affected by the child's medical condition; our results underline that healthcare professionals need to be aware of increased parental burden if the child is young, has or had inhibitors and has overweight/obesity.

Relevance to Clinical Practice: More psychosocial support from the healthcare professionals needs to be directed towards parents of younger children and particularly the parents of young children with inhibitors, thus decreasing the parental burden. Parental burden may be reduced if healthcare professionals more actively treat overweight and refer children to appropriate specialists. 

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Reaching Independence Through Forced Learning: Learning Processes and Illness Management in Parents of Children Affected by Hemophilia

Hemophilia is a complex condition to manage, especially for parents to newly diagnosed children. This grounded theory study explores parents’ learning processes and illness management in daily life during the first year after the start of their child’s treatment. Using a longitudinal qualitative design, eight parents of four children were interviewed repeatedly during 12 to 14 months. The core category, reaching independence through forced learning, reflected the parents’ learning process and their experiences of the challenges during the first year after start of treatment. Incentives for learning were characterized by a longing to reach independence and regain control of one’s life situation. The emerging key incentive for learning was a desire to become independent of health care professionals. Early home treatment reduced the impact of the illness, and by supporting parents in different ways during the learning process, health care professionals can promote the parents’ trajectory toward independency.

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Impact of childhood Dravet syndrome on care givers of patients with DS, a major impact on mothers

Background: The aim of this study was to understand the impact of Dravet syndrome (DS) on patients with Dravet syndrome and their families, with a focus on the social and economic impact on both mothers and fathers.

Methods: A French language on-line survey was distributed (October 2014-January 2015) for completion by caregivers of patients aged <18 years with DS. The survey was hosted on the French Dravet Syndrome Alliance website, and the survey link was provided to patients and caregivers during clinics at the Necker Hospital (Paris, France).

Results: Survey responses were available for 91 patients (median age 7.6 years; 81.6% SCN1A mutation positive). Total seizure frequency was >2 per week for 16.1% of patients, 1-8 per month for 55.2% and < 1 per month for 28.7%; tonic-clonic and myoclonic were the most frequent seizure types. Patients showed various degrees of intellectual disability and DS had a high impact on concentration and school learning in 70.1% and 80.5%. In addition, patients showed appetite disorders in 73.6%, sleep disorders in 72.4% and behavior disorders in 62.1%. Most parents were married (80.5%) with higher rates than the French general population (53.5%). Educational achievement and socio-professional categories for the parents were higher than observed in the French general population, while monthly net income was similar. Preparation of medication was generally done by the mother and father (46.0% of patients) or the mother only (37.9%). Most caregivers reported very low or no difficulty with treatment preparation and low or no risk of error. Parents typically spent <30 min per day on treatment preparation and administration and around 4 h per week for attending therapy appointments. Although most patients and parents were perceived to have good general health, mothers had a worse perception of their own general health than fathers. Compared with fathers, mothers reported a greater impact of caring for a child with DS on their social life, relationships with family and friends, time and energy, and professional life. 

Conclusion: Families caring for a child with DS experience considerable social and economic impact, with an apparent greater burden of care on the mother than the father.

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Perception of impact of Dravet syndrome on children and caregivers in multiple countries: looking beyond seizures

Aim: To assess the relevance and generalizability across countries of concepts of the impact of Dravet syndrome beyond seizures, as recognized by families.

Method: Caregivers of children with Dravet syndrome in four countries (Australia [n=8]; USA, UK, and Italy [all n=4]) participated in 1-hour qualitative telephone interviews, identifying key Dravet syndrome concepts. Interviews were recorded, transcribed, and, where necessary, translated into English for thematic analysis. Conceptual saturation was assessed and findings compared to the previously developed French conceptual disease model.

Results: The most common seizure types reported by caregivers were tonic-clonic, absence, or focal-impaired awareness (localized/partial). Fever and physical activity were the most commonly reported triggers. Patient-relevant impacts included impairment in cognition, motor skills, communication, social skills, and behavioural functioning. Caregivers consistently reported negative social, physical, and family impacts. Concepts identified in the interviews showed similarity with the French conceptual model. Minor differences between countries are likely to reflect variations in health care systems.

Interpretation: Findings in Italy, Australia, UK, and USA confirm that the key impacts of Dravet syndrome on children and caregivers identified in France are generalizable across countries. Key symptom and impact concepts relevant to children and parents should be targeted as critical outcomes in new therapy evaluations.

What This Paper Adds: Relevance of the impact of Dravet syndrome on children and caregivers was confirmed across countries. Patient and caregiver-relevant Dravet syndrome impacts contribute to poorer health-related quality of life. Indirect seizure impacts were reported to be as important as direct impacts. Country-specific differences in concepts probably reflect differences in health care systems. 

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Psychosocial issues in erythropoietic protoporphyria - the perspective of parents, children, and young adults: A qualitative study

Erythropoietic protoporphyria (EPP) and X-linked protoporphyria (XLP) are rare photodermatoses, generally presenting in childhood with severe and painful phototoxicity. EPP has been reported to negatively affect quality of life (QoL), but there is limited information on the psychosocial issues faced by patients and families. To address this, an online focus group study was conducted to explore the perspective of parents of children with EPP, and young adults and children with EPP. Five focus groups were conducted in a semi-structured format, with moderator-led discussions exploring the impact on QoL. Three focus groups included parents of children with EPP, one with children aged 10-11 years, and another with young adults aged 24-25 years, for a total of 24 participants. Thematic data analysis showed that parents experience guilt for being unable to protect their children and frustration with the current state of knowledge of EPP. Parents also admitted that the disease can lead to stress within family members which is difficult to manage. Young adults expressed embarrassment over having to explain the disease to others. They reported that the teenage years were the most difficult to navigate; however, they learned to adapt to their disease as they grew older. Children expressed that they had limited understanding of their disease and wished they were told what symptoms to expect by physicians earlier in life. Our findings emphasize the significant impact on QoL for these families and a lack of age appropriate information for children with EPP. These findings can help improve counseling and support resources for patients and caregivers.

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An exploration of caregiver burden for children with nodding syndrome (lucluc) in Northern Uganda

Background: Caregivers of patients with chronic illnesses are often uncompensated for work that is physically demanding, time consuming and emotionally and economically draining. This is particularly true for caregivers of children with nodding syndrome, an emergent neurological disorder of unknown etiology in resource poor settings in Africa. We aimed to explore perceptions of caregivers regarding challenges that a typical caregiver faces when caring for a child with nodding syndrome.

Methods: We used a qualitative exploratory study design with focus group discussions and in-depth interviews to collect data. We analyzed data using the qualitative analysis software package of NVivo and thematic query building.

Results: Emergent themes centered on burden of care with emotional agony as the most prominent. Subthemes reflecting the burden of care giving included child and caregiver safety concerns, burnout, social isolation and rejection, and homicidal ideation. Caregivers also complained of physical and financial constraints associated with the care of children with nodding syndrome.

Conclusions: The findings point to a high burden of care for caregivers of children with nodding syndrome and suggests the need to incorporate community-based psychosocial and mental health care services for the caregivers of affected children into the national health system response.

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"I feel so bad but have nothing to do." Exploring Ugandan caregivers' experiences of parenting a child with severe malaria and subsequent repeated uncomplicated malaria

Background: Severe malaria in children is often associated with long-term behavioural and cognitive problems. A sizeable minority of children go on to experience repeated malaria due to the high transmission and infection rates in the region. The purpose of this study was to explore caregivers' experiences of parenting a child with a history of severe malaria followed by repeated episodes of uncomplicated malaria in comparison to healthy community children.

Methods: Thirty-one caregivers were enrolled in the study. These included caregivers of children previously exposed to severe malaria and who had experienced repeated uncomplicated malaria attacks (SM with RMA, n = 15), caregivers of children exposed to severe malaria who did not experience repeated episodes (SM, n = 10), and caregivers of healthy community children (CC, n = 6) were purposively selected.

Results: Thematic-content analysis generated eight areas of concern, six of which were noted only by caregivers of children with SM or SM with RMA: (1) a sense of helplessness; (2) challenges with changes in behaviour; (3) responses to a child's behaviour; (4) family life disruptions, including breakdown of relationships and inadequate male-spouse involvement in child care; (5) disagreements in seeking healthcare; (6) societal burden; and two by caregivers of children with SM, SM with RMA and also CC; (7) concern about academic achievement; and, (8) balancing work and family life.

Conclusions: The study findings suggest that severe malaria, especially when followed by repeated malaria episodes, affects not only children who have the illness but also their caregivers. The effects on caregivers can decrease their social functioning and isolate them from other parents and may disrupt families. Interventions to support caregivers by counselling the ongoing problems that might be expected in children who have had severe malaria and repeated episodes of malaria, and how to manage these problems, may provide a way to improve behavioural and mental health outcomes for those children and their caregivers.

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Handle the Autism Spectrum Condition during Coronavirus (COVID-19) Stay at Home Period: Ten Tips for Helping Parents and Caregivers of Young Children

COVID-19 has become pandemic [[1]] and many government decrees have declared restrictive measures in order to prevent its wider spread. In this situation the handling of young children with special needs such as autism spectrum condition (ASC) could be challenging for families and caregivers. Shared Video Game and/or Internet Sessions with Parents Video games and the internet are extremely attractive for children with ASC but they could become an absorbent interest [[12]], especially in this period when children are called to stay at home.

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Partnering to Prepare Families of Children Who Are Technology-Dependent For Home Care

In 2017, NewYork-Presbyterian Phyllis and David Komansky Children's Hospital/Weill Cornell Medical Center was the Partnership Award recipient, for its innovative "Simulation Discharge Program (SDP)," a new patient education initiative that helps family/caregivers of technologydependent children prepare for hospital discharge (see Figure 2).[...]of her own experience, Courtney understood how difficult a hospital stay can be for families, and she initially focused on providing support to families whose children were hospitalized.In addition to Courtney Nataraj and Dr. Rodriguez, the team included a pediatric emergency medicine physician who is Director of Weill Cornell Medicine NewYorkPresbyterian Simulation Center; a pediatrician who is Director of Quality, Patient Safety, and Family Engagement; and a pediatric pulmonologist who is Director of the Weill Cornell Pediatric Sleep and Breathing Disorder Center; and several representatives from the hospital's Pediatric Ear, Nose and Throat, Nursing, and Social Work Departments.[...]many staff who had worked with the family were concerned the parents would never be able to take their daughter home, and believed it was inevitable that she would go to a long-term care facility.

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Determinants of care efficiency in a group of Polish parents raising children with different developmental disorders: a cross-sectional study

Objectives: Care efficiency of family can be determined by many factors such as mental and physical health status of family members and their socioeconomic situation. Raising children with disabilities is a burdening and stressful situation for their caregivers. This article examines determinants of care efficiency in a group of Polish parents raising children with developmental disorders.

Methods: The cross-sectional study was conducted in 9 Polish schools for disabled children located in Cracow. Questionnaire that included the Caregiver Burden Scale and the Scale Efficiency of Care was completed by 213 mothers and 30 fathers. During the data analysis parametric tests (e.g. ANOVA) and nonparametric tests (e.g. a Mann–Whitney U test, Kruskal–Wallis test) were used.

Results: Parents' care efficiency and burden of care were on an average level. Sociodemographic variables such as gender, age, place of residence, education and family structure were not related to the care efficiency. The relationship with housing and material conditions of the respondents was shown. The statistical analysis showed the relationship between the level of parents' care efficiency and all subscales of Caregiver Burden Scale. Parents who demonstrated a higher level of care efficiency experienced lower level of burden in areas such as General Strain, Isolation, Disappointment, Emotional Involvement and Environment.

Conclusions: Disability of a child reduces caring potential of a family. Parents experience more physical and mental fatigue, which aggravates their disappointment. It is important to make precise diagnosis of parents' care problems and implement an individualized program to help a family.

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Examining the impact of COVID-19 in ethnically diverse families with young children with intellectual and developmental disabilities

Background: The COVID-19 pandemic introduced challenges to families with young children with developmental delays. Beyond the widespread concerns surrounding illness, loss of employment and social isolation, caregivers are responsible for overseeing their children's educational and therapeutic programmes at home often without the much needed support of professionals.

Method: The present study sought to examine the impact of COVID-19 in 77 ethnically, linguistically and socioeconomically diverse families with young children with intellectual and developmental disabilities (IDDs) in California and Oregon, who were participating in larger intervention studies. Parents responded to five interview questions about the impact of the pandemic, services for their child, silver linings or positive aspects, coping and their concerns about the long-term impact of the pandemic.

Results: Parents reported that their biggest challenge was being at home caring for their children with the loss of many essential services. Parents reported some positive aspects of the pandemic, especially being together as a family. Although there were positive aspects of the situation, many parents expressed concern about long-term impacts of the pandemic on their children's development, given the loss of services, education and social engagement opportunities.

Conclusion: Results suggest that parents of young children with IDD report significant challenges at home during the pandemic. Professional support, especially during the reopening phases, will be critical to support family well-being and child developmental outcomes. 

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Bereavement support after the death of a child with cancer: implications for practice

The effects of bereavement are unique and support must be individually tailored. The role of the general practitioner (GP) in paediatric cancer palliative care is wide-ranging and challenging, yet little is known about offered bereavement support in this context. We carried out an in-depth secondary analysis of text relating to bereavement support from a semi-structured interview study exploring GPs’ and parents’ experiences. Findings highlight the importance of early GP-initiated face-to-face contact with parents, exploring opportunities for innovative practice and maintaining close collaboration with hospital-based teams. A co-ordinated, equitable and sustainable approach to bereavement support may help address identified GP knowledge deficits and time-pressures.

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Caregiver Decisional Conflict Before and After Consultation About Gastrostomy Tube Placement

Objectives: Families describe decision-making about gastrostomy tube (g-tube) placement as challenging. We measured caregiver decisional conflict before and after initial g-tube consultation to evaluate the potential benefit of a decision aid and feasibility in testing it.;

Methods: Families presenting for initial consultation about g-tube placement completed the decisional conflict scale (DCS) at 1 or 2 of 3 time points: before consultation, after consultation, and after viewing a video. The decision support consultation was a 2-hour structured meeting with a pediatric hospitalist, nurse practitioner, and dietitian that was focused on clarifying the indication, feasibility, safety, and family values around tube placement. The video described decision-making and lived experiences of families with tube feeding.

Results: We measured the decisional conflict of 61 caregivers. Preconsultation decisional conflict scores were high (mean = 38.7), but there was substantial variation between families (SD = 19.4). Baseline scores did not vary between clinically relevant subgroups. Postconsultation DCS scores were lower (17.9 and SD = 13.5 for consult alone; 12.7 and SD = 13.2 for consult with video). Three caregivers (7.7%) of families had residual decisional conflict scores >37.5, the threshold conventionally associated with decision delay.

Conclusions: Measuring decisional conflict among caregivers deciding about pediatric g-tube is feasible during the clinical encounter. Residual decisional conflict after our institution's current decision support consultation model (with or without an additional video) was low, so development of an additional structured decision aid is not warranted. Further study of preconsult DCS variability across different clinical subgroups may help identify families benefiting from additional decisional support. 

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Examining the Relationships Among Child and Caregiver Asthma-Related Illness Representations, Medication Adherence, and Asthma Control in Black and Latino Children

Introduction: The Common Sense Model (CSM) posits that Illness Representations (IRs) are a patient's beliefs and expectations about an illness and that IRs guide health behavior (Leventhal, Brissette, & Leventhal, 2003). This study aimed to examine possible links between youth asthma IRs and disease-related outcomes ( controller medication adherence, asthma control, and lung function) in a sample of black and Latino youth with asthma. Caregiver IRs were also included to examine possible relationships between family-level characteristics and asthma outcomes.

Methods: Black and/or Latino adolescent-caregiver dyads (N=104) were recruited in the Bronx, New York. All children had asthma and a recent controller medication prescription. CSM belief domains were used to guide analyses for associations between asthma IRs and outcomes. For example, a Timeline subscale included beliefs about the expected duration of asthma and whether it is chronic or episodic in nature. Discrepancies between caregiver and child beliefs were also examined ( e.g. discrepancy Timeline IRs ). Measures included: Asthma Illness Representation Scale for Children (C-AIRS); No Symptoms, No Asthma Belief Scale (No Sx); Asthma Control Test (C-ACT and ACT); and the Medication Adherence Report Scale for Asthma (MARS-A). Primary analyses examined relationships between child asthma outcomes with: ( 1) child IRs, (2) caregiver IRs, and (3) child-caregiver discrepancy IRs.

Results: Child participants were balanced in gender (52.9% male) and race/ethnicity (55.8% Latino) with a mean age of 13 years. Caregivers were primarily female (92.3%) with a mean age of 41.5 years. ( 1) Child IRs were not significantly associated with child asthma outcomes. This was true for main effects, moderation analyses, and indirect effects (mediation analyses). (2) Child age moderated the relationship between caregiver IRs and child asthma control on: a) average IRs (F(5, 98) = 10.39,p < .001, R2 = .347), and b) a Timeline subscale (F(4, 99) = 14.02, p < .001, R2 = .362). Surprisingly, these relationships were in the opposite direction of hypotheses. For example, for younger children (b = 0.970) asthma control was worse with caregivers who had professional model IRs ( e.g. asthma is chronic), but better with lay model caregiver IRs (e.g. asthma is acute/episodic). (3) Child-caregiver IR discrepancy was significantly associated with medication adherence (F(3, 99) = 6.04, p = .001, R2 = .155). As expected for families with discrepant beliefs, medication adherence was higher with the combination of caregiver professional/child lay IRs (i.e., caregivers endorsed beliefs aligned more with the professional model compared to children who endorsed IRs more aligned with the lay model). Exploratory analyses showed an interaction between discrepancy Timeline IRs and child age on asthma control(F(6, 96) = 7.22, p < .001, R2 = .311). In younger children (b = - 0.270), asthma control was better for caregiver lay/child professional IRs. This relationship appeared to be reversed in older youth (b = 0.307) with better asthma control for caregiver professional/ child lay IRs.

Discussion: The current analyses do not support a simple, direct link between child asthma beliefs with behaviors (adherence) and/or health outcomes. Significant relationships were only observed within the context of the caregiver-child dyad. Child age was an important factor in the relationship between IR discrepancy and asthma control. The relationship between medication adherence and discrepant beliefs between child and caregiver supports inclusion of both caregiver and child. This may better capture developmental and familial influences ( or social context) when measuring child beliefs, disease management, and health outcomes.

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CHAMP+ Thailand: Pilot Randomized Control Trial of a Family-Based Psychosocial Intervention for Perinatally HIV-Infected Early Adolescents

Within Asia, HIV prevalence is highest in Thailand, including thousands of children and adolescents. Care for children born with HIV [perinatal transmission of HIV (PHIV)] will need to focus on adolescents for the foreseeable future. Thai PHIV adolescents experience significant mental health and psychosocial challenges, including treatment adherence. Yet, few, if any, comprehensive interventions for them exist. CHAMP+, an evidence-based intervention adapted for Thailand, was evaluated with a pilot randomized control trial at four HIV clinics. Eighty-eight dyads of 9- to 14-year-old PHIV young adolescents/caregivers were randomized to CHAMP+ or standard of care (SOC). Eleven cartoon-based sessions were delivered over 6 months. Participants completed baseline, 6-month (postintervention), and 9-month surveys, measuring youth outcomes (e.g., mental health and adherence), contextual factors (e.g., demographics and caregiver factors), and self- and social-regulation factors (e.g., HIV knowledge and youth-caregiver communication). Multi-level modeling to account for clustering within individuals was used to assess longitudinal changes within and between groups. All families randomized to CHAMP+ completed the intervention. Although the study was not statistically powered to detect differences in treatment effects, the CHAMP+ group significantly improved at 6 months in youth mental health and adherence, HIV knowledge, youth-caregiver communication, internalized stigma, and HIV-related social support, with most improvements sustained at 9 months and significantly better improvements than the SOC group on a number of outcomes. High levels of baseline viral suppression highlight the importance of reaching these young PHIV adolescents at a period of lower risk before adherence and other challenges emerge. Designed to be delivered with limited cost/resources, CHAMP+ Thailand holds scale-up potential.

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Implementation of a Standardized Seizure Action Plan to Improve Communication and Parental Education

Background: Quality measures have highlighted the need for efficient treatment of status epilepticus. One strategy is prevention of refractory status epilepticus through individualized seizure action plans. As a quality improvement project, we implemented a standardized seizure action plan to improve the delivery of key information to families of children with seizures.

Methods: We implemented our standardized seizure action plan using plan-do-study-act cycles. The plans were distributed to caregivers of children (zero to 18 years) seen for seizures in outpatient neurology clinics. Families were given questionnaires at the beginning of each visit to gauge their understanding of their child's diagnosis, treatment, and comfort in emergency seizure management. Provider utilization rates and questionnaire responses were analyzed over time to assess the effectiveness of the action plan.

Results: Provider utilization rates of the standardized seizure action plan improved from 0% to 58.1%. At baseline, 31.5% caregivers indicated that they did not know their child's epilepsy syndrome or seizure type, 29.6% did not know the emergency protocol at their child's school, 9.2% did not know when to consider a seizure an emergency or what to do if their child's seizure had become an emergency, and 17.5% were not comfortable administering rescue medication. Caregivers who received the action plan had improved responses at subsequent visits (P < 0.001), whereas those who did not receive the standardized form did not improve.

Conclusions: Standardizing provision of seizure action plans in pediatric neurology clinic can improve key elements of caregiver education regarding epilepsy diagnoses and seizure emergencies. 

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A Latent Class Analysis to Identify Variation in Caregivers' Preferences for their Child's Attention-Deficit/Hyperactivity Disorder Treatment: Do Stated Preferences Match Current Treatment?

Objectives: To investigate variation in caregiver preferences for their child's attention-deficit/hyperactivity disorder (ADHD) care and to determine if their stated preferences align with current care management.

Methods: Caregivers of a child aged 4-14 years and in care for ADHD were recruited from pediatric outpatient clinics and advocacy groups across the state of Maryland. Participants completed a survey collecting demographics, the child's treatment, and caregiver preferences-elicited using a best-worst scaling experiment (case 2). Latent class analysis was used to identify distinct preference segments and bivariate analyses were used to compare the association between segment membership with what the child was currently receiving for their ADHD.

Results: Participants (n = 184) were predominantly White (68%) and the child's mother (84%). Most children had ADHD for 2 or more years (79%). Caregiver preferences were distinguished by two segments: continuous medication (36%) and minimal medication (64%). The two groups had very different preferences for when medication was administered (p < 0.001), but they had similar preferences for provider-oriented and non-medication interventions (p > 0.05 for the caregiver behavior training, provider communication, provider specialty, and out-of-pocket costs). One third of the sample did not receive the preferred individualized education program and 42% of the minimal medication group reported using medication 7 days a week all year round.

Conclusions: Although behavior management training and school accommodations aspects of an ADHD care plan are more important to caregivers than evidence-based medication, fewer families had access to educational accommodations. Further research is needed to clarify how stated preferences for care align with treatments used in actual practice settings.

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Experiences of Pediatric Parenting Stress and Family Support for Caregivers of Children with Special Health Care Needs or Developmental Disabilities

Serving children with special health care needs (SHCN) or developmental disabilities (DD) and their families is an important public health issue (Healthy People, 2020). The prevalence of children with special health care needs or developmental disabilities is significant and increasing (Boyle et al., 2011). Caregivers of children with SHCN or DD and their families demand clinical and research attention given the potential range of health and well-being outcomes that are associated with their children’s developmental or medical complexity. The purpose of this dissertation study was to use a quantitative descriptive research design to examine the experiences of pediatric parenting stress and family support for a sample of caregivers of children representing diverse special health care needs or developmental disabilities. Data were collected at four agencies that provide a range of services to children with SHCN or DD and their families. The data for 167 caregiver participants were used for the preliminary and main statistical analyses. Statistical analyses including pearson product moment correlations, independent-samples t-tests, one-way analysis of variance (ANOVA) tests, internal consistency reliability analyses, and factor analyses. Present study findings revealed that (a) the Pediatric Inventory for Parents (PIP) and Family Support Scale (FSS) measures did not appear to be internally consistent for this study sample; (b) the existing PIP and FSS factor structures did not fit the present study data well; (c) the present study sample had higher levels of pediatric parenting stress and lower levels of family support overall as compared to previous study samples of caregivers for children with chronic conditions; (d) the current study sample’s experiences of pediatric parenting stress and family support differed significantly by several caregiver, child, and family correlates; and (e) the current study sample’s levels of pediatric parenting stress and family support had a positive, significant association. Study findings emphasized the potential roles of stress and support in the caregiving experiences for children with SHCN or DD. Recommendations for further study of this caregiving population and their families are discussed.

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Discordant retention of HIV-infected mothers and children: Evidence for a family-based approach from Southern Mozambique

It is often assumed that children and their caregivers either stay in care together or discontinue together, but data is lacking on caregiver-child retention concordance. We sought to describe the pattern of care among a cohort of human immunodeficiency virus (HIV) infected children and mothers enrolled in care at the Manhiça District Hospital (MDH).This was a retrospective review of routine HIV clinical data collected under a larger prospective HIV cohort study at MDH. Children enrolling HIV care from January 2013 to November 2016 were identified and matched to their mother's HIV clinical data. Retention in care for mothers and children was assessed at 24 months after the child's enrolment. Multinomial logistic regression was performed to evaluate variables associated with retention discordance.For the 351 mother-child pairs included in the study, only 39% of mothers had concordant care status at baseline (23% already active in care, 16% initiated care concurrently with their children). At 24-months follow up, a total of 108 (31%) mother-child pairs were concordantly retained in care, 88 (26%) pairs were concordantly lost to follow up (LTFU), and 149 (43%) had discordant retention. Pairs with concurrent registration had a higher probability of being concordantly retained in care. Children who presented with advanced clinical or immunological stage had increased probability of being concordantly LTFU.High rates of LTFU as well as high proportions of discordant retention among mother-child pairs were found. Prioritization of a family-based care model that has the potential to improve retention for children and caregivers is recommended.

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Examining the experiences of fathers of children with a life-limiting illness

Families who have a child diagnosed with a life-limiting illness (LLI) face substantial challenges resulting from the complexity and devastating impact of the condition and potential closeness of death. The experiences of fathers of a child with LLI have been understudied; therefore, this study explored the stresses, experiences, and strategies of these fathers, including their perceptions about support needs. Based on grounded theory, in-depth semi-structured interviews were conducted with 18 fathers of children with LLI. Six fathers had experienced the death of their child. The overarching themes were stresses, means of coping, and perceived needs for support. Generally. fathers in this study struggled relative to discursive and internalized notions of fathers as providers and protectors for their children, combined with an inability to ease their child's vulnerability to LLI. Participants were engaged in the care of their child with LLI, but several felt marginalized by health care providers in care planning and staff/family communication. Some fathers recognized and valued their support network while others had few supports. Some described personal growth and desired to help other fathers. Practice implications and recommendations include renewed application of family-centered care, overcoming presumptions about fathers' roles, and recognizing the impact of LLI beyond physical health.

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Patient and Parent Perspectives on Improving Pediatric Asthma Self-Management Through a Mobile Health Intervention: Pilot Study

Background: Asthma is a common chronic pediatric disease that can negatively impact children and families. Self-management strategies are challenging to adopt but critical for achieving positive outcomes. Mobile health technology may facilitate self-management of pediatric asthma, especially as adolescents mature and assume responsibility for their disease.

Objective: This study aimed to explore the perceptions of youths with high-risk asthma and their caregivers on the use of a smartphone app, Smartphone Asthma Management System, in the prevention and treatment of asthma symptoms, possible use of the app to improve self-management of asthma outside traditional clinical settings, and the impact of asthma on everyday life to identify potential needs for future intervention development.

Methods: Key informant interviews were completed with parent-child dyads post participation in an asthma management feasibility intervention study to explore the perceptions of users on a smartphone app designed to monitor symptoms and medication use and offer synchronous and asynchronous provider encounters. A thematic qualitative analysis was conducted inductively through emergent findings and deductively based on the self-determination theory (SDT), identifying 4 major themes.

Results: A total of 19 parent-child dyads completed the postintervention interviews. The major themes identified included autonomy, competence, relatedness, and the impact of asthma on life. The participants also shared their perceptions of the benefits and challenges associated with using the app and in the self-management of asthma. Both children and parents conveyed a preference for using technology to facilitate medication and disease management, and children demonstrated a strong willingness and ability to actively engage in their care.

Conclusions: Our study included support for the app and demonstrated the feasibility of enhancing the self-management of asthma by youth in the community. Participant feedback led to intervention refinement and app improvements, and the use of the SDT allowed insight into motivational drivers of behavioral change. The use of mobile apps among high-risk children with asthma and their parents shows promise in improving self-management, medication adherence, and disease awareness and in reducing overall disease morbidity. 

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Factors that influence family and parental preferences and decision making for unscheduled paediatric healthcare - systematic review

Introduction: Health systems offer access to unscheduled care through numerous routes; however, it is typically provided by general practitioners (GPs), by emergency medicine doctors in in emergency departments (EDs) and by GPs in out-of-hours GP services such as practitioner cooperatives. Unscheduled healthcare constitutes a substantial portion of healthcare delivery. A systematic review was conducted to establish the factors that influence parents' decision making when seeking unscheduled healthcare for their children. The systematic review question was "What are the factors that influence the decision making of parents and families seeking unscheduled paediatric healthcare?"

Method: Five databases (CINAHL, PubMed, SCOPUS, PsycInfo, EconLit) and four grey literature databases (Proquest, Lenus, OpenGrey, Google Scholar) were searched. The titles and abstracts of 3746 articles were screened and full-text screening was performed on 177 of these articles. Fifty-six papers were selected for inclusion in the review. Data relating to different types of unscheduled health services (namely primary care, the emergency department and out-of-hours services) were extracted from these articles. A narrative approach was used to synthesise the extracted data.

Results: Several factors were identified as influencing parental preferences and decision making when seeking unscheduled healthcare for their children. A number of the included studies identified pre-disposing factors such as race, ethnicity and socioeconomic status (SES) as impacting the healthcare-seeking behaviour of parents. Unscheduled healthcare use was often initiated by the parent's perception that the child's condition was urgent and their need for reassurance. The choice of unscheduled service was influenced by a myriad of factors such as: waiting times, availability of GP appointments, location of the ED, and the relationship that the parent or caregiver had with their GP.

Conclusion: Policy and planning initiatives do not always reflect how patients negotiate the health system as a single entity with numerous entry points. Altering patients' behaviour through public health initiatives that seek to improve, for instance, health literacy or reducing emergency hospital admissions through preventative primary care requires an understanding of the relative importance of factors that influence behaviour and decision making, and the interactions between these factors.

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Long-term issues and supportive care needs of adolescent and young adult childhood brain tumour survivors and their caregivers: A systematic review

Objective: Long-term issues following diagnosis and treatment of a childhood brain tumour often become apparent as the survivor enters adolescence and young adulthood. Their caregivers may additionally face long-term impacts on their emotional and psychological functioning. This review synthesised evidence on the issues and supportive care needs of adolescent and young adult (AYA) survivors of a brain tumour diagnosed in childhood and their caregivers.

Methods: Electronic databases were searched up until September 2017. All studies reporting on issues or needs of childhood brain tumour survivors (aged 14-39) and their caregivers were included. Narrative synthesis methods were used to summarise, integrate, and interpret findings.

Results: Fifty-six articles (49 studies) met the inclusion criteria. Social issues (ie, isolation and impaired daily functioning) were most commonly reported by survivors, followed by cognitive (ie, impaired memory and attention) and physical issues (ie, endocrine dysfunctions and fatigue). Survivors experienced poorer social functioning and sexual functioning and were less likely to be employed or have children, when compared with other AYA cancer survivors. Caregivers experienced reduced support as the survivor moved into young adulthood. Caregivers reported uncertainty, increased responsibilities, and problems maintaining their own self-well-being and family relationships. Few studies reported on supportive care needs. Survivors expressed a need for better educational support and age-specific psychosocial services.

Conclusions: Surviving a childhood brain tumour can be particularly challenging for AYA survivors and their caregivers. Robust structured research is needed to identify specific support needs of both survivors and their caregivers and how these can be optimally addressed. 

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Patient education for children with interstitial lung diseases and their caregivers: A pilot study

Objective: Patient education in children with rare chronic diseases like children's interstitial lung disease (chILD) remains a challenge.

Aims: To develop and evaluate a component-based educational program for individual counselling and to improve patients' and caregivers' self-efficacy and treatment satisfaction. Furthermore, to create chILD-specific educational material and assess physicians' satisfaction with the intervention as well as patients' health-related quality of life (HrQoL).

Methods: The study was conducted in two German centers for pediatric pulmonology, as a single-group intervention with pre-post-follow-up design.

Results: Participants (N = 107, age: M = 7.67, SD = 5.90) showed significant improvement of self-efficacy (self-report: t = 2.89, p < 0.01; proxy-report: t = 3.03, p < 0.01), and satisfaction (patients: t = 3.56, p = 0.001; parents t = 6.38, p < 0.001) with the medical consultations. There were no pre-post differences in HrQoL. Participants were highly satisfied with the material and the physicians with the program.

Conclusions: The chILD education-program is a promising strategy to improve patients' and their parents' self-efficacy and treatment-satisfaction. Specific effects of the intervention need to be determined in a randomized controlled trial.

Practice Implication: Healthcare providers managing pediatric patients with chILD, may choose to use a patient education-program specifically tailored to the needs of chILD patients and their families, such as the program described here, which is the first of its kind. 

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Outcomes of an enhancement study with additional psychoeducational sessions for healthy siblings of a child with cancer during inpatient family‐oriented rehabilitation

Objective: Chronic illness of a child puts healthy children of the family at risk of distress. Previous studies have demonstrated that healthy children's psychological symptoms can be reduced when the child knows more about the disease. So far, there is limited evidence of the effectiveness of psychoeducational interventions for healthy children.

Aims: To compare the effectiveness of an inpatient family‐oriented rehabilitation program with vs without additional psychoeducational sessions for healthy children of families with children with cancer.

Patients and methods: We performed a controlled study in 4 German family‐oriented rehabilitation clinics. The outcomes of n = 73 healthy children (mean age: M = 9.55; SD = 3.14; range: 4–18), who participated in 5 additional psychoeducational sessions, were compared with the outcomes of n = 111 healthy children (mean age: M = 8.85; SD = 3.28; range: 4–17), who underwent the usual inpatient rehabilitation program. Primary outcomes were the healthy children's cancer‐specific knowledge and their emotional symptoms. Secondary outcomes were family satisfaction and quality of life.

Results: Intention‐to‐treat analyses showed that both groups improved significantly from preintervention to postintervention. Improvements comprised knowledge about cancer (F(1,174) = 11.03, p < 0.001), self‐reported emotional symptoms (F(1,135) = 31.68, p < 0.001), and parent‐proxy‐reported emotional symptoms (F(1,179) = 37.07, p < 0.001). The additional psycho‐educational program did not significantly enhance the outcomes. The same pattern of significant improvement in both conditions emerged for all secondary outcomes. The immediate effects of the intervention persisted until 2 months after discharge from the rehabilitation program.

Conclusions: Inpatient family‐oriented rehabilitation is effective in improving multiple psychosocial outcomes of healthy children in families which have a child with cancer. Additional psycho‐educational sessions did not show any substantial additional improvement.

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Perceived Stress among Caregivers of Children with Autism Spectrum Disorder: A State-Wide Study

Background: Caregivers of children with autism spectrum disorder (ASD) experience increased stress and more significant negative caregiving consequences than those with typically developing children. There is a lack of studies specifically focusing on stress among caregivers with ASD children in Asian countries. The current study examines levels of perceived stress and factors associated with it among caregivers in Kelantan, Malaysia.

Methods: In a cross-sectional study, the Malay version of the Perceived Stress Scale (PSS) was administered to 227 caregivers of children with ASD. The caregivers were recruited from ASD databases in four tertiary hospitals in Kelantan and a meeting was set up during the child's follow-up in the clinic. Multiple linear regression analyses were applied to determine the predictors of perceived stress.

Results: The mean total perceived stress score was 20.84 (4.72). This was considered higher than average. Higher perceived stress was significantly predicted among caregivers who live far from the health institution, caregivers who do not own transportation to bring the child to the treatment center, and caregivers who have an ASD child with a learning disability.

Conclusion: Caregivers of an ASD child perceived significant stress while taking care of their children. Institutions should alleviate the factors that were predicted to increase the caregivers' perceived stress to improve the quality of the lives of children and ASD families as a whole.

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Perspectives of Afghan refugee mothers on the experience of caring for a child with cancer: a qualitative analysis

Background: Cancer in children causes many challenges for the family. When a refugee family experiences it, its impacts may be different and more specific considerations for care may be needed.

Aims: This study aimed to explore the experiences of Afghan mothers living in the Islamic Republic of Iran who had a child with cancer.

Methods: This was a qualitative study, conducted in 2017, of Afghan refugee women with children diagnosed with cancer and referred to a cancer referral hospital in Tehran; they were selected through purposive sampling. Face-to-face, semi-structured and in-depth interviews were conducted for data collection until data saturation was reached. Conventional content analysis was done. MAXQDA 10 was used for organizing the data.

Results: Nine Afghan mothers were interviewed. They were aged 24-44 years and the children were aged 2-9 years. A primary theme called "passive acceptor" was found with five subthemes: chronic suffering, health issues, lack of skills, maladaptive coping and enthusiasm. The mothers were struggling to cope with the challenges of caring for a child with cancer both financially, physically and emotionally.

Conclusion: In spite of many issues in common with similar groups in other countries, Afghan mothers appear to need to greater assistance when it comes to seeking help and understanding for the care for their child with cancer, possibly because of cultural barriers to self-empowerment. Tailored care plans are recommended for Afghan refugee mothers in the Islamic Republic of Iran.

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Supporting the family of a child with a genetic condition

The health visitor has a fundamental role in supporting families with a child who has a genetic condition to encourage physical and emotional wellbeing, says Amy Noakes.

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Family support and family and child-related outcomes among families impacted by disability in low- and middle-income countries: A scoping review

There is a growing interest in understanding the relationship between family support and family or child-related outcomes in high-income countries. However, this has received little attention in low- and middle-income countries. The purpose of this review was to explore the relationship between family support and family and child-related outcomes among families affected by disability in low- and middle-income countries. We conducted a scoping review of five databases using search terms related to 'family', 'support', 'child', and 'disability'. A total of 13 articles met the inclusion criteria. Families of children with disabilities received most of their support from informal sources (e.g. immediate family members, friends, and parents support groups). Parental stress was most often evaluated as the family outcome and was negatively linked to emotional support and childcare assistance from immediate family members. Movement and mobility therapy offered by rehabilitation professionals was found to improve children's walking patterns. Positive attitudes from community members were key facilitators to participation of children with disabilities in social activities. The review calls for urgent attention to research in low- and middle-income countries, particularly the extent of support families are receiving from government-led support systems.

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Unsung heroes, flying blind-A metasynthesis of parents' experiences of caring for children with special health-care needs at home

Aims and Objectives: To aggregate, synthesise and interpret qualitative research studies of parents' experiences of caring for a child with special health-care needs at home.

Background: Advances in the field of medical and nursing science have ensured better survival rates for children with chronic illnesses. Many of these children have significant special health-care needs. Today parents assume a caregiver role, undertaking tasks previously provided by nurses in hospitals. As the complexity of care delivered by parents continues to develop, synthesised knowledge can provide an evidence base that will support and guide nurses when caring for these families.

Design: Metasynthesis.

Methods: Based upon a systematic search protocol, a structured literature search, covering the years 2003-2016, was conducted in five electronic databases. Ten studies were included and appraised using the Critical Appraisal Skills Program assessment tool. A metasummary and a metasynthesis were undertaken guided by the metasynthesis methodology as described by Sandelowski and Barroso (Handbook for synthesizing qualitative research. New York, NY: Springer, 2007).

Results: The results were interpreted and integrated under the overarching theme "unsung heroes, flying blind," supported by eight elucidating categories that illustrate aspects of the parents' life world.; Conclusions: The enormous burden of care can weaken the parents' will to carry on and result in a decreased ability to provide care. This can have an impact on the parents' health, family functioning and the sick child's potential health outcomes. Nurses are in a unique position to help these families and should be better prepared for the role.

Relevance to Clinical Practice: Knowledge of how parents of children with special health-care needs experience their daily lives can promote trust in nurses and guide them in their efforts to support families with children living with chronic illness.

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Family‐centred care of children and young people in the acute hospital setting: A concept analysis

Aims and objectives: To provide an operational definition of family‐centred care as it applies to hospitalised children. The objective was to provide clarification of the concept by comprehensively analysing the evidence.

Background: Terms associated with family‐centred care include partnership‐in‐care, negotiated care, parental participation/involvement in care, care‐by‐parent and child‐centred care. The absence of a universally accepted definition contributes to its inconsistent implementation.

Design and Methods: Concept analysis is acknowledged as a form of inquiry to develop the knowledge base of nursing. Rodgers' evolutionary approach to concept analysis was used as a guiding framework. The systematic literature search yielded 30 theoretical papers; the results are outlined on a PRISMA flow diagram.

Results: Surrogate terms identified include partnership‐in‐care, negotiated care and parent participation. Parental participation in care, the development of respectful and trusting partnerships, information sharing and all family members as care recipients were identified as attributes to family‐centred care. There is limited evidence that family‐centred care enhances the child's, parents' and families' experience of hospitalisation and is associated with reduced anxiety for parents.

Conclusion: There is a lack of attention to cultural and societal changes, which impact on those receiving and delivering care. While we know that family‐centred care is widely endorsed and enhances well‐being, there is a lack of empirical evidence about the impact on health outcomes for children. While children's nurses have been applying some elements of family‐centred care to their clinical practice for decades, the concept continues to evolve.Relevance to clinical practiceFurther research examining the effects of family‐centred care for children, their families, healthcare professionals and healthcare organisations reflecting cultural diversity and norms must be conducted. This research should include the effects of family‐centred care on parents caring for their child in hospital, how family‐centred care supports parents to make healthcare decisions and the outcomes of family‐centred care for children and families.

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Experiences of children with special educational needs and disabilities and their families in the United Kingdom during the coronavirus pandemic

Purpose: The purpose of this paper is to outline the experiences of children with special educational needs and disabilities (SEND) and their families during the coronavirus pandemic.

Design/methodology/approach: This paper draws on research gathered and collated by three different organisations working with families of children and young people with SEND.

Findings: There were a number of common findings across all three surveys. In particular: the rapid collapse of external support for children and families; the reduction/withdrawal of support exacerbated the stress and exhaustion already experienced by many families; it proved very difficult to establish home learning and get adequate support from schools; there was little government recognition of families' vulnerability and need for support; and, paradoxically, a significant minority of children and families reported increased well-being.

Originality/value: Findings carry clear implications both for the provision of child and family support during any further lockdowns and, more generally, in respect of government policy and funding of family support. 

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Parent-mediated interventions for promoting communication and language development in young children with Down syndrome

Background: Communication and language development are areas of particular weakness for young children with Down syndrome. Caregivers' interaction with children influences language development, so many early interventions involve training parents how best to respond to their children and provide appropriate language stimulation. Thus, these interventions are mediated through parents, who in turn are trained and coached in the implementation of interventions by clinicians. As the interventions involve a considerable commitment from clinicians and families, we undertook this review to synthesise the evidence of their effectiveness.

Objectives: To assess the effects of parent-mediated interventions for improving communication and language development in young children with Down syndrome. Other outcomes are parental behaviour and responsivity, parental stress and satisfaction, and children's non-verbal means of communicating, socialisation and behaviour.

Search Methods: In January 2018 we searched CENTRAL, MEDLINE, Embase and 14 other databases. We also searched three trials registers, checked the reference lists of relevant reports identified by the electronic searches, searched the websites of professional organizations, and contacted their staff and other researchers working in the field to identify other relevant published, unpublished and ongoing studies.

Selection Criteria: We included randomised controlled trials (RCTs) and quasi-RCTs that compared parent-mediated interventions designed to improve communication and language versus teaching/treatment as usual (TAU) or no treatment or delayed (wait-listed) treatment, in children with Down syndrome aged between birth and six years. We included studies delivering the parent-mediated intervention in conjunction with a clinician-mediated intervention, as long as the intervention group was the only group to receive the former and both groups received the latter.

Data Collection and Analysis: We used standard Cochrane methodological procedures for data collection and analysis.

Main Results: We included three studies involving 45 children aged between 29 months and six years with Down syndrome. Two studies compared parent-mediated interventions versus TAU; the third compared a parent-mediated plus clinician-mediated intervention versus a clinician-mediated intervention alone. Treatment duration varied from 12 weeks to six months. One study provided nine group sessions and four individualised home-based sessions over a 13-week period. Another study provided weekly, individual clinic-based or home-based sessions lasting 1.5 to 2 hours, over a six-month period. The third study provided one 2- to 3-hour group session followed by bi-weekly, individual clinic-based sessions plus once-weekly home-based sessions for 12 weeks. Because of the different study designs and outcome measures used, we were unable to conduct a meta-analysis.We judged all three studies to be at high risk of bias in relation to blinding of participants (not possible due to the nature of the intervention) and blinding of outcome assessors, and at an unclear risk of bias for allocation concealment. We judged one study to be at unclear risk of selection bias, as authors did not report the methods used to generate the random sequence; at high risk of reporting bias, as they did not report on one assessed outcome; and at high risk of detection bias, as the control group had a cointervention and only parents in the intervention group were made aware of the target words for their children. The sample sizes of each included study were very small, meaning that they are unlikely to be representative of the target population.The findings from the three included studies were inconsistent. Two studies found no differences in expressive or receptive language abilities between the groups, whether measured by direct assessment or parent reports. However, they did find that children in the intervention group could use more targeted vocabulary items or utterances with language targets in certain contexts postinterventi n, compared to those in the control group; this was not maintained 12 months later. The third study found gains for the intervention group on total-language measures immediately postintervention.One study did not find any differences in parental stress scores between the groups at any time point up to 12 months postintervention. All three studies noted differences in most measures of how the parents talked to and interacted with their children postintervention, and in one study most strategies were maintained in the intervention group at 12 months postintervention. No study reported evidence of language attrition following the intervention in either group, while one study found positive outcomes on children's socialisation skills in the intervention group. One study looked at adherence to the treatment through attendance data, finding that mothers in the intervention group attended seven out of nine group sessions and were present for four home visits. No study measured parental use of the strategies outside of the intervention sessions.A grant from the Hospital for Sick Children Foundation (Toronto, Ontario, Canada) funded one study. Another received partial funding from the National Institute of Child Health and Human Development and the Department of Education in the USA. The remaining study did not specify any funding sources.In light of the serious limitations in methodology, and the small number of studies included, we considered the overall quality of the evidence, as assessed by GRADE, to be very low. This means that we have very little confidence in the results, and further research is very likely to have an important impact on our confidence in the estimate of treatment effect.

Authors' Conclusions: There is currently insufficient evidence to determine the effects of parent-mediated interventions for improving the language and communication of children with Down syndrome. We found only three small studies of very low quality. This review highlights the need for well-designed studies, including RCTs, to evaluate the effectiveness of parent-mediated interventions. Trials should use valid, reliable and similar measures of language development, and they should include measures of secondary outcomes more distal to the intervention, such as family well-being. Treatment fidelity, in particular parental dosage of the intervention outside of prescribed sessions, also needs to be documented.

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Tobacco smoke exposure in pediatric cystic fibrosis: A qualitative study of clinician and caregiver perspectives on smoking cessation

Objective: Tobacco smoke exposure has negative impacts on the lung health of children with cystic fibrosis (CF), yet evidence-based strategies for smoking cessation have not been tested with or tailored to CF caregivers. This qualitative study identified barriers and facilitators of smoking cessation in this population and outlined potential interventional approaches.

Methods: We conducted semi-structured interviews with CF familial caregivers who were current or former smokers, and with members of the CF care team. We asked about experiences, practices, and prerequisites for a successful program. Interviews were recorded, transcribed verbatim, and coded by two investigators. Analysis used a thematic approach guided by the PRECEDE model, which identifies predisposing (intrapersonal), reinforcing (interpersonal), and enabling (structural) factors relevant to health behaviors and programs.

Results: Seventeen interviews were conducted-eight with familial caregivers and nine with CF team members. Whereas caregivers provided greater insight into internal difficulties and motivators to quit smoking, clinicians offered more extensive input on barriers and solutions related to the clinical environment. Based on study recommendations, a successful tobacco cessation program should include (a) family education about the harms of smoke exposure for children with CF; (b) screening for exposure, ideally with biochemical verification; (c) access to trained tobacco counselors; (d) affordable pharmacotherapy; and (e) outpatient follow-up of those undergoing tobacco treatment.

Conclusion: This qualitative study revealed intrapersonal, interpersonal, and structural barriers to eliminating tobacco smoke exposure in children with CF, outlined opportunities to address these barriers, and made recommendations for a comprehensive tobacco cessation strategy. 

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Caring for a child with type 1 diabetes during COVID-19 lockdown in a developing country: Challenges and parents' perspectives on the use of telemedicine

Background and Aim: Jordan implemented abrupt and extreme lockdown measures to prevent the spread of COVID-19. This study aims to evaluate the effect of these measures on paediatric patients with type 1 diabetes in terms of acute metabolic complications and shortages in insulin and glucose measuring supplies. It also evaluates the caregivers' perceptions of the use of telemedicine during the lockdown.<bold>Methods: </bold>This is a questionnaire-based cross-sectional study. It was completed using Google forms and patients/caregivers were asked to consent if they agreed to answer.

Results: 235 patients/families participated in the study. The mean age of the patients was 10.8 years ± 3.9 years (N = 229). Twenty-four children (10.2%) needed to visit the emergency department during the lockdown period which lasted for 10 weeks. Of these, eight (3.4%) were hospitalized due to acute metabolic complications. Families (58.3%) faced insulin shortages and 14% had to ration insulin, i.e., decrease the dose, during the lockdown. Glucose monitoring strips were rationed by 43.4% of families leading to more frequent low/high glucose readings in 75.5% of children of these families. Telemedicine using phones and social media applications was utilized for communication with healthcare professionals and continuing medical care. Most of the participants (85.5%) described it as a smooth and positive experience.

Conclusions: The extreme lockdown due to COVID-19 pandemic caused insulin and glucose measuring equipment shortages in children with diabetes in Jordan. However, the use of telemedicine for providing guidance and support was perceived positively by the families.

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Understanding Barriers to Initial Treatment Engagement among Underserved Families Seeking Mental Health Services

This mixed method study examined factors associated with parents not attending their child's mental health treatment after initially seeking help for their 2-5 year old child. It was part of a larger study comparing two evidence-based treatments among low-income racial/ethnic minority families seeking child mental health services. Of 123 parents who initiated mental health treatment (71% African American or multi-racial; 97.6% low-income), 36 (29.3%) never attended their child's first treatment session. Socio-demographic characteristics, parenting stress, depression, severity of child behavior problems, and length of treatment delay from intake to first scheduled treatment session were compared for families who did and did not attend their first treatment session. Parents who never attended their child's first treatment session were more likely to live with more than 4 adults and children (p=.007) and have more depressive symptoms (p=.003). Median length of treatment delay was 80 days (IQR =55) for those who attended and 85 days (IQR =67.5) for those who did not attend their child's first treatment session (p=.142). Three themes emerged from caregiver interviews: (a) expectations about the treatment, (b) delays in getting help, and (c) ambivalence about research participation. Findings suggest the need to develop better strategies for addressing risk factors early in the treatment process and reducing the length of time families with adverse psychosocial circumstances must wait for child mental health treatment.

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Children with medical complexity: Neglect, abuse, and challenges

This review on recognizing and responding to suspected maltreatment of children with medical complexity is organized around several questions: 1) What is meant by the term, "children with medical complexity?" Does this term represent something distinct from "children with special health care needs," or "children who are medically fragile?" 2) What constitutes medical neglect of children with medical complexity? How can it be distinguished from expected and reasonable shortcomings in the care that can realistically be provided to a child? 3) How can health care providers recognize instances of "medical child abuse" in which the harm results from interventions that health care providers undertake in response to exaggerated or fabricated reports from parents or other family caregivers? 4) What are some of the challenges facing mandated reporters and members of the health care and case planning teams in recognizing and responding to suspected medical neglect or abuse of children with medical complexity? 

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The needs of siblings of children with a life-threatening illness, part 2: Psychometric validation of the IBesFEMS

Life-threatening illnesses in children have a significant impact on the lives of their brothers and sisters. Consequently, special attention must be paid to the specific needs of these siblings to help them cope with their situations. To address this issue, we developed an inventory of the needs of the adolescent siblings of severely ill children, the Inventaire des Besoins de la Fratrie d'Enfants Malades Severement (IBesFEMS) [Needs Inventory for Siblings of Critically Ill Children]. The present article describes a preliminary validation study of this new instrument. In a prospective cohort study, the 48-item instrument was administered via a website or paper to 58 siblings. Our study revealed that the measure has an estimated internal consistency of 0.96 and a temporal stability intraclass correlation coefficient ([i]ICC[/i]) of 0.86 ([i]p[/i] less than 0.01). Its convergence validity is also satisfactory. Our findings suggest that the IBesFEMS is highly relevant for pediatric palliative care clinicians and researchers. Future studies should investigate its factorial structure and predictive validities. 

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Existence, triggers, and coping with chronic sorrow: a qualitative study of caretakers of children with sickle cell disease in a National Referral Hospital in Kampala, Uganda

Background: Worldwide, sickle cell disease is recognized as one of the major causes of morbidity and mortality. Caregivers and patients with such chronic illnesses experience economic, physical, social and psychological distresses which may lead to chronic sorrow. Chronic sorrow is viewed as a normal reaction to loss, however it can progress to a pathological state such as depression if the coping styles are ineffective. Therefore, the aim of this study was to explore the existence of chronic sorrow, triggers and coping with grief related feelings among caretakers of children with sickle cell disease.

Methods: A descriptive qualitative study was conducted. Twelve in-depth interviews were conducted with eligible participants who were purposively selected. Deductive thematic analysis methods were used for data analysis.

Results: Many (9 out of 12) of the caretakers experienced chronic sorrow. The grief related feelings were triggered by health worker related, disease related and support related factors. Caretakers used both external and internal coping strategies. External support was derived from community, family and health facility. Internal coping strategies were behavioral and cognitive.

Conclusion: Caretakers of children with sickle cell disease experienced chronic sorrow and employed both internal and external coping strategies to deal with it, which could be either effective or ineffective. This study recommends that health workers should routinely screen for chronic sorrow among caretakers of children with sickle cell disease and assist caretakers to strengthen effective coping strategies to ameliorate the negative effects of chronic sorrow.

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Qualitative Content Analysis of Type 1 Diabetes Caregiver Blogs and Correlations With Caregiver Challenges and Successes

Social media increasingly reflects patient experience, especially for self-managed conditions. We examined family experience with type 1 diabetes (T1D) through qualitative analysis of blogs written by caregivers of children with T1D, survey derived from that analysis, and survey administration among T1D caregivers. Analysis of 140 blog posts and 663 associated comments identified 77 topics, which were categorized into self-management, emotional, challenges, and successes. By subcategory analysis, self-management challenges were strongly correlated between blog content and survey responses ( R = .838, P = .005), and emotional challenges were moderately correlated ( R = .415, P = .02). Emotional successes were not significantly correlated ( R = .161, P = .511), and self-management successes were too few to analyze. The range of topics and the correlations between blog expressions and survey responses highlight the potential of blog analysis to gain insight into the challenges facing families living with T1D. 

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Challenges and Successes in Raising a Child With Type 1 Diabetes and Autism Spectrum Disorder: Mixed Methods Study

Background: Self-management of type 1 diabetes (T1D) requires numerous decisions and actions by people with T1D and their caregivers and poses many daily challenges. For those with T1D and a developmental disorder such as autism spectrum disorder (ASD), more complex challenges arise, though these remain largely unstudied.

Objective: This study aimed to better understand the barriers and facilitators of raising a child with T1D and ASD. Secondary analysis of web-based content (phase 1) and telephone interviews (phase 2) were conducted to further expand the existing knowledge on the challenges and successes faced by these families.

Methods: Phase 1 involved a qualitative analysis of publicly available online forums and blog posts by caregivers of children with both T1D and ASD. Themes from phase 1 were used to create an interview guide for further in-depth exploration via interviews. In phase 2, caregivers of children with both T1D and ASD were recruited from Penn State Health endocrinology clinics and through the web from social media posts to T1D-focused groups and sites. Interested respondents were directed to a secure web-based eligibility assessment. Information related to T1D and ASD diagnosis, contact information, and demographics were collected. On the basis of survey responses, participants were selected for a follow-up telephone interview and were asked to complete the adaptive behavior assessment system, third edition parent form to assess autism severity and upload a copy of their child's most recent hemoglobin A 1c (HbA 1c ) result. Interviews were transcribed, imported into NVivo qualitative data management software, and analyzed to determine common themes related to barriers and facilitators of raising a child with both ASD and T1D.

Results: For phase 1, 398 forum posts and blog posts between 2009 and 2016 were analyzed. Common themes related to a lack of understanding by the separate ASD and T1D caregiver communities, advice on coping techniques, rules and routines, and descriptions of the health care experience. For phase 2, 12 eligible respondents were interviewed. For interviewees, the average age of the child at diagnosis with T1D and ASD was 7.92 years and 5.55 years, respectively. Average self-reported and documented HbA 1c levels for children with T1D and ASD were 8.6% (70 mmol/mol) and 8.7% (72 mmol/mol), respectively. Common themes from the interviews related to increased emotional burden, frustration surrounding the amount of information they are expected to learn, and challenges in the school setting.;

Conclusions: Caregivers of children with both T1D and ASD face unique challenges, distinct from those faced by caregivers of individuals who have either disorder alone. Understanding these challenges may help health care providers in caring for this unique population. Referral to the diabetes online community may be a potential resource to supplement the care received by the medical community. 

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Caregivers' Self-Reported Absence of Social Support Networks is Related to Treatment Abandonment in Children With Cancer

Background: Treatment abandonment (TxA) is a primary cause of therapy failure in children with cancer in low-/middle-income countries. We explored the absence of social support network (SSN), among other predictive factors, and TxA in children with cancer in Cali, Colombia.

Procedure: In this prospective cohort study, we included children diagnosed with cancer at a public university hospital. A social worker and a psychologist administered semistructured questionnaires to patients' caregivers. We extracted information from the questionnaires about social, economic, and psychological conditions of the patients' families. Outcomes were death, relapse, and TxA. Failure either to start or to continue the planned course of curative treatment for 4 weeks or more was defined as TxA. We identified events with Cali's childhood cancer outcomes surveillance system (VIGICANCER). We adjusted the hazard ratios (HRs) for potential confounders using multivariate Cox regression analyses.

Results: Among 188 patients diagnosed from January 2011 to June 2013, 99 interviews were conducted. Median age was 5 years old (range: 0.3, 14.9), 53% were male, 17% were of Colombian-Indian ethnicity, and 68% lived in rural areas. The 2-year cumulative incidence of TxA was 21% (95% confidence interval [CI]: 13, 35) and the annual proportion was 14%. The adjusted HR for the absence of SSN was 4.9 (95% CI: 1.6, 15.3).

Conclusions: We found a strong association between the absence of SSN and TxA that was independent of other covariates, including surrogate measures of wealth. Our findings highlight the imperative understanding of social ties and support surrounding children's families for planning strategies to prevent TxA. 

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Measuring the Benefits of Respite Care use by Children with Disabilities and Their Families

Purpose: The benefits of respite care in reducing the burden of caregivers of children with disabilities are well known; however, few studies have effectively quantified such benefits. The aim of the present study was to develop and validate a measure for evaluating the benefit of respite care provided to family caregivers of children with disabilities.

Design and Methods: This was a cross-sectional study. We distributed a survey questionnaire to 465 family caregivers between March and April 2017. Participants were asked to respond to items regarding benefits of respite care for themselves and their children.

Results: Data in relation to four domains (Child Development, Sense of Peace and Life Fulfillment among Caregivers, Mental Health Support for the Caregiver, and Expansion of Perspectives and Future Vision) were extracted to assess the benefits of using respite care. The full-scale Cronbach's α coefficient was 0.89 and ranged between 0.73 and 0.88 for each individual domain.

Conclusions: The newly developed measure for assessing the benefits of respite care for family caregivers of children with disabilities was highly reliable and valid.; Practice Implications: This objective tool would allow healthcare practitioners to review the quality of respite care they provide and subsequently help them identify ways to improve. 

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Estimating the Productivity Burden of Pediatric Pneumococcal Disease in Thailand

Background: Pneumococcal diseases were estimated to cause 1.6 million deaths annually worldwide in 2008, with approximately half of these occurring in children aged under 5 years. The consequences and deaths adversely impact individuals' and caregivers' work productivity.

Objectives: This study aimed to quantify the potential lifetime productivity loss due to pneumococcal diseases among the pediatric population in Thailand using productivity-adjusted life years (PALYs).

Methods: A decision analytic model was used to estimate the burden of pneumococcal diseases among the current Thai population aged 0-5 years and followed up until aged 99 years or death. Base-case analysis compared years of life and PALYs lost to pneumococcal diseases. Scenario analyses investigated the benefits of prevention with pneumococcal conjugated vaccine 13 (PCV 13). All health outcomes were discounted at 3% per annum.

Results: The base-case analysis estimated that 453,401 years of life and 457,598 PALYs would be lost to pneumococcal diseases, equating to a loss of US$5586 (95% CI 3338-10,302) million. Vaccination with PCV13 at birth was estimated to save 82,609 years of life and 93,759 PALYs, which equated to US$1144 (95% CI 367-2591) million in economic benefits. The incidence of pneumonia in those aged 0-4 years, vaccine efficacy, and the assumed period of protection were key determinants of the health economic outputs.

Conclusions: The disease and financial burden of pneumococcal diseases in Thailand is significant, but a large proportion of this is potentially preventable with vaccination.

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Corticosteroid phobia among parents of asthmatic children

Corticosteroid phobia among parents of asthmatic children. Turk J Pediatr 2018; 60: 142-146. Asthma is one of the most prevalent chronic diseases among children. Its prevalence and morbidity have been rising in recent decades. Pediatric asthma causes a significant burden on families; allergen-avoidance measures, uncontrolled disease, and disease severity which are the major cost predictors of childhood asthma in Turkey. Inhaled corticosteroids (ICS) are considered as cornerstone medications in asthma management which reduce asthma morbidity and mortality. Our aim was to address corticosteroid phobia in caregivers of asthmatic children and its impact on asthma management. Five hundred caregivers of asthmatic children were interviewed using structured questionnaire in this study. Over fifty percent of the caregivers (56.8%), most of whom (82.6%) are already aware of using corticosteroids in their anti-asthma drug regimen, mentioned that they are afraid of using them. Almost one fourth of caregivers (24.8%) made either some changes in their treatment regimen or stopped using the drugs due to corticophobia. Of the caregivers 55.2% had no idea about the side effects of corticosteroids and only 12.6% of them mentioned that they were informed by their physicians about the effects of corticosteroids. Any change in asthma treatment regimen due to corticophobia was found to be related with poor asthma control level (p: 0.004). The impact of parental information about the effects and importance of steroids given by the physicians on better asthma control was found to be highly significant (p < 0.001). That`s why physicians and health care providers should spend enough time explaining the importance of adherence to treatment in asthma management, which may help in overcoming the fear of using ICS.

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Opinions and observations of caregivers of children with cerebral palsy about changes seen after reflexology: A qualitative study

Abstract: The aim of this research was to examine the effect of reflexology on the problems of children with cerebral palsy from perspective of caregivers. Qualitative study was made after 24-session reflexology program. 12 caregivers who have 2-18 year-old children with spastic type cerebral palsy receiving special education and received reflexology. The thematic questions were determined and in-depth interviews were conducted. Themes of the study were determined as; the caregiver's views on reflexology, the effect of reflexology on health of children with CP and the caregivers' observations on child after reflexology therapy, positive and negative aspects and causes of reflexology treatment. As a results; the caregivers expressed that there were increases in self-confidence of children, improvement in walking, reduced spasticity, relaxation, decreases in constipation, and increases in communication, speech and perception after reflexology.

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Family coping: Living with the child affected by chronic disease

Objective: to identify the main difficulties of families/caregivers of coping with children's chronic condition.

Method: descriptive and exploratory study with qualitative approach, conducted with 22 caregivers of children affected by chronic diseases living in municipalities of the rural arid zone of Pernambuco State. Data were produced through semi-structured individual interviews and analyzed with the content analysis technique.

Results: the main difficulties faced by caregivers were related to changes in routine imposed by the disease and include increased attention to the child and the caregiver burden. To help in coping with the situation and keeping the hope for the future, caregivers rely on social support, especially from the family.

Conclusion: it is essential to know the difficulties experienced by caregivers in order to create strategies that help in coping with the chronic condition in childhood.

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The challenges of caring for children who require complex medical care at home: ‘The go between for everyone is the parent and as the parent that’s an awful lot of responsibility’

Background: Increasing numbers of children with complex health‐care needs are cared for at home by their family. The aim of this qualitative study was to explore the challenges experienced by families caring for children who need complex medical care at home.MethodsWe conducted a thematic analysis of eleven in‐depth interviews with parents who carry out specialist medical procedures (eg, enteral feeding, bowel washouts and tracheostomy care) for their children at home. Participants were purposely selected from an existing sample of interviews with parents whose child had abdominal surgery in the first year of life.

Results: We identified three overarching themes: (a) responsibilities of the parent, (b) impact on daily life and (c) the parent journey over time. Parents have substantial responsibilities, including performing medical procedures, managing emergencies (sometimes life‐threatening), co‐ordinating care and advocating for their child. Their responsibilities have an enormous impact on the family: going out of the home becomes a challenge, there are constant constraints on time, parents are sleep‐deprived and there are wider impacts on siblings. The third theme explores the parent journey over time as parents become experts and make sense of the new normal.

Discussion: The burden of care on families caring for children with complex medical needs is much greater than is generally understood by either multidisciplinary health‐care teams or the general public. Families need to be better prepared and supported for the responsibilities they take on and the burden of care needs to be shared by others.

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Screening for Family Psychosocial Risk in Pediatric Hematopoietic Stem Cell Transplantation with the Psychosocial Assessment Tool

Family psychosocial risk screening is an important initial step in delivering evidence-based care in hematopoietic stem cell transplantation (HCT). Establishing an evidence-based screening approach that is acceptable, reliable, and valid is an essential step in psychosocial care delivery. This is a 3-institution multimethod study. In part 1, caregivers of children about to undergo HCT (n = 140) completed the Psychosocial Assessment Tool-Hematopoietic Cell Transplantation (PAT-HCT), a brief parent report screener adapted for HCT, and validating questionnaires. Families received feedback on their risks identified on the PAT-HCT. In part 2, 12 caregivers completed a semistructured interview about their perceptions of the PAT and the feedback process. The reliability and validity of the PAT-HCT total and subscale scores were tested using Kuder-Richardson-20 (KR-20) and Pearson correlations. Thematic content analysis was used to analyze the qualitative interview data. Internal consistency for the total score (KR-20 = .88) and the Child Problems, Sibling Problems, Family Problems, and Stress Reactions subscales were strong (KR-20 >.70). Family Structure, Social Support, and Family Beliefs subscales were adequate (KR-20 = .55 to .63). Moderate to strong correlations with the criteria measures provided validation for the total and subscale scores. Feedback was provided to 97.14% of the families who completed the PAT-HCT, and the mean rating of acceptability was >4.00 (on a 5-point scale). The qualitative data indicate that families appreciate the effort to provide screening and feedback. The PAT-HCT is a psychometrically sound screener for use in HCT. Feedback can be given to families. Both the screener and the feedback process are acceptable to caregivers. 

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"Living an Obstacle Course": A Qualitative Study Examining the Experiences of Caregivers of Children with Rett Syndrome

Background: Rett syndrome has considerable effects on the quality of life of affected children, impairing everyday activities and potentially impacting the life of both the caregivers and the family. Our aim was to explore the experiences of a group of caregivers of children with Rett syndrome with regards to living and caring for their children.

Methods: We conducted a qualitative case study to examine how 31 caregivers of children with Rett syndrome perceived living with their children. Data were collected through in-depth interviews, focus groups, researchers' field notes and caregivers' personal documents. A thematic analysis was performed following the Consolidated Criteria for Reporting Qualitative Research (COREQ) guideline.

Results: The experience of being a caregiver of a child with Rett syndrome was expressed as being akin to an "obstacle course", and was described via three main themes: (a) looking for answers, with two subthemes identified, namely 'the first symptoms', and 'the need for a diagnosis'; (b) managing day to day life, with the subthemes 'applying treatments', and 'learning to care'; and (c) money matters.

Conclusions: Rett syndrome has a considerable impact on the lives of the caregivers involved. The health-care process and the management of economic resources are some of the aspects highlighted by caregivers. These findings have important implications for the planning of support services, health systems and health policies.

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Native Hawaiian Caregivers' Cultural Perspectives of Pediatric Asthma Management

Asthma remains the leading cause of chronic respiratory illness among Native Hawaiian children 0 to 17 years in Hawai'i. The National Asthma Education and Prevention Program (NAEPP) established asthma management guidelines which includes medical assessment and monitoring, education in partnership with the caregiver, control of environmental triggers, and medication adherence (National Asthma Education Prevention Program [NAEPP], 2007). However, these guidelines do not consider the worldview, health beliefs, and cultural practices of caregiver, child, and family. The purpose of this study was to describe how Native Hawaiian caregivers manage pediatric asthma, to understand which strategies are considered cultural practices, and to identify other cultural practices used to manage asthma. Eighteen interviews with self-identified Native Hawaiian caregivers of school-aged children between the age of 5 and 12 with a diagnosis of mild-persistent, moderate-persistent, or severe-persistent asthma were conducted. Interviews used a talk story approach to understand how the child's asthma was managed and to identify cultural practices the caregivers were aware of and used to manage pediatric asthma. Interviews were audio recorded and transcribed. A thematic form of inductive content analysis was used to analyze the data. Each transcript was independently reviewed and coded. The codes were then categorized and themes and subthemes emerged. Multiple coders validated the identified themes. Two overarching themes and six subthemes emerged from the analysis. The themes included asthma and its causes, physical activity, and management strategies. Native Hawaiian caregivers in this study believed that asthma was caused by heredity and environmental exposure. Asthma management strategies included using alternative therapies, responding to asthma symptoms, and preventing asthma symptoms. Awareness of cultural practices was readily discussed by caregivers. However, cultural practices such as la'au lapa'au (herbal medicine) and lomilomi (traditional massage) were seldom, if ever, used. Caregivers reported that they lacked the knowledge of and how to properly use such cultural practices as a treatment for asthma. Future research should explore the role and influence cultural beliefs have on health practices and the role and influence of the community one lives as it relates to asthma management.

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Discharge Education and Caregiver Coping of Pediatric Patients with a Tracheostomy: Systematic Review

Aim: The aim of this review was to assess and synthesize current literature evaluating caregiver education and coping after children were discharged with a tracheostomy.; Background: Tracheostomy tube placement is a transformative event for the child who receives it and the family members who care for the child. As a result, it is imperative to provide caregivers a comprehensive and effective education on how to care for the tracheostomy and how to cope with a tracheostomy.

Design: A systematic review of literature was conducted to explore practices associated with tracheostomy education among caregivers of pediatric patients with a tracheostomy.

Methods: A search of PubMed, CINAHL, and Web of Science revealed potential 501 articles using keywords, tracheostomy, tracheotomy, education, discharge, caregiver, and family coping. After reviewing them in a systematic fashion, 12 articles were identified that were pertinent to tracheostomy education.; Findings: This review of literature showed that discrepancies existed in how discharge education was provided and the lack of knowledge regarding tracheostomy care among caregivers despite formal education. Moreover, the caregivers reported variations in their coping capabilities and quality of life while caring for their children with a tracheostomy tube.

Conclusion: Literature on discharge education regarding tracheostomy management among caregivers of children with a tracheostomy tube is limited. Studies report poor coping strategies and quality of life among caregivers of children with a tracheostomy tube. Studies have significant limitations. Further research is warranted to understand the current practices with discharge education and follow-up of these patients at home settings.

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Spirituality to build resilience in primary caregiver parents of children with autism spectrum disorders: a cross-country experiment

Objectives: To examine the effect of spirituality and spiritual training on resilience in primary caregiver parents of children with autism spectrum disorders (ASD).

Methods: A cross-country pre- and post-test-based experimental design has been used. The sample of this one-year-long study comprised 1687 parents of children with ASD in 15 countries. A six-day customized spiritual lessons package was administered to the study participants. Three scales have been used: Resilience Scale (RS), Sense of Coherence Scale (29-items) (SOC-29), and Parenting and Family Adjustment Scale (PAFAS-30).

Results: Results of the pairedt-test showed that post-test RS and SOC-29 scores of the participants were higher indicating greater resilience and sense of coherence post treatment. Post-test PAFAS-30 scores were lower indicating lower dysfunction and better adjustment. Logistic regression and structural equation models showed that parents from European countries including the UK, US, Canada, and Australia, Christians, those who did three–four rounds of the spiritual lessons through the study period and those who self-practiced, had higher post-test scores. Further mothers and middle-class parents were likely to have higher post-test resilience scores. Hierarchical regression analysis showed that self-practice was the most significant predictor of participants’ post-test scores.

Conclusion: The study findings re-inforce the resilience-promoting potential of spirituality/spiritually sensitive interventions for parents of children with ASD, contingent on variations due to domicile country, religion, rounds of spiritual lessons, and self-practice as critical predictors, and sex and economic class as secondary predictors.

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Development and pilot testing of an educational intervention for parents, caregivers and teachers of children with verbal communication disabilities in Mexico

The purpose of this study was to implement and test an educational intervention aimed at training parents/caregivers and teachers in strategies to support children with verbal communication disabilities (VCDs). We carried out a descriptive observational research conducted in two phases during 2013-2014: a mixed-method diagnosis and intervention development. We used convenience sampling to select the parents/caregivers and teachers of first-to-third graders with VCDs across four public elementary schools in a suburban community in central Mexico. Diagnosis was based on questionnaires conducted with parents/caregivers (n = 38) and teachers (n = 16). The instruments focused not only on the respondents' socioeconomic characteristics and general knowledge about VCDs but also included open questions (24/42) about their common practices and support for children with VCDs. The intervention was built on data collected through the questionnaires, and was designed according to the Integral Intervention Model framework based on the ecosystemic approach. Participants were parents/caregivers and teachers of children with VCDs. Main results showed that the participants were trained in various support techniques, they gained knowledge about VCDs and changed their perception of their own ability to help children with language impairments. As an important upshot of the intervention, communication and networking among parents/caregivers and teachers increased. The main strengths of this research reside in its solid theoretical foundation and the fact that intervention design was based on the specific needs of the target group. In as much as the public health problem of VCDs in Mexico has barely been studied and has received minimal official support, it is essential to engage additional social actors, stakeholders and decision-makers in the implementation of permanent actions. Our study emphasises the importance of recognising this form of health impairment as a social responsibility and not as an individual family problem.

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Schooling in survivorship: Understanding caregiver challenges when survivors return to school

Objective: Schooling after treatment can hold challenges for survivors of childhood cancer and caregivers who may need to act as advocates on their behalf. This study seeks to understand caregiver experiences of survivor's school-related challenges. This understudied area is critical given the 85% survivor rate for those diagnosed with childhood cancer and the disproportionate risk of learning difficulties faced by those with brain tumor or who receive therapy that targets the central nervous system.

Methods: Affected caregivers participated in open-ended interviews addressing school experiences during survivorship. Following preliminary analysis using a grounded theory approach, interviewees and other stakeholders from education, medical, and foundation communities participated in focus groups. Member-check activities explored the validity of identified themes and a model derived from interview data describing schooling challenges during survivorship.

Results: Caregivers reported schooling-related experiences were often stressful and such stressors recurred during survivors' ongoing education. They reported a lack of appropriate knowledge among themselves, school staff, and clinicians about issues their survivor faced as well as concerns about communication and uncertainties about the processes required to attain appropriate services. These themes of knowledge, communication, and process issues were embedded within family approaches to coping with difficulties as well as the specific types of late effects each survivor faced.

Conclusions: The proposed model and clinical implications provide a foundation for future research and intervention development. Such work is needed to more effectively support survivors and their caregivers with difficulties that arise during schooling following treatment for childhood cancer. 

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Barriers and Facilitators to Asthma Care After Hospitalization as Reported by Caregivers, Health Providers, and School Nurses

Objectives: To develop a comprehensive understanding of the barriers and/or facilitators for asthma management for the health professionals and caregivers of children with >1 hospitalization.

Methods: Individual interviews were conducted with family caregivers and health professionals. Focus groups were conducted with school nurses. The interview and focus group guide were used to probe for barriers and facilitators of asthma management. Interviews were recorded, transcribed, and coded by using qualitative software. Themes were identified by using content analysis in the interviews and descriptive qualitative analysis in the focus groups.

Results: Caregivers ( n = 10), asthma educators ( n = 4), physicians ( n = 4), and a payer ( n = 1) were individually interviewed. School nurses were interviewed via a focus group ( n = 10). Children had a median age of 7 years, mean length of stay of 1.9 days, and 56% had a previous hospitalization in the previous 12 months. The "gaps in asthma knowledge" theme (which includes an inadequate understanding of asthma chronicity, activity restrictions, and management with controller medications) emerged as a theme for both caregivers and health professionals but with different health beliefs. School nurses reinforced the difficulty they have in managing children who have asthma in schools, and they identified using the asthma action plan as a facilitator.

Conclusions: Caregivers and health professionals have different health beliefs about asthma knowledge, which raises challenges in the care of a child who has asthma. In addition, school nurses highlight specific barriers that are focused on medication use in schools. A comprehensive understanding of the barriers and facilitators of asthma management that families experience after hospital discharge is crucial to design better efforts to support families. 

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Time burden of caring and depression among parents of individuals with cerebral palsy

Purpose: The presence of an individual with disability in a family affects the whole family. Families of individuals with cerebral palsy (CP) experience increased psychological anxiety and financial problems; specifically, parents tend to feel time pressure and struggle to maintain their social and cultural activities.

Methods: t-Tests and ANOVA with post hoc Tukey tests were used to compare caregiving time, time pressure, and depression between parents. Multivariate logistic regression analysis was used to examine the effect of caregiving time and time pressure on depression in parents.

Results: Regarding depression, 58 (38.2%) respondents scored ≥16 on the Center for Epidemiological Studies – Depression scale. Respondents supporting a preschool child spent more time than those supporting adults did; those supporting adults reported less time pressure than those supporting individuals of other ages. Caregiving time's effect on depression was not supported, whereas increased time pressure raised the risk of depression.

Conclusions: The frequency of depression among parents supporting individuals with CP exceeded preceding findings. Time pressure due to support appears to directly predict depression. Total time spent caring appears unrelated to depression. It is necessary to prepare various community and family support systems in order to relieve parental caregivers' burden and exhaustion. Interventions should focus on parents with higher time pressure than parents with high caregiving time. Physical and psychological difficulties experienced by parents supporting a child with a disability vary with the child's life stage, meaning that families' care burden partly depends on the age of the individual with disabilities. 

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Health-Related Internet Use by Informal Caregivers of Children and Adolescents: An Integrative Literature Review

Background: Internet-based health resources can support informal caregivers who are caring for children or adolescents with health care needs. However, few studies discriminate informal caregivers' needs from those of their care recipients or those of people caring for adults.

Objective: This study reviews the literature of health-related Internet use among informal caregivers of children and adolescents.

Methods: A total of 17 studies were selected from literature searches conducted in 6 electronic databases: PubMed, Cochrane, CINAHL, PsycINFO, ERIC, and EMBASE. All databases searches were limited to articles published in the years 2004 to 2014 in peer-reviewed publications. Search terms consisted of "health-related Internet use," "eHealth," "Internet use for health-related purpose(s)," "Web-based resource(s)," and "online resources," combined with informal caregiver (or "parents") of "child," "adolescent," "student," "youth," and "teen." The age range of the children receiving care was limited to younger than 22 years. Their informal caregivers were defined as persons (parents) who provided unpaid care or assistance to a child or an adolescent with health problems.

Results: Among 17 empirical studies, the majority of informal caregivers of children with medical issues were the parents. Quantitative studies (14/17, 77%) reported prevalence and predictors of health-related Internet use, while mixed-methods and qualitative studies (3/17, 24%) investigated informal caregiver perceptions of helpful health-related Internet use and barriers of use. The prevalence of health-related Internet use varied (11%-90%) dependent upon how health-related Internet use was operationalized and measured. Disease-specific information was used for decision making about treatment, while social support via virtual communities and email were used for informal caregiver emotional needs. A digital divide of Internet access was identified in lower educated minorities. Most studies had methodological challenges resulting from convenience sampling, cross-sectional surveys, lack of theoretical frameworks, or no clear definitions of health-related Internet use.

Conclusions: This study provides an important understanding of how family members use Internet-based information and support systems during child caregiving. Healthcare providers and policy makers should integrate family needs into their current practices and policies. Further rigorous research is required to design efficient and effective nursing interventions.

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Interpersonal Dyadic Influences of Pain Catastrophizing Between Caregivers and Children With Chronic Pain

Objectives: Pain catastrophizing is an important predictor of pain-related outcomes. Caregiver and child levels of catastrophizing about child chronic pain are associated cross-sectionally, yet predictive associations testing interpersonal influences within caregiver-child dyads are lacking. The present study tested caregiver and child influences on partner catastrophizing about child pain over a period of 1 month following initiation of interdisciplinary pain treatment and examined whether the change in pain catastrophizing was associated with child pain interference.

Materials and Methods: A total of 113 caregiver-child dyads (Mage=14.41) completed measures at the time of initiating care at a pediatric tertiary outpatient pain management clinic (baseline) and ∼1 month later. Caregivers and children independently reported on catastrophizing about child pain and child pain interference at baseline and 1-month follow-up.

Results: Caregiver and child pain catastrophizing decreased over 1 month following initial interdisciplinary pain evaluation, with average scores remaining in the moderate to high range. Change in caregiver, but not child, catastrophizing about child pain was predicted by partner baseline pain catastrophizing. Decreases in catastrophizing about child pain were associated with within-person improvement in ratings of child pain interference.

Discussion: In the short period following initial pain evaluation, caregivers and children evidenced reductions in pain catastrophizing, which were associated with increased child function. Findings highlight the important role of child cognitive-affective responses to pain in influencing caregiver catastrophizing about child pain. Understanding the individual contributions children and caregivers make to interpersonal pain processes will inform future family-level clinical interventions.

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Home Gastrostomy Feeding Education Program: Effects on the Caregiving Burden, Knowledge, and Anxiety Level of Mothers

Background: It is highly important for healthcare professionals to give discharge education to families to increase their knowledge of gastrostomy care and complications and to inform them about the correct behaviors. The purpose of the present descriptive pretraining and posttraining evaluation study was to investigate the effects of a standardized, evidence-based discharge education program prepared for children with gastrostomy tubes on the caregivers' knowledge, anxiety levels, and caregiving burden.

Methods: The primary caregivers of children with a gastrostomy tube (n = 30) were interviewed on the first day of the education program and the first week and third month after the program, and a pretest/posttest, the Zarit Caregiver Burden Scale and the State-Trait Anxiety Inventory were applied. Complications were determined by assessing the number of unplanned clinic visits and complications in the study group compared with the historical control group (historical comparison; n = 30).

Results: The study revealed that the knowledge levels of mothers increased in the first week and third month after training, and their caregiving burden and state-trait anxiety levels significantly decreased. Although some complications arising from the enteral nutrition process were observed, it was found that the complications were fewer, and the difference was statistically significant compared with the group that did not receive the standardized, evidence-based discharge education program.

Conclusion: The standardized education program should be recommended because caregivers managed the home care process more successfully, and the stress, anxiety, and difficulties experienced during homecare decreased. 

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Preserving privacy for pediatric patients and families: use of confidential note types in pediatric ambulatory care

Objective: This study evaluates and characterizes the use of a confidential clinic note type as part of the implementation of open notes at a free-standing children's hospital. We describe how this electronic health record feature which disables patient and family access to selected notes in the patient portal is used across our institution, which clinicians are using this feature, and the type of data our clinicians consider confidential.

Materials and Methods: Through retrospective chart review, we have evaluated the use of a confidential note type over a 1-year period. 

Results: We identified 402 964 clinic notes created during a 1-year period, of which 9346 (2.3%) were flagged as confidential. Use of this confidential note type was associated with female patient sex and increase in patient age. It was used most frequently by a small subset of providers. 922 (83.8%) of 1100 notes manually reviewed contained sensitive information. Reasons for confidential notes varied, but patient's mental health was most commonly identified. 

Discussion: Our data demonstrate variability in the use of a confidential note type across specialties, patient ages, and types of confidential information. This note type is frequently utilized by a subset of providers who often manage sensitive patient and parent information. As vendors and institutions enable open notes, thoughtful implementation and provider education surrounding the use of this confidential feature is needed.

Conclusion: A confidential clinic note feature is an integral aspect of pediatric open notes implementation. This feature supports protection of confidential information pertaining to our patients and their caregivers. 

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Factors associated with enrollment into a clinical trial of caregiver-implemented intervention for infants at risk for autism spectrum disorder

Early intervention has been established as efficacious in addressing developmental delays in young children with autism spectrum disorder. Evidence that caregiver-implemented interventions are feasible and effective for young children with autism spectrum disorder is emerging, yet research suggests there are barriers to enrollment in clinical trials of these interventions for infants at risk for autism. This study identifies factors associated with enrollment in a clinical trial of a caregiver-implemented intervention for 12-month-old infants at risk for autism spectrum disorder. As part of a large longitudinal study, fifty-seven infants were deemed eligible for intervention based on several converging indicators of autism risk. Of these eligible infants, 44% declined enrollment in the intervention study. Examination of factors associated with families who declined enrollment compared to those who agreed to enroll revealed maternal full-time work status, household income, and distance to the clinic as significant predictors. In contrast, autism red flags and parental concern were not significantly associated with enrollment. These results highlight the need for more research on how parental understanding of, and willingness to act on, early social-communication delays impacts intervention study enrollment. Future research can then examine how to address these barriers to enrollment in caregiver-implemented intervention studies. Early intervention helps to address developmental delays in young children with autism spectrum disorder. Yet, research suggests there are barriers to enrollment into research studies that test the effectiveness of these interventions for infants at risk. This study identifies family characteristics that were associated with agreement to enroll in a clinical trial of early intervention for 12-month-old infants at risk for autism spectrum disorder. As part of a large longitudinal study, infants were evaluated for early signs of autism spectrum disorder at 1 year of age. Of the fifty-seven infants who were showing signs of autism and deemed eligible for the early intervention trial, 44% declined enrollment. Results suggest that families were more likely to decline enrolling into the intervention study if the mother was working full time, the total household income was between US$60,000 and US$100,000, and they lived further from the clinic. In contrast, infant autism symptoms and parental concern at 12 months were not significantly associated with enrollment. These findings highlight the need for intervention studies that are more accessible to parents, for example, intervention that takes place in the home, in addition to more research on how parental understanding of, and willingness to act on, early social-communication delays impact intervention study enrollment. Future research can then examine how to address these barriers to enrollment in early intervention studies. Such findings will shed light on best practices for dissemination of early identification and intervention strategies.

 

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Where Do Caregivers Take Their Sick Children for Care? An Analysis of Care Seeking and Equity in 24 USAID Priority Countries

Background: Pneumonia, diarrhea, and malaria are leading causes of under-5 mortality. Accelerated reductions in illness burden are needed to meet childhood Sustainable Development Goals. Understanding where parents take sick children for care is key to improving equitable, high-quality treatment for these childhood illnesses and catalyzing reductions in morbidity and mortality. Methods: We analyzed the most recent Demographic and Health Survey data in 24 of the United States Agency for International Development's maternal and child health priority countries to examine levels and sources of care for children sick with 3 illness classifications: symptoms of acute respiratory infection, diarrhea, or fever. Results: On average, across countries analyzed, one-third of children had recent experience with at least 1 of the 3 classifications. The majority (68.2%) of caregivers sought external advice or treatment for their sick children, though the level is far higher for the wealthiest (74.3%) than poorest (63.1%) families. Among those who sought out-of-home care, 51.1% used public sources and 42.5% used private-sector sources. Although sources for sick child care varied substantially by region and country, they were consistent across the 3 illness classifications. Urban and wealthier families reported more use of private sources compared with rural and poorer families. Though 35.2% of the poorest families used private sources, most of these (57.2%) were retail outlets like pharmacies and shops, while most wealthier families who sought care in the private sector went to health facilities (62.4%). Discussion: Efforts to strengthen the quality of integrated management of sick child care must therefore reach both public and private facilities as well as private pharmacies, shops, and other retail outlets. Stakeholders across sectors must collaborate to reach all population groups with high-quality child health services and reduce disparities in care-seeking behaviors. Such cross-sectoral efforts will build clinical and institutional capacity and more efficiently allocate resources, ultimately resulting in stronger, more resilient health systems.
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Examination of Care Burden and Stress Coping Styles of Parents of Children with Autism Spectrum Disorder

Objective: The study was conducted to examine the caregiver burden and stress coping styles of parents of children with Autism Spectrum Disorder (ASD). Design and Methods: This descriptive cross-sectional study was conducted with parents of 131 children with ASD who were enrolled in a private education practice center in Istanbul between August 2015 and August 2016. The data were collected using a questionnaire prepared by the researchers, and the "Caregiver Strain Index" and "Ways of Coping Questionnaire." Results: The mean age of the children in the sample group was 4.83 ± 0.99 years; 63.4% were boys. Nearly 40% (38.2%) were diagnosed as having ASD at the age of 2 years. It was determined that the parents of children with ASD had a higher burden of care (CSI mean score: 7.68 ± 4.30). The caregiver burden was significantly higher (p < 0.05) for parents of one child as compared to parents with more children, and parents with daughters compared to parents with sons. In addition, the mothers were found to have higher scores of 'submissive approach' and 'seeking social support' than fathers. Conclusion: Parents of children with ASD had a higher caregiver burden. Scores of approach types of self-confident, helpless, optimistic, and seeking social support were significant predictors of caregiver burden.; Practice Implications: Nurses are encouraged to take a more active role to improve the health of children with autism and families should contribute to mitigating the burden care of parents by informing families about social support systems.

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Factors Associated With the Use of U.S. Community–Based Palliative Care for Children With Life-Limiting or Life-Threatening Illnesses and Their Families: An Integrative Review

Context: As children with life-limiting illnesses (LLIs) and life-threatening illnesses (LTIs) live longer, challenges to meeting their complex health care needs arise in homes and communities, as well as in hospitals. Integrated knowledge regarding community-based pediatric palliative care (CBPPC) is needed to strategically plan for a seamless continuum of care for children and their families. Objectives: The purpose of this integrative review article is to explore factors that are associated with the use of CBPPC for U.S. children with LLIs and LTIs and their families. Methods: A literature search of PubMed, CINAHL, Scopus, Google Scholar, and an ancestry search was performed to identify empirical studies and program evaluations published between 2000 and 2016. The methodological protocol included an evaluation of empirical quality and explicit data collection of synthesis procedures. Results: Forty peer-reviewed quantitative and qualitative methodological interdisciplinary articles were included in the final sample. Patient characteristics such as older age and a solid tumor cancer diagnosis and interpersonal factors such as family support were associated with higher CBPPC use. Organizational features were the most frequently discussed factors that increased CBPPC, including the importance of interprofessional hospice services and interorganizational care coordination for supporting the child and family at home. Finally, geography, concurrent care and hospice eligibility regulations, and funding and reimbursement mechanisms were associated with CBPPC use on a community and systemic level. Conclusion: Multilevel factors are associated with increased CBPPC use for children with LLIs or LTIs and their families in the U.S.

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Parents' voices: 'why and how we advocate'. A meta-synthesis of parents' experiences of advocating for their child with autism spectrum disorder

Background: Parenting a child with autism spectrum disorder (ASD) can be stressful, and accessing services can add to this stress. Self-efficacy, agency and advocacy are important for parents when accessing and using services. To develop insight into parental advocacy, a meta-synthesis was undertaken to consolidate the literature focussing on parents' experiences of advocating for their child with ASD. Methods: A qualitative meta-synthesis was conducted. Fifteen databases were systematically searched by using key terms related to ASD, children, parents/carers, advocacy and qualitative studies. Twenty-four studies were identified and appraised using an adapted version of the Critical Appraisal Skills Programme tool. Data were synthesized into themes through the steps of review, meta-aggregation, integration and interpretation. Results: Two overarching concepts emerged, illustrating both the challenging nature of advocacy and the associated personal and societal benefits. These two concepts are supported by eight themes: a life-long, all-encompassing challenge; advocacy as a parental coping strategy; advocacy involving working to create a future; balancing roles and needs; isolation versus support; personal impacts of advocacy; benefits of advocacy; and the barriers to advocacy. Conclusions: The experience of advocacy for parents with a child with ASD is complex and intensive, presenting both personal and societal benefits, as well as challenges for parents. In supporting individuals with ASD and family well-being, service providers need to have an understanding of the advocating role of parents and ensure that opportunities exist for their voices to be heard during service delivery.

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Zellweger spectrum disorder: A cross-sectional study of symptom prevalence using input from family caregivers

Zellweger spectrum disorders (ZSD) are rare, debilitating genetic diseases of peroxisome biogenesis that affect multiple organ systems and present with broad clinical heterogeneity. Although many case studies have characterized the multitude of signs and symptoms associated with ZSD, there are few reports on the prevalence of symptoms to help inform the development of meaningful endpoints for future clinical trials in ZSD. In the present study, we used an online survey tool completed by family caregivers to study the occurrence, frequency and severity of symptoms in individuals diagnosed with ZSD. Responses from caregivers representing 54 living and 25 deceased individuals with ZSD were collected over an 8-month period. Both perception of disease severity and prevalence of various symptoms were greater in responses from family caregivers of deceased individuals compared to those of living individuals with ZSD. Compared with previous reports for ZSD, the combined prevalence of seizures (53%) and adrenal insufficiency (45%) were nearly twice as high. Overall, this community-engaged approach to rare disease data collection is the largest study reporting on the prevalence of symptoms in ZSD, and our findings suggest that previous reports may be underreporting the true prevalence of several symptoms in ZSD. Studies such as this used in conjunction with clinician- led reports may be useful for informing the design of future clinical trials addressing ZSD.

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Caregiver creation of participation-focused care plans using Participation and Environment Measure Plus (PEM+), an electronic health tool for family-centred care

Background: Family-centred care (FCC) is a model for rehabilitation practice that focuses on collaborative partnerships between providers and clients (i.e. children and their caregivers). FCC is a best-practice standard and is expected to yield better outcomes for children and greater caregiver satisfaction with rehabilitation services. A commonly cited barrier to implementing FCC is perceptions about caregiver capability to contribute to designing an initial plan of care, due to lack of skill and/or interest. Objectives: The aim of this study is to address FCC barriers through three objectives: (a) report the proportion of caregivers that created multiple care plans using PEM+, an electronic health tool, (b) assess the proportion of caregivers that created complete and participation-focused care plan(s) and that exceeded criteria of a complete plan, and (c) describe characteristics of caregivers that did not create a complete care plan. Methods: Study objectives were addressed via secondary analyses of a subset of data from the PEM + pilot trial. Participants were caregivers (N= 18) of children with developmental disabilities (aged 0-5 years) receiving rehabilitation services in an early childhood programme. A deductive analytic approach was used to code care plan content to criteria and to determine proportion of caregivers with a complete and participation-focused care plan and those that exceeded the criteria. Results: Multiple care plans were created by 72% of the caregivers, 83% caregivers created at least one care plan that was complete and participation-focused per criteria, and 83% exceeded the criteria. Conclusion: The high occurrence of caregivers who developed multiple care plans and who developed high-quality care plans, in their completeness and participation-focused features, suggests that caregivers are interested and capable of participating in a collaborative goal setting process when using PEM+. This indicates that FCC is feasible to implement in clinical workflow with the use of an electronic health tool, which may better facilitate such care. PEM+ warrants further efficacy testing prior to implementation.
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Supporting Early Communication Skills of Children with Developmental Disorders in South Africa: Caregiver and Clinician Perspectives about Mobile Health Applications

Using a mobile health application (i.e. app) to empower primary caregivers of young children with developmental disorders in low- and middle-income countries is opening up new avenues for early childhood intervention. Thirteen caregivers and ten speech-language pathologists participated in three focus groups to explore their perspectives about the potential benefits and suitability of a mobile health app as part of intervention, its features, the likelihood of using and recommending it, as well as potential pitfalls to be avoided. Both participant groups were generally positive, although there was little overlap between their responses. Caregivers generally focused on increased knowledge and skills (of all family members), as well as on empowerment and reduced costs. Speech-language pathologists on the other hand focused on how current service delivery would be enriched by increasing the dosage of therapy and enhancing parental cooperation. They also expected that the reach of service delivery would be expanded as more children and caregivers could potentially benefit. Although technology (i.e. mobile apps) could open up new possibilities for service delivery in this population, the perspectives of all stakeholder groups should be considered to ensure successful adoption of such technologies.

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Influence of Contextual Factors and Self Efficacy on Self Management in Parents of Children with Cystic Fibrosis

Cystic Fibrosis, a life threatening autosomal recessive genetic disease is characterized by a defective gene resulting in the production of thick mucus that obstructs the lungs and pancreas. CF requires intensive management performed at home. An initial pilot study was performed to describe knowledge of CF related diabetes (CFRD) in adults with CF. The findings of this study demonstrated adults with CF lacked sufficient knowledge about CFRD and confirmed the need to explore additional factors of self-management guided by a theoretical framework. The second study presented in this dissertation used the Individual and Family Self-Management Theory (IFSMT) to describe context (condition-specific and individual and family factors), process (self-efficacy and knowledge), and outcome (family self-management) for caregivers of children with CF. It also compared differences in context, process, and outcomes in caregivers based on socioeconomic status (Medicaid vs. private insurance), and explored correlations. Participants for this cross-sectional descriptive study were caregivers of individuals with CF who were under the age of 18 and diagnosed with CF for at least 9 months. Participants completed a demographic survey and questionnaires that included measures of perceived disease severity (VAS), depression (Patient Health Questionnaire), self-efficacy (Perceived Health Competence Scale, Mountain West Cystic Fibrosis Consortium Questionnaire), knowledge (CF Knowledge and Attitudes Questionnaire), and self management behaviors (Self-Management Behaviors Questionnaire) Additional information was collected on the children with CF including; demographic information as well as height/weight/BMI, pulmonary function test results, medication profile, and insurance status. Participants in this study were primarily female caregivers with high self-efficacy, and average knowledge. The children with CF in this study had moderate treatment complexity and normal/mild impairment in lung function. Deficits were noted in the areas of caregivers' reproductive and genetic knowledge. This study found differences between Medicaid and private insurance groups related to knowledge. There were significant relationships between disease severity and CF specific self-efficacy and nutritional surveillance as well as general self-efficacy and respiratory surveillance. These findings confirmed the IFMST would provide a consistent framework to guide future studies aimed at identifying factors that influence self-management behaviors of CF in patients and their caregivers.
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Quality of Life and Mental Health in Mothers and Fathers Caring for Children and Adolescents with Rare Diseases Requiring Long-Term Mechanical Ventilation

Background: Parents caring for children and adolescents with rare diseases fear the long-term progression of the child's disease and the loss of their parental role. The aim of this study was to examine the quality of life, mental health and associated protective factors of mothers and fathers caring for children with rare diseases requiring mechanical long-term ventilation. Methods: In a cross-sectional design, data on quality of life, mental health, coping mechanisms, social support and family functioning from n = 75 affected families were collected using standardized psychometric questionnaires. Results: Mothers compared to fathers were significantly more impaired in their quality of life and mental health. Protective factors significantly associated with the respective outcomes for mothers were coping mechanisms, social support and family functioning, whereas for fathers solely the latter was found to be significant. Multiple regression analyses showed that family functioning may be the most important predictor of quality of life and mental health. Discussion: The results support the need for family-oriented care in parents of children with rare diseases. To reach optimal efficiency, health care providers should not only screen parents for psychosocial impairment but also provide interventions that consider gender-specific differences in psychological health.
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Facets of Faith: Spirituality, Religiosity, and Parents of Individuals With Intellectual Disability

 

Although faith has particular prominence in the contemporary American landscape, its intersection with disability and families has received little attention. We examined the spiritual and religious lives of 530 parents and caregivers of family members who have intellectual disability. For most participants, faith had clear relevance and was reflected in their congregational participation, beliefs, practices, and strength of faith. Yet considerable diversity was apparent in the ways in which each was evidenced, which included a modest number of families for whom this was not a salient aspect of their lives. Most participants identified ways in which their spirituality and religious participation contributed to their well-being. However, access to social supports through a local congregation was more muted. We address implications for professionals who support these families and congregations who welcome them. We also offer recommendations for expanding the opportunities and supports parents and caregivers need to flourish in their faith.
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Caregiver needs and stress in caring for individuals with fetal alcohol spectrum disorder

Objective: Individuals with FASD experience neurodevelopmental impairments and adverse outcomes, which can result in stress on the caregiver. However, there is little research on the needs of caregivers supporting individuals with FASD and whether they are associated with caregiver stress. Method: 125 caregivers of individuals with FASD completed a survey with questions adapted from the Family Caregiver Survey and the Perceived Stress Scale. Results: Caregivers reported a range of needs and concerns, and high levels of stress. In many areas of caregiver well-being concerns tended to be higher among caregivers with adolescents and adults compared to those with children. Foster parents reported fewer well-being concerns than biological/kinship and adoptive parents. Caregivers who cared for the individuals for longer periods of time reported the most well-being concerns and lowest satisfaction with supports. Caregivers with the lowest income reported higher levels of stress than those with higher incomes. Higher reported stress was highly correlated with more needs/concerns. Conclusions: Caregivers of individuals with FASD have multiple areas of need and concern, and experience high levels of stress. Reducing demands on caregivers and providing resources may help reduce caregiver needs and stress, particularly for those caring for adolescents and adults, and those with lower incomes.
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APPEAL‐1: A pan‐European survey of patient/caregiver perceptions of peanut allergy management

Background: Peanut allergy (PA) is associated with marked quality‐of‐life (QoL) impairment. However, data are lacking on the experience and impact of living with PA from the perspectives of persons with PA (PwPA) and their caregivers. Allergy to Peanuts imPacting Emotions And Life study 1 (APPEAL‐1) was a pan‐European survey investigating these perspectives. This first of two articles reports clinical characteristics of PwPA and PA management practices. Methods: APPEAL‐1 was a quantitative, online survey conducted in eight European countries, developed by eight representatives of patient advocacy groups and five healthcare professionals and researchers. Eligible participants included adults with PA and parents/caregivers of PwPA who responded by self‐report and provided proxy‐report for the PwPA under their care. Data were summarized using nonweighted descriptive statistics. Results: Of 1846 completed/analysed questionnaires, 528 were from adults with PA (self‐report); 437 by proxy for children with PA (34 aged 0‐3 years, 287 aged 4‐12 years, 116 aged 13‐17 years) and 881 from parents/caregivers (self‐report). Of PwPA (N = 965), 95% reported diagnosis by healthcare professionals, mostly by clinical history and peanut‐specific allergy testing. Rates of allergic rhinitis, asthma and other food allergies in PwPA were 50%, 42% and 79%, respectively. Only 31% of PwPA received HCP advice/support following their worst allergic reaction, and 28% had not been prescribed an adrenaline auto‐injector. Results were similar by country but varied by age group. Conclusions: The APPEAL‐1 findings contribute to greater understanding of PA impact on PwPA, caregivers and family members and the need for improved PA management across Europe.

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Improving mental health in families with autistic children: benefits of using video feedback in parent counselling sessions offered alongside music therapy

BACKGROUND: This paper explores benefits of parent counselling offered alongside music therapy with children with autism spectrum disorders (ASD). Research studies have shown that the stress levels of primary caregivers of children with ASD are not only higher than in the general population but also higher than in parents of children with other developmental disabilities. It is therefore recommended that music therapists working with children with ASD also engage and support their parents. PARTICIPANTS AND PROCEDURE: In the international randomised controlled trial TIME-A, which investigates the effects of music therapy on the social communicative skills of autistic children, participating families are offered three parent counselling sessions. For this paper, 68 counselling sessions with 25 families were evaluated; 14 sessions were transcribed and subjected to a content analysis. Case examples illustrate the impact of concomitant parent counselling sessions on the families. RESULTS: The analysis generated emerging themes that were grouped into two categories: 1) Non-music therapy specific themes, and 2) Music therapy specific themes. The first category comprised four sub-groups: Exchange of information, Experiences with professionals/friends/society, Worries about the future, Personal/matrimonial problems. Music therapy specific themes were subdivided into the following groups: Working in a partnership, Empowering parents, Celebrating strengths, Rejoicing in child's enjoyment. Challenges caused by the dual roles of music therapist and parent counsellor were outweighed by the benefits. In addition to the therapeutic effect of counselling, video material from the music therapy sessions helped carers to see their children's strengths, to gain new ideas, and to develop a more positive outlook. CONCLUSIONS: The findings support the provision of parent counselling sessions alongside music therapy for children with ASD. This study highlights that extending the role of the music therapist and using video feedback offers encouraging possibilities to further support the wellbeing of the whole family.

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New Approach to Pediatric Treatment Planning to Support Caregivers Living with Adversities

Pediatric practitioners are called upon to identify adverse childhood experiences and social determinants of health, given the growing evidence of the prevalence, lifelong risk, and potentially preventable impact of adversities. Caregivers serve as a strong mediator of how adversities affect children, with toxic stress resulting from the lack of a buffering caregiver in the context of prolonged stress activation. In the context of family centered care, pediatric practitioners who identify adversities or diagnose related health conditions, will need to be adept at modifying treatment plans to respect the caregiver's circumstances. Pediatric practitioners will need to consider how adversities affect the caregiver's well-being and capacity to provide protective, buffering relationships to prevent toxic stress, and access to recommended treatments. This article proposes a reconsideration of traditional treatment planning to be adversity-informed to provide family centered care. 

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Facilitators and Barriers of Advance Care Planning Discussions with Adolescents, Young Adults, and Parents of Children with Serious Illness (RP403)

Objectives: Describe the advance care planning communication preferences of children and adolescents and young adults (AYAs) with serious illness and their families. Describe multidisciplinary clinicians' current approach to advance care planning communication as well as perceived facilitators and barriers to initiating advance care planning discussions with AYAs and parents of children with serious illness. Discuss opportunities for further research to improve advance care planning communication for children and AYAs with serious illness and their families.

Importance: Parents desire earlier and more opportunities for advance care planning (ACP); however, large scale adoption of ACP for seriously ill children and AYAs remains unrealized. Little is known about the perceived facilitators and barriers of ACP discussions. Objective(s). To explore multidisciplinary clinician perceptions about typical approaches and perceived facilitators and barriers to ACP discussions.

Method(s): Semi-structured focus groups and individual interviews were conducted with multidisciplinary clinicians at two centers from December 2018-April 2019. An interdisciplinary three-person team then conducted thematic analysis incorporating both prefigured and emergent codes. Through an iterative process, a comprehensive coding structure was created, and each transcript coded independently by two coders with the third serving as an adjudicator, achieving high interrater reliability (kappa>0.85). Utilizing grounded theory and framework analysis, we present findings related to clinician perceptions about current approaches to ACP, and facilitators and barriers to ACP discussions.

Results: The sample included 35 stakeholders including physicians, nurses, psychosocial clinicians, and chaplains. Overall, providers valued facilitating ACP conversations with patients and their families and aimed to do so by supporting, empowering, and establishing trust. Providers prioritized understanding family dynamics, establishing goals of care, and delineating the overall disease trajectory in ACP discussions. However, various factors impeded ACP discussions. Primary clinician-level barriers included limited communication skills, prognostic uncertainty, competing demands, and conflicting messaging associated with multidisciplinary team care, while perceived patient and family-level barriers included poor prognostic awareness, avoidance, complex patient/family dynamics, and the influence of culture and religion. Clinicians identified alignment with the patient's primary team and normalization as facilitators of ACP discussions.

Conclusion(s): Despite ubiquitous recognition of the importance of ACP communication, various clinicianand parent-level barriers were identified that do not meet the needs of children and AYAs with serious illness and their families. Impact. Improvement strategies should prioritize serious illness communication interventions to facilitate ACP and ensure care is aligned with patient and family goals and values.

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Supporting ill children to be cared for at home

In 2006, WellChild instigated its WellChild Children's Nurse programme, which provides practical and emotional support to children with exceptional health needs and their families, enabling children to leave hospital and be cared for at home wherever possible. Some sit within community children's nursing teams, but all liaise with hospital and community colleagues, often spanning several teams within a region as well as other specialist nurses, such as palliative and learning disability nurses.

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Youth Transition Home from Residential Mental Health Treatment: Caregivers' Perspective

Residential treatment (RT) provides a secure setting where youth with moderate to severe emotional and behavioral disorders reside long-term to receive treatment and care. The purpose of this study was to explore caregivers' perceptions of their child's immediate transition home following residential treatment. Ten mothers of youth discharged from RT participated in a semi-structured interview approximately 4 weeks after discharge from RT in Ontario, Canada. The mothers' reports suggested that there was initially some nervousness in the family but that the youth and family members made good effort in their relationship and youth made good efforts in school. About 40% of participants reported that initially the common problems prior to admission to RT were absent; however, about 2 weeks later these problems resurfaced. Caregivers also reported that youth had difficulty connecting with friends and peers, seemed nervous when re-stablishing relationships with caregivers and had difficulty managing their emotions and life's challenges. Most participants reported a perceived lack of professional supports for caregivers and youth following RT. Participants' narratives indicated a need for a continuity of care after RT. Further implications for practice and research are discussed. 

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Reducing Emotional Distress for Childhood Hypoglycemia in Parents (REDCHiP): Protocol for a Randomized Clinical Trial to Test a Video-Based Telehealth Intervention

Background: Despite the introduction of new insulin analogs, insulin pumps, and continuous glucose monitoring (CGM), young children with type 1 diabetes mellitus (T1D) remain vulnerable to episodes of hypoglycemia because of their unpredictable eating and activity patterns and high degree of insulin sensitivity. Caregivers and young children living with T1D learn to fear hypoglycemia because it is uncomfortable, unpredictable, and dangerous. Up to 60% of caregivers of young children with T1D report moderate to severe levels of fear of hypoglycemia, and caregiver fear of hypoglycemia relates to lower quality of life for families and suboptimal child glycemic control. Yet, until recently, there have been no studies reporting on a targeted intervention to treat caregiver fear of hypoglycemia in families of young children.

Objective: The aim of this project is to conduct a randomized clinical trial of an innovative, video-based telehealth intervention to treat fear of hypoglycemia in caregivers of young children with T1D versus a relevant, age-appropriate attention control intervention.

Methods: We created the Reducing Emotional Distress for Childhood Hypoglycemia in Parents (REDCHiP) intervention by merging age-appropriate T1D education and behavioral parenting strategies with cognitive behavioral therapy strategies that are effective for reducing fear and promoting adaptive coping. REDCHiP uses 10 video-based telehealth sessions that are a combination of group and individual sessions. We will recruit up to 180 families of young children with T1D to participate in this clinical trial from two pediatric diabetes clinics located in the midwestern and southern United States. Once families have been enrolled, we will randomize caregivers based on child age (age 2-3 years or 4-5 years), child sex, and family CGM use to participate in the REDCHiP or attention control intervention. Families will complete 3 assessment visits that coincide with study entry, end of treatment, and 3-month posttreatment. At each assessment visit, we will collect questionnaire data from caregivers, accelerometry data from caregivers and children, CGM data from children, and a blood sample to measure glycated hemoglobin levels from children.

Results: Recruitment began in July 2019, and enrollment is ongoing. The first wave of intervention delivery began in December 2019. We anticipate completing enrollment in 2023. Final reporting of results will occur within 12 months of the primary completion date.

Conclusions: If the REDCHiP intervention is efficacious, next steps will be to examine multiple implementation strategies to determine how best to disseminate the intervention to pediatric diabetes clinics around the world.

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An Examination of the Psychometric Properties and Validation of the Family Resource Scale for Families Seeking Assistance With Their Child's Behavioral Difficulties

Psychometric properties of the 30-item Family Resource Scale (FRS) were examined in a sample of families seeking assistance for their child's behavioral difficulties (N = 300). The FRS is a measure that assesses the adequacy of family resources across several contexts including intra-family support and personal resources. Our analyses supported a modified 29-item four-factor solution (basic needs, extra money and time, time for family, and essential) compared with the seven-factor solution provided by the developers. Results showed that families' perception of their resources as adequate across all domains was associated with better family functioning and less caregiver strain. Combined, our findings suggest modifications to the existent structure of the FRS.

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Challenges, priorities, barriers to care, and stigma in families of people with autism: Similarities and differences among six Latin American countries

Lack of access to services and support is an important issue for people with autism, but in low- and middle-income countries there is a lack of data on this problem. The aims of this study were to describe the challenges and priorities, identify barriers to care, and map stigma among families of individuals with autism in Latin America. This survey was undertaken by the Red Espectro Autista Latinoamerica network, a coalition of researchers/clinicians from six Latin American countries; it comprised 2942 caregivers of children with autism from Brazil, Argentina, Chile, Uruguay, Venezuela, and the Dominican-Republic, who completed the Spanish/Portuguese version of the Caregiver Needs Survey. The survey showed that the main priorities were greater community awareness and improvements in education. The main barriers to care were waiting lists (50.2%), treatment costs (35.2%), and lack of specialized services (26.1%). Stigma experienced by families was frequent: one-third reported feeling discriminated against and helpless for having a child with autism, 48.8% reported some type of financial problem, 47.4% had to reduce work hours, and 35.5% had to stop working because of their child's autism. This survey describes the main needs/challenges faced by individuals with autism in Latin America, helping to build data-driven strategies at a national/regional level. Approximately 6 million individuals with autism spectrum disorder live in Latin America. In order to strengthen autism spectrum disorder research collaborations and awareness in the region, the Latin American Autism Spectrum Network (Red Espectro Autista Latinoamerica) was constituted in 2015, comprising researchers and clinicians from the following six countries: Brazil Argentina, Chile, Uruguay, Venezuela, and the Dominican Republic. This first multisite study from the Red Espectro Autista Latinoamerica network aims to describe the challenges and priorities to identify barriers to care and to map stigma among families of individuals with autism spectrum disorder living in Latin America. A total of 2942 caregivers from these six countries completed an online survey showing that the main priorities were greater community awareness and improvements in the educational system for individuals with autism spectrum disorder. In addition to that, the main barriers to care were related to lack of structure, mainly waiting lists (50.2%), high treatment costs (35.2%), and lack of specialized services (26.1%). Stigma experienced by families was frequent: one third reported feeling discriminated against and helpless for having a child with autism spectrum disorder. Also, 48.8% of the caregivers declared financial problems, 47.4% of them had to cut down work hours, and 35.5% had to leave their jobs because of their child's autism spectrum disorder. This is a pioneer study providing a description of the needs and challenges faced by families affected by autism spectrum disorder in Latin America, helping to build data-driven strategies at the national and regional levels. 

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Bad news: Families’ experiences and feelings surrounding the diagnosis of Zika‐related microcephaly

The rapidly increasing number of cases of Zika virus and limited understanding of its congenital sequelae (e.g., microcephaly) led to stories of fear and uncertainty across social media and other mass communication networks. In this study, we used techniques generic to netnography, a form of ethnography, using Internet‐based computer‐mediated communications as a source of data to understand the experience and perceptions of families with infants diagnosed with Zika‐related microcephaly. We screened 27 YouTube™ videos published online between October 2015 and July 2016, during which the Zika epidemic started, peaked, and declined. We identified three themes: (a) experiencing the news of a diagnosis of Zika‐associated microcephaly; (b) experiencing feelings and expectations of the ‘imperfect’ child; and (c) seeking to understand microcephaly to care for the child. We found that families experienced distressing feelings of shock, sadness, hopelessness, and pain, while dealing with emerging and sometimes conflicting information being transmitted by news outlets, uncertainty about the child's health, and healthcare providers’ lack of clarity to guide the family members. The ‘unknown’ factor of ZIKA was an additional stressful factor in the experience of the families.

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Psychosocial Needs and Facilitators of Mothers Caring for Children with Duchenne/Becker Muscular Dystrophy

Care guidelines for Duchenne/Becker muscular dystrophy (DBMD) include recommendations for assessment of caregivers of patients with DBMD followed by proactive psychosocial interventions. To inform clinical assessment, this study described appraisals of psychosocial needs and caregiving facilitators of mothers of individuals with DBMD. Two hundred and five mothers completed an online survey. More than 50% endorsed unmet needs for managing uncertainty about the future and managing DBMD fears. Higher levels of unmet need were associated with less disease progression/earlier stage of DBMD (rho = -0.166 p = 0.02). Twenty-one percent regularly used respite care and 57% worried about allowing others to care for their child. Highly-endorsed care facilitators included partner relationships (63%), child's approach to life (59%), and family relationships (49%). Our findings highlight the importance of psychological and social support for caregivers. Starting when children are young, clinicians should assess caregivers' unmet psychological needs, particularly uncertainty and fear. Exploring needs and facilitators may allow clinics to target and customize interventions that build upon existing strengths and supports. Our findings have implications for efforts to promote early diagnosis and newborn screening, in that increased needs in mothers of younger children should be anticipated and built into counseling. Further research can assess whether and how unmet needs change as new therapies become available.

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Disease burden of duchenne muscular dystrophy patients and their caregivers

Background and purpose: Data on the disease burden of Duchenne Muscular Dystrophy are scarce in Hungary. The aim of this study was to assess patients' and their care-givers' health related quality of life and healthcare utilisations.

Methods: A cross sectional survey was performed as part of the European BURQOL-RD project. The EQ-5D-5L and Barthel Index questionnaires were applied, health care utilisations and patients' informal carers were surveyed.

Results: One symptomatic female carer, 50 children (boys 94%) and six adult patients (five males) participated in the study, the latter two subgroups were included in the analysis. The average age was 9.7 (SD=4.6) and 24.3 (SD=9.8) years, respectively. Median age at time of diagnosis was three years. The average EQ-5D score among children and adults was 0.198 (SD=0.417) and 0.244 (SD=0.322), respectively, the Barthel Index was 57.6 (SD=29.9) and 53.0 (SD=36.5). Score of satisfaction with healthcare (10-point Likert-scale) was mean 5.3 (SD=2.1) and 5.3 (SD=2.9). 15 children were hospitalised in the past 12 months for mean 12.9 (SD=24.5) days. Two patients received help from professional carer. 25 children (mean age 11.1, SD=4.4 years) were helped/supervisied by principal informal carer (parent) for mean 90.1 (SD=44.4) hours/week and further family members helped in 21 cases. Correlation between EQ-5D and Barthel Index was strong and significant (0.731; p<0.01) as well as with informal care time (-0.770; p<0.01), but correlation with satisfaction with health care was not significant (EQ-5D: 0.241; Barthel Index: 0.219; informal care: --0.142).

Conclusion: Duchenne muscular dystrophy leads to a significant deterioration in the quality of life of patients. Parents play outstanding role in the care of affected children. This study is the first in the Central and Eastern European region that provides quality of life data in this rare disease for further health economic studies.

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Parenting Stress Among Caregivers of Children With Bipolar Spectrum Disorders

Caregivers of psychiatrically impaired children experience considerable parenting stress. However, no research has evaluated parenting stress within the context of pediatric bipolar spectrum disorders (BPSD). Thus, the aim of this investigation was to identify predictors and moderators of stress among caregivers in the Longitudinal Assessment of Manic Symptoms study. Participants included 640 children and their caregivers in the Longitudinal Assessment of Manic Symptoms cohort. Children had a mean age of 9.4 ± 1.9 years (68% male, 23% BPSD); parents had a mean age of 36.5 ± 8.3 years (84% mothers). Children with BPSD had more service utilization, psychiatric diagnoses, mood and anxiety symptoms, and functional impairment but fewer disruptive behavior disorders. Caregivers of children with BPSD were more likely than caregivers of children without BPSD to have a partner, elevated depressive symptoms, antisocial tendencies, and parenting stress (Cohen's d = .49). For the whole sample, higher child IQ, mania, anxiety, disruptive behavior, and caregiver depression predicted increased parenting stress; maternal conduct disorder predicted lower stress. Child anxiety and disruptive behavior were associated with elevated caregiver stress only for non-BPSD children. Caregivers of children with BPSD experience significant burden and thus require specialized, family-focused interventions. As stress was also elevated, to a lesser degree, among depressed caregivers of children with higher IQ, mania, anxiety, and disruptive behavior, these families may need additional supports as well. Although parents with conduct/antisocial problems evidenced lower stress, these difficulties should be monitored. Thus, parenting stress should be evaluated and addressed in the treatment of childhood mental health problems, especially BPSD. 

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Barriers to care in pediatric cancer: The role of illness uncertainty in relation to parent psychological distress

Objective: The current study evaluated perceived barriers to care for parents of children with cancer and the mediating effect of illness uncertainty (IU; uncertainty from the ambiguity or unpredictability of the illness) on the relationship between barriers and parental psychological distress. We hypothesized that greater barriers to care would be related to higher levels of IU and, in turn, higher anxiety, depression, and posttraumatic stress symptom (PTSS) ratings.

Methods: As part of an ongoing study of family adjustment to pediatric cancer, 145 caregivers of children diagnosed with cancer completed questionnaires assessing barriers to care, parent IU, and anxious symptoms, depressive symptoms, and PTSS. Time since cancer diagnosis ranged from 1 to 12 months.

Results: Three mediation models assessed IU as a mediator between barriers to care and anxious symptoms, depressive symptoms, and PTSS, controlling for annual income. IU significantly mediated the relationship between barriers to care and depressive symptoms (B = -.03, SE = .02; 95% CI [-.08, -.01]) and to PTSS (B = -.15, SE = .10; 95% CI [-.38, -.03]). The mediation model was not significant for anxious symptoms.

Conclusion: Experiencing barriers to obtaining treatment for their child with cancer is a significant risk factor for symptoms of depression and PTSS among parents. Specifically, greater barriers to care is significantly associated with IU, a well-established precursor to distress in this population. Interventions targeting IU may help ameliorate distress within the context of unmodifiable barriers to care.

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School satisfaction in parents of children with severe developmental disabilities

Background: Previous research suggests parents' level of satisfaction with their child's school experience is highly variable. The present author explored school satisfaction in a Canadian sample of parents of children with severe and often complex developmental disabilities.

Method: Parents of 185 children completed questionnaires regarding their satisfaction with nine aspects of their child's school experience. Satisfaction was examined in relation to child's age, diagnosis of Autism, adaptive level, and maladaptive behaviour; parents' mental health difficulties and perception of caring burden; and the child's classroom type and level of clinical services at school.

Results: School satisfaction was unrelated to parents' mental health or burden scores, was related to child's adaptive and maladaptive behaviour, as well as type of classroom placement.

Conclusions: It is important to understand what aspects of the school experience are influential for different children and families so that their experience can be optimized as far as possible. 

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Emotional symptoms and family functioning in caregivers of children with newly diagnosed leukemia/lymphomas and solid tumors: Short-term changes and related demographic factors

Background: Pediatric oncology diagnoses are distressing to caregivers. However, researchers have not investigated the impact that the type of cancer diagnosis has on caregiver anxiety, depression, distress, and family functioning. The purpose of this study was to longitudinally investigate the early trajectory of caregiver psychological symptoms of anxiety, depression, distress, and family functioning near diagnosis and 6 months later by cancer type, and to examine the demographic factors that may be associated with caregiver emotional and family functioning outcomes. 

Methods: Caregivers (n = 122) of children with a recent diagnosis of leukemia/lymphoma or solid tumor completed self-report measures of psychological and family functioning (Hospital Anxiety and Depression Scale, Distress Thermometer, and Family Environment Scale).

Results: In general, caregivers endorsed elevated psychological symptoms at the time of diagnosis, which decreased 6 months later. Caregivers of children with solid tumors endorsed greater anxiety across time than caregivers of children with leukemia/lymphoma did. In addition to caring for a child with a solid tumor, female sex, non-White ethnicity, and non-English language spoken in the home were factors associated with anxious and depressive symptoms and poorer family functioning.

Conclusion: When creating psychosocial interventions for families of children with cancer, the unique demands of solid tumor treatments, the caregiver's sex, and cultural characteristics must be considered to promote coping, resiliency, and problem-solving skills around the time of diagnosis, particularly in more vulnerable families. 

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Six‐Month Follow‐up of the Families on Track Intervention Pilot Trial for Children With Fetal Alcohol Spectrum Disorders and Their Families

Background: When the primary disabilities associated with fetal alcohol spectrum disorders (FASD) are not well supported, individuals are at higher risk for mental health problems and other secondary conditions. The Families on Track (FOT) intervention was designed to prevent secondary conditions and improve family functioning in children with FASD. Promising results from a pilot study demonstrated positive effects on child and caregiver outcomes immediately following the intervention. The objective of this study was to examine the sustainability of these effects 6 months postintervention.

Methods: Thirty children (ages 4 to 8) with prenatal alcohol exposure and their caregivers were enrolled in the original study. Families were randomized to the FOT intervention or an active comparison group that provided comprehensive assessment and individualized feedback. The intervention integrated a positive parenting curriculum and a child skills group. Families were assessed at baseline, postintervention, and 6‐month follow‐up visits. Follow‐up data were available for 24 families on child and caregiver outcomes. Data were analyzed using effect size calculations and analysis‐of‐variance techniques.

Results: Relative to the comparison group, intervention families showed continued gains in parenting efficacy and maintained prior improvements in FASD knowledge over the follow‐up period. Although intervention families reported a decrease in their needs being met over the follow‐up period, they continued to report their needs being met to greater extent than those in the comparison group. Consistent with postintervention outcomes, children in both groups exhibited similar decreases in child disruptive behavior 6 months following the intervention. Unfortunately, positive gains seen at postintervention for child self‐esteem and emotion regulation were attenuated at follow‐up.

Conclusions: This pilot study yielded promising effects on important areas of caregiver functioning. However, the intervention's impact on child functioning waned over time, suggesting the need for sustained or alternate child intervention.

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Findings from the Families on Track Intervention Pilot Trial for Children with Fetal Alcohol Spectrum Disorders and Their Families

Background: Individuals with fetal alcohol spectrum disorders ( FASD) are at high risk for costly, debilitating mental health problems and secondary conditions, such as school disruption, trouble with the law, and substance use. The study objective was to pilot a multicomponent intervention designed to prevent secondary conditions in children with FASD and improve family adaptation.

Methods: Thirty children with FASD or prenatal alcohol exposure ( PAE) (ages 4 to 8) and their primary caregivers were enrolled. Families were randomized to either the Families on Track Integrated Preventive Intervention or an active control of neuropsychological assessment and personalized community referrals. The 30-week intervention integrates scientifically validated bimonthly, in-home parent behavioral consultation, and weekly child skills groups. Outcomes measured at baseline and follow-up postintervention included intervention satisfaction, child emotional and behavioral functioning, child self-esteem, caregiver knowledge of FASD and advocacy, caregiver attitudes, use of targeted parenting practices, perceived family needs met, social support, and self-care. Data analysis emphasized calculation of effect sizes and was supplemented with analysis of variance techniques.

Results: Analyses indicated that families participating in the intervention reported high program satisfaction. Relative to comparison group outcomes, the intervention was associated with medium-to-large effects for child emotion regulation, self-esteem, and anxiety. Medium-sized improvements in disruptive behavior were observed for both groups. Medium and large effects were seen for important caregiver outcomes: knowledge of FASD and advocacy, attributions of behavior, use of antecedent strategies, parenting efficacy, family needs met, social support, and self-care.

Conclusions: This pilot study yielded promising findings from the multicomponent Families on Track Integrated Preventive Intervention for child and caregiver outcomes. An important next step is to complete a randomized control trial of the Families on Track Program with a larger sample fully representative of this underserved clinical population with built-in study of implementation parameters.

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A Mobile Health Intervention for Fetal Alcohol Spectrum Disorders (Families Moving Forward Connect): Development and Qualitative Evaluation of Design and Functionalities

Background: Fetal alcohol spectrum disorders (FASD) affect approximately 2% to 5% of the US population. However, most families are unable to access FASD-informed interventions. Barriers to care include the lack of a knowledgeable and skilled workforce and family-level barriers such as limited financial resources, inability to access childcare, and stigma. As a result, families often try peer-to-peer and self-help support strategies. However, they often take these strategies from disparate sources, which have quite variable intervention quality and empirical support.

Objective: This study aimed to initiate systematic development and evaluation of a mobile health intervention (app) for caregivers raising children with FASD. Focus groups were conducted to elicit participant perspectives on app design and functionalities to inform further app development.

Methods: The app, called FMF Connect, was derived from the scientifically validated Families Moving Forward (FMF) Program, a clinician-delivered behavioral consultation intervention. FMF Connect was intended for caregiver self-delivery and included five main components: (1) Learning Modules, (2) Family Forum, (3) Library, (4) Notebook, and (5) Dashboard. Focus group methods were used to solicit perspectives from diverse families during the early stages of app development. Questions were asked about interface design, relevance of components and content, and perceived barriers and facilitators of use. A total of 25 caregivers participated in 7 focus groups across 5 US cities. Data were analyzed thematically.

Results: Focus group participants were generally enthusiastic about the app interface design and components. Four global positive impression themes emerged, including (1) ease of access, (2) how the app guides and organizes information, (3) connection to other users and information, and (4) ability to share some content with others. Themes arose not only in discussions relating to positive app features but also when participants were asked about motivators for app use. Participants related how these positive global themes could address some system-level barriers, such as limited access to services, feeling isolated, and increased advocacy needs related to the societal lack of FASD knowledge. Participants identified many positive features about individual app components and functionalities. They also communicated potential barriers to use and raised important concerns and considerations relating to several app components. These included recognizability of the app based on the logo, and the balance of following the planned intervention sequence versus obtaining immediate answers. Also mentioned were privacy and dynamics within the Family Forum.

Conclusions: FMF Connect is a promising novel intervention with potential to reach many families in need and reduce significant barriers to care, resulting in a broader public health impact. Study findings will guide further app development both in terms of content and technological advances to optimize intervention effects. FMF Connect app development provides useful directions for other apps aimed at changing parenting practices. 

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Talking with caregivers of children living in the community with ventricular assist devices

A VAD is a mechanical pump used to support the functioning of a failing heart. As a pediatric therapy, a VAD is used as a temporary solution for poor heart function, a bridge to transplantation or recovery, or a destination therapy. The goal of this qualitative study was to explore the perspectives of family and professional caregivers of children who are supported by VADs in outpatient settings. Semi-structured interviews were conducted with 22 caregivers of school-aged children discharged home on VAD support. Interviews were transcribed, and data were analyzed using qualitative content analysis. Caregivers identified issues facing children on VAD support in the contexts of home, school, and other childhood places including being physically connected to a device; experiencing changes; living a medical life; negotiating restrictions; cost of care; family, kinship, and community; and, present and future living. While a child with a VAD may have much in common with other medically complex children, the technological complications and risks of living with a VAD are uniquely identified by caregivers as an issue, especially when considering the way that children with a VAD are connected to their device-implanted yet exterior, mobile yet restricted, and autonomous yet dependent. 

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Psychometric evaluation of the Scandinavian version of the caregiver priorities and child health index of life with disabilities

Purpose: To examine test-retest reliability and construct validity of the Scandinavian version of the caregiver priorities and child health index of life with disabilities (CPCHILD) questionnaire for children with cerebral palsy (CP).

Methods: Families were recruited in Sweden and Norway and stratified according to the gross motor function classification system levels I-V for children born 2000-2011, mean age 7.9 (SD 3.2). Construct validity based on the first questionnaire (n = 106) was evaluated for known groups, using linear regression analysis. Intraclass correlation coefficient was used to estimate test-retest reliability (n = 64), and Cronbach's alpha was calculated as an indicator of internal consistency. Results: The questionnaire showed construct validity and the ability to discriminate between levels of gross motor function for the total score and all domain scores (p < 0.05). Test-retest reliability was high with intraclass correlation coefficient of 0.92 for the total score and of 0.72-0.92 for the domain scores. Cronbach's alpha was 0.96 for the total score and 0.83-0.96 for the domain scores.

Conclusions: The Scandinavian version of the CPCHILD for children with CP seems to be a valid and reliable proxy measure for health related quality of life.

Implications for rehabilitation: Valid and reliable outcome measures are needed to evaluate whether follow-up programs enhance health related quality of life in different countries. The Scandinavian version of the caregiver priorities and child health index of life with disabilities (CPCHILD) was evaluated for known-groups validity and test-retest reliability. The Scandinavian version of the CPCHILD is a sound and valid measurement for evaluation and comparison of health related quality of life of children with cerebral palsy in different countries. 

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Parents’ views on preparation to care for extremely premature infants at home

Aim: To gain insight into the post-discharge experiences of parents in relation to the adequacy of preparation for caring for extremely premature infants at home.

Method: A narrative approach was drawn on to facilitate data collection, through face-to-face semi-structured interviews with 14 parents of extremely premature infants.

Findings: Constant comparative analysis was used to allow the emergence of five key research themes - emotional and mental health of parents, uncertain outcomes, ongoing health needs of the baby, educational needs of health professionals, and parental support and preparation for transition home.

Conclusion: Parental experience of being discharged home with a premature baby can be emotionally challenging and necessitates a range of support mechanisms to help them to cope with this period of transition. Health professionals can direct parents to appropriate counselling services, resources and peer support groups. Tailored education is needed for community-based health professionals, such as health visitors, to equip them to support parents practically and emotionally during the transition home and beyond. In addition, health professionals can learn much from parents about what is needed to support them.

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Family resources moderate the relationship between seizure control and health-related quality of life in children with drug-resistant epilepsy

Objective: Pediatric drug-resistant epilepsy (DRE) is associated with poor health-related quality of life (HRQOL). Achieving seizure control, however, does not improve HRQOL in all children. This study sought to evaluate whether (1) baseline caregiver and family factors are associated with child HRQOL at 1-year follow-up over and above epilepsy characteristics, treatment, and seizure outcome; and (2) baseline family factors moderate the association between seizure outcome and child HRQOL at 1-year follow-up.

Methods: This multicenter longitudinal cohort study recruited 152 children with DRE who were being evaluated for surgical candidacy. Child HRQOL was rated by caregivers using the Quality of Life in Childhood Epilepsy Questionnaire at baseline and 1-year follow-up. Additional data collected at baseline included child epilepsy characteristics, caregiver demographics, caregiver mood, and family environment.

Results: Seizure freedom was achieved in 68% and 28% of patients 1 year after surgery and medical treatment, respectively. Caregiver and family factors were not associated with higher child HRQOL at follow-up after accounting for epilepsy characteristics, treatment, seizure outcome, and baseline child HRQOL, F 11, 131  = 1.34, P = .21, ΔR 2  = .04. Family resources moderated the association between seizure outcome and child HRQOL at follow-up (b = .41, 95% confidence interval [CI] = 0.09-0.74, P = .03); seizure freedom was strongly associated with higher HRQOL when family resources were high (b = 13.50, 95% CI = 8.35-18.54, P < .001), relative to when family resources were low (b = 5.17, 95% CI = -0.18 to 10.52, P = .06). Family relationships and demands did not moderate the relationship between seizure outcome and HRQOL.

Significance: Achieving seizure freedom was associated with better HRQOL in children with DRE, but this association was reduced for those children who presented with limited family resources. These results highlight the importance of assessing the family environment during presurgical evaluation and implementing early family-based intervention and supports to promote better outcomes for children in the long term. 

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Changes in caregiver depression, anxiety, and satisfaction with family relationships in families of children who did and did not undergo resective epilepsy surgery

Objective: To evaluate longitudinal changes in caregiver depression, anxiety, and family relationships following resective surgery for pediatric drug‐resistant epilepsy (DRE).

Methods: This multicenter cohort study involved 177 caregivers of children with DRE aged 4‐18 years (63 surgical and 114 nonsurgical). Caregivers completed measures of depression (Quick Inventory of Depressive Symptomatology), anxiety (Generalized Anxiety Disorder 7‐item scale), and satisfaction with family relationships (Family Adaptability, Partnership, Growth, Affective, and Resolve scale) at baseline, 6 months, and 1 year. Additional data collected at baseline included child, caregiver, and family sociodemographic and clinical factors as well as family environment (demands and resources).

Results: At 1 year, 64% and 27% of surgical and nonsurgical patients were seizure‐free, respectively. Linear mixed‐effects models found a reduction in caregiver depression (b = −0.85, P =.004) and anxiety (b = −1.09, P =.003), but not family satisfaction (b = 0.18, P =.31) over time. There was no effect of treatment. When seizure outcome was added to the model, seizure freedom was associated with fewer depressive symptoms (b = −1.15, P =.005) and greater family satisfaction (b = 0.65, P =.006), but not anxiety (b = −0.41, P =.42). A greater proportion of caregivers of patients who achieved seizure freedom (32%) versus continued seizures (18%) reported clinically meaningful improvement in depression at 1 year (P =.03). Lower baseline depression (β = 0.42, P <.001), greater family resources (β = −0.18, P =.04), and male caregiver (β = 0.15, P =.02) predicted lower caregiver depression, and lower baseline anxiety (β = 0.47, P <.001), greater family resources (β = −0.24, P =.01), and higher education (β = −0.13, P =.04) predicted lower caregiver anxiety at 1 year. Baseline functioning was the only predictor of family relationships at 1 year (β = 0.49, P <.001).

Significance: Caregivers of children who achieved seizure freedom, irrespective of surgical treatment, report fewer depressive symptoms and greater satisfaction with family relationships. Baseline functioning is the strongest predictor of outcome; however, caregivers of families with fewer resources and supports are also at risk of poor psychosocial outcomes. 

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Caregiver distress and patient health-related quality of life: psychosocial screening during pediatric cancer treatment

Background: Reports of acceptability of psychosocial screening are limited, and the utility of screening in identifying risk factors for health-related quality of life (HRQL) of children with cancer has not been established. This study aimed to assess acceptability of screening for parents and evaluate associations between family risk factors and patient HRQL in the first year post-diagnosis.; Procedure: Sixty-seven parents of children with cancer completed the Psychosocial Assessment Tool (family risk), Distress Thermometer (caregiver distress), Posttraumatic Stress Disorder Checklist-Civilian 6 (caregiver traumatic stress), PedsQL 4.0 (parent-proxy report of patient HRQL) and four acceptability questions via a tablet (iPad).

Results: Patients (Mage = 9.5 SD = 5.5 years) were equally distributed across major pediatric cancer diagnoses. The majority of parents endorsed electronic screening as acceptable (70%-97%). Patient gender, diagnosis, intensity of treatment and time since diagnosis were not significantly correlated with family risk, caregiver distress, traumatic stress, or patient HRQL. The full regression model predicting total HRQL was significant (R 2  = .42, F(4,64) = 10.7, p = .000). Age (older) was a significant covariate, family risk and caregiver distress were significant independent predictors of poorer total HRQL. The full regression models for physical and psychosocial HRQL were significant; age and caregiver distress were independent predictors of physical HRQL, and age and family risk were independent predictors of psychosocial HRQL.

Conclusions: Screening is acceptable for families and important for identifying risk factors associated with poorer patient HRQL during childhood cancer treatment. Targeted interventions addressing family resource needs as well as parent distress identified through screening may be effective in promoting patient HRQL. 

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Parental Experiences of Raising a Child With Medium Chain Acyl-CoA Dehydrogenase Deficiency

Newborn screening enabling early diagnosis of medium chain acyl-CoA dehydrogenase deficiency (MCADD) has dramatically improved health outcomes in children with MCADD. Achieving those outcomes depends on effective management by parents. Understanding parental management strategies and associated anxieties and concerns is needed to inform provision of appropriate care and support. Semistructured interviews were conducted with a purposive sample of parents of children aged 2 to 12 years. Thematic analysis identified two main themes. Managing dietary intake examined how parents managed day-to-day dietary intake to ensure adequate intake and protection of safe fasting intervals. Managing and preventing illness events explored parental experiences of managing illness events and their approach to preventing these events. Management strategies were characterized by caution and vigilance and influenced by a lack of confidence in others to manage the condition. The study identifies the need for increased awareness of the condition, particularly in relation to emergency treatment.

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Caring for the Caregiver: Supporting Families of Youth With Special Health Care Needs

Caregivers of youth with special health care needs (YSHCN) are a critical part of the health care team. It is important for pediatric providers to be cognizant of the burden and strain caregiving can create. This article will discuss the health, psychological, social, and financial effects of caregiving, as well as strategies to screen for caregiver strain among families of YSHCN. Caregivers of YSHCN, for example, are more likely to report poor health status and demonstrate higher rates of depression and anxiety. Numerous validated screens for caregiver strain have been developed to address the multi-faceted effects of caregiving. Finally, we will discuss strategies to alleviate caregiver strain among this vulnerable population. We will describe services pediatric providers can encourage caregivers to utilize, including financial support through Supplemental Security Income (SSI), benefits available through the Family Medical Leave Act (FMLA), and options for respite care. Addressing caregiver strain is an important aspect of maintaining a family centered approach to the care of YSHCN. 

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Effect of Implementing Family-centered Empowerment Model on the Quality of Life in School-age Children Diagnosed with Rheumatoid Arthritis

Background: Rheumatoid arthritis is the most prevalent chronic rheumatologic disease of children. The quality of life (QOL) in these individuals is affected by physical pain, discomfort, treatment complications, and frequent absences from school leading to academic failure. No research similar to the present investigation was performed in this area. Aim: We aimed to evaluate the problems of children with rheumatoid arthritis. Moreover, we assessed the effect of family-centered empowerment on the QOL of these children.

Method: This randomized clinical trial was performed on 60 children aged 8-12 years diagnosed with rheumatoid arthritis in Akbar Pediatrics Hospital, Mashhad, Iran in 2018. The subjects were divided into test and control groups. The four stages of family-centered empowerment model, namely improvement of knowledge, self-efficacy, self-esteem, and assessment were executed for the test group. After a month, the inventory of pediatric quality of life was completed again. Data analysis was performed by Mann-Whitney U test, independent t-test, and paired t-test using SPSS version 16. Results: No significant difference was observed between the groups regarding age (P=0.351). In addition, the post-intervention QOL of the test group was significantly higher than the control group (P=0.004). There was a significant difference between the pre- and post-intervention QOL in the test group (P < 0.001).

Implications for Practice: This study indicated the effect of family-centered empowerment model on the physical, emotional, educational, and social dimensions of QOL of children aged 8-12 years diagnosed with rheumatoid arthritis. As a result, this model is recommended to empower the children with this disease or other chronic diseases and their caregivers.

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Caregiver Decision-Making for Terminally Ill Children: A Qualitative Study

Introduction: Many children are born with life-limiting illnesses. Medical decision-making for these children by caregivers is complex and causes significant psychosocial distress, which can be partially alleviated by effective communication with medical providers. In order for providers to support caregivers, this study explores how caregivers make decisions regarding the medical care of their terminally ill children.

Methods: Semistructured interviews were conducted among caregivers of terminally ill children. Participation was voluntary and confidential. The institutional review board approved the protocol. Transcripts were read and coded by 2 authors using inductive, concurrent analysis to reach thematic saturation and generate common themes.

Results: Nine interviews were completed, discussing the care of 10 children. Caregivers described decision-making as impacted by their relationships with medical providers of 2 distinct types-trusting and nontrusting. Trusting relationships were notable for a longitudinal relationship with medical staff who empowered caregivers and treated the patient primarily as a child. Nontrusting relationships were noted when the medical team objectified their child as a "patient" and appeared to withhold information. Also, nontrusting relationships occurred when caregivers felt frustration with needing to educate health-care providers about their child's illness.

Conclusion: Decision-making by caregivers of terminally ill children is complex, and supporting families in this process is a critical role of all medical providers. A trusting relationship with medical team members was identified as an effective tool for well-supported decision-making, which can potentially alleviate the suffering of the child and distress of the caregivers during this emotionally charged time.

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Caregiving burden of children with chronic diseases

Background: The care demands of children with chronic diseases can affect caregivers' health by imposing caregiving burden to them. The health status of caregivers plays a vital role in the quality of care provided to such children and in their quality of life.; Objective: To determine caregiving burden in caregivers and to identify relevant influential factors.

Methods: In this cross-sectional study, a total number of 249 caregivers of children with chronic diseases who referred to hospitalization and ambulatory departments of Bandar Abbas, Iran in 2016 were selected using convenience sampling method. The main caregivers who were older than 18 years and provided care to a sick child for at least three months consecutively were included. Caregiving burden was measured using the Caregiver Burden Scale. Data was analyzed SPSS 16 using descriptive statistics, Spearman's correlation coefficient and Mann-Whitney U test.

Results: Mean score of caregiving burden was 1.98 which was close to moderate level. The highest caregiving burden was observed in general strain dimension (2.35), and cerebral palsy imposed the maximum burden to caregivers (2.24). Correlation coefficient revealed that perceived caregiving burden was in connection with children's and caregivers' age, duration of disease and caregiving, child's level of disability, number of family members and income level (p<0.05). Mann-Whitney U test showed that female caregivers, villagers, and caregivers dealing with more than one patient experienced higher burden (p<0.05).

Conclusion: Different variables can increase caregiving burden. Therefore, planning for holistic and family-centered interventions to decrease caregiving burden is necessary for health care providers.

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A Double-Blind Randomized Controlled Trial in Effectiveness of Parent-Child Interaction Therapy on Psychological Indicator and Cortisol Level in Children of Caregiver with Cancer

Background: High-potency Cannabis (HPC) is commonly used by patients with cancer to relieve pain. Parents' HPC consumption can have an adverse effect on the physical, psychological, and social aspects of children.

Objectives: This study was conducted aimed to investigate the effectiveness of parent-child interaction therapy (PCIT) on the reduction of aggression and cortisol level in children of dependent cannabis caregiver with cancer.

Methods: In a double-blind randomized controlled trial, from March 2015 to October 2016, 50 caregivers residing in Tehran, Iran with metastatic cancer consuming HPC and their children with aggression problem were selected, using respondent-driven sampling (RDS) method and were randomly assigned to the experimental or control groups through block randomization. Changes in the level of aggression and cortisol during 12 weeks were analyzed by repeated measures correlation (rmcorr) and generalized estimation equation (GEE) through SPSS 22 software. Statistical significance was accepted at P < 0.01.

Results: The primary outcomes showed that 12 weeks of PCIT had a significant effect on the reduction of children's aggression and the level of salivary cortisol in children (P< 0.01). However, the results werenot stable until the follow-up stage (P=0.067). Secondary outcomes showed that there was a significant relationship between aggression index and cortisol level (P < 0.01).

Conclusions: The findings of the present study are consistent with the research background confirming the role of systematic and nonlinear (cyclic) look at behavioral and psychological problems during growth. These findings can be found in family setting and in educational settings such as kindergartens with clinical application.

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Readiness for Hospital Discharge, Stress, and Coping in Mothers of Children Undergoing Cardiac Surgeries: A Single-Center Prospective Study

Objectives: To examine the relationship between stress, coping, and discharge readiness in mothers of children undergoing congenital heart surgeries.

Design: Quantitative descriptive study at three time points: pre surgery (time point I), day of hospital discharge (time point II) and 2 weeks following discharge (time point III).; Setting: Tertiary care pediatric hospital in Singapore.

Participants: One hundred mothers whose children had undergone congenital heart surgeries.

Measurements and Main Results: Data collection included self-reported questionnaires of the Pediatric Inventory for Parents and the Coping Health Inventory for Parents across three time points. Readiness for Hospital Discharge Scale was administered at hospital discharge (time point II). The utilization of health services and support was reported at post discharge (time point III). One-hundred mothers participated in this study between May 2016 and July 2017. Their mean age was 35.8 years (SD = 7.0), and the mean age of their children was 3.7 years (SD = 4.6). There was significant reduction in mean stress difficulty (Pediatric Inventory for Parents) of mothers (F = 4.58; p = 0.013) from time point I to III. No significant changes were found in the overall mean coping score (Coping Health Inventory for Parents) of mothers across time. The mean overall score for the readiness for discharge (Readiness for Hospital Discharge Scale) of mothers at hospital discharge was 207.34 (SD = 29.22). Coping through family integration subscale and communication stress predicted discharge readiness of mothers (adjusted R = 0.11; p = 0.034). Mothers who reported higher overall stress (Pediatric Inventory for Parents) 2 weeks post discharge were more likely to call a friend or family member, visit the emergency department, or have their child readmitted to hospital following hospital discharge.;

Conclusions: We identified coping by family integration and communication-related stress as predictors of readiness for discharge. Strategies targeted at communication and family integration for discharge preparation may improve caregivers' readiness for hospital discharge.

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Impact of Respiratory Syncytial Virus-Confirmed Hospitalizations on Caregivers of US Preterm Infants

This study assessed the impact of respiratory syncytial virus-confirmed hospitalizations (RSVH) on caregivers of high-risk preterm infants. Caregivers for infants born at 29 to 35 weeks' gestational age and hospitalized for confirmed RSV disease responded to measures of self-rated and perceived infant stress (1-7; 7 = very stressful), perceived infant health (0-100; 100 = best imaginable health), and productivity impairment. Data were collected at hospital discharge through 1 month post-discharge. Caregiver responses indicated high stress levels, poor health, and productivity loss were reported at discharge; however, steady improvements were seen through 1 month post-discharge: caregiver-rated stress (from 6 to 2), infant stress (5 to 1), caregiver-perceived infant health (64 to 84), and productivity loss (mothers: 91% to 31%; fathers: 81% to 18%). Qualitative results indicated emotional impact, family routine disruption, financial concerns, and medical concerns persisted at 1 month post-discharge. This study found the caregiver burden of RSVH persists at least 1 month beyond discharge.

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Children with cerebral palsy in Ghana: malnutrition, feeding challenges, and caregiver quality of life

Aim: To assess feeding difficulties and nutritional status among children with cerebral palsy (CP) in Ghana, and whether severity of feeding difficulties and malnutrition are independently associated with caregiver quality of life (QoL).

Method: This cross-sectional survey included 76 children with CP (18mo-12y) from four regions of Ghana. Severity of CP was classified using the Gross Motor Function Classification System and anthropometric measures were taken. Caregivers rated their QoL (using the Pediatric Quality of Life Inventory Family Impact Module) and difficulties with eight aspects of child feeding. Logistic regression analysis explored factors (socio-economic characteristics, severity of CP, and feeding difficulties) associated with being underweight. Linear regression was undertaken to assess the relationship between caregiver QoL and child malnutrition and feeding difficulties.

Results: Poor nutritional status was common: 65% of children aged under 5 years were categorized as underweight, 54% as stunted, and 58% as wasted. Reported difficulties with child's feeding were common and were associated with the child being underweight (odds ratio 10.7, 95% confidence interval 2.3-49.6) and poorer caregiver QoL (p<0.001). No association between caregiver QoL and nutritional status was evident.

Interpretation: Among rural, low resource populations in Ghana, there is a need for appropriate, accessible caregiver training and support around feeding practices of children with CP, to improve child nutritional status and caregiver well-being.

What This Paper Adds: Malnutrition is very common among children with cerebral palsy in this rural population in Ghana. Feeding difficulties in this population were strongly associated with being underweight. Feeding difficulties were associated with poorer caregiver quality of life (QoL). Child nutritional status was not associated with caregiver QoL. 

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A study on the Italian validation of the family questionnaire

Expressed Emotion (EE) refers to the emotional behavior and patterns of communication of relatives toward patients, and it is a strong predictor of illness outcome across a variety of psychiatric disorders. The aims of the present study were to provide a contribution for the Italian validation of the Family Questionnaire (FQ), developed by Wiedemann et al. (2002). The FQ is a self-report questionnaire to assess the EE construct. Specifically, the present study aims to examine the psychometric properties (factorial structure, internal consistency and concurrent validity) of the Italian version of the FQ and to explore the differences between mothers' and fathers' emotional responses to patients with eating disorders. The sample was composed of 199 carers of patients with eating disorders (80 males and 119 females, M age = 49.63, SD = 6.24). Confirmatory Factor Analyses verified the original two-factor structure. The internal consistency coefficients of the two FQ dimensions were satisfactory. Further, the present study provided support for the concurrent validity of FQ, also within the Italian context. 

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Children with medical complexities: Addressing the gaps in respite care during transition from paediatrics to adult health care in Ontario

Respite care is one integral component of the transition process from paediatric to adult health care, and is of particular importance to individuals with medical complexities. Numerous gaps that exist within the current system limit a child and family's ability to access quality respite care during a time when it is often most needed. Identifying and addressing these gaps in a systematic and collaborative way presents an opportunity to improve the quality of life for this vulnerable, ever growing population and their families.

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Caregivers' Perceptions of Speech-Language Pathologist Talk About Child Language and Literacy Disorders

Purpose: This study examined caregiver perceptions of their child's language and literacy disorder as influenced by communications with their speech-language pathologist.

Method: The participants were 12 caregivers of 10 schoolaged children with language and literacy disorders. Employing qualitative methods, a collective case study approach was utilized in which the caregiver(s) of each child represented one case. The data came from semistructured interviews, codes emerged directly from the caregivers' responses during the interviews, and multiple coding passes using ATLAS.ti software were made until themes were evident. These themes were then further validated by conducting clinical file reviews and follow-up interviews with the caregivers.

Results: Caregivers' comments focused on the types of information received or not received, as well as the clarity of the information. This included information regarding their child's diagnosis, the long-term consequences of their child's disorder, and the connection between language and reading. Although caregivers were adept at describing their child's difficulties and therapy goals/objectives, their comments indicated that they struggled to understand their child's disorder in a way that was meaningful to them and their child.

Conclusions: The findings showed the value caregivers place on receiving clear and timely diagnostic information, as well as the complexity associated with caregivers' understanding of language and literacy disorders. The findings are discussed in terms of changes that could be made in clinical practice to better support children with language and literacy disorders and their families.

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Understanding transition for youth with spinal cord injury: Youth and caregiver perceptions

Objective: The purpose of this study is to understand facilitators of and barriers to achieving positive transition results among youth with spinal cord injury (SCI), and to identify areas for intervention to improve transition outcomes.

Design: This study utilized qualitative methods and analysis was completed using Interpretive Phenomenological Analysis. Participants: Participants included adolescents (n = 9, range = 13-18 years old), young adults (n = 14, range = 22-30 years old) with an SCI, and their respective caregivers (n = 17).

Results: The majority of participants had paraplegia (78%) and complete injuries (52%). The majority of caregivers were mothers (88%). Two primary themes were identified: Facilitators of Transition and Barriers to Transition. From these, five subthemes were developed for each category.

Conclusion: Youth with SCI and caregivers would benefit from organizations offering dynamic and progressive care options including social reintegration programs, peer-mentoring opportunities, and programs to teach individuals with SCI and families ways to develop motivation, resilience, and independent living skills. Last, better communication among healthcare providers and an increase of interdisciplinary and accessible adult healthcare facilities would foster greater transition successes for individuals with SCI.

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Basic Needs of Mothers with Children Undergoing Hemodialysis: A Meta-synthesis of Qualitative Studies

Background: Mothers of children undergoing hemodialysis encounter severe changes in their daily lives. It is of utmost importance to raise the awareness of treatment teams about the needs of these specific groups of mothers and different problems they may experience. The reason is that it can help health care professionals to support the mothers to fulfill their roles as the primary caregivers of such children.

Aim: This study aimed to identify basic needs in mothers of children undergoing hemodialysis.

Method: This meta-synthesis review of qualitative studies investigating the needs and experience of mothers whose children had kidney disease and published from January 1997 to October 2017. The articles were searched in four databases, including Web of Science, EMBASE, PubMed, and ProQuest. The search process was accomplished using the keywords "chronic kidney disease," "hemodialysis," "children," "mothers," "parents," "caregivers," "needs," "experiences," "perspectives," and "perceptions". Finally, 7 articles were chosen out of 567 papers and theses. The MAXQDA software was used to facilitate data management.

Results: The systematic review of the qualitative studies revealed three main themes, including the need for child care management skills, the need to maintain family cohesion, and the need for emotional-psychological support.

Implications for Practice: Mothers of children under hemodialysis should be considered as nursing clients. Accordingly, a multidisciplinary team can empower mothers to take care of the children under hemodialysis and preserve family coherence, as well as supporting them emotionally and psychologically.

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“Immersion in an ocean of psychological tension:” The voices of mothers with children undergoing hemodialysis

Background: Compared with other renal replacement therapies, hemodialysis treatment can impose restrictions on children with chronic renal failure and their mothers. Such pediatric illness can also lead to negative effects on mothers' physical and mental health. Knowledge about mothers' experiences can aid medical teams to support mothers in playing their roles as care managers. Providing supports to mothers can exert significant effects on mothers' health status and indirectly improve patient outcomes and whole family functioning. This study was aimed at understanding the meanings of care for children undergoing hemodialysis based on mothers' lived experiences.

Materials and Methods: This study is a qualitative research using hermeneutic phenomenology. A total of 17 interviews were conducted with 11 mothers of children undergoing hemodialysis. The interview sessions were recorded and transcribed, after which the data were analyzed using van Manen's methodology.

Results: The main themes identified in this study was “immersion in an ocean of psychological tension,” which suggests that the mothers of the children undergoing hemodialysis are overwhelmed by the numerous psychological pressures that they encounter during their children's treatment. This theme was constituted by the subthemes “bewilderment between hope and despair,” “endless concerns,” “agony and sorrow,” and “a sense of being ignored.”

Conclusions: The findings indicated the need to implement multilateral support measures that align with the educational, emotional–psychological, and financial needs of mothers with children receiving hemodialysis treatment. Such measures should be taken with the participation of multidisciplinary teams.

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Higher levels of caregiver strain perceived by Indian mothers of children and young adults with cerebral palsy who have limited self-mobility

Aim: Describe and compare the caregiver strain experienced among Indian mothers of children and young adults with cerebral palsy (CP) living in low resource settings.

Methods: 62 consecutive children and young adults with spastic CP (mean age 6.0 +/- 4.5, range 2-21) and their parents were recruited from an outpatient physiotherapy department for this cross-sectional study. Ability to walk was classified using the Gross Motor Function Classification System and mother's caregiver strain was measured using caregiver strain index (CSI).

Results: Mothers of children and young adults who have limited self-mobility perceived higher caregiver strain (mean CSI score 12.0 +/- 1.3, p <0.05) than mothers of children who can walk (mean CSI score 4.5 +/- 3.0, p <0.05). All 46 mothers of children and youth in GMFCS levels IV and V reported high levels of caregiver stress compared with only three of 16 mothers of children and youth who walk (levels I and II).

Conclusions: Physiotherapists and occupational therapists serving children and youth with CP are encouraged to partner with families to identify goals for ease of caregiving, activity, and participation at home and in the community.

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Barriers and Facilitators of Asthma Management as Experienced by African American Caregivers of Children with Asthma: An Integrative Review

African American children with asthma demonstrate significant health disparities and poor health outcomes. Understanding the burdens faced by parents and caregivers of children with asthma may be helpful to develop future interventions to address this disparity. The purpose of this integrative review was to reveal the barriers and facilitators of child asthma management experienced by African American caregivers. Whittemore and Knafl's (2005) method of integrative review was used to review 40 articles. The integrative review involved appraising the quality of the literature, conducting a thematic analysis, and evaluating the barriers and facilitators of pediatric asthma management experienced by African American caregivers. Barriers and facilitators were identified as themes. Barriers included caregiver burdens, and lack of home and neighborhood safety. Facilitators were family and community support, education and empowerment, and culturally competent healthcare providers. To improve the care of African American children with asthma, nurses should work to engage, communicate, and foster trust with families. Nurses should assess and address the family caregivers' burdens while emphasizing support systems.

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Educational demands of family members of children with special health care needs in the transition from hospital to home

Objectives: to analyze the educational demands of family members of children with special health care needs in the transition from hospital to home Methods: qualitative research conducted between February and June 2018, using the handbook on creativity and sensitivity dynamics, from the sensitive creative method; the participants were nine family caregivers of children admitted to a public hospital in Rio de Janeiro; the data were subjected to French discourse analysis

Results: the educational demands were clinical, centered on the categories complex and continuous care, technological care, modified habits, medication, development and mixed care, and social, related to the supplies and rights of children

Final Considerations: the social educational demand has emerged as a new demand to be incorporated in the care of these children. The transition from hospital to home should be progressive and have the nurse as its coordinator, with the objective of providing participatory, safe, quality care, articulated within a social network

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Parent-Professional Partnerships: Managing Behavior to Increase Hearing Aid Use

For development of spoken language, children need to consistently use appropriately fitted amplification. There is extensive variability in hearing aid use, particularly with younger children (Muñoz, Preston, & Hicken, 2014; Walker et al., 2013), and parents have reported challenges influencing how much children use their hearing aids including negative behaviors (Muñoz et al., 2015; Muñoz et al., 2016). Audiologists need to incorporate approaches to behavior changes with the families, which is often not a skill we have been trained to focus on. Teaching the parents a few simple steps might drastically reduce problematic actions and increase desired ones. Setting up a plan where the caregiver systematically reinforces what is wanted, ignores what is not wanted, and only punishes what is dangerous is one strategy that can be used. As part of a longitudinal case study, Muñoz et al. (2017) found that with the support of the audiologist, the parent learned how to provide positive reinforcements that motivated her child and increased the amount of time she provided individual attention. When child behavior interferes with hearing aid use, audiologists have an important role in partnering with parents to explore and address the issues in order to provide best practice.

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Barriers and Facilitators to Caring for a Child with Cerebral Palsy in Rural Communities of the Western Cape, South Africa

Family members of children with disabilities have become more involved in their children's care and have adopted the role of primary caregiver. Due to the varying degrees of the condition, children with cerebral palsy (CP) often require greater involvement from their caregivers. Fifteen caregivers for children with CP residing in rural communities of the Western Cape, South Africa, were interviewed to explore the barriers and facilitators that they encountered. Thematic analysis revealed that some progress has been made in terms of service provision to caregivers from previously disadvantaged communities. However, a lot more needs to be done to help caregivers with children with CP. Social support, increased public awareness of the causes of disability, financial support by the government and access to disability friendly services, such as respite care, special education and transport-related services, have been identified as essential. It is important to take this into consideration when designing future interventions in order to provide caregivers with support and services necessary to make an impact. 

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The role of hospice in the transition from hospital to home for technology-dependent children--A qualitative study

Aims and objectives: To report parent and professional perspectives of step-down care in assisting the transition from hospital to home, within one children's hospice in a constituent country of the United Kingdom.

Background: In recent years, increasing numbers of children-dependent on long term assisted ventilation have been noted. Meeting the complex physical, emotional and social needs of the child and family is challenging. Many of these children spend extended periods in hospital even when medically stable.

Design: This was a qualitative study using an inductive, semantic analytic approach within a realist epistemology.MethodsData collection was carried out in 2013. Interviews took place with parents (n = 5) and focus groups with professionals (n = 26) who had experience of step-down care.

Results: Multiple benefits of step-down in the hospice were clear. Both sets of accounts suggested that for children and families life was "on hold" in hospital. Hospice was considered a home-like environment where the child and family could "live again". Parents reflected that, in hospice they were "living, not existing" while professionals highlighted hospice as nurturing and empowering the whole family, promoting the child's development while safely meeting their clinical needs.

Conclusions and relevance to clinical practice: The study highlights a number of crucial benefits to the child and family both in the immediate and longer terms. The collective perspectives therefore endorse hospice as a potential viable choice for these children and their families during the always difficult, usually protracted transition from hospital to home.

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Severity of disease and quality of life in parents of children with alopecia areata, totalis, and universalis: A prospective, cross-sectional study

Background: Caregiver-oriented quality of life (QoL) research in alopecia areata is limited. No study has used a parent-tailored survey to examine the relationship between QoL and severity of alopecia as measured by Severity of Alopecia Tool (SALT) scores.

Objectives: This is a prospective study that describes QoL in parents of pediatric patients with all subtypes of alopecia areata and investigates the relationship between QoL and severity of disease, duration of disease, and age of patients.

Methods: Pediatric patients and their parents were invited to participate during clinic visits. Participating parents completed the Quality of Life in a Child's Chronic Disease Questionnaire (QLCCDQ) and the Family Dermatology Life Quality Index (FDLQI). A subset of children completed the Children's Dermatologic Life Quality Index (CDLQI). SALT scores at time of survey completion were recorded.

Results: In total, 153 patients were included. Significant mild-to-moderate negative correlations were found between SALT scores and FDLQI scores, QLCCDQ scores, and QLCCDQ emotional domain scores. Age of child correlated negatively with QLCCDQ scores but not FDLQI scores. No significant correlation was found between duration of disease and FDLQI scores, QLCCDQ scores, or QLCCDQ emotional domain scores.; Limitations: This study is limited by its small sample size and cross-sectional design.

Conclusions: Impaired parent QoL might be associated with increasing severity of disease and age of affected child but not duration of disease. Providers should tailor counseling accordingly and help parents set realistic expectations for long-term experience with the disease.

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Telehealth Interventions for Improving Self-Management in Patients With Hemophilia: Scoping Review of Clinical Studies

Background: The introduction of home therapy for hemophilia has empowered patients and their families to manage the disease more independently. However, self-management of hemophilia is demanding and complex. The uses of innovative interventions delivered by telehealth routes such as social media and Web-based and mobile apps, may help monitor bleeding events and promote the appropriate use of clotting factors among patients with hemophilia.; Objective: This scoping review aims to summarize the literature evaluating the effectiveness of telehealth interventions for improving health outcomes in patients with hemophilia and provides direction for future research.

Methods: A search was conducted in Ovid MEDLINE, EMBASE, and PubMed databases for studies that (1) focused on patients with hemophilia A or B; (2) tested the use of remote telehealth interventions via the internet, wireless, satellite, telephone, and mobile phone media on patients and caregivers; and (3) reported on at least one of the following patient-/caregiver-focused outcomes related to empowering patients/caregivers to be active decision makers in the emotional, social, and medical management of the illness: quality of life, monitoring of bleeding episodes, joint damage or other measures of functional status, medication adherence, and patients' knowledge. Implementation outcomes (user metrics, cost saving, and accuracy of electronic records) were also evaluated. Reviews, commentaries, and case reports comprising ≤10 cases were excluded.

Results: Sixteen articles fulfilled the inclusion criteria. The majority of the interventions (10/16, 62%) evaluated both implementation outcomes and patient-/caregiver-focused outcomes. User performance and accuracy and comprehensiveness of electronic records were also measured in most studies (4/16, 87%). The components of the interventions were rather homogenous and typically involved electronic logging and reminders for prophylactic infusions, reporting of spontaneous and traumatic bleeding events, monitoring of infusion product usage and home inventory, and real-time communication with health care professionals and hemophilia clinics. Telemedicine-supported education and information interventions seemed to be particularly effective among adolescent and young adult patients. Although the patients reported improvements in their health-related quality of life and perception of illness, telemonitoring devices did not appear to have a significant effect on quantifiable health outcomes such as joint health. Longitudinal studies seemed to suggest that the response and adherence rates to recording decreased over time.

Conclusions: Preliminary evidence from this review suggests that telehealth-delivered interventions could feasibly improve patients' adherence to medication use and promote independence in disease management. Given the complexity and resources involved in developing a mature and established system, support from a dedicated network of hemophilia specialists and data managers will be required to maintain the technology, improve adherence to prophylactic treatment and recording, and validate the electronic data locally.

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Health-related quality of life in parents of pediatric brain tumor survivors at the end of tumor-directed therapy

Objective: This study examines theoretical covariates of health-related quality of life (HRQL) in parents of pediatric brain tumor survivors (PBTS) following completion of tumor-directed therapy.; Methods: Fifty PBTS (ages 6-16) completed measures of neurocognitive functioning and their parents completed measures of family, survivor, and parent functioning.

Results: Caregiving demand, caregiver competence, and coping/supportive factors were associated with parental physical and psychosocial HRQL, when controlling for significant background and child characteristics.

Conclusion: Study findings can inform interventions to strengthen caregiver competence and family functioning following the completion of treatment, which may improve both parent and survivor outcomes.

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Health care and societal costs of the management of children and adolescents with attention-deficit/hyperactivity disorder in Spain: a descriptive analysis

Background: Attention-deficit/hyperactivity disorder (ADHD) is a common neurodevelopmental condition in childhood (5.3% to 7.1% worldwide prevalence), with substantial overall financial burden to children/adolescents, their families, and society. The aims of this study were to describe the clinical characteristics of children and adolescents with ADHD in Spain, estimate the associated direct/indirect costs of the disorder, and assess whether the characteristics and financial costs differed between children/adolescents adequately responding to currently available pharmacotherapies compared with children/adolescents for whom pharmacotherapies failed.

Methods: This was a multicenter, cross-sectional, descriptive analysis conducted in 15 health units representative of the overall Spanish population. Data on demographic characteristics, socio-occupational status, social relationships, clinical variables of the disease, and pharmacological and non-pharmacological treatments received were collected in 321 children and adolescents with ADHD. Direct and indirect costs were estimated over one year from both a health care system and a societal perspective.

Results: The estimated average cost of ADHD per year per child/adolescent was €5733 in 2012 prices; direct costs accounted for 60.2% of the total costs (€3450). Support from a psychologist/educational psychologist represented 45.2% of direct costs and 27.2% of total costs. Pharmacotherapy accounted for 25.8% of direct costs and 15.5% of total costs. Among indirect costs (€2283), 65.2% was due to caregiver expenses. The total annual costs were significantly higher for children/adolescents who responded poorly to pharmacological treatment (€7654 versus €5517; P = 0.024), the difference being mainly due to significantly higher direct costs, particularly with larger expenses for non-pharmacological treatment (P = 0.012).

Conclusions: ADHD has a significant personal, familial, and financial impact on the Spanish health system and society. Successful pharmacological intervention was associated with lower overall expenses in the management of the disorder.

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Long-Term Pain and Recovery After Major Pediatric Surgery: A Qualitative Study With Teens, Parents, and Perioperative Care Providers

Research developing targeted treatment focused on coping with children's long-term pain after surgery is needed because of the high prevalence of chronic pain after surgery. This qualitative study aimed to: 1) understand the child's and family's experiences of pain over the course of their surgical experience, and 2) gather stakeholder input regarding potential barriers and facilitators of perioperative intervention delivery. Fifteen children ages 10 to 18 years who underwent recent major surgery, their primary caregivers, and 17 perioperative health care providers were interviewed. Interviews were coded using semantic thematic analysis. The perioperative period presented emotional challenges for families. Families felt unprepared for surgery and pain. Recovery and regaining physical functioning at home was challenging. Families struggled to return to valued activities. Families reported interest in a perioperative psychosocial intervention. Providers endorsed that families would benefit from enhanced coping skills. They emphasized that families would benefit from more detailed preparatory information. Providers suggested that flexible intervention delivery at home would be ideal. Research developing interventions addressing pain and anxiety in children undergoing major surgery is critically needed. The findings of the present study can inform intervention development with the aim of improving short- as well as long-term recovery in children undergoing major surgery.; Perspective: This qualitative study examined children and their parents' experience of long-term pain and recovery after major surgery, identifying barriers and facilitators of perioperative intervention delivery. Families experienced surgery as stressful, and felt underprepared for pain and recovery. Families and health care providers expressed interest in a preoperative intervention teaching coping skills. 

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Meaning making and religious engagement among survivors of childhood brain tumors and their caregivers

Purpose: To describe how adolescent and young adult survivors and their mother-caregivers ascribe meaning to their postbrain tumor survivorship experience, with a focus on sense making and benefit findings and intersections with religious engagement.

Participants & Setting: Adolescent and young adult survivors of childhood brain tumors and their families, living in their community settings.

Methodologic Approach: Secondary analysis of simultaneous and separate individual, semistructured interviews of the 40 matched dyads (80 total interviews) occurred using conventional content analysis across and within dyads. Meaning is interpreted through narrative profiles of expectations for function and independence. Findings: Participants made sense of the brain tumor diagnosis by finding benefits and nonbenefits unique to their experiences. Meaning was framed in either nonreligious or religious terms.

Implications for Nursing: Acknowledging positive meaning alongside negative or neutral meaning could enhance interactions with survivors, caregivers, and their families. Exploring the meaning of their experiences may help them to reconstruct meaning and reframe post-tumor realities through being heard and validated.

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"You Are Not Alone": Advice Giving for Parents of Children Living with Complex Chronic Conditions

Parental advice giving serves as an important form of informational support for parents of children living with complex chronic conditions (CCCs). These messages can provide backchannel insights into social challenges, best practices, and may offer different forms of experiential wisdom garnered from their own parental caregiving experiences. Contributing to the naturalistic, health-context investigations of advice messages, we interviewed 35 parents who discussed their experiences with parenting their medically complex child. Part of the broader interview protocol asked parents about advice they would offer to other parents like them. We conducted a thematic analysis of parents' responses to these questions to understand advice content, form of advice giving messages, challenges experienced by parents, and suggested best practices for managing a child's CCC. We present our findings and discuss implications on educating health care professionals about how to cultivate advice networks and the need for more parent peer mentoring programs. 

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When Black and White Medicine Turns Gray: Exploring the Interplay and Meaning of Discoursing about Parenting a Child with a Complex Chronic Condition

Parents of children diagnosed with complex chronic conditions (CCCs) face many challenges with managing their child's health. As parents are tasked with competing demands and the constant changes required to provide the best care possible for their child, talk about contradictions regarding their dual, and oftentimes competing, roles and responsibilities as both parent and caregiver is likely to occur. Using relational dialectics theory (Baxter, 2011) as a framework, we conducted a contrapuntal analysis to analyze 35 White, mostly Christian parents' narratives about their experiences managing their child's healthcare. Two primary discourses emerged: the centripetal discourse of normal health and the centrifugal discourse of difference. The interplay between these two primary discourses led to a hybrid discourse: difference is our new normal. Within this discourse, parents discussed previous speech encounters where they relied upon the co-construction of a new normal with others who were living or willing to live in their new reality. Our findings emphasize how an assessment of parents' talk conveys their discoursedependence with navigating the inevitable uncertainties associated with managing their child's CCC. In addition, we discuss how parents co-construct their new normal in the face of unique family functioning that is structurally different from societal expectations and social norms about parenting and pediatric health care management. 

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"You Know the Medicine, I Know My Kid": How Parents Advocate for Their Children Living With Complex Chronic Conditions

Caring for a child with a chronic condition has received considerable attention in the pediatric health literature. Today, approximately 1 out of 5 North American children are diagnosed with a chronic condition that requires parents to become caregivers and advocates. Although advocacy is regarded as a significant aspect to parental caregiving, more research is needed to better define this oversimplified and misrepresented concept in clinical practice and research. Subsequently, we interviewed 35 parents of children diagnosed with complex chronic conditions. Within our analysis, we identified three themes that elaborate upon how parental advocacy is socially constructed through communication behaviors and partnerships with other people (e.g., medical professionals, family, school educators). We also discuss the emotional side of advocacy, and proffer suggestions to practitioners who work with parents to form collaborative care teams.

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Caring and living with Prader-Willi syndrome in Italy: integrating children, adults and parents' experiences through a multicentre narrative medicine research

Objectives: Prader-Willi syndrome (PWS) significantly impacts health-related quality of life; however, its relational and existential aspects remain unknown in Italian clinical and social debate. The project aimed to investigate the impact of PWS on illness experience through narrative medicine (NM) to understand the daily life, needs and resources of patients with PWS and their caregivers, and to furnish insights for clinical practice.

Design and Setting: The project involved 10 medical centres of the Italian Network for Rare Diseases and PWS family associations and targeted underage and adult patients with PWS and their caregivers. Written interviews, composed by a sociodemographic survey and a narrative, were collected through the project's website. Three dedicated illness plots employed evocative and open words to facilitate individual expression and to encourage reflection. Narratives were analysed through NVivo software. Researchers discussed the results with the project's steering committee. 

Participants: Twenty-one children and adolescents and 34 adults with PWS joined the project, as well as 138 caregivers. A PWS diagnosis or the caregiving of a patient with PWS older than 5 years represented the eligibility criteria, as well as the willingness to share their illness experience by writing and the ability to communicate in Italian.; Results: The analysis of narratives led to understanding the PWS social and relational issues concerning diagnosis and current management, PWS daily experiences and social contexts, PWS implications in the working sphere and participants' future perspectives. Narratives demonstrated that PWS management affects relationships and work-life balance and that social stigma remains present.

Conclusion: The project represented the first effort to investigate the impact of PWS on illness experience in Italy through NM while considering the perspectives of patients with PWS and their caregivers. The findings indicated that a multiprofessional approach is fundamental to ensure adequate treatment and provided elements for its improvement. 

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Stress among the caregivers of mentally disabled children visiting a rehabilitation centre in Chennai, Tamil Nadu - A cross-sectional study

Caregiving is a complex health care activity, from an informal family level activity; it is becoming a major part of health care. In India, family members are mostly caregivers for persons with mental disabilities. The present study assessed the stress among the caregivers of mentally disabled children (Autistic Spectrum Disorder, Intellectual Disability, and Attention Deficit Hyperactivity Disorder) and found the association between stress and selected socio-demographic variables. This was an institutional based cross-sectional study with a duration of six months, i.e. from January 2019 to June 2019. This study was conducted among the caregivers availing services (therapies and follow-ups) at the National Institute for Empowerment of Persons with Multiple Disabilities, Chennai, Tamil Nadu. The level of stress was assessed using the Kingston Caregiver Stress Scale. This study was conducted with time-bound complete enumeration method, by which data from 101 participants were collected. The results of this study showed that 64.3% of the caregivers had the severe level of stress, 21.7% of the caregivers had a moderate level of stress and 13.8% of the caregivers had mild stress. Hence, it can be concluded that caregiver's stress is an important element to determine the burden and the unexplained psychological pressure a caregiver holds onto.

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Impact of Parenting a Child with Cerebral Palsy on the Quality of Life of Parents: A Systematic Review of Literature

Purpose: The implications of parenting a child with cerebral palsy (CP) are multifaceted, as parents have to cope with their child's functional limitations and specific needs, and prepare for the possibility of long-term dependence. There has been significant research on the consequences of managing these parenting tasks. This article reviews the literature on the effects of parenting children with CP, and summarises the related factors. Methods: A systematic search of online databases was conducted and, based on the reference lists of selected articles, further studies were identified. Thirty-six articles that met the inclusion criteria were analysed.

Conclusion & Implication: Parents of children with CP were found to have lower quality of life, associated with high levels of stress and depression, due to factors such as child behaviour and cognitive problems, low caregiver self-efficacy and low social support. The implications of these findings in relation to the planning and development of interventions addressing the family as a whole are discussed. The aim is to enhance parents' competence and resources so that they are better able to cope with the demands of parenting their children.

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Experiences From a Coaching Program for Parents of Children and Adolescents With Type 1 Diabetes Developed Through Experienced-Based Co-Design (EBCD)

Many children and adolescents with type 1 diabetes (T1D) have difficulties reaching the national treatment goal for HbA1c (long-term blood sugar) which is associated with increased risk for complications. This makes it important to explore what patients and their caregivers describe important in coping with everyday life. The study has been conducted within a pediatric diabetes team in the south of Sweden. The aim was to explore how Experienced-Based Co-Design (EBCD) can be used to identify, test, and evaluate improvement efforts in order to support the family with a child with T1D. A modified variant of EBCD based on focus groups, workshops, and interviews with stakeholders was used. The improvement proposal parental coaching was tested and was appreciated by the participants. The qualitative content analysis of the interviews showed that the coaching program contributed to better confidence and self-efficacy. Both coaches and coachees described that the coaching contributed to better competence and a feeling of hope after attending the coach program. Experienced-Based Co-Design gave an opportunity to explore what´s important to improve, based on experiences and needs of several stakeholders. 

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Impact of Race and Socioeconomic Status on Psychologic Outcomes in Childhood Cancer Patients and Caregivers

Complex relationships between race and socioeconomic status have a poorly understood influence on psychologic outcomes in pediatric oncology. The Family Symptom Inventory was used to assess symptoms of depression and anxiety in pediatric patients with cancer and their caregivers. Separate hierarchical linear regression models examined the relationship between demographic variables, cancer characteristics, socioeconomic status, and access to care and patient or caregiver depression/anxiety. Participants included 196 pediatric patients with cancer (mean age, 11.21 y; 49% African American) and their caregivers. On average, caregivers reported low levels of depression/anxiety. Symptoms of depression and anxiety in patients were correlated with poorer mental health in caregivers (r=0.62; P<0.01). Self-reported financial difficulty (β=0.49; P<0.001) and brain cancer diagnosis for their child (β=0.42; P=0.008) were significantly associated with depression and anxiety in caregivers. Analysis did not reveal significant associations between race, household income, or access to care and patient or caregiver depression/anxiety. Perception of financial hardship can adversely impact mental health in caregivers of children with cancer. Psychosocial assessment and interventions may be especially important for caregivers of patients with brain tumors and caregivers who report feeling financial difficulty.

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Measuring the outcomes of long-term care for unpaid carers: comparing the ASCOT-Carer, Carer Experience Scale and EQ-5D-3 L

Background: The ASCOT-Carer and Carer Experience Scale are instruments designed to capture aspects of quality of life 'beyond health' for family carers. The aim of this study was to compare and validate these two carer care-related measures, with a secondary aim to compare both instruments to the three-level EQ-5D (EQ-5D-3 L) measure of health-related quality of life.

Methods: An interview survey was conducted with 387 carers of adults who used long-term care (also known as social care) support in England. Construct validity by hypothesis testing was assessed using Pearson correlation coefficient. Exploratory factor analysis was also applied to investigate the dimensionality of the combined items from the ASCOT-Carer and CES (as measures of carer quality of life 'beyond health') and the EQ-5D (as a measure of health-related quality of life).

Results: In the construct validity analysis, hypothesised differences in correlations were observed with two exceptions. The exploratory factor analysis indicated that the ASCOT-Carer, CES and EQ-5D-3 L items loaded onto three separate factors. The first factor comprised the seven ASCOT-Carer items plus two CES items (activities outside caring, support from friends and family). The second factor comprised three of the six CES items (fulfilment from caring, control over caring and getting on with the person you care for). The third factor included four of the five EQ-5D-3 L items.

Conclusion: The findings indicate that the ASCOT-Carer, CES and EQ-5D-3 L capture separate constructs of social care-related quality of life (ASCOT-Carer) and carer experience (CES), which partially overlap in relation to activities outside caring and social support, and health-related quality of life (EQ-5D-3 L). The ASCOT-Carer and CES are both promising measures for the evaluation of social care support for carers that capture aspects of quality of life 'beyond health'. The choice of whether to use the ASCOT-Carer or CES depends on the study objectives. 

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Two Futures: Financial and Practical Realities for Parents of Living With a Life Limited Child

Today more and more children are living with complex health care needs, many of these children are living with life limiting and/or threatening conditions, some are medically fragile. To live a childhood these children must live in communities and with their families. In most cases this means the child’s carers, their parents, most often their mothers, are required to undertake a great deal of the child’s care. During a project on parental coping I became aware of the ways in which parents were restructuring their working lives in order to meet the demands of the nursing and medical care needs of their children. In this paper I relate the stories we discovered in this qualitative study and discuss the tensions between parental and state’s responsibility for children, carers and the political and cultural rights and responsibilities pertaining to children’s care. I use Margret Urban Walker’s ideas of expressive collaborative morality to argue that the care of life limited and life threatened children should be framed in a negotiation between the state and the carers, both informal and professional. That such an agreement should include a covenant to assist parents and siblings when a child dies to recover and adjust to their loss, in recognition of the work they have performed in caring for the child during their child’s life and their death.

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Parents’ satisfaction with child psychiatry

Aims: Effective social and healthcare services are important for recipient point of view. Reforms in field of social and health care affect straight to the lives of children, adolescents and families. Voice of the parents’ of the child psychiatric patient must be heard during reforms. The purpose of this study was to explore the parents’ satisfaction with the child psychiatric clinic in southern Finland in the autumn 2017.

Methods: The questionnaire for parents’ included 12 questions related to a single visit experience in clinic. In total, 168 responses were collected at the end of the visits. Likert scale responses were analysed statistically with nonparametric methods for the relationship between variables such as the respondent relationship to the child and the type of visit. The open‐ended questions were analysed by qualitative content analysis.

Results: The relationship with the child was multifaceted: 54% were mothers and 18% fathers, 13% other adults and 3% child welfare workers. The respondents’ age distribution was 18–62 years, and the average age was 39 years. The respondents were satisfied with their visit at the clinic. The respondents’ relationship with the child was determined how successful the visit was in the point of view of respondent in some cases. There was no difference in the experience for the first‐time visitors and returning visitors or the parents′ who had visited the clinic at the same time.

Conclusions: Even there was significant difference experiencing the visit in some cases, the respondents were satisfied and visits deemed to have benefit. The speed and availability of care and the skills and competence of the staff were appreciated. Atmosphere in the clinic was warm and positive. Development point of view, lack of information about the duration of the visit was raised to parents at the beginning of the visit.

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Family Perspectives on Telemedicine for Pediatric Subspecialty Care

Background: Children often have difficulty accessing subspecialty care, and telemedicine may improve access to subspecialty care, but information is lacking on how best to implement telemedicine programs to maximize acceptance and, ultimately, maximize impact for patients and their families.

Methods and Materials: To understand how subspecialty telemedicine is perceived and to identify design elements with the potential to improve telemedicine uptake and impact, we conducted and analyzed semi-structured interviews with 21 informants, including parents and caregivers of children with subspecialty care needs and adolescent and young adult patients with subspecialty care needs.

Results: Although informants saw the potential value of using telemedicine to replace in-person subspecialty visits, they were more enthusiastic about using telemedicine to complement rather than replace in-person visits. For example, they described the potential to use telemedicine to facilitate previsit triage encounters to assess whether the patient was being scheduled with the correct subspecialist and with the appropriate level of urgency. They also felt that telemedicine would be useful for communication with subspecialists after scheduled in-person visits for follow-up questions, care coordination, and to discuss changes in health status. Informants felt that it was important for telemedicine programs to have transparent and reliable scheduling, same-day scheduling options, continuity of care with trusted providers, clear guidelines on when to use telemedicine, and preservation of parent choice regarding method of care delivery.

Conclusions: Parents and patients articulated preferences regarding pediatric subspecialty telemedicine in this qualitative, hypothesis-generating study. Understanding and responding to patient and caregiver perceptions and preferences will be crucial to ensure that telemedicine drives true innovation in care delivery rather than simply recapitulating prior models of care.

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Take A Breath: study protocol for a randomized controlled trial of an online group intervention to reduce traumatic stress in parents of children with a life threatening illness or injury

Background: A substantial proportion of parents whose child is diagnosed with a life-threatening illness, experience high levels of distress that can lead to long-term difficulties in mental health, family functioning and child adjustment. This study evaluates the efficacy of an Acceptance Commitment Therapy-based group intervention designed to reduce distress symptoms in these parents. The program is delivered using videoconferencing to overcome factors that prevent participation in traditional face-to-face therapy.

Method/design: The study is a randomized control trial of the Take A Breath group intervention for parents demonstrating elevated symptoms of acute stress, delivered via videoconferencing in six 90 min group sessions. Participants are the primary caregivers of children aged 0 to 18 years admitted for a life threatening illness or injury to the Oncology, Cardiology, Neurology or Intensive Care Departments of a tertiary pediatric hospital. Parents will be randomized to intervention or waitlist control 4-10 months after their child's diagnosis. Measures will be collected prior to and immediately post intervention for intervention and waitlist parents to assess program efficacy. Intervention parents will be followed up at 6 months to assess the maintenance of program effects. We predict that intervention parents will show fewer symptoms post intervention than waitlist parents (primary outcomes: traumatic stress, depression, anxiety, stress symptoms), reflecting improvements in the psychological skills addressed in the intervention (mediating factors). It is anticipated that reductions in mental health difficulties for intervention parents will be maintained up to 6 months post-intervention and will be associated with broader improvements in parents' adjustment, child adjustment and child wellbeing (secondary outcomes).

Discussion: This study is unique in evaluating a group intervention delivered to parents of children affected by of a diverse range life-threatening illness or injury. Online communication technology is employed to reduce participation barriers. If proven efficacious, this trans-diagnostic approach offers the potential for broad use as part of the suite of psychosocial services provided to families through tertiary pediatric settings.

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Relationship Between Early Social-Emotional Behavior and Autism Spectrum Disorder: A High-Risk Sibling Study

Social-emotional behavior in autism spectrum disorder (ASD) was examined among high-risk (HR; siblings of children diagnosed with ASD) and low-risk (LR; no family history of ASD) toddlers. Caregivers completed the Infant-Toddler Social Emotional Assessment (ITSEA) at 18 months, and blind diagnostic assessment for ASD was conducted at 36 months. Results indicated impairment in social-emotional functioning among HR toddlers subsequently diagnosed with ASD compared to other HR and LR toddlers, such that ITSEA domains (Internalizing, Dysregulation, Competence) and subdomains predicted later ASD symptoms and diagnosis. Receiver operating curves of optimal ITSEA cutoffs ranged from 0.23 to 0.44 for sensitivity, and 0.74 to 0.89 for specificity. Although classification accuracy for ASD was limited, group differences highlight the importance of considering social-emotional development when assessing ASD risk.

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Family Resilience From the Perspective of Caregivers of Youth With Sickle Cell Disease

Families coping with sickle cell disease (SCD) often face heightened psychosocial risk factors, and research in pediatric SCD has often focused more on this area than resiliency factors. The aim of this study was to gain a better understanding of family resiliency in SCD based on caregiver perspectives. A secondary qualitative analysis was conducted with data from a mixed-methods study of caregivers of youth with SCD (n=22). Qualitative analyses involved coding based on 2 resiliency frameworks, organizing coding categories into themes, and systematically reintegrating these themes into a conceptualization that reflected family resiliency. Themes aligned well with the resiliency frameworks and related to family belief systems and meaning-making around SCD (acceptance of SCD, positive attitude, religious faith), family organization and adaptation (flexibility, stability, social supports), and the importance of communication and problem-solving. Study findings emphasize the importance of assessing resilience in families of youth with SCD and suggest the potential clinical benefits of developing psychosocial interventions based on family strengths.

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The Lived Experience of Parents of Children with Special Healthcare Needs on Public and Private Insurance: A Phenomenological Study

Due to recent advances in medical technology, the number of children with special healthcare needs (CSHCN) is steadily growing in the United States. CSHCN comprise more than 40% of overall healthcare costs nationwide, even though this group is only comprised of 16% of the U.S. child population. There are significant differences between private and public health plans in terms of cost, adequacy, and parent satisfaction. As an added benefit, some public and private health insurance plans offer nursing care coordination (or nursing case management) services. The purpose of this study was to understand the experiences of parents of CSHCN enrolled in public and private insurance with or without a nurse care coordinator assigned. A phenomenological approach was used. One-to-one semi-structured interviews were conducted with 16 participants. Colaizzi’s (1978) eight steps of data analysis was the selected methodological interpretation. Five themes emerged from this study: Struggle with Self- Preservation, Abandonment and Isolation, Self-Reliance and Advocate, Interdependence, and Lifeline. These study findings highlighted the major differences with parents navigating their child’s health insurance. These differences were dependent on the type of insurance and sources of support available. The experience of parents with a nurse care coordinator differed from parents without a nurse. Parents of CSHCN enrolled in public insurance with a nurse care coordinator considered the nurse to be a primary source of support. These nurses were instrumental in solving problems with the public health plan. On the contrary, parents with CSHCN enrolled in private insurance without a nurse care coordinator carried this additional burden. There were also noticeable differences in parents’ satisfaction with the adequacy and cost of their child’s health insurance. Parents of CSHCN enrolled in private insurance voiced dissatisfaction with higher costs associated with their child’s plan. Meanwhile, parents of CSHCN enrolled in Medicaid expressed that out-of-pocket expenses were covered. Results from this study can be used to make policy changes by insurance companies. Incorporating nursing care coordination not only results in healthcare savings for the health plan but improved health outcomes for its members as well.

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Perceived discrimination and self-esteem among family caregivers of children with autism spectrum disorders (ASD) and children with intellectual disabilities (ID) in Spain: The mediational role of affiliate stigma and social support

Background: People with autism spectrum disorders (ASD) and people with intellectual disabilities (ID) are stigmatized, and therefore discriminated against worldwide and, on many occasions, this stigma and discrimination are expanded to include their family caregivers. The main objective of this research was to examine the consequences of perceived discrimination on family caregivers of children with ASD and children with ID.

Methods: The sample consisted of 109 Spanish caregivers of children with ASD and 83 caregivers of children with ID. They completed four questionnaires: Multidimensional Perceived Discrimination Scale, Affiliate Stigma Scale, Social Support Questionnaire and Rosenberg Self-Esteem Scale.

Results: Using path analysis, we found support for a model in which personal discrimination perceived by caregivers was positively associated with affiliate stigma, which, in turn, was negatively related to caregivers' self-esteem. The model also shows the total mediational role of affiliate stigma in the association between perceived discrimination and self-esteem and the partial mediational role that social support plays in the association between perceived discrimination and caregivers' self-esteem.

Conclusions: Caregivers' perceived discrimination negatively influences caregivers' self-esteem, but this relationship is mediated by both affiliate stigma (totally) and social support (partially). These results have theoretical and practical implications and may contribute to improving the quality of life of parents of children with ASD and ID that in turn would result in an improvement of the quality of life of their children.

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Caregiver and family quality of life for children with fetal alcohol spectrum disorder

Background: Fetal alcohol spectrum disorder (FASD) is a common neurodevelopmental condition. Given that individuals with FASD can experience lifelong challenges, one field of research that could be applicable is the paediatric chronic health literature.

Aims: The aim of the current study was to investigate the utility of the Pediatric Quality of Life Inventory (PedsQL) Family Impact Module, designed to measure the impact of paediatric chronic health conditions on caregivers and families.

Methods and procedures: 109 caregivers of children with FASD completed an online survey that assessed a range of areas including, caregiver and family quality of life, caregiver mental health and child behaviour.

Outcomes and results: Overall, caregivers reported the areas most impacted on the PedsQL module were Family Daily Activities and Worry. Caregiver's country of residence, mental health, child gender, and level of child behaviour problems were found to be predictors of caregiver and family quality of life.

Conclusions and implications: The results demonstrate that there are multidimensional challenges for caregivers and families. These findings have important implications for policy and practice regarding the provision of supports and services for children with FASD and their families.

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Direct and indirect costs of families with a child with acute lymphoblastic leukaemia in an academic hospital in China: a cross-sectional survey

Objectives: To estimate the direct and indirect costs in families with a child with acute lymphoblastic leukaemia (ALL) in China.

Design: A single-site, cross-sectional survey of primary caregiver of a child with ALL was performed.; Setting and Participants: We analysed the total costs incurred on the completion of the first three-phase treatment (induction, consolidation and intensification), which requires intensive hospitalisation. Eligible patients were (1) diagnosed with ALL between 2010 and 2012 at Shanghai Children's Medical Center (SCMC), (2) aged 0-14 years at diagnosis and (3) completed the first three-phase treatment at SCMC. The data were collected between October 2014 and December 2014.

Outcome Measures: We decomposed the total costs into three categories: (1) direct medical costs, which were further divided into outpatient and inpatient costs; (2) direct non-medical costs, which referred to expenses incurred in relation to the illness; and (3) indirect costs due to productivity loss.; Results: A total of 161 patients were included in the study. Direct medical costs accounted for about 51.7% of the overall costs, and the rest of 48.3% of the total costs were attributed to direct non-medical costs and indirect costs. Regarding families with different household registration type (rural vs urban), the total costs were significantly different between the two groups (US $ 36 125 vs US $ 25 593; p=0.021). Specifically, urban families incurred significantly larger indirect costs than rural families (US $ 12 343 vs US $ 4157; p=0.018). Although the direct non-medical costs were not significantly different, urban families spent more money on hygiene cleaning products and auxiliary treatment equipment (p=0.041) and gifts and treats (p=0.034) than rural families.

Conclusions: The financial burden faced by the Chinese families with a child with ALL was tremendous, and the distributions of costs among the three categories were different between urban and rural families. (© Author(s) (or their employer(s)) 2019. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

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Determinants of health-related quality of life proxy rating disagreement between caregivers of children with cancer

Purpose: Proxy reports of health-related quality of life (HRQoL) are commonly used in pediatric oncology. However, it is not known if caregivers' reports differ. This study therefore aims to compare paternal and maternal proxy reports, and explore determinants of couple disagreement (sociodemographic and medical characteristics, and parental QoL and distress).

Methods: Both parents completed the PedsQL generic (child's HRQoL), Short Form-12 (own QoL) and Distress Thermometer for Parents. To assess agreement in child HRQoL, intra-class correlation coefficients (ICCs) were calculated. Differences between fathers/mothers were assessed with paired t tests. Systematic disagreement patterns were visualized with Bland-Altman plots. Characteristics of parental couples with a mean proxy difference in the highest quartile (highest proxy score minus lowest proxy score) were explored with multiple logistic regression analysis.

Results: Parents of 120 children with cancer (87% post-treatment, mean age 11.0 ± 5.7 years) participated. No significant differences were found between paternal and maternal proxy scores, and agreement was good on all scales (ICCs 0.65-0.83). Bland-Altman plots revealed no systematic disagreement patterns, but there was a wide range in magnitude of the differences, and differences went in both directions. Couples with a mean proxy difference (irrespective of which direction) in the highest quartile (± 20 points) were more likely to have a child in active treatment, with retinoblastoma or relapsed disease, and to diverge in their own QoL.

Conclusions: If proxy reports of only one parent are available, clinicians may reasonably assume that paternal and maternal reports are interchangeable. However, if in doubt, respondent's sex is not of major importance, but clinicians should be aware of patient's and family's characteristics.

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Pediatric Traumatic Brain Injury: Families and Healthcare Team Interaction Trajectories During Acute Hospitalization

Purpose: To identify common or unique family-healthcare team interactions during acute hospitalization for pediatric patients with a traumatic brain injury (TBI) using a life course trajectory (LCT) theoretical approach.

Design and Methods: A 3-year prospective observational study of 35 children, ages 5 days to 15 years who were admitted to an urban Level-1 trauma hospital for a TBI. We defined brain injury severity using the admission Glasgow Coma Scale score (mild 13-15, moderate 9-12, and severe 3-8). Using a life course trajectory theoretical approach, we extracted from the patient's electronic health record the first eight-days of hospitalization and plotted the number and type of daily family-healthcare team interactions to visualize patterns or phases.

Results: A general trajectory for each severity group was determined. When individually compared, family trajectories were similar based on injury severity. Visual interpretations of family-healthcare interactions based on the brain injury severity yielded three phases. The interactions phases included: (1) information seeking, (2) watchful waiting and (3) decision making.

Conclusion: Using a LCT approach, phases identified based on injury severity and family interactions support the need for proper timing of tailored communication and support. The findings also support the development of future best care practices that facilitate family's needs, decrease caregiver burden to improve functional outcomes. 

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Core outcome domains of pediatric palliative care for children with severe neurological impairment and their families: A qualitative interview study

Background: The interest in outcome measurement in pediatric palliative care is rising. To date, the majority of studies investigating relevant outcomes of pediatric palliative care focus on children with cancer. Insight is lacking, however, about relevant outcome domains for children with severe neurological impairment and their families.

Aim: The aim of this study was to identify meaningful outcome domains of pediatric palliative care for children with severe neurological impairment and their families.

Design: A qualitative research design following a constructivist research paradigm was employed. Guided interviews were conducted with parents of children with life-limiting conditions and severe neurological impairment and professional caregivers. The data were analyzed using qualitative content analysis.; Setting: Overall, 10 cooperating pediatric palliative care institutions across Germany (outpatient and inpatient settings) aided in the recruitment of eligible parents and professional caregivers. A total of 11 interviews with 14 parents and 17 interviews with 20 professional caregivers were conducted.

Results: Six core outcome domains of pediatric palliative care for children with severe neurological impairment and their families were identified, namely (1) symptom control, (2) respite and support, (3) normalcy, (4) security, (5) empowerment, and (6) coping with the disease, each consisting of 1 to 13 individual aspects.

Conclusion: As for other diagnostic groups, symptom control is a relevant outcome domain for children with severe neurological impairment. However, other outcome domains which focus on the whole family and take into account the long disease trajectory, such as respite and support, security, empowerment, and coping with the disease, are also crucial.

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Educational video: a training strategy for caregivers of children with cleft lip and palate

Objective: To check the knowledge informal caregivers of children with cleft lip and palate acquire about the postoperative care of cheiloplasty and palatoplasty through the use of an educational video.

Methods: Randomized clinical trial conducted with 80 caregivers of children with cleft lip and palate, arranged into two groups: experimental (G1) and control (G2). Data collection occurred during the child's hospital stay, in three stages, using a structured questionnaire and an educational video developed and validated for this study.

Results: There was evidence of improvement in the acquisition of knowledge about postoperative care in both groups (p <0.001), but it was higher in G1 compared to G2.

Conclusion: The educational video was shown to be effective to train caregivers of children with cleft lip and palate after cheiloplasty and palatoplasty.

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Parents’ decision-making about attending an emergency department with their child

There is a possibility that front-line services, particularly out-of-hours services, are not accessible to some parents. The aim of this service evaluation was to gain a better understanding about visits to one emergency department (ED) in the south of England by children and their parents or carers. The specific focus was to elucidate the reasons behind frequent ED attendance and indicate a potential redesign of services.Semi-structured interviews were conducted with 13 parents. The overarching theme emerging from the transcripts was parents’ complex decision-making to ensure their children’s healthcare needs were addressed. Parents highlighted the absence of consistent specialist community services to support them in caring for their children at home and to act as a resource for decision-making relating to their child’s care. Telephone and online information services such as NHS 111 were perceived as not always helpful. Parents were able to identify models of out-of-hours care which they saw as potentially more accessible and useful, such as the provision of a specialist paediatrician at GP surgeries. Further evaluation is necessary to make it possible to integrate parents’ views and needs into service design and delivery.

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How do you define recovery? A qualitative study of patients with eating disorders, their parents, and clinicians

Objective: Recovery from an eating disorder (ED) may be defined differently by different stakeholders. We set out to understand the definition of ED recovery from the perspective of patients, their parents, and clinicians.

Method: We recruited patients with EDs (n = 24, ages 12–23 years) representing different diagnoses (anorexia nervosa n = 17, bulimia nervosa n = 4, binge‐ED n = 2, avoidant/restrictive food intake disorder n = 1), along with their parents (n = 20), dietitians (n = 11), therapists (n = 14), and primary care providers (n = 9) from three sites: Boston Children's Hospital, University of Michigan C. S. Mott Children's Hospital, and Penn State Hershey Children's Hospital. In‐depth, semi‐structured, qualitative interviews explored participants' definitions of recovery. Interviews were analyzed using inductive data‐driven thematic analysis. Statistical analyses followed to examine the distribution within each theme by respondent type. Results: Qualitative analysis resulted in the emergence of four overarching themes of ED recovery: (a) psychological well‐being, (b) eating‐related behaviors/attitudes, (c) physical markers, and (d) self‐acceptance of body image. Endorsement of themes two and four did not significantly differ between patients, parents, and clinicians. Clinicians were significantly more likely to endorse theme one (χ2 = 9.90, df = 2, p =.007, φc = 0.356) and theme three (χ2 = 6.42, df = 2, p =.04, φc = 0.287) than patients and parents.

Discussion: Our study demonstrates overwhelming support for psychological markers as indicators of ED recovery by all three groups. Clinicians should remain open to additional markers of recovery such as body acceptance and eating‐related behaviors/emotions that may be of critical importance to patients and their caregivers.

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Being a dad to a child with Down’s syndrome: Overcoming the challenges to adjustment

Background: Historically, research exploring the impact of having a child with an Intellectual Disability (ID), has focussed exclusively on mothers. The present study aimed to investigate fathers’ experiences of parenting a child with Down's syndrome (DS), their contributions, influences on family functioning and inclusion in their child's support provision.

Method: Semi‐structured interviews were conducted with 15 fathers. Interviews were analysed using Grounded Theory (GT).ResultsFathers’ adjustment appeared to be on a fluid trajectory with three key categories influencing this: “Accommodating the Child,” “Adapting the Parental/Spousal Role” and “Adapting Society.”

Conclusions: The accounts uncovered fathers’ adjustment trajectory to parenting a child with DS, concluding that despite practical and emotional challenges, fathers employed strategies to achieve positive adjustment. Fathers identified the need for services to recognize their role and involve them in their child's support provision. Implications for clinical practice and future research are discussed.

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Community-based participatory approaches to neurogenetic syndrome research

Individuals with neurogenetic syndromes comprise a large subset of the population of people with intellectual disability. Members of neurogenetic syndrome communities, including self-advocates, caregivers, family members, and service providers, can be valuable partners in translational research and its application to intervention and advocacy. This paper examines the applicability of a community-based participatory research approach, one characterized by equitable involvement and shared responsibility of community members, practitioners, and researchers in conducting research with neurogenetic syndrome communities. We first provide a rationale for enhancing academic research partnerships with neurogenetic syndrome communities. We then describe how a community-based participatory research framework can be applied to conducting neurogenetic syndrome research with an examination of nine common principles and seven steps to conducting this type of work. We conclude by discussing specific challenges to conducting community-based participatory research with neurogenetic syndrome communities and suggest opportunities for future directions of this work.

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About my Child: measuring 'Complexity' in neurodisability. Evidence of reliability and validity

Background: About my Child, 26-item version (AMC-26) was developed as a measure of child health 'complexity' and has been proposed as a tool for understanding the functional needs of children and the priorities of families.

Methods: The current study investigated the reliability and validity of AMC-26 with a sample of caregivers of children with neurodevelopmental disorders (NDD; n = 258) who completed AMC-26 as part of a larger study on parenting children with NDD. A subsample of children from the larger study ( n = 49) were assessed using standardized measures of cognitive and adaptive functioning.

Results: Factor analysis revealed that a four-component model explained 51.12% of the variance. Cronbach's alpha was calculated for each of the four factors and for the scale as a whole, and ranged from 0.75 to 0.85, suggesting a high level of internal consistency. Construct validity was tested through comparisons with the results of standardized measures of child functioning. Predicted relationships for factors one, two and three were statistically significant and in the expected directions. Predictions for factor four were partially supported. AMC-26 was also expected to serve as an indicator of caregiver distress. Drawing on a sample of caregivers from the larger study ( n = 251) the model was found to be significant and explained 23% of the variance in caregiver depressive symptoms ( R2 = .053, F (1, 249) = 14.06, P < .001).

Conclusions: Based on these observations, the authors contend that AMC-26 may be used by clinicians and researchers as a tool to capture child function and child health complexity. Such a measure may help elucidate the relationships between child complexity and family well-being. This is an important avenue for further investigation.

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Discovering dad: paternal roles, responsibilities, and support needs as defined by fathers of children with complex cardiac conditions perioperatively

Background: Understanding perceptions of family caregivers' roles and responsibilities regarding their child with complex cardiac needs has potential to help care teams better support parents. Paternal experience has been under-explored in pediatric cardiac cohorts.;

Methods: Ten fathers of children undergoing cardiac surgery completed quantitative surveys on their knowledge needs and preferred format of communication. In face-to-face recorded interviews, they responded to open-ended questions about the definition of being a good father to a child with a complex cardiac condition, perceived paternal responsibilities, personal growth as a parent to a child with a complex heart condition, support needs, and recommendations to medical staff for paternal inclusion. Semantic content analysis was utilised. The study reports strictly followed COnsolidated criteria for REporting Qualitative research guidelines.

Results: The fathers reported high preference for knowledge about the child's heart condition, communication about the treatment plan, and desire for inclusion in the care of their child. Paternal role was defined thematically as: providing a supportive presence, being there, offering bonded insight, serving as strong provider, and acting as an informed advocate. The fathers revealed that their responsibilities sometimes conflicted as they strove to serve as an emotional and economic stabiliser for their family, while also wanting to be foundationally present for their child perioperatively.

Conclusion: This study provides insight into paternal experience and strategies for paternal inclusion. This summary of the self-defined experience of the fathers of pediatric cardiac patients offers constructive and specific advice for medical teams.

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The economic costs and its predictors for childhood autism spectrum disorders in Ireland: How is the burden distributed?

Autism spectrum disorders are associated with a substantial economic burden; although little is known about the relationship between state and family out-of-pocket expenditure. The objective of this study is to estimate the societal cost of childhood autism spectrum disorders and explain the variation in costs between state and family out-of-pocket expenditure. A bottom-up prevalence based cost-of-illness methodology was implemented using data from a combination of multiple convenience samples in Ireland of 195 parents of 222 children aged between 2 and 18 years of age with a clinically diagnosed autism spectrum disorder collected in 2014/2015. The findings show the average annual cost per child for families amounted to euro28,464.89 related to private autism spectrum disorder services, lost income and informal care. By comparison, annual state expenditure per child on autism spectrum disorder-related health, social and educational resources was euro14,192. Regression analyses indicate that autism spectrum disorder severity is significantly associated with higher out of pocket expenditures but not state health expenditures. The results suggest that parents are central to meeting the needs of young people with autism spectrum disorders in Ireland. Policy implications of these findings suggest that significant investment and commitment is needed to address the needs of individuals living with autism spectrum disorders and their families.

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Evaluation of family management of an adolescent with sickle cell disease

Objective: to describe the experience of the family management of an adolescent with sickle cell disease.

Method: case study, which used the theoretical model of the Family Management Style Framework (FMSF). Data was collected through interviews with the mother and documental analysis and, previously, being submitted to hybrid thematic analysis.

Results: the family defines that they are adapted to the situation. The management behaviors are shaped according to the unpredictability of the disease, which, consequently lead to a "fighting" management style.

Conclusion: the mother is the main caregiver of the adolescent, is overloaded, and presents difficulties regarding the therapeutic regimen. Mother and daughter are afraid of the disease, which contributes to the low self-esteem of the adolescent, limiting it in the performance of activities, and both are with impaired quality of life.
 

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Improving remote lifestyle intervention studies in children: Participant and caregiver feedback of the smart heart study

Objectives: We sought to describe and analyze the quantitative and qualitative feedback obtained from participants and their caregivers of the Smart Heart study, a successful 12-month lifestyle intervention for children with overweight or obesity and congenital heart disease that provided remote lifestyle counseling, to improve future lifestyle interventions in children.

Methods: Thirty-six participants and caregivers were polled using a standard program evaluation questionnaire at the end of the intervention. Feedback was compiled into themes, and facilitators and barriers to program success were identified.

Results: There was a high level of satisfaction with the intervention and staff interactions as well as a low perceived burden of participation. There were also specific concerns, including mixed impressions regarding technology usage and a less impressive indication of actual impactful behavior change.

Conclusions: The study identified five themes, and corresponding facilitators and barriers to participant compliance, from the Smart Heart intervention feedback and offered suggestions for improving future lifestyle behavioral intervention study designs in children.

Practice Implications: Remote smartphone counseling is effective and efficient. It is recommended that the counseling messages are specific, the counseling schedule is patient-centric, patient burden is limited, methods with immediate patient feedback are used and family is included when feasible. 

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Family-Provided Health Care for Children With Special Health Care Needs

Background and Objectives: Many children with special health care needs (CSHCN) receive health care at home from family members, but the extent of this care is poorly quantified. This study's goals were to create a profile of CSHCN who receive family-provided health care and to quantify the extent of such care.

Methods: We analyzed data from the 2009-2010 National Survey of Children with Special Health Care Needs, a nationally representative sample of 40 242 parents/guardians of CSHCN. Outcomes included sociodemographic characteristics of CSHCN and their households, time spent by family members providing health care at home to CSHCN, and the total economic cost of such care. Caregiving hours were assessed at (1) the cost of hiring an alternative caregiver (the "replacement cost" approach), and (2) caregiver wages (the "foregone earnings" approach).

Results: Approximately 5.6 million US CSHCN received 1.5 billion hours annually of family-provided health care. Replacement with a home health aide would have cost an estimated $35.7 billion or $6400 per child per year in 2015 dollars ($11.6 billion or $2100 per child per year at minimum wage). The associated foregone earnings were $17.6 billion or $3200 per child per year. CSHCN most likely to receive the greatest amount of family-provided health care at home were ages 0 to 5 years, were Hispanic, lived below the federal poverty level, had no parents/guardians who had finished high school, had both public and private insurance, and had severe conditions/problems.

Conclusions: US families provide a significant quantity of health care at home to CSHCN, representing a substantial economic cost. 

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The Effectiveness of a Brief Sexuality Education Intervention for Parents of Children with Intellectual and Developmental Disabilities

Parents are often responsible for educating their child about sexuality and relationships, yet many parents may not be aware of the sexuality-related topics to teach. Sexuality education is critical for children with autism and intellectual disabilities, who are often vulnerable to sexual abuse and other sexual behavior outcomes. Families teaching sexuality can help their child learn about healthy hygiene, interactions, and relationships. The purpose of this study was to implement a brief sexuality education training for parents and caregivers who have children diagnosed with intellectual and developmental disabilities, including autism. A Wilcoxon-signed rank test revealed a statistically significant change in parents' (1) attitudes and beliefs, (2) level of communication, and (3) competence to teach sexuality topics following participation in the sexuality education training program. Strategies were provided to assist parents in effectively providing sexuality information to their child with intellectual and developmental disabilities. Educators are urged to increase their awareness of this unmet need and to partner with families to implement strategies that promote the physical, emotional, and social independence of individuals with autism and intellectual disabilities. 

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Parent Perceptions of How Nurse Encounters Can Provide Caring Support for the Family in Early Acute Care After Children's Severe Traumatic Brain Injury

Objective: A child's severe traumatic brain injury (TBI) creates a family crisis requiring extensive cultural, informational, psychological, and environmental support. Nurses need to understand parents' expectations of caring in early acute care so they can tailor their attitudes, beliefs, and behaviors appropriately to accommodate the family's needs.

Methods: In a previous qualitative study of 42 parents or caregivers from 37 families of children with moderate-to-severe TBI, parents of children with severe TBI (n = 25) described their appraisals of nurse caring and uncaring behaviors in early acute care. Swanson's theory of caring was used to categorize parents' descriptions to inform nursing early acute care practices and family-centered care.

Results: Caring nurse encounters included (a) involving parents in the care of their child and reflecting on all sociocultural factors shaping family resources and responses (knowing); (b) respecting that family grief can be co-mingled with resilience and that parents are typically competent to be involved in decision making (maintaining belief); (d) actively listening and engaging parents to fully understand family values and needs (being with); (e) decreasing parents' workload to get information and emotional support and provide a safe cultural, psychological, and physical environment for the family (doing for); and (f) providing anticipatory guidance to navigate the early acute care system and giving assistance to learn and adjust to their situation (enabling).

Conclusion: Application of Swanson's caring theory is prescriptive in helping individual nurses and early acute care systems to meet important family needs after children's severe TBI.

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Truth Telling in the Setting of Cultural Differences and Incurable Pediatric Illness: A Review

Importance: Navigating requests from parents or family caregivers not to disclose poor prognosis to seriously ill children can be challenging, especially when the requests seem culturally mediated. Pediatric clinicians must balance obligations to respect individual patient autonomy, professional truth telling, and tolerance of multicultural values. 

Observations: To provide suggestions for respectful and ethically appropriate responses to nondisclosure requests, we used a hypothetical case example of a Middle Eastern adolescent patient with incurable cancer and conducted an ethical analysis incorporating (1) evidence from both Western and Middle Eastern medical literature and (2) theories of cultural relativism and justice. While Western medical literature tends to prioritize patient autonomy and corresponding truth telling, the weight of evidence from the Middle East suggests high variability between and within individual countries, patient-physician relationships, and families regarding truth-telling practices and preferences. A common reason for nondisclosure in both populations is protecting the child from distressing information. Cultural relativism fosters tolerance of diverse beliefs and behaviors by forbidding judgment on foreign societal codes of conduct. It does not justify assumptions that all individuals within a single culture share the same values, nor does it demand that clinicians sacrifice their own codes of conduct out of cultural respect. We suggest some phrases that may help clinicians explore motivations behind nondisclosure requests and gently confront conflict in order to serve the patient's best interest.

Conclusions and Relevance: It is sometimes ethically permissible to defer to family values regarding nondisclosure, but such deferral is not unique to cultural differences. Early setting of expectations and boundaries, as well as ongoing exploration of family and health care professional concerns, may mitigate conflict.

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Responding to families with complex needs: a national survey of child and family health nurses

Aims: The aim of this study was to explore the extent to which Australian child and family health nurses work with families with complex needs and how their practice responds to the needs of these families. Background. Many families with young children face challenges to their parenting capacity, potentially placing their children at risk of poorer developmental outcomes. Nurses increasingly work with families with mental health problems, trauma histories and/or substance dependence. Universal child health services must respond effectively to these challenges, to address health inequalities and to promote the best outcomes for all children and families.

Design: The descriptive study used cross-sectional data from the first national survey of child and family health nurses in Australia, conducted during 2011. Methods. Survey data reported how often, where and how child and family health nurses worked with families with complex needs and their confidence in nursing tasks.

Findings: Many, but not all, of the 679 respondents saw families with complex needs in their regular weekly caseload. Child and family health nurses with diverse and complex caseloads reported using varied approaches to support their clients. They often undertook additional professional development and leadership roles compared with nurses who reported less complex caseloads. Most respondents reported high levels of professional confidence.

Conclusion: For health services providing universal support and early intervention for families at risk, the findings underscore the importance of appropriate education, training and support for child and family health professionals. The findings can inform the organization and delivery of services for families in Australia and internationally. References

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Case-Based Insights: Arab Muslim Mothers' Experiences of Managing a Child Newly Diagnosed With Type 1 Diabetes Mellitus

Mothers frequently fulfill the role of primary caregiver for children diagnosed with type 1 diabetes mellitus (T1DM). A T1DM diagnosis has a significant impact on the child and the wider family unit. The objective is to develop understanding of mothers' experiences caring for children diagnosed with T1DM in the cultural context of the Middle East to facilitate enhanced health service provision and support. This study used a qualitative design. Data were collected in individual semistructured interviews. Participants were mothers of Arabic descent and Muslim belief who had a child diagnosed with T1DM within the last 12 months. All mothers were registered at the health service where this research was conducted and resident in the United Arab Emirates at the time of this study. COREQ guidelines informed reporting of the research and findings. Participating mothers described initial reactions of shock and disbelief, followed by transition to near ordinary and near normal ( 85% normal ) family functioning. Family, culture, and faith emerged as critical supports in the whirlwind daily challenge of balancing the multiple demands and competing needs of the newly diagnosed child and the broader family. This study is the first of its kind from countries comprising the Gulf Cooperation Council. The findings provide insight into the challenges and support needs of mothers caring for children newly diagnosed with T1DM in an Arab Muslim context. The findings also provide a basis for enhancing health service support and suggest themes to inform further research.

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Trajectories of poverty and economic hardship among American families supporting a child with a neurodisability

Background: Caring for a child with a neurodisability (ND) impacts the financial decisions, relationships and well-being of family members, but evidence on the economic trajectories of families throughout the life course is missing.

Methods: Using data from the Panel Study of Income Dynamics, we tracked the families of 3317 children starting 5 years before childbirth until the child reached 20 years of age. We used regression and latent growth curve modelling to estimate trajectories of poverty and economic hardship over time.; Results: Families with a child with an ND had higher rates of poverty and economic hardship prior to childbirth and persistently over time. Analysis uncovered five latent trajectories for each indicator. After controlling for family and caregiver characteristics that preceded the birth of the child, raising a child with an ND was not associated with a unique trajectory of poverty. Families raising a child with an ND were however more likely to experience persistent economic hardship.

Conclusions: The study establishes descriptive evidence for how having a child with an ND relates to changes in family economic conditions. The social and economic conditions that precede the child's birth seem to be driving the economic inequalities observed later throughout the life course. 

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Evaluation of an Online Educational Program for Parents and Caregivers of Children With Food Allergies

Background and Objective: The increasing prevalence of food allergy affects both patients and their families.

Objective: The aim of this study was to evaluate the impact of an online educational program designed for parents and caregivers of children with food allergies. The program was developed by a multidisciplinary group comprising health care professionals, researchers, and expert patients under the participatory medicine model.

Material and Methods: Participants took a 2-week online educational program covering major topics in food allergy management. General knowledge about the disease, symptoms, treatment, and topics relevant to families' daily lives were evaluated. The contents included educational videos, online forums, and live video chats. A pretest/posttest questionnaire survey was used to evaluate the impact of the program.

Results: A total of 207 participants enrolled in the educational program, which was completed by 130 (62.8%). Knowledge acquisition improved significantly following participation in the program in 15 out of 30 items (50%), reaching P<.001 for 8 items (26.7%). Of the 207 participants who started the program, 139 (67.1%) visited online forums, and 27.5% attended video chats. Average overall satisfaction with the educational program was 8.78 (on a scale of 0 to 10). 

Conclusion: The results obtained show that parents improved their knowledge in all areas of food allergy. The high level of satisfaction among participants suggests that digital learning tools are effective and motivational, enabling patients to acquire appropriate knowledge and thus increasing their quality of life.

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Initial Challenges of Caregiving During COVID-19: Caregiver Burden, Mental Health, and the Parent-Child Relationship

Research confirms that the mental health burdens following community-wide disasters are extensive, with pervasive impacts noted in individuals and families. It is clear that child disaster outcomes are worst among children of highly distressed caregivers, or those caregivers who experience their own negative mental health outcomes from the disaster. The current study used path analysis to examine concurrent patterns of parents' (n = 420) experience from a national sample during the early months of the U.S. COVID-19 pandemic. The results of a multi-group path analysis, organized by parent gender, indicate good fit to the data [X2(10) = 159.04, p < .01]. Results indicate significant linkages between parents' caregiver burden, mental health, and perceptions of children's stress; these in turn are significantly linked to child-parent closeness and conflict, indicating possible spillover effects for depressed parents and compensatory effects for anxious parents. The impact of millions of families sheltering in place during the COVID-19 pandemic for an undefined period of time may lead to unprecedented impacts on individuals' mental health with unknown impacts on child-parent relationships. These impacts may be heightened for families whose caregivers experience increased mental health symptoms, as was the case for fathers in the current sample. 

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Enteral feeding and its impact on family mealtime routines for caregivers of children with cerebral palsy: A mixed method study

Background/aim: Enteral feedings are part of the daily mealtime experience for many caregivers of children with cerebral palsy. The scope of occupational therapy practice incorporates multiple aspects of the enteral feeding process. Yet, the research in this area is very limited. The purpose of this study was to provide practitioners with better understanding of the impact enteral feedings of children with cerebral palsy have on family mealtime routines.

Methods: Using a complimentary mixed method approach, data were obtained through an online survey containing the Satisfaction Questionnaire with Gastrostomy Feeding (SAGA-8) and supplementary questions, and qualitative semi-structured phone interviews. Participants were caregivers of children with cerebral palsy who receive their primary nutrition through a gastrostomy tube.

Results: This study's cohort consisted of n = 36, SAGA-8, and n = 6 in-depth interviews. The mean age of children of was 9.4 (6.94 SD) with a mean age of 3.4 (5.35 SD) when enteral feeding was introduced. While families' overall situations positively changed after the gastronomy tube placement, environmental barriers and length of feeding time continued to present a challenge to mealtime routines. The mixed methods data analysis revealed that successful adjustment to having a child with a gastronomy tube and problem solving are closely linked and a consistent part of mealtime experience.

Conclusion: Findings highlighted the necessity of comprehensive support from health professionals in achieving positive mealtime experience. Themes in this study indicated that caregivers would benefit from a professional with knowledge in the development and integration of rituals and routines to support positive outcomes. 

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Patterns of Family Functioning and Diabetes-Specific Conflict in Relation to Glycemic Control and Health-Related Quality of Life Among Youth With Type 1 Diabetes

Objectives: General and diabetes-specific family functioning may be associated with youth’s adaptation to type 1 diabetes (T1D); however, empirically derived patterns of family functioning and diabetes-specific conflict among youth have not been explored in relation to T1D adaptation.

Methods: Youth (N = 161, aged 12–18) with T1D and caregivers completed measures of family functioning and diabetes-specific conflict that served as indicators in latent profile analyses. Differences in glycemic control (measured by hemoglobin A1cs [HbA1c] and health-related quality of life [HRQoL]) were compared across profiles.

Results: Four profiles that varied by levels of family functioning, diabetes-specific conflict, and congruence between youth and caregiver perspectives emerged and related to T1D adaptation differently. Greater agreement between caregiver and youth and lower diabetes-specific conflict was associated with lower HbA1c and greater HRQoL.

Conclusions: Person-centered approaches are useful to quantify how many individuals fit into a particular pattern and determine how specific family dynamics may function together differently in relation to T1D adaptation for various subgroups of the population.

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Aggression in Autism Spectrum Disorder: Supporting the Entire Family

Case: Juanita is a 13-year-old non-verbal Latina girl with autism spectrum disorder, moderate intellectual disability, and a seizure disorder whose aggressive behaviors toward her parents have significantly worsened over the past few months.Juanita's monolingual Spanish-speaking parents are here today for medication management at her primary care clinic. The parents report that Juanita pinches them, pulls their hair, and hits her head with her fists. Her aggression toward them is usually triggered by feelings of frustrations, leaving her parents feeling like they have to walk on eggshells around her and have led to differing parenting styles. Her father reports that he tries to avoid getting her upset and prefers to watch TV with her, whereas her mother takes on the day-to-day caretaking. Although he wants to take a more active role in parenting Juanita, when he tries, Juanita becomes more aggressive and reacts violently toward him. During the visit, Juanita keeps her eyes downcast, is withdrawn, and some strain is noted between her parents. While speaking to them, Juanita's mother chimes in and reports that she considers herself the primary caregiver and the one who knows her daughter the best. She often dismisses Juanita's father's reporting, saying that "he doesn't know what really is going on." When Juanita is taken to the restroom by her mother, her father tearfully reports that he feels that it may be best for everyone that he leaves the family because of Juanita's worsening aggression toward him and the toll it is taking on his marriage. How would you approach her management?

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Caring for children with an intellectual disability: An exploratory qualitative study

This study explored family caregiver experiences of children with an intellectual disability in a rural South African day-care centre. The family caregivers (N = 15; mothers = 60%; age range = 35 to 68 years) completed in-depth interviews regarding their experiences providing care to children with intellectual disability. Data collection and analysis was done using phenomenological methods. The following themes emerged to characterise the family caregiver experiences: deeper understanding of intellectual disability; disability disclosure conditions; and social and economic support needs. Family support emerged as an important factor in the relationship between caregivers' psychological stress and well-being.

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A longitudinal examination of dyadic distress patterns following a skills intervention for carers of adolescents with anorexia nervosa

Family interventions in anorexia nervosa (AN) have been developed to ameliorate maladaptive patterns of patient-carer interaction that can play a role in illness maintenance. The primary aim of this study is to examine the inter-relationship between baseline and post-treatment distress in dyads of carers and patients with AN to examine the interdependence between carers and patients. The secondary aim is to examine whether a carer skills intervention [Experienced Carer Helping Others (ECHO)] impacts on this inter-relationship. Dyads consisting of treatment-seeking adolescents with AN and their primary carer (n = 149; mostly mothers) were randomised to receive a carer skills intervention (ECHO) in addition to treatment as usual (TAU), or TAU alone, as part of a larger clinical trial. Carers and patients completed a standardised measure of psychological distress (The Depression, Anxiety, and Stress Scale) at baseline and 12 months post-treatment. The Actor Partner Interdependence Model was used to examine longitudinal changes in interdependence by treatment group. As expected, post-treatment levels of distress were related to baseline levels in both groups (actor effects). Moreover, carer distress at 12 months was related to patient distress at baseline for the TAU (partner effects), but not for the ECHO group. Finally, carers' distress change was not a significant predictor of patients' body mass index (BMI) change in the two treatment conditions. These findings are limited to predominantly mother-offspring dyads and may not generalise to other relationships. The ECHO intervention which is designed to teach carers skills in illness management and emotion regulation may be an effective addition to TAU for ameliorating interdependence of distress in patients and their primary carers over time.

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Impact of Cosmetic Camouflage on the Quality of Life of Children With Skin Disease and Their Families

Background/objectives: Cosmetic camouflage is known to improve quality of life in adults. Few data are available regarding cosmetic camouflage in children, and thus it is not often selected as a mode of treatment. We sought to determine whether cosmetic camouflage leads to improved quality of life of pediatric patients with visible dermatoses and their parent or primary caregiver.

Methods: Patients aged 5 to 17 years with visible skin disease and their parent were assessed with the Children's Dermatology Life Quality Index (CDLQI) and the Family Dermatology Life Quality Index (FDLQI) before and after consultation regarding cosmetic camouflage.;

Results: Twenty-two children with skin conditions were included in the study. The mean CDLQI decreased from 6.82 (SD = 1.28) to 3.05 (SD = 0.65; P = .0014), while the mean FDLQI decreased from 7.68 (SD = 1.15) to 4.68 (SD = 0.92; P = .0012).

Conclusions: Our study highlighted improvement in quality of life in patients with skin disorders who were managed with cosmetic camouflage. 

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Understanding Different Aspects of Caregiving for Individuals with Autism Spectrum Disorders (ASDs) a Narrative Review of the Literature

Background: There has been a considerable endeavor to understand associated challenges of caregiving for a child with Autism Spectrum Disorders (ASDs) and to develop the necessary skills and approaches to assist parents of children with ASD. Different studies have been stressed the importance and need for parental involvement in the intervention process to increase positive impacts.

Methods: The process of caregiving and the associated challenges should be understood from different aspects to be able to facilitate parent involvement in intervention implementation. In a narrative literature review, ten selected reviews were considered and each review considered a special aspect of caregiving for an individual with ASD.

Results: Five main different factors in the available literature and reviews were considered as different themes that needed to be reconsidered in the studies on the impacts of caregiving for an individual with ASD.

Conclusions: It is concluded that to facilitate parental involvement in the intervention process, and to support caregivers of this group of individuals this review highlights the need for improved research in some proposed areas in this field and to bridge the gap between research and practice in this field.

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Using Hybrid Telepractice for Supporting Parents of Children with ASD during the COVID-19 Lockdown: A Feasibility Study in Iran

During the three-month closure of clinics and day centers in Iran due to the coronavirus disease 2019 (COVID-19) lockdown, parents of children with Autism Spectrum Disorder (ASD) became solely responsible for their care and education. Although centers maintained telephone contact, it quickly became evident that parents needed more detailed advice and guidance. Staff from 30 daycare centers volunteered to take part in a two-month online support and training course for 336 caregivers of children with ASD of different ages. In addition to the provision of visual and written information, synchronous video sessions were used to coach parents on the learning goals devised for the children. Both qualitative and quantitative data were collected to understand the acceptability of using telepractice and the outcomes achieved. A low dropout rate and positive feedback from parents indicated that they perceived telepractice sessions to be useful. The factors contributing to parents' satisfaction were identified. Although the use of telepractice would be a good alternative for caregivers in any future lockdowns, it could also be used in conjunction with daycare center services to encourage greater parental participation, or with families living in areas with no day centers. Further studies are needed to compare telepractice to usual daycare face-to-face interventions, and to document its impact and cost-effectiveness for parents and children.

Measuring the impact of dermatological conditions on family and caregivers: a review of dermatology-specific instruments

The patient is the centre of a web of relationships, and the impact of his/her disease on family members and caregivers must be taken into account. The aim of this study was to identify the specific instruments that measure the impact of a dermatological disease on the quality of life (QoL) of family members, by performing a systematic search of the literature. Fifteen papers were identified, describing the creation and validation of nine instruments. Four of them concerned atopic dermatitis (Dermatitis Family Index, DFI; Parents' Index QoL Atopic Dermatitis, PiQoL-AD; QoL in primary caregivers of children with atopic dermatitis, QPCAD; Childhood Atopic Dermatitis Impact Scale, CADIS), two measured the impact of psoriasis in family members (Psoriasis Family Index, PFI; FamilyPso), one the impact of epidermolysis bullosa (Epidermolysis Bullosa Burden of Disease, EB-BoD), one of ichthyosis (Family Burden Ichthyosis, FBI), and one was generic for dermatological conditions (Family Dermatology Life Quality Index, FDLQI). The European Academy of Dermatology and Venereology quality of life taskforce recommends that the impact of a skin disease on family and caregivers should be measured as part of any thorough evaluation of the burden of a disease. Guidelines are given to choose the most appropriate instruments.

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Concurrent validity of the international Family Quality of Life Survey

The measurement of the social construct of Family Quality of Life (FQOL) is a parsimonious alternative to the current approach of measuring familial outcomes using a battery of tools related to individual-level outcomes. The purpose of this study was to examine the internal consistency and concurrent validity of the International FQOL Survey (FQOLS-2006), using cross-sectional data collected from 65 family caregivers of children with developmental disabilities. It shows a moderate correlation between the total FQOL scores of the FQOLS-2006 and the Beach Center's FQOL scale. The validity of five FQOLS-2006 domains was supported by the correlations between conceptually related domains.

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Family Experience in Treating Children with Chronic Renal Failure Undergoing Hemodialysis Therapy

Objective: Children who enter phase 5 of chronic renal failure need hemodialysis as a therapy. In undergoing hemodialysis, children experience various physical and psychosocial problems. Parents, as caregivers, are required to be at their children's side to overcome these problems. This study aimed to explore the experience of families in caring for children with chronic renal failure undergoing hemodialysis therapy.

Method: This research method used a descriptive phenomenological approach with in-depth interviews of seven participants. Participants were families who had a child with chronic kidney failure undergoing hemodialysis in a top referral hospital in Jakarta for at least one month. Data were analyzed using the Colaizzi technique.

Results: Five themes were identified: a) families' response to child care; b) families' coping strategies; c) the impact of child care for families; d) family support, and e) families' perceptions of changes in children undergoing hemodialysis therapy. These five themes highlighted how hemodialysis for children affected family life.

Conclusions: Family experiences in treating children with chronic renal failure influence their life in economical, physical, psychological, intellectual, and religious ways.

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Children With Acute Lymphoblastic Leukemia And Families: Focus Group Study Of Their Unmet Needs

Background: The impact of pediatric oncology is psychosocially and physically profound. Children and their families have problems coping with the stresses of treatment, surgery, chemotherapy, and radiation. However, qualitative research incorporating the phenomenological experiences of children and their caregivers and professionals dealing with such cases in explaining the fabrics of trauma they handle especially in Indian socio-cultural set up is needed. Purpose: To study the needs and challenges faced by children with cancer and their families and professionals using Focused Group discussions (FGD) approach.

Methods: A total of 64 participants participated across eight FGDs: 4 FGDs with parents of children with ALL (n=31); 1 FGD with professionals working in the field of cancer (n=10) and 3 FGDs with children with ALL (n= 23).

Results: Three major categories of information emerged during analyses: (1) Needs and challenges faced by the participants; (2) Factors moderating influence of challenges; (3) Technical suggestions by experts highlighting ways to address challenges. 5 Domains of challenges emerged namely: Lack of awareness, Cognitive problems, psychosocial issues, physical problems and socio emotional & behavioral problems. Discussion on the emerged themes and sub-themes has been done in the light of global literature, existing theoretical frameworks, and cultural scenario of India.

Conclusion: No longer considered an inevitably fatal disease, childhood cancer nonetheless presents many challenges for children and families. An effective and culturally sensitive psychosocial support for patients and their families during and post treatment, in addition to medical therapy, is strongly recommended.

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The Impact of Celiac Disease on Caregivers' Well-being: An Integrative Review

Objectives: A diagnosis of celiac disease (CD) requires individuals to adopt a strict gluten-free diet. As children with CD must rely on their caregivers for guidance and support with managing the gluten-free diet, CD may challenge the caregiver's emotional and social well-being. The primary objective of this mixed-methods systematic review was to synthesize research investigating the impact of CD on caregiver's well-being.

Methods: Five databases were systematically searched from 1990 to 2018 to identify all empirical studies that assessed well-being in caregivers of children (0-18 years) with CD. Qualitative and quantitative data were extracted separately before being integrated to explore key themes across the studies. 

Results: Twelve studies were identified that explored the well-being of caregivers of children with CD (3 qualitative, 9 quantitative), reporting on 665 caregivers. The quality of evidence was limited across studies. Synthesis of results revealed 3 themes (Caregiver Responsibility, Caregiver Well-Being and Concern for Child's Health, Implications for the Family) describing the impact of a child with CD on caregiver well-being.

Conclusions: Caregivers of children with CD may experience difficulties that impact their well-being; specific difficulties identified included the impact of caregivers' social activities, finances, and anxiety. The findings detailed in this review point toward factors that may guide health care personnel to provide support for the caregivers of children with CD.

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Development of a Self-Management Theory-Guided Discharge Intervention for Parents of Hospitalized Children

Parents of hospitalized children, especially parents of children with complex and chronic health conditions, report not being adequately prepared for self-management of their child's care at home after discharge. No theory-based discharge intervention exists to guide pediatric nurses' preparation of parents for discharge. To develop a theory-based conversation guide to optimize nurses' preparation of parents for discharge and self-management of their child at home following hospitalization. Two frameworks and one method influenced the development of the intervention: the Individual and Family Self-Management Theory, Tanner's Model of Clinical Judgment, and the Teach-Back method. A team of nurse scientists, nursing leaders, nurse administrators, and clinical nurses developed and field tested the electronic version of a nine-domain conversation guide for use in acute care pediatric hospitals. The theory-based intervention operationalized self-management concepts, added components of nursing clinical judgment, and integrated the Teach-Back method. Development of a theory-based intervention, the translation of theoretical knowledge to clinical innovation, is an important step toward testing the effectiveness of the theory in guiding clinical practice. Clinical nurses will establish the practice relevance through future use and refinement of the intervention.

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Adjustment in Childhood Cancer Survivors, Healthy Peers, and Their Parents: The Mediating Role of the Parent-Child Relationship

Objectives: Aims were to (1) determine whether the associations between parent psychological functioning and adjustment outcomes of childhood cancer survivors (CCS) were mediated by the parent-child relationship and (2) examine possible differences in pathways for CCS and healthy peers.

Method: The study included CCS (n = 206), healthy peers (n = 132), and their primary caregivers. Youth (8-21 years) reported on the quality of the parent-child relationship and on their positive and negative adjustment outcomes. Parents reported on their own distress, posttraumatic growth, quality of the parent-child relationship, and their child's positive and negative adjustment outcomes. Two mediation models were tested, first examining youth-reported adjustment as the outcome and second examining parent-reported youth adjustment. Differences between model path coefficients of CCS and healthy peers were assessed by multigroup analyses.

Results: In the youth-reported model, the parent-child relationship mediated the relation between parental distress and adjustment, with more care leading to better youth-reported adjustment outcomes and more overprotection leading to poorer adjustment outcomes. In the parent-reported model, relational frustration and attachment mediated the link between parental distress/growth and parent-reported youth adjustment, with more relational frustration and less attachment relating to poorer youth adjustment outcomes. Multigroup analyses revealed no differences in model path coefficients between CCS and healthy peers.

Conclusions: Parental distress and the parent-child relationship likely play an important role in both youth- and parent-reported adjustment, and associations among these constructs do not differ between CCS and healthy peers. Families with less optimal parental functioning may benefit from interventions improving the quality of parent-child interactions.

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Challenges and contributors to self-efficacy for caregivers of toddlers with autism

In this qualitative study, 11 mothers of toddlers with autism participated in interviews to investigate how they perceived their roles and their competency to support toddlers' social learning in the context of both professional-implemented and parent-mediated early intervention models. The authors conducted a thematic analysis with multiple layers of independent coding. Four resulting themes highlighted challenges and contributors to parent self-efficacy. First, related to child characteristics, challenges were most prominent in the early period as participants adjusted to the diagnosis and reached to connect when social difficulties emerged. Second, having a peripheral role in early intervention challenged participants' confidence in their abilities, while receiving guidance to assume an active leadership role supported their sense of efficacy for facilitating toddlers' social learning. In a third theme, participants described specific and general examples of their expertise. Fourth, participants considered the transactional context of parent–child interaction and largely viewed their toddlers' independent wills, natures, and preferences as strengths upon which to build social engagement. The results support the need for early interventionists to promote and leverage family capacity for facilitating toddler learning as social challenges begin to appear for toddlers with autism. Parent-participatory early intervention practices are linked to parents' positive views of their own and their children's capabilities, beliefs that are associated with a range of parent and child outcomes. A qualitative study was conducted with 11 mothers of toddlers with autism who had experience with both professionally directed and parent-mediated early intervention. Participants were interviewed to explore their perspectives on their roles in relation to professionals and on how they viewed their ability to support their toddlers' social learning. An in-depth analysis of the transcribed interviews resulted in four themes. First, in the early stages, participants experienced challenges to their self-efficacy as they adjusted to the diagnosis and reached to connect with their child when social challenges emerged. Second, participants' views of their capability were stronger when they were provided with background knowledge enabling them to take the lead in guiding their children's learning than when professionals modeled predetermined intervention strategies for them to copy. Third, participants provided specific examples of their expertise to support their toddlers' social learning and viewed their close parent–child relationship and intimate knowledge of their children as valuable to the intervention. Fourth, participants voiced respect for their toddlers' natures and preferences, positioning them to build on their toddlers' strengths in everyday interactions. The results support the need for early intervention providers to promote and leverage family capacity for facilitating toddler learning as social challenges begin to appear for toddlers with autism. 

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Family quality of life among families with a child who has a severe neurodevelopmental disability: Impact of family and child socio-demographic factors

We aimed to examine family quality of life (FQOL) of Northern Israeli families having a child with a severe neurodevelopmental disability and its relation to socio-demographics. The cohort included caregivers of 70 children ages (mean ± standard deviation) 5.36 ± 3.53 years. Families were two-parent (85.7%), lived in the periphery (67.1%) and included Jews (60%), Muslims (18.6%), Druze (14.3%) and Christians (7.1%). Religiosity included: secular (38.6%), traditional (31.4%), religious (30%). Children's diagnosis included autistic spectrum disorder (41.4%), intellectual disability (21.4%), cerebral palsy (17.1%), genetic syndromes (17.1%) and sensorineural hearing loss (2.9%). Degree of support (1-minimal,5-greatest) required by the child was 3.67 ± 1.28 for physical and 3.49 ± 1.36 for communication. Primary caregivers completed the FQOL Survey. Domain scores were highest for family relations and lowest for financial well-being. Dimension scores were highest for importance and lowest for opportunities. Overall FQOL approximated average. Jewish families and residents of a major urban area reported higher and more religious families reported lower overall FQOL. Regression analysis found ethnicity contributing to overall FQOL and domain scores with residence contributing to support from services. Ethnicity and child dependence contributed to dimension scores. Northern Israeli families having a child with a severe neurodevelopmental disability report average FQOL scores. However, family and child dependence characteristics affect FQOL scores. Professionals working with these families should consider FQOL information when making recommendations. 

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Effect of predicted low suspend pump treatment on improving glycaemic control and quality of sleep in children with type 1 diabetes and their caregivers: the QUEST randomized crossover study

Background: In attempting to achieve optimal metabolic control, the day-to-day management is challenging for a child with type 1 diabetes (T1D) and his family and can have a major negative impact on their quality of life. Augmenting an insulin pump with glucose sensor information leads to improved outcomes: decreased haemoglobin A1c levels, increased time in glucose target and less hypoglycaemia. Fear of nocturnal hypoglycaemia remains pervasive amongst parents, leading to chronic sleep interruption and lack of sleep for the parents and their children. The QUEST study, an open-label, single-centre randomized crossover study, aims to evaluate the impact on time in target, in hypoglycaemia and hyperglycaemia and the effect on sleep and quality of life in children with T1D, comparing a sensor-augmented pump (SAP) with predictive low glucose suspend and alerts to the use of the same insulin pump with a flash glucose measurement (FGM) device not interacting with the pump.

Methods/design: Subjects meeting the inclusion criteria are randomized to treatment with the SAP or treatment with an insulin pump and independent FGM for 5 weeks. Following a 3-week washout period, the subjects cross over to the other study arm for 5 weeks. During the week before and in the last week of treatment, the subjects and one of their caregivers wear a sleep monitor in order to obtain sleep data. The primary endpoint is the between-arm difference in percentage of time in glucose target during the final 6 days of each treatment arm, measured by a blinded continuous glucose measurement (CGM). Additional endpoints include comparison of quantity and quality of sleep as well as quality of life perception of the subjects and one of their caregivers in the two different treatment arms. Recruitment started in February 2017. A total of 36 patients are planned to be randomized. The study recruitment was completed in April 2018.

Discussion: With this study we will provide more information on whether insulin pump treatment combined with more technology (SmartGuard® feature and alerts) leads to better metabolic control. The inclusion of indicators on quality of sleep with less sleep interruption, less lack of sleep and perception of quality of life in both children and their primary caregivers is essential for this study and might help to guide us to further treatment improvement.

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Measuring hemophilia caregiver burden: validation of the Hemophilia Caregiver Impact measure

Aims: The purpose of this article is to describe the psychometric development of the Hemophilia Caregiver Impact measure.

Methods: Qualitative interviews (n = 22) and a cross-sectional web-based study (n = 458) were implemented with caregivers of people with hemophilia. Classical test theory and item response theory analyses were implemented to evaluate the psychometric characteristics of the measure.

Results: The study sample had a mean age of 39 and a median level of college education. It was predominantly female (88%), and had an average of two children. 85% of this study sample had at least one child with hemophilia. The final 36-item Hemophilia Caregiver Impact measure is composed of seven subscales assessing relevant negative aspects of caregiver impact (Burden Summary) as well as one subscale reflecting a positive aspect of caregiver impact (Positive Emotions). These two summary scores are orthogonal and can be used together in analyses examining negative and positive aspects of caregiver impact. The items included within each subscale reflect a unidimensional construct, demonstrate good item information and trace lines, and lack of local dependence. The resulting subscales demonstrate high reliability, and good construct validity. They show moderate incremental and discriminant validity. 

Conclusions: The Hemophilia Caregiver Impact measure is a useful new tool for clinical research on hemophilia. In addition to having eight relevant subscales, the measure can also be summarized with two scores. This versatility can be useful in analyzing studies with very small samples, which is to be expected when dealing with a rare condition like hemophilia.

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Returning research results: caregivers’ reactions following computerized cognitive training among childhood cancer survivors

Background: Few researchers routinely disseminate results to participants; however, there is increasing acknowledgment that benefits of returning results outweigh potential risks. Our objective was to determine whether use of specific guidelines developed by the Children’s Oncology Group (COG) when preparing a lay summary would aid in understanding results. Specifically, to determine if caregivers of childhood cancer survivors found a lay summary comprehensive, easy to understand, and helpful following participation in a computerized cognitive training program.

Methods: In a previous study, 68 childhood survivors of acute lymphoblastic leukemia or brain tumor with identified cognitive deficits were randomly assigned to participate in a computerized cognitive intervention or assigned to a wait list. Following conclusion of this study, participants’ caregivers were contacted and provided with a summary of results based on COG guidelines and survey. Forty-three participants returned the surveys, examining caregivers’ interpretation of the summary, reaction to the results, and information regarding preference for receiving results.

Results: Caregivers reported results as important (93%), helpful (93%), easy to understand (98%), and relevant to their child (91%). They interpreted the results as generally positive, with many caregivers endorsing satisfaction (84%); however, concern of long-term implications was expressed (25%). Most preferred receiving results through postal letter (88%) or email (47%).

Conclusions: Benefits of returning research results to families appear to outweigh potential negative consequences. Returning results may help inform families when making future health care-related decisions. There is a great need to develop and assess the utility of guidelines for returning research results.

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The quality of life of home-ventilated children and their primary caregivers plus the associated social and economic burdens: A prospective study

Background: Despite the obvious challenges faced by families caring for children on home ventilation, there is surprisingly little research into the details of their daily lives. In particular, little is known about the quality of life of the child and caregiver plus the associated social and economic burdens of care.

Methods: We prospectively studied 90 families enrolled in a paediatric home ventilation service in British Columbia. In the clinic, we recorded demographic information, patient acuity score and quality of life for patient and caregiver using standardised questionnaires. Parents then monitored social and financial costs of care at home over the subsequent 8 weeks. These data were collected by telephone at 1 and 2 months.

Results: Most children led rich active lives. Camping trips, wheelchair sports and foreign travel were the norm, not the exception. Over 90% assessed the burden of care as mild or moderate. Government support covers medical expenses and home nursing (median 32 h/week, IQR 0-62.5 h). Monthly unreimbursed family expenses were low (median $87.7, IQR $15.3-$472). Despite this, nearly 25% of primary caregivers assessed burden of care as severe and over 50% had chronic illnesses requiring daily medication (principally depression, anxiety and arthritis). Quality of life for children or caregivers did not correlate with income or education. Interpretation Home ventilation of complex children is a successful strategy but it places significant strain on the primary caregiver. Specific attention to the physical and mental health of the caregiver should be an integral part of the management of home-ventilated children. 

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When children with profound multiple disabilities are hospitalized: A cross‐sectional survey of parental burden of care, quality of life of parents and their hospitalized children, and satisfaction with family‐centered care

Purpose: We aimed to assess parental burden of care, satisfaction with family‐centered care, and quality of life (HRQoL) of parents and their hospitalized children with profound intellectual and multiple disabilities (PIMD), and determine the relationship among these factors.

Design: A cross‐sectional study using printed questionnaires and qualitative questions was undertaken at a Swiss University Children's Hospital.

Results: The 117 parents (98 mothers, 19 fathers) studied indicated a substantial impact on burden of care and parental health‐related quality of life. Significant correlations with the hospitalized children's well‐being were rs = .408 for burden of care and rs –.368 for quality of life. Qualitative results showed parents struggling to safeguard their children and worrying most about the children's well‐being.

Practice Implications: Health professionals need to be aware of parental burden and that the perception of the children's well‐being and the parents' efforts determine their support needs. Easing parents’ burden and fostering confidence in the hospitalized children's well‐being requires coordination of care provided by advanced nurse specialists, with an institutional framework that clarifies parental collaboration.

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Finding Fit between Work and Family Responsibilities when Caring for Children with ADHD Diagnoses

Finding fit between work and family responsibilities is challenging for parents, especially when raising a child with mental health difficulties. The purpose of this study was to investigate the relationship of children's problematic behaviors to maternal employment and difficulty combining work and family obligations. Data were analyzed from 174 mothers parenting a child with a diagnosis of attention deficit hyperactivity disorder who completed child problem behavior (child behavior checklist), family functioning, and employment measures at baseline and 12 months later. Results from logistic regression analysis indicated that children's problematic behaviors predicted maternal employment. Structural equation modeling showed that children's higher baseline scores on the child behavior checklist internalizing scale were related to difficulty combining work and family at 12 months, even after controlling for difficulty of combining work and family at baseline. Children's externalizing scores were not found to predict difficulty combining work and family responsibilities. Further analysis did not confirm mediation between children's externalizing and internalizing behaviors, family conflict, and difficulty combining work and family. Given these results, service providers need to more comprehensively address the intersection of children's mental health difficulties and work-family fit in order to better support caregivers as parents and employees. 

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The Parent Experience of Caring for a Child with Mitochondrial Disease

Introduction: Mitochondrial disease is a spectrum of progressive genetic disorders resulting from dysfunctions of cellular metabolism in the mitochondria that greatly compromise the lives of affected individuals, who are often children.

Purpose: This study described the parent experiences unique to caring for a child with mitochondrial disease.; Methods: Internet surveys were made available to parents of children with a known mitochondrial disease. Surveys included demographic items and two questionnaires: Parent Experience of Child Illness (PECI) and Pediatric Inventory for Parents (PIP). Descriptive data were collected and correlations calculated to determine relationships between the parent experience and stress.

Results: The majority of participants (n=231) were mothers (95%) of children with mitochondrial disease around the age of 10 years (M=9.85). Elevated scores were found in parent adjustment illness-related concerns regarding Guilt and Worry (M=2.30, SD=.650), Sorrow and Anger (M=2.09, SD=.730), Long-term Uncertainty (M=2.56, SD=.690), and Emotional Resources (M=2.36, SD=.615). Scores indicated elevated feelings of stress in terms of both difficulty and frequency. Significant correlations (p<0.01) were found between parent illness-related concerns and parenting stress.

Conclusions: The results of this study suggest that parents of a child with mitochondrial disease feel a burden of responsibility that exceeds the typical caregiver role, see their child as fragile, and have concerns about their child's future. Identification of these concerns can assist nurses to better meet the needs of these parents and families. 

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Capturing At-Home Health and Care Information for Children With Medical Complexity Using Voice Interactive Technologies: Multi-Stakeholder Viewpoint

Digital health tools and technologies are transforming health care and making significant impacts on how health and care information are collected, used, and shared to achieve best outcomes. As most of the efforts are still focused on clinical settings, the wealth of health information generated outside of clinical settings is not being fully tapped. This is especially true for children with medical complexity (CMC) and their families, as they frequently spend significant hours providing hands-on medical care within the home setting and coordinating activities among multiple providers and other caregivers. In this paper, a multidisciplinary team of stakeholders discusses the value of health information generated at home, how technology can enhance care coordination, and challenges of technology adoption from a patient-centered perspective. Voice interactive technology has been identified to have the potential to transform care coordination for CMC. This paper shares opinions on the promises, limitations, recommended approaches, and challenges of adopting voice technology in health care, especially for the targeted patient population of CMC. 

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1.25 the relationship between parent and child characteristics among families receiving a caregiver-mediated social skills intervention for autism

A growing literature indicates that caregiver-mediated social skills interventions increase social competence among children with autism; however, very little is known about the role of parent characteristics in treatment success. As an initial step toward closing this gap, we examined the following: 1) the feasibility of collecting measures of caregivers and children enrolled in these interventions in a clinic setting; and 2) the relationships between baseline measures of caregivers and their children.

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Analysis of the caregiver burden associated with Sanfilippo syndrome type B: panel recommendations based on qualitative and quantitative data

Background: Sanfilippo syndrome type B (Sanfilippo B) belongs to a group of rare lysosomal storage diseases characterized by progressive cognitive decline from an early age, acute hyperactivity, and concomitant somatic symptoms. Caregivers face a unique set of challenges related to the complex nature of Sanfilippo B, but the burden and impact on quality of life (QoL) of caregivers is poorly defined and best practice guidance for clinicians is lacking.

Methods: An international clinical advisors meeting was convened to discuss key aspects of caregiver burden associated with Sanfilippo B based on findings from qualitative and quantitative research undertaken to identify and quantify the nature and impact of the disease on patients and caregivers. 

Results: Providing care for patients with Sanfilippo B impinges on all aspects of family life, evolving as the patient ages and the disease progresses. Important factors contributing toward caregiver burden include sleep disturbances, impulsive and hyperactive behavior, and communication difficulties. Caregiver burden remained high throughout the life of the patient and, coupled with the physical burden of daily care, had a cumulative impact that generated significant psychological stress.

Conclusion: A Sanfilippo-specific QoL questionnaire is needed that is directed at caregiver needs and burden and best practice management of these domains.

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The Lived Experience of Fathers Caring For a Child with Cystic Fibrosis

Most studies on the quality of life of caregivers of children with cystic fibrosis (CF) have focused on the mental health of mothers, reflecting a biased underlying assumption that mothers are the primary caregivers. The aim of this study was to explore the experience of fathers caring for a child with CF. Twenty fathers of children with CF were studied via a semi-structured interview using Husserl's (1970) descriptive phenomenology. Fathers were enrolled from two accredited CF centers in Texas. Six themes emerged from the interviews: fathers reported feeling overwhelmed, feeling isolated, experiencing altered family dynamics, actively seeking resources, experiencing financial strain, and feeling hope. Fathers of children with CF reported distressing experiences in connection with their child's diagnosis of CF and during the course of their child's disease, but also reported a strong feeling of hope for the future. Practical implications for nurses include screening for anxiety and depression in fathers at the time of CF diagnosis, as well as potentially implementing a peer mentoring program for fathers.

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Quality of Life in Caregivers of Patients With Cystic Fibrosis: An Integrated Literature Review

Cystic fibrosis (CF) is a life-shortening genetic disease with many treatment requirements that necessitate the participation of a caregiver, especially if the patient is a child. We performed an integrated literature review of original research evaluating quality of life in caregivers of patients with CF. We searched the terms quality of life, cystic fibrosis, and caregivers in the MEDLINE, CINAHL, Child Development and Adolescent Studies, PsycARTICLES, and Psychology and Behavioral Sciences Collection databases from 2007 to 2017. Nine articles were included and showed that caregiver quality of life is affected by caring for a child with CF as evidenced by high rates of anxiety and depression. Anxiety and depression in caregivers affects adherence to the child's treatment regimen, causing detrimental effects on the health of the child. Screening for depression and anxiety and referral for treatment when necessary are needed to optimize family health. Findings include 1) CF has numerous treatment burdens for caregivers, 2) rates of anxiety and depression are two to three times higher in caregivers of patients with CF than in the general population, 3) depressed parents are less likely to adhere to their child's treatment regimen, and 4) few CF families report having received mental health screening or treatment.

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The power of siblings and caregivers: under-explored types of social support among children affected by HIV and AIDS

Children affected by HIV and AIDS have significantly higher rates of mental health problems than unaffected children. There is a need for research to examine how social support functions as a source of resiliency for children in high HIV-prevalence settings such as South Africa. The purpose of this research was to explore how family social support relates to depression, anxiety, and post-traumatic stress (PTS). Using the ecological model as a frame, data were drawn from a 2011 cross-sectional study of 1380 children classified as either orphaned by AIDS and/or living with an AIDS sick family member. The children were from high-poverty, high HIV-prevalent rural and urban communities in South Africa. Social support was analyzed in depth by examining the source (e.g. caregiver, sibling) and the type (e.g. emotional, instrumental, quality). These variables were entered into multiple regression analyses to estimate the most parsimonious regression models to show the relationships between social support and depression, anxiety, and PTS symptoms among the children. Siblings emerged as the most consistent source of social support on mental health. Overall caregiver and sibling support explained 13% variance in depression, 12% in anxiety, and 11% in PTS. Emotional support was the most frequent type of social support associated with mental health in all regression models, with higher levels of quality and instrumental support having the strongest relation to positive mental health outcomes. Although instrumental and quality support from siblings were related to positive mental health, unexpectedly, the higher the level of emotional support received from a sibling resulted in the child reporting more symptoms of depression, anxiety, and PTS. The opposite was true for emotional support provided via caregivers, higher levels of this support was related to lower levels of all mental health symptoms. Sex was significant in all regressions, indicating the presence of moderation.

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