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Introduction: Parents of persons with profound intellectual and multiple disabilities (PIMD) play a major and often lifelong role in the care and support of their child. A better understanding of parents' perspectives regarding their experiences of parenting their child with PIMD is essential to support them more effectively. Although this topic has been explored extensively in Anglo-Saxon and Northern European countries, little is known about the experience of these parents in a highly institutionalized context such as that in France., Objective: We explored parents' experiences of the activities they performed to care for their child with PIMD (namely, the 'parenting work') in the French context., Method: Qualitative semistructured interviews were conducted by telephone with 34 parents of persons with PIMD aged 8-35. The resulting data were analyzed using thematic analysis., Results: The analysis highlighted the diversity of activities performed by parents as well as the influence of context on the forms of this parenting work. Five themes were developed: (1) navigating the challenges of obtaining medical recognition; (2) negotiating a concealed domain and becoming an expert; (3) unfolding medical and medicosocial care management; (4) navigating the challenges of daily living and (5) shaping one's child's possibilities., Conclusion: This study offers a better understanding of the challenges, levers and expectations of parents of children with PIMD in France. Contextual factors such as the lack of knowledge of PIMD among health professionals, access to knowledge and know-how associated with care management, the administrative complexity of access to care and equipment, institutional issues (e.g., professional turnover) and societal ableism (e.g., access to infrastructures, interpersonal discrimination) shape the work parents perform to support their child's needs. It is necessary to consider contextual aspects to better support these parents and their children. Suggestions for applications are provided in the discussion., Patient or Public Contribution: One of the researchers, a parent of a child with PIMD, supported the research design and provided feedback on the study's procedures and manuscript., (© 2023 The Authors. Health Expectations published by John Wiley & Sons Ltd.)

Background: Research suggests that parents of children with disabilities endure increased amounts of stress but also experience positive outcomes., Purpose: To further investigate findings from focus group interviews that explored parental stress in families of children with disabilities using a sequential mixed methods design., Method: This study sought to model parental stress using the McCubbin and McCubbin (1993) Resiliency Model of Stress, Adjustment, and Adaptation using qualitative and quantitative data collected sequentially. Twenty-five parents of children with autism spectrum disorder, cerebral palsy, Down syndrome, and sickle cell disease participated in a 2-step study that encompassed qualitative followed by quantitative data ascertainment., Results: Parents who quantitatively experienced high stress or low stress used different behavioral themes to describe their experience qualitatively. Positive appraisals, resources, and ability to engage in problem solving and coping were associated with family resiliency.

Background: As the number of children diagnosed with autism continues to rise, resources must be available to support parents of children with autism and their families. Parents need help as they assess their unique situations, reach out for help in their communities, and work to decrease their stress levels by using appropriate coping strategies that will benefit their entire family., Methods: A descriptive, correlational, cross-sectional study was conducted with 75 parents/primary caregivers of children with autism. Using the McCubbin and Patterson model of family behavior, adaptive behaviors of children with autism, family support networks, parenting stress, and parent coping were measured., Findings and Conclusions: An association between low adaptive functioning in children with autism and increased parenting stress creates a need for additional family support as parents search for different coping strategies to assist the family with ongoing and new challenges. Professionals should have up-to-date knowledge of the supports available to families and refer families to appropriate resources to avoid overwhelming them with unnecessary and inappropriate referrals.

Background: Forty studies performed between 1970 and 1995 indicated that 60% of parents with children with developmental disabilities reported manifestations of increased risk or negative effects on the well siblings., Method: A secondary data analysis was performed using qualitative data gathered during the baseline of a randomized controlled clinical trial of an intervention for siblings/families of children with long-term conditions, including developmental disabilities. Content analysis was used to identify themes from responses of 151 parents to an open-ended question on their perceptions of the effects on well siblings of living at home with a brother/sister with developmental disabilities., Results: Of 363 themes identified, 61.1% reflected negative manifestations of increased risk in well siblings; 1.7% indicated no risk; and 37.2% reflected positive outcomes, suggesting the continued need for potential interventions., Conclusion: Contemporary family life in these families, as portrayed by parents' descriptions, reflects need in child health care for more intervention research on this vulnerable population.

Background: Communication within families of children with sickle cell disease is important yet has not been adequately investigated., Methods: Focus group interviews were conducted with parents of children with sickle cell disease to explore parent-sibling communication about sickle cell disease., Results: Communication was influenced by attributes and behaviors of the parent, the child with sickle cell disease, and the sibling; extended family, neighbors, friends, and church members or social networks; and available, accessible resources related to the child's health, child's school, and parent employment. Outcomes that influenced and were influenced by factors within and outside the parent-sibling dyad and nuclear family included parent satisfaction, parent roles, family intactness, and status attainment., Conclusions: These findings support previous research with African-American families and expand our views of the importance of educating parents, family members, and others about sickle cell disease. The findings suggest a need to explore sibling perception of this communication, parent and sibling perception of the impact of frequent hospitalizations and clinic visits on the sibling and family, and variations within families of children with sickle cell disease.

This qualitative study identified communication themes among well siblings, parents, and others within families of children with chronic conditions. Semi-structured interviews of 30 parent-well sibling dyads were content analyzed from a larger study of families of children with chronic conditions. Four themes emerged: communication as a reflection of family roles and relationships, giving voice, staying connected, and struggling for normalcy.

Objective: Siblings of children with chronic illness or disability have been reported to have a 1.6 to 2.0 risk for behavioral and mental health problems. Our objective was to examine the effects of an intervention for siblings (age 7-15 years) of children with chronic illness or disability., Method: A randomized, three-group repeated-measures design was used: full intervention (n=79), partial intervention (n=71), and a waiting list control group (n=102). Outcomes were sibling knowledge about illness, behavior problems, social support, self-esteem, attitude, and mood measured over four postintervention periods. Covariates were family cohesion, maternal mood, socioeconomic status, and well sibling age. The full intervention included structured teaching and psychosocial sessions at a 5-day residential summer camp. The partial intervention included camp only. Treatment effects were estimated by using generalized estimating equation panel analyses., Results: The full treatment group showed significant improvements on all six outcomes over most periods, the partial treatment group on three outcomes, and the control group on two outcomes. Improvements in outcomes ranged from 5% to 25% increases over baseline measures., Conclusions: A dose-response relationship to intervention was found. Treatment gains were sustained over a period of 12 months.

Effective parent-child communication may serve to buffer the potential negative impacts of stressful situations on a child. Children who have a brother or sister with a life-threatening or life-limiting medical condition may turn to their parents for help with comprehending the situation, to help maintain their own ability to function across various life areas or to receive emotional support. There is a need for more investigation into the nature and importance of parent-child communication in the context of living with a seriously ill brother or sister. The current paper presents a framework of parent-sibling communication in the context of living with a seriously unwell child, distinguishing the focus of communication (illness-related vs. non-illness-related) and the purpose of communication (information-provision vs. emotional support). Such a framework offers a holistic approach to exploring some of the challenges of communication between parents and well-siblings. The state of current knowledge regarding the focus and purpose of communication between parents and well-siblings is reviewed, and implications for research and possible clinical applications discussed., (© 2020 Paediatrics and Child Health Division (The Royal Australasian College of Physicians).)

The Caregiver Strain Questionnaire assesses the three dimensions of caregiver strain, namely the objective, subjective externalized and subjective internalized strain. It was validated among caregivers of children with Autism Spectrum Disorder (ASD) in the United States and Mainland China with promising psychometric properties. This study aimed to develop and validate the Chinese (traditional script) version of the Caregiver Strain Questionnaire (C-CGSQ) among 198 caregivers of children with ASD in Hong Kong. The C-CGSQ showed excellent internal consistency (α = 0.958) and test-retest reliability (Spearman's r = 0.966). Concurrent, convergent, divergent validity and a three-factor structure (consistent with previous studies) were established. The C-CGSQ demonstrated promising psychometric properties in measuring caregiver strain among caregivers of Chinese ASD children in Hong Kong. [ABSTRACT FROM AUTHOR]

Objectives: Autism spectrum disorder (ASD) is a neurodevelopmental disorder that includes abnormal communication, repetitive and limiting interests, and social dysfunction. This study aimed to identify the experiences of parents in raising children with ADS in Iran. Methods: A total of 18 parents of children with ASD were selected by purposive and convenient... [ABSTRACT FROM AUTHOR]

Objective: To examine the relationship between affiliate stigma, stress, and perceived quality of life among parents of children with cerebral palsy (CP). Method: Surveys (Study 1) and semi-structured interviews (Study 2) were used to collect data. Thirtyeight respondents completed the Affiliate Stigma Scale (ASS), Caregiver Burden Inventory (CBI), and Carerelated Quality of Life (CarerQol) scales (GMFCS). Eleven respondents took part in semi-structured interviews, which were then thematically evaluated. Results: Parents did not feel stigmatized because they had a child with CP. However, parents needed some form of short-term relief from caregiving. After controlling for demographics, high stress respondents experienced high affiliate stigma whereas low stress respondents had better quality of life. Although the respondents with less stigma had a better quality of life, this effect was moderate. Three major themes emerged from the interviews. Conclusion: Counseling, support groups, and helper services should be offered to parents. Also, healthcare professionals participating in CP rehabilitation, community-based rehabilitation, and health institutions should be educated on how to better help parents of children with CP. [ABSTRACT FROM AUTHOR]

Introduction: Concerns about the quality of life (QoL) of parents of children with autism spectrum disorder have been raised by previous study. Policy decision-makers and healthcare professionals can be better informed about the environmental factors associated with parental QoL, which will enhance outcomes for both parents and children. The objective of this review is to perform a comprehensive review that assesses the environmental relevant factors associated with quality of life (QoL) of parents of ASD children (under 18 years old). Methods: To identify the environmental factors associated with parental QoL, a scoping review was conducted using the Arksey and O'Malley original and enhanced framework. Three electronic database (PubMed, Scopus & WOS) and reference list checks were used in the search. Results: Social support, family support, residential condition, and access to services were all factors linked to the parental quality of life in this group. Conclusions: The review highlighted environmental factors as one of the variables that have an association with parental QoL. The results of this analysis also highlighted potential areas of support that have implications on future policy and practices. [ABSTRACT FROM AUTHOR]

The number of children diagnosed with autism is increasing around the world. The role of parents is vital in caring for children with autism, but stigma is a challenging and prevalent aspect that families face in raising and caring for them. This integrative review, undertaken by nurse researchers in 2022, synthesized the existing knowledge of current studies about stigma status and the factors relating to stigma among parents of children with an autism spectrum disorder. The electronic databases searched included PubMed, CINAHL (EBSCO), EMBASE, and Scopus, using the keywords "stigmatization," "parents," and "autism." Thirty-six studies without time limits were included in this review, 16 qualitative, 15 quantitative, four mixed-method, and one interventional study. The results indicated that stigma was common among parents of children with autism in all studies. However, there was a difference related to cultural stigma among parents with autism in Western, Asian, and Middle Eastern countries. Both modifiable and unmodifiable factors were associated with the stigma, for example, parents' age, marital status, child's behavior, and social support. Further longitudinal studies on stigma should be conducted in low-resource areas with different caregivers in large sample sizes to identify the prevalence of stigma and stigma changes among parents of children with autism. This review's results provide evidence for further intervention studies that address factors related to reducing stigma among parents of children with autism. Moreover, healthcare professionals, including nurses working with these families, should assess the level of stigma among these parents to provide timely support. [ABSTRACT FROM AUTHOR]

Purpose: To compare mothers and fathers perceptions of the impact of autism spectrum disorder on their Quality of Life (QoL), we used the Parental-Developmental Disorders-Quality of Life scale (Par-DD-QoL). Method: The perception of QoL of mothers and fathers was compared for 130 pairs of parents of children with ASD and the associated variables were investigated. Results: Mothers perceived a significantly greater impact of ASD on their QoL than fathers. Parents perceived a higher impact of ASD on global QoL when their child's adaptive skills were low and when the level of aberrant behaviors was high. More precisely, the perception of QoL by the mothers was negatively associated with their child's internalized disorders, whereas the perception of QoL by the fathers was negatively associated with their child's externalized disorders. Neither the mothers' nor the fathers' perception of the impact on QoL was associated with their children's age or the severity of their autistic symptoms. Some parental factors, such as being members of a family association, having benefited from training in ASD and having experienced a disruption in professional activity were associated with a greater impact on their QoL. Conclusion: Our finding that the perceived impact of ASD on QoL differed between mothers and fathers argues for individualized psychosocial support. Moreover, the strong correlation between the child's clinical characteristics and the perception by parents of a higher impact of ASD on QoL should be seen as red flag concerning the needs of the parents in terms of social and educational support. Trial registration number: NCT02625116 (October 2015). [ABSTRACT FROM AUTHOR]

This paper reported the quality of life (QoL) of 260 Malaysian parents with autism spectrum disorder (ASD) and factors which influencing it. About half of these parents reported to having good QoL. The factors identified in the double ABCX model showed that perceived social support and sense of coherence (SOC) were mediated by coping strategies and had a positive direct and indirect effect on parents' QoL. These finding reiterate the importance of social support, coping skills, and strong SOC reflection skills in influencing the QoL of parents with ASD child. We therefore suggest parents to utilize the widely available social and organization supports to gain good QoL, which is also important for the wellbeing of their child. [ABSTRACT FROM AUTHOR]

Background: Most autism spectrum disorder (ASD) interventions evaluated child outcomes and ignoring the role of parent and family factors on both the immediate- and long-term effects of therapy. The purpose of this study was to determine the relationship between stigma, parent mental health problems, and quality of life and burden in families of children with ASD in Egypt and its risk factors. Seventy parents of ASD children were recruited from two child intervention centers. Participants were divided into two groups based on burden scale: caregivers of moderate burden (n = 27) and caregivers of severe burden (n = 43). All parents were evaluated for demographic data, zarit Burden Interview, socioeconomic scale, symptom checklist–90 (SCL90), Explanatory Model Interview Catalogue Community Stigma Scale (EMIC-CSS), and the World Health Organization Quality of Life–BREF (WHOQOL-BREF). Results: Half of the parents reported significant stigma, particularly caregivers with a severe burden. Caregivers with severe burden had more depression and about twice the frequency of sensitivity and somatization problems, lower QoL (20%) as compared with caregivers with moderate burden. Parents with ASD had many associate factors such as work, male autistic children and their caregiver, age of children and parents, the severity of the condition, and disease duration with burden, stigma, QoL, and mental health problems. Conclusions: This study linked the interrelationships between increased burden and stigma, impaired quality of life, and parental mental health problems; the presence of one of these variables was found to increase the risk of other variables. [ABSTRACT FROM AUTHOR]

Introduction: Identifying the predictors of parenting stress in parents of children with autism spectrum disorder is crucial to provide the best health-care services. Main text: The scoping review was conducted. Search engines (EBSCO, Springer, PubMed, Ovid, Google Scholar, and Science Direct) were used to collate published studies between the years 2009 and 2020. Keywords used were parenting stress, parental stress, predictors of parenting stress, Autism disorder, Autism, and scoping review. Primary screening of the titles and abstracts of 1039 articles was conducted. The secondary screening of 348 articles resulted in 27 articles included in this review. The reviewed articles revealed core symptoms of the disorder, namely, behavior problems, and socio-communication impairments strongly linked with the high level of parenting stress. Conclusion: This scoping review is the initial step toward encouraging future efforts to provide supportive interventions for parents of children with autism spectrum disorder. [ABSTRACT FROM AUTHOR]

This study examined whether child autistic symptoms would heighten parental affective symptoms through evoking enacted stigma from the community (i.e., public and courtesy stigma) and felt stigma within the parents (i.e., vicarious and self-stigma). Cross-sectional questionnaire data were collected from 441 parents of children with autism spectrum disorder. Path analyses showed that social communication and interaction deficits and restricted and repetitive behaviors in child autism were positively associated with public and courtesy stigma. While public stigma was positively associated with parental vicarious stigma, courtesy stigma was positively associated with parental self-stigma. Both vicarious and self-stigma were positively associated with depressive and anxiety symptoms among parents. Findings revealed how child autism could compromise parental well-being through exacerbating the family's stigmatizing experiences. [ABSTRACT FROM AUTHOR]

Aim: In families with a child diagnosed with spinal muscular atrophy (SMA), siblings who do not have SMA could still be genetic carriers of the condition. This study is the first to explore how siblings of patients with SMA learn about the condition and their genetic risk.Method: In-depth, semi-structured interviews were conducted with several parents and unaffected siblings of people with SMA types II and III in Australia. Thematic analysis was performed.Results: Siblings described learning about SMA gradually over time through conversations with their parents and other sources, including the Internet, biology classes and support groups. Parents and unaffected siblings described challenges in family communication due to the emotional intensity associated with having SMA in the family. Most siblings did not report learning from their family how the inheritance of SMA related to their own genetic carrier risk and possible reproductive implications.Conclusion: Siblings described their parents as being open and honest in communicating about SMA; however, this study found that communication before the age of understanding abstract concepts, in combination with the emotional intensity of SMA, resulted in gaps in knowledge about SMA. [ABSTRACT FROM AUTHOR]

Parents are valuable stakeholders in research, clinical practice and policy development concerning autism spectrum disorder (ASD). Little is known, however, about how parents view and experience an ASD diagnosis. We investigated the evolution of parents' views and experiences of the ASD diagnosis before, right after and 12 months after their child was diagnosed. Seventeen Flemish parents waiting for their young child's diagnostic ASD assessment participated in a longitudinal study consisting of three in-depth interviews. They described their views and experiences concerning their child's ASD diagnosis at three separate moments: (T1) prior to a diagnostic ASD assessment; (T2) immediately after their final feedback session at the end of the assessment; and (T3) 12 months later. Interviews were digitally recorded, transcribed and analysed in Nvivo 11 according to the procedures of interpretative phenomenological analysis. We extracted three themes from the interview material throughout the parental journey: (T1) expecting certainty and exculpation; (T2) vulnerabilisation of the child; and (T3) pragmatic attitude and some disappointment. At T3, the parents overall had come to value the diagnosis because of two reasons: they were satisfied with their child's entitlement to ASD-related support at school, and with the diagnosis' impact on the child's relationships with parents and teachers. Many parents experienced their child with an ASD diagnosis as vulnerable, and themselves as acutely responsible for his development and future. Our findings may lead to a higher satisfaction with the clinical trajectory in both clinician and parents by inspiring a conversation between them about parents' evolving views, hopes and concerns related to their child's ASD diagnosis. [ABSTRACT FROM AUTHOR]

Background: Parents caring for children with normal life span threatening disabilities are exposed to numerous and accumulated stressors. In alignment with current approaches of evidence and value based care, it is essential to integrate knowledge of what encourages parents to hold or recover well‐being in care planning and delivery. An omission in knowledge was identified concerning the outline of parents' challenges and ambitions understood from their perspective. Aim: The aim of this study was to explore the insiders perspective of parents caring for children with profound disabilities. Method: The electronic databases CINAHL, PsycINFO, Psychology and Behavioral Sciences Collection and PubMed/MEDLINE were searched to identify relevant research knowledge (≥2005; peer‐reviewed publications in English language). The PRISMA framework was used for structuring literature screening. Criteria for screening and assessing eligibility led to inclusion of 26 studies. Studies were checked for methodological quality according to the critical appraisal tool developed by Hawker. Literature was reviewed following guidelines for narrative synthesis. Results and conclusion: The majority of included studies presented similar, consistent findings though highlighted different aspects of the researched experiences by using specific scopes to understand and interpret the field of knowledge around the meaning of parenting a child with profound disabilities. The process of reviewing led to the overarching theme of keeping balance. Within this overarching theme, six dimensions were elaborated: rediscovering and maintaining family life, delicate inclusion in society, balancing within care triads, integration in service systems, financial consequences and nourishing personal resources to maintain or recover balance. Policymakers, community stakeholders and professional care deliverers should use extracted evidence in order to facilitate debated humanisation of care processes. [ABSTRACT FROM AUTHOR]

To deal with stress, parents of children with ASD use coping strategies that help to tackle the challenging situations of raising their child. This systematic review examines parental coping strategy's questionnaires, factors which influence these coping strategies, interactions between these strategies and perceived stress and their impact on parental quality of life. According to PRISMA guidelines, an electronic search was conducted on Medline, PsycInfo and Eric: 156 articles were identified and 11 studies were selected. Many types of self-reported questionnaires were used to assess parental coping strategies. Studies highlighted that parents of a child with ASD used more avoidance strategies and less social support-seeking strategies than those of typical children. Furthermore, problem-focused coping protects parental stress and quality of life, that on the contrary, emotion-focused coping is a risk factor for alteration. Our systematic review illustrates the need to adapt psychoeducational interventions for parents of children with ASD. [ABSTRACT FROM AUTHOR]

Objectives: Many parents of children with developmental disabilities, including autism spectrum disorders and attention deficit disorders, experience poor well-being and increased anxiety and depression. Very few interventions directly target parents' needs. The peer-delivered HOPE Programme was designed to address this with six weekly group sessions focusing on self-management skills, including goal setting and expressing gratitude.Methods: This pre-post study aimed to examine changes in anxiety, depression, well-being, hope and gratitude, and to explore associations between changes in anxiety and depression and changes in gratitude and hope. Validated measures of depression, anxiety, positive well-being, gratitude and hope were used. Parents of children with a range of developmental disabilities, most commonly autism spectrum disorders, were recruited.Results: Of 137 (86.9% female) recruited, 108 parents completed the course and post-course data. Parents' depression, anxiety, well-being, gratitude and hope all significantly improved between baseline and post-course. Hope and gratitude correlated significantly with depression, anxiety and well-being. Baseline depression, baseline gratitude, post-course hope and gratitude explained 50% of the variance in post-course depression. Reduced work hours, and baseline and post-course hope and gratitude explained 40% of the variance in post-course well-being. Anxiety was not associated to hope nor gratitude at either time point.Conclusions: This study provides initial support for feasibility and potential effect of the peer delivered self-management intervention on parental anxiety and depression. Changes in gratitude and hope account for some change in depression, but not anxiety. A randomised controlled trial is needed to establish efficacy and explore mechanisms of change in-depth. [ABSTRACT FROM AUTHOR]

Summary: Several studies have investigated the effects of general anaesthesia on neurodevelopment in children, with conflicting results. The potential for early general anaesthesia exposure to impact neurodevelopment in children may cause significant concern for parents. Administering a questionnaire in 200 parents, we aimed to explore their knowledge, concerns and perceptions, and determine factors which influence parents' willingness for their children to participate in relevant research studies. A significant proportion of parents (40%) were concerned that general anaesthesia may affect their child's neurodevelopment. Generally these concerns arose from the parents' own beliefs or preconceived ideas and only 25.5% had encountered prior information in this domain. Parents with children aged 2 years or younger, those whose children had previous general anaesthesia exposure, and those who had encountered information about potential neurodevelopmental effects were most likely to be concerned. The majority of parents (68%) would agree to participate in research studies, especially if they were able to receive the test results. Anaesthetists should pre‐emptively initiate discussions to address any potential misconceptions regarding the effects of general anaesthesia on neurodevelopment in children. [ABSTRACT FROM AUTHOR]

Much research has documented the elevated levels of stress experienced by families of autistic children. Yet remarkably little research has examined the types of support that these families perceive to be beneficial to their lives. This study, co-produced by researchers and school-based professionals, sought to establish these families’ support needs from their own perspectives. In total, 139 parents of autistic children with additional intellectual disabilities and limited spoken communication, all attending an inner-city London school, participated in an initial survey examining parental wellbeing, self-efficacy and the extent to which they felt supported. Semi-structured interviews were conducted with a subgroup of parents (n = 17), some of whom reported in the survey that they felt unsupported, in order to gain their in-depth perspectives. The results from both the survey and the interviews suggested that existing support (particularly from formal support services) was not meeting parents’ needs, which ultimately made them feel isolated and alienated. Parents who were interviewed called for service provision that adopted a relational, family-centred approach – one that understands the specific needs of the whole family, builds a close working relationship with them and ensures that they are supported at times when the parents and families feel they need it most. [ABSTRACT FROM AUTHOR]

Although there is increasing research interest in the parenting of children with ASD, at present, little is known about everyday strategies used to manage problem behaviour. We conducted a meta-synthesis to explore what strategies parents use to manage irritability, non-compliance, challenging behaviour and anxiety in their children with ASD. Approaches included: (1) accommodating the child; (2) modifying the environment; (3) providing structure, routine and occupation; (4) supervision and monitoring; (5) managing non-compliance with everyday tasks; (6) responding to problem behaviour; (7) managing distress; (8) maintaining safety and (9) analysing and planning. Results suggest complex parenting demands in children with ASD and problem behaviour. Findings will inform the development of a new measure to quantify parenting strategies relevant to ASD. [ABSTRACT FROM AUTHOR]

This study investigated the psychometric properties of the Child and Family Quality of Life scale, a measure of psychosocial quality of life in those with autism and related developmental disorders. Parents of 212 children suspected of autism spectrum disorder completed the Child and Family Quality of Life prior to a diagnostic evaluation. Results indicated that the Child and Family Quality of Life measured six unique quality-of-life constructs (child, family/caregiver, financial, external support, partner relationship, and coping), had good reliability across score ranges and exhibited expected patterns of convergent validity. Caregivers of autism spectrum disorder–affected children reported reduced family quality of life prior to the time of diagnosis relative to caregivers of children with other developmental disabilities. The Child and Family Quality of Life is a brief, reliable measure for assessing psychosocial quality of life in families affected by developmental disability. This study is the first to demonstrate impairments in family quality of life early in the developmental course of autism spectrum disorder, prior to formal diagnosis. In addition to traditional child-focused intervention strategies, families with autism spectrum disorder–affected children require early, broad intervention strategies that positively impact the whole family. [ABSTRACT FROM AUTHOR]

Objective: This paper explores possible connections among existing literature on parental stress, augmentative and alternative communication (AAC), and use of mobile technology for persons with autism spectrum disorder (ASD). Methods: A narrative review of the literature. Results: Parental support contributes to positive outcomes for children who use AAC. Parents identify communication as a high priority, but describe the process as challenging. AAC is often used with children with ASD, a population in which parental stress is especially high. Though there is research evidence that mobile technology is a promising tool for individuals with ASD, potentially misleading media anecdotes exist, and the effects on parental expectations and stress remain unstudied questions. Conclusion: Increased understanding of the connections in these research areas should help clarify the potential impact of mobile technologies on parental stress level, help to define appropriate future research directions, and contribute to development of appropriate caregiver training. [ABSTRACT FROM AUTHOR]

Background: Stigma is prominent in the lives of autistic individuals and their families and contributes significantly to the challenges faced by families raising an autistic child. Parents and carers can feel blamed for their child's behaviour, feel socially excluded and isolated and suffer from low self-esteem and poor psychological well-being. This increases the risk of experiencing self-stigma which further exacerbates these and other negative consequences. Therefore, there is a need for interventions that help parents/family carers cope with autism-related stigma as well as prevent the internalisation of stigma. Objectives: The primary objective of this study is to assess the feasibility and acceptability of a stigma support intervention for parents and carers of autistic children titled 'Stigma of Living as an Autism Carer (SOLACE)'. The secondary objective is to explore the preliminary impact of the intervention on the mental health of the parents and carers. Methods: A pilot randomised controlled trial feasibility study will be implemented. A group receiving the SOLACE stigma support intervention (n = 12) will be compared against a control group not receiving any additional intervention (n = 12). Family carers of autistic children up to the age of 10, who have been recently diagnosed or are currently undergoing diagnosis, will be recruited for the study. Participants will be randomly allocated to the intervention or control group and will take part in eight weekly group-based sessions designed to improve the well-being of the parents primarily through increasing their resilience to stigma. Feasibility will be determined by recruitment and retention rates and a qualitative focus group evaluating the acceptability of the intervention and outcome measures. The primary outcome of interest is psychological well-being, and depending on the normality of distribution, independent samples T tests will be used to compare the outcome scores between the two groups and dependent samples T tests for differences within the group. Other outcomes of interest are stigma, self-stigma, self-esteem, self-blame, social isolation, self-compassion and perceived responsibility and control. Discussion: Results from the feasibility randomised controlled trial will be used to refine the study protocol and inform the design of an intervention for future use in a larger, powered trial. SOLACE could potentially improve the psychological well-being of parents/family carers of autistic children through increased resistance to stigma. Trial registration: ISRCTN Registry number ISRCTN61093625 (October 13, 2017). [ABSTRACT FROM AUTHOR]

Purpose: To assess the quality of life (QoL) of caregivers of children with sickle cell disease (SCD) and to determine the risk factors associated with poor QoL.Method: A cross sectional study was conducted between 01 and 30 June 2015, in a tertiary care center in western Saudi Arabia to assess various dimensions of QoL by using TNO-AZL Questionnaire for Adult's Health-related Quality of Life (TAAQOL). A total 164 adult caregivers (aged 16 years or more) of children with SCD, who were regularly visiting the department were enrolled (refusal rate = 61.6%). The questionnaire scores were transformed into 0-100 scale; with higher scores indicating less difficulty and better QoL Demographic, socioeconomic data and a satisfaction questionnaire regarding participants' lifestyle were collected and analyzed as risk factors for impaired QoL, by comparing different QoL dimensions' scores using independent t-test, Oneway ANOVA, or linear regression, as appropriate.Results: Sixty-three caregivers were included; 79.4% were mothers, age range 21-71 years, 64.5% were from low social class receiving insufficient support and financial needs were unmet for considerable number of families. Analysis of QoL using TAAQOL showed that emotions (median [75th centile] = 44.44 [66.67] for negative and 61.11 [72.22] for positive emotions), sleep quality (66.67 [91.67]) and sexual life (50.00 [83.33]) were the most affected dimensions. Professional achievement (91.67 [100]), cognitive skills (83.33 [100]), and social contact (100 [100]) were relatively preserved. Negative emotions were more marked in mothers and mostly predicted by satisfaction with social relations notably with partner (B = 3.14, p = 0.016), friends (B = 2.51, p = 0.015) and relatives (B = 2.69, p = 0.016). Positive emotions were predicted by the levels of satisfaction of the caregiver with his/her health (B = 2.56, p = 0.001), job achievement (B = 4.54, p = 0.001), living conditions (B = 2.60, p = 0.034) and the condition of the diseased child (B = 2.55, p = 0.011). A strong correlation was found between sleep quality and cognitive skills.Conclusion: There are notable financial and emotional burdens on the caregivers of children with SCD affecting various aspects of their QoL, which are likely to be impacted by the individual levels of social and professional achievement. Physicians and health authorities should give particular attention to the QoL of caregivers and families of children with SCD, to help them cope up with the disease and overcome its related psychological and financial impacts. [ABSTRACT FROM AUTHOR]