Variations in Perceptions of Well-Being within Families of Youths with Intellectual Disabilities in Saudi Arabia.

This study investigates the family well-being among Saudi Arabian families with youth who have an intellectual disability. A sample of 148 family members, including parents and other relatives, was surveyed on emotional well-being, family interactions, and parenting. This study aimed to explore the unique challenges and dynamics within these families, providing insights into how an intellectual disability in a youth affects the family unit. The research highlights a gap in understanding the specific impacts of intellectual disability on family life in the Saudi context. Key findings include variations in family quality of life perceptions among different family members, with fathers showing distinct levels of satisfaction. This study contributes to the development of culturally sensitive support strategies and policies, emphasizing the need for targeted interventions to enhance the well-being of these families in Saudi Arabia.

Families of Children with Intellectual and Developmental Disabilities: Variables Associated with Family Quality of Life.

Families of children with intellectual and developmental disabilities often face unique challenges that significantly impact their quality of life. Understanding the predictors of family quality of life (FQOL) is crucial for developing effective support systems and interventions. AIM: This study investigated the predictors that might influence the perception of families having a member with a disability regarding their quality of life (FQOL). METHOD: The sample consisted of 320 family members from the Riyadh region of Saudi Arabia. RESULTS: The overall results showed that participants' satisfaction with FQOL was at a moderate level. Further results indicated that variables associated with severity, type of disability, and the mother's age and education were significant predictors of the FQOL. CONCLUSIONS: These results emphasize the importance of considering the variables that impact FQOL, such as the severity and type of disability, and mother's related variables, when directing support to families with a member with a disability. The recommendations and limitations of the study were discussed.

Enhancing the quality of life of mothers of children with intellectual disabilities or Autism: The role of disability-specific support.

BACKGROUND: A holistic approach considering the physical, emotional, and social dimensions of living with a disability is essential for developing effective support systems, policies, and interventions. The quality of life of individuals with disabilities is interrelated with the well-being of their families making family quality of life (FQOL) a crucial aspect of study. AIMS: This study explores the effects of support on FQOL among Saudi Arabian families with children diagnosed with intellectual disabilities or autism, from the perspectives of 269 mothers. METHODS AND PROCEDURES: Through a survey, we examined how disability-related support correlates with FQOL, emphasizing the need for personalized support systems. We employed multiple regression analysis to assess the impact of various factors on FQOL, including the type and severity of disability, family income, and marital status. OUTCOMES AND RESULTS: The findings revealed that disability-related support is a significant predictor of FQOL, highlighting its critical role in enhancing the well-being of families. CONCLUSIONS AND IMPLICATIONS: This study contributes to the scarce regional literature, and underscores the importance of inclusive social policies tailored to the diverse needs of families with disabilities.

Relationship between affiliate stigma and family quality of life among parents of children with autism spectrum disorders: The mediating role of parenting self-efficacy.

BACKGROUND: The parents of children with autism spectrum disorder (ASD) are under great pressure and experience discrimination in their daily lives, which affects their family quality of life (FQOL). OBJECTIVE: METHODS: A total of 237 parents of children with ASD were recruited in a university-affiliated hospital in Guangzhou, China, from October 2020 to April 2021 by convenience sampling. The Affiliate Stigma Scale, Parenting Sense of Competence Scale and Beach Center Family Quality of Life Scale were employed for data collection. RESULTS: The results showed that affiliate stigma negatively predicts total FQOL and the dimensions of FQOL through both a direct effect and an indirect effect through parenting self-efficacy. CONCLUSIONS: The findings suggest that affiliate stigma is an important predictor of FQOL, and interventions to reduce affiliate stigma and strengthen parenting self-efficacy might be effective in improving FQOL in the parents of children with ASD.

Family quality of life of parents of children with intellectual disability: Do psychological stress and parental involvement matter?

Background: The psychological stress of parents and improving family quality of life (FQoL) are continuing concerns for families of children with intellectual disability. We need to identify further ways to reduce their stress and improve their FQoL in China. Method: Examine the interrelations between psychological stress, parental involvement, and FQoL for parents with intellectual disability in mainland China. 467 parents of children with intellectual disability completed instruments measuring variables. Structural equation modelling (SEM) was employed to examine the interrelations. Results: Psychological stress, directly and indirectly, influenced parental involvement in FQoL. Physical and mental response (PMR) and risk awareness (RA) had a positive direct effect on FQoL, and optimistic hope (OH) had a negative effect on FQoL. Conclusions: Psychological stress affects FQoL of parents with children with intellectual disability in complex ways. Policies should be developed to help parents with children with disability decrease stress and develop scientific parental involvement.

Caregiver Burden and Family Quality of Life in Early Intervention: The Role of Mothers and Family Confidence.

(1) Background: Because life events when there is a family member with a disability can affect the overall family wellbeing, contributing to enhance family quality of life (FQoL) in the field of early childhood intervention has become a priority. However, it is a distal outcome that needs other short-term outcomes to be addressed, some of them under the potential impact of support services. This study examines the relationships between caregiver burden, family confidence, and FQoL, as well as the influence of child and family variables. (2) Method: A total of 58 families with children in early intervention from four Spanish communities participated. Hierarchical regression was conducted to assess the relevance of each predictor. Also, a mediation was performed to investigate the mediating role of family confidence. (3) Results: The family income impacted FQoL scores, and when burden and confidence were added, it was no longer relevant. Mothers with higher levels of confidence predicted a higher FQoL. Finally, we found a complete mediation of family confidence in the relations between severity and caregiver burden on FQoL. (4) Conclusions: Caregiver burden and family confidence affect FQoL. Building families' confidence contributes to attenuating the impact of burden on FQoL.

Electronic Version of the Family Quality of Life Survey (eFQOLS): Reliability and Validity for Families of Individuals With Disabilities and Chronic Health Conditions.

This study tested the psychometric properties of an electronic Family Quality of Life Survey (eFQOLS) when used with families of individuals with disabilities and/or chronic health conditions. Data gathered from 272 family caregivers using the eFQOLS were subjected to reliability analysis, correlation analysis, and confirmatory factor analysis to test the internal consistency of the scales, as well as criterion and construct validity of the internal structure of the scale. Testing factor structures of the item-level domain models indicated that initiative and stability had low factor loadings in many domains. As a result, these items were deleted from the subscales. The subscale-level FQOL factor structure demonstrated a good fit after two adjustments. The internal consistency of the 27-item total FQOL scale was excellent (α = .93), while that of the subscales ranged from moderate to strong (α = .69 to .90). The eFQOLS had a moderate degree of construct validity, good criterion validity, and reliability when used with diverse families across the lifespan. Additional research is needed to continue refining the survey with a more heterogenous sample.

A Pilot Study of a Family Management Program for Parents of Children with Acute Lymphoblastic Leukemia.

OBJECTIVES: The aim of this completed pilot study was to evaluate the feasibility of implementing a family management program (FMP) for parents of children with acute lymphoblastic leukemia (ALL). DATA SOURCES: A convenience sample of 11 parents of preschool-aged children with ALL were recruited from an ambulatory chemotherapy-care clinic at a tertiary hospital in Thailand. Participants received three FMP sessions over 3 weeks. The FMP is based on two established family programs (ie, FMP-style framework and building on family strengths) and reviewed literature. The following measures were used to evaluate parents' responses at baseline, postintervention, and follow-up: Family Management Measure, Beach-Center Family Quality-of-Life Scale, and Pediatric Quality of Life Inventory. Data were analyzed using one-way repeated-measures analysis of variance. CONCLUSION: The study results provide promising evidence that the FMP is feasible and improves family management and quality of life for parents of enrolled children with ALL. IMPLICATIONS FOR NURSING PRACTICE: Educating pediatric oncology nurses and other healthcare professionals to replicate the FMP may help to provide better family management, and child quality of life support to future parents and other family members of young children diagnosed with ALL. This support should focus on educating parents about the potential effects of caring for a child with ALL on the family and fostering positive relationships within the family and offering guidance on effective family communications and decision-making processes.

The effect of 3D modeling on family quality of life, surgical success, and patient outcomes in congenital heart diseases: objectives and design of a randomized controlled trial.

BACKGROUND: Understanding the severity of the disease from the parents' perspective can lead to better patient outcomes, improving both the child's health-related quality of life and the family's quality of life. The implementation of 3-dimensional (3D) modeling technology in care is critical from a translational science perspective. AIM: The purpose of this study is to determine the effect of 3D modeling on family quality of life, surgical success, and patient outcomes in congenital heart diseases. Additionally, we aim to identify challenges and potential solutions related to this innovative technology. METHODS: The study is a two-group pretest-posttest randomized controlled trial protocol. The sample size is 15 in the experimental group and 15 in the control group. The experimental group's heart models will be made from their own computed tomography (CT) images and printed using a 3D printer. The experimental group will receive surgical simulation and preoperative parent education with their 3D heart model. The control group will receive the same parent education using the standard anatomical model. Both groups will complete the Sociodemographic Information Form, the Surgical Simulation Evaluation Form - Part I-II, and the Pediatric Quality of Life Inventory (PedsQL) Family Impacts Module. The primary outcome of the research is the average PedsQL Family Impacts Module score. Secondary outcome measurement includes surgical success and patient outcomes. Separate analyses will be conducted for each outcome and compared between the intervention and control groups. CONCLUSIONS: Anomalies that can be clearly understood by parents according to the actual size and dimensions of the child's heart will affect the preoperative preparation of the surgical procedure and the recovery rate in the postoperative period.

Outcomes for children with autism spectrum disorder and their families after two years of school based early intensive behavioural intervention.

The effectiveness of a school based Early Intensive Behavioural Intervention (EIBI) program was assessed over a two-year period for a cohort of 16 pre-school children with autism spectrum disorder (ASD) and their families. Children with a mean age of 40 months, were assessed prior to intervention, after 1 year of intervention, and again after 2 years. Significant improvements were observed on measures of adaptive behaviour, communication ability and challenging behaviour. Parents of children attending the program also reported increased familial quality of life, specifically improved emotional and physical well-being and increased parenting capacity over the duration of the program. The current study suggests that EIBI for young children with ASD can be effective in facilitating improvements in communication ability, reducing challenging behaviours and improving quality of life for families. Children's pre-intervention adaptive skills appeared to be the strongest predictor of post intervention gains as initial level of adaptive ability was positively related to improved post-intervention outcomes.

Transition to adulthood of adolescents with profound intellectual and multiple disabilities: Content validation of the SGU-PIMD to support families.

BACKGROUND: For families with adolescent children, the transition to adulthood is usually challenging. This period may be extra demanding for families with a child with profound intellectual and multiple disabilities due to the child's strong and persistent support needs. To support these families during this phase and to facilitate the transition process of these adolescents, we adapted the Canadian skills for growing up (SGU) into the skills for growing up-profound intellectual and multiple disabilities (SGU-PIMD). The aim of this study is to determine its content validity. METHOD: A Delphi study with family members and healthcare professionals was conducted. RESULTS: Results showed good content validity. However, the Delphi panel suggested minor adjustments to improve relevance, comprehensibility and comprehensiveness. CONCLUSIONS: The current SGU-PIMD can be used in practice for supporting adolescents with profound intellectual and multiple disabilities. However, there are also recommendations for research into the feasibility and acceptability of the instrument.

The importance of parenting self-efficacy and social support for family quality of life in children newly diagnosed with autism spectrum disorder: A one-year follow-up study.

Improving the quality of family life (FQoL) is one of the ultimate goals for autism spectrum disorder (ASD) intervention, and parenting self-efficacy and social support are critical for the well-being of families. However, longitudinal studies focusing on FQoL and its predictors for families of children with ASD are scarce. This study aims to describe the characteristics of FQoL among parents of children newly diagnosed with ASD at two waves (newly diagnosed and diagnosed after one year) and to explore the predictors of FQoL at two waves. It was conducted at a tertiary hospital in Guangzhou, China. A total of 156 parents and their children were included in Wave 1, followed up with 110 in Wave 2 after 1 year. The overall satisfaction of FQoL improved (t = -2.128, p < 0.05), while satisfaction with physical/material well-being decreased (t = 5.972, p < 0.01). Additionally, the overall importance rating of FQoL improved but did not have statistical significance (p > 0.05). Parents with higher parenting self-efficacy (ß = 0.716, P < 0.01), and more subjective social support (ß = 1.127, p < 0.001) reported higher satisfaction with FQoL, and those with better social support utilization (ß = 1.066, p < 0.05) reported higher importance for FQoL. FQoL needs to be improved in the early stage of ASD diagnosis, and parental self-efficacy and social support can serve as the intervention targets.

Exploring Sleep in Caregivers of Children with Autism Spectrum Disorder (ASD) and the Relationship to Health-Related Quality of Life (HRQoL) and Family Quality of Life (FQoL).

Background and Objectives: To investigate (1) the prevalence of sleep disorder symptoms in caregivers of children with autism spectrum disorder (ASD) and (2) the relationships between caregiver sleep problems and their health-related quality of life and family quality of life. Materials and Methods: Descriptive cross-sectional study of caregivers (N = 62) of children aged 6 to 11 years old diagnosed with ASD and receiving care at a regional autism research and resource center. Results: Participants completed the Sleep Habits Questionnaire (SHQ), the Medical Outcomes Study (MOS) SF-12, and the Beach Center Family Quality of Life Scale (FQoL). Caregivers with longer sleep duration reported better mental health and better family quality of life. Caregivers who reported insomnia symptoms, non-restorative sleep, and insufficient sleep were more likely to report poorer mental health than caregivers who did not report these sleep disorder symptoms. Caregivers with obstructive sleep apnea and restless legs syndrome experienced worse physical quality of life. Conclusions: The physical and mental health of the primary caregiver is essential to the support of the child with ASD and to the functioning of the family. The study findings point to the importance of future research and interventions to enhance sleep health in order to improve quality of life for caregivers of children with ASD.

Family-centered approach in Early Childhood Intervention of a vulnerable population from an Ecuadorian rural context.

Introduction: Studies about the implementation of the Family Centered Practices approach in Early Childhood Intervention refer as outcomes that have an impact on the Quality of Family Life, on children's development, and also on family empowerment. In Ecuador, despite an absence of Early Childhood Intervention policies and programs, a university has developed training in Family Centered Practices for graduate students. A formative component is to implement a Routines Based Model with families of children with disabilities. The aim of the study is to analyze the impact on the Family Quality of Life, children's development and self-perceived competence of families after the Routines Based Model has been implemented in their natural environment. Method: Eight families from a rural area and their children with disabilities were included in the study. The Family Quality of Life Scale-Early Childhood Intervention and the Screening of the Battelle Developmental Inventory were applied at the beginning and end of the process. A qualitative interview established the family perspective upon the outcomes in their family and their children. Results: There is evidence of a significant increase in the families' Quality of Life and in the children's development at the end of the process. At the interview the families declared themselves more competent to understand and contribute to the development of their children. Discussion: The results provide knowledge of the implementation of a Routine Based Model in vulnerable contexts. Also contributes in the understanding of the family perspective on the outcomes and perceived benefits for the children and the family itself as a measure of quality of the intervention and training. Implications of the results for initial and ongoing training of early care professionals with vulnerable populations are discussed.

The care burden of mothers of children with disability: Association between family quality of life and fatigue.

AIM: This study was performed with the aim of investigating the correlation between care burden, family quality of life and fatigue of mothers of children with disability. MATERIAL AND METHOD: The sample for this descriptive study comprised the mothers of 280 children with disabilities accepting participation in the study, meeting the inclusion criteria, and registered in special education and rehabilitation centers in Turkey. Data were collected with the Mother-Child Descriptive Information Form, Bakas Caregiving Outcomes Scale (BCOS), Beach Center Family Quality of Life Scale (BCFQOLS) and Fatigue Severity Scale (FSS). RESULTS: Mothers, mean BCOS scores were 63.29 ± 17.47, mean BCFQOLS scores were 93.74 ± 14.63, and mean FSS scores were 3.84 ± 1.43. There was a statistically significant positive, moderate intensity correlation between the BCOS scores and BCFQOLS scores of mothers (r = 0.404, p < 0.001); a statistically significant negative weak correlation between BCOS scores and FSS scores (r = -0.346,p < 0.001); and a statistically significant negative weak correlation between BCFQOLS scores with FSS scores (r = -0.22,p < 0.001). According to regression analysis, the care burden of mothers was identified to be a significant determinant of family quality of life and fatigue severity (p < 0.05). CONCLUSION: The results of the study showed that as the care burden of mothers of children with disability increases, family quality of life reduces and fatigue levels increase. PRACTICE IMPLICATIONS: It is recommended to support the mother in the care process, to plan activities and trainings to reduce the burden and fatigue of care, to increase the quality of family life, and to provide psychological support.

Siblings of people with intellectual and developmental disabilities: a systematic review on their quality of life perceptions in the context of a family.

Background: Within Family Quality of Life (FQoL) research, perceptions of siblings of people with intellectual and developmental disabilities (IDD) in the setting of a family are limited studied. The aim of this systematic review is to find relevant information about quality of life perceptions of siblings of people with IDD. Two main questions guided this review: (1) what are the siblings' perceptions on quality of life in the context of their family? (2) what needs and challenges do siblings have regarding their quality of life as siblings of individuals with IDD? Methods: A systematic search was conducted using Scopus, PsycInfo, ERIC and Web of Science databases, involving keywords and combinations such as Intellectual and Developmental Disabilities, Family Quality of Life and siblings. Results: We identified a total of 48 articles. Analysis showed siblings' diverse perceptions of quality of life and their multiple experiences, needs, desires and concerns. Conclusions: Results contribute to knowledge about the quality of life and well-being of siblings of all ages. Suggestions for support, interventions and future research are given, such as the necessity of educating local communities regarding siblings' needs, the study of siblings' experiences in different cultural contexts or the importance of conducting research with clear theoretical frameworks and focused on the multiple components that might be influencing siblings' quality of life.

Participants' Bias in Disability Research on Family Quality of Life during the 0-6 Years Stage.

BACKGROUND: Over the past two decades, various research teams have designed and applied instruments to measure the quality of life of families with a member who has a disability. A recent systematic review on the state of the Family Quality of Life in early care identified that many of these studies collected data only from the mothers. The present study aimed to investigate whether there is a bias in participant selection in these types of studies. METHOD: A systematic review of the scientific literature was conducted in three databases-Scopus, Web of Science, Eric-from 2000 to 2022. A total of 72 empirical studies were identified. RESULTS: The findings indicate that most studies examining the Family Quality of Life were based on the information of a single informant per family unit. The profiles of participants according to the research objective are quite similar. In one-third of studies, the authors reported that family members who participate cannot be represented by only mothers or one participant per household. CONCLUSIONS: Given the dynamic and collective nature of the construct, the application of a systemic approach is necessary.

Quality of Life of Latin-American People with Neuromuscular Disorders and Their Families During the COVID-19 Pandemic.

Objectives: The COVID-19 pandemic has affected the entire population, especially the population with chronic diseases. This study aimed to describe the quality of life of children and adults with neuromuscular diseases and their caregivers during the COVID-19 pandemic. Methods: A observational correlational study was conducted. Forty-seven participants, including adults with NMD and caregivers of children with NMD, took part in the study. The WHOQOL-BREF and PedsQL 4.0 GCS and FIM scales were used. Results: The PedsQL indicated a mean of 55.85 (SD = 22.05) for children, and a mean of 55.76 (SD = 16.72) for caregivers. Adults reported a mean of 67 (SD = 22.5) for their general perception of quality of life, and a M = 53 (SD = 28.25) for their perception on health. Conclusions: The results showed regular to low quality of life of all children, adults, and caregivers, mainly in the physical dimension for people with neuromuscular diseases, and in the concerns dimension for caregivers. These results warn about the physical and psychological vulnerability situation in which this population finds itself.

Measuring parental stress, illness perceptions, coping and quality of life in families of children newly diagnosed with autism spectrum disorder.

BACKGROUND: A variety of psychosocial factors have been shown to affect the quality of life of families (FQoL). AIM: This study aimed to assess the impact of mother's demographic characteristics, parental stress, illness perceptions about autism spectrum disorder (ASD), coping strategies, ASD severity and time since diagnosis on FQoL during the initial period following diagnosis (≤6 months). METHOD: Fifty-three mothers of children newly diagnosed with ASD completed the Beach Center Family Quality of Life Scale, the Autism Parenting Stress Index, the Brief Illness Perception Questionnaire and the Brief Coping Orientation to Problems Experienced Inventory. A descriptive analysis was conducted on the demographic characteristics of the family. Eta coefficients and Pearson's analysis were used to determine the associations between the variables and the FQoL dimensions. Hierarchical regression was used to determine whether variables explained a statistically significant family quality of life variance. RESULTS: Pearson's analysis and eta coefficients indicated several correlations. Hierarchical regression analysis showed that higher parental stress related to core autism symptoms was associated with poorer FQoL (95% CI -0.08 to -0.02, P = 0.001), and higher perceived treatment control was associated with better FQoL (95% CI 0.04-0.16, P = 0.001). In addition, stronger perceived personal control was associated with higher physical/material well-being (95% CI 0.01-0.16, P = 0.022) and higher disability-related support (95% CI 0.30-0.61, P = 0.001). Higher family monthly income was associated with better FQoL (95% CI 0.08-0.027, P = 0.000), whereas marital status (divorced mother) was correlated with poorer FQoL (95% CI -0.68 to -0.16, P = 0.002). CONCLUSIONS: Interventions should emphasise managing the disorder's characteristics and implementing psychoeducational and supportive programmes for parents, immediately after the diagnosis, to enhance FQoL.

What Factors Explain Family Quality of Life in Neurodegenerative Diseases?

Neurodegenerative diseases (NDs) are a major cause of dependency among elderly and affect the entire family unit. However, the literature has paid little attention to Family Quality of Life (FQOL) and focused on the patient and the main caregiver. The aim was to analyze the FQOL of people with NDs from a systemic perspective and to identify associated factors. A sample of 300 family caregivers from the cross-border region of Spain-Portugal completed the FQOLS - ND, which collected FQOL global and domain-level scores in terms of attainment and satisfaction. The highest rates of FQOL were obtained for the domain Family relations and the lowest for Support from services. The level of perceived barriers to social-health services emerged as the strongest predictor of global FQOL in all models. It is essential to reduce the obstacles to access social-health services and provide the family with resources according to their needs, especially in rural areas.