Family Quality Of Life Research Articles

Family Quality of Life in Foster and Adoptive Families of People with IDD

Family Quality of Life in Foster and Adoptive Families of People with IDD

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 parentingself-efficacy (β = 0.716, P < 0.01), and more subjective social support (β = 1.127, p < 0.001) reported higher satisfaction with FQoL, and those with better social support utilization (β = 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.

Qualitative differences in perspective on children’s quality of life between children with cerebral palsy and their parents

BackgroundCerebral palsy (CP) is one of the most common childhood disabilities, impacting many areas of a child’s life. Increasingly, quality of life (QOL) measures are used to capture holistic wellbeing of children with CP. However most validated QOL measures for children are based on adult perspective only, with limited focus on child perspective. Conceptual differences between children’s and adults’ definitions of QOL may reflect different underlying QOL models which contribute to measurement score divergence. This qualitative study investigated the conceptual meaning of QOL for children with CP, comparing child and parent perspectives. Eighteen families completed 8 child interviews and 18 parent interviews. Children (11 boys, 7 girls) represented the spectrum of motor functioning, with comorbidities including epilepsy, intellectual disability, and communication impairments. Child and parent interviews were analysed separately using constructivist grounded theory methods and then findings were integrated to examine similarities and differences.ResultsAll participants sought child inclusion in social activities, education, and recreation, requiring negotiation, adaptations, and advocacy. Five conceptual categories emerged from child interviews: socialising, play, negotiating limitations, self-identity, and developing agency. This reflected an individual model of QOL supporting child development goals. Parent interview findings revealed concepts related to child-specific QOL (day-to-day functioning and enabling child goals), as well as parent and family functioning concepts aligned to models of “family QOL”, embracing impacts of family relationships and the interdependence of QOL among family members.ConclusionsThis study identified similarities and differences in child and parent perceptions of QOL for the child with CP. Children provided insights into the importance of play and peer support, and their developing self-identity and sense of agency. Self-directed free play, especially, was identified by children but not parents as a central everyday activity promoting wellbeing and social inclusion. Parents discussed family functioning and aspects outside of child sight, such as managing time and financial resources. Relying on parents’ perspective alone to model child QOL misses valuable information that children contribute. Equally, child report alone misses parent experiences that directly influence child QOL. There is value in incorporating family QOL into parent reports while developing a conceptually separate child self-report QOL instrument.

The Impacts of Religious Rational-Emotive Behavior Therapy (RREBT) on Mental Health: A Comparative Review

Mental health affects how individuals deal with stress, communicate with others, and make wise decisions. Rational-emotive behavior therapy (REBT) principles can be integrated with patients’ religious beliefs and faith to address some mental health issues. The primary goal of this article is to assess the impacts of various forms of religious REBT (RREBT) on patients’ mental health. This research adopted a comparative, scoping literature review method. The findings show that various forms of RREBT exist, but the most frequently used approach is Christian REBT (CREBT), followed by Islamic REBT (IREBT) and Jewish REBT (JREBT). Three studies examined IREBT and reported its significant positive effects in treating posttraumatic stress disorder, negative self-esteem, and family distress and conflict. Only one study focused on JREBT, demonstrating that it effectively reduced family distress symptoms and marital conflict. The rest of the studies focused on CREBT, and their findings ranged from its significant positive effects in managing emotional distress, panic attacks, avoidance, deficiencies in social communication, binge eating, aggression, depressive symptoms, poor work-life balance, poor quality of family life to symptoms of family distress and marital conflict. These three forms of RREBT have been applied in one study to manage family distress symptoms and marital conflict among couples. Based on evidence from five studies, depression is the most commonly treated mental health disorder by RREBT counselors. Across all studies reviewed, changes in irrational cognitions, irrational beliefs, and automatic negative thoughts were the most common change processes. RREBT clinicians employing any of these approaches in their clinical practice and research are urged to highlight the therapeutic techniques that worked for their clients, how much time it took them to achieve the desired change as well as the mechanisms of change so that future therapists can be able to adapt their procedures for their clients.

Livelihood support for caregivers of children with developmental disabilities: findings from a scoping review and stakeholder survey

Purpose Poverty amongst families with a child with disability adversely impacts child and family quality of life. We aimed to identify existing approaches to livelihood support for caregivers of children with developmental disabilities in low- and middle-income countries. Methods This mixed-method study incorporated a scoping literature review and online stakeholder survey. We utilised the World Health Organization community-based rehabilitation (CBR) matrix as a guiding framework for knowledge synthesis and descriptively analysed the included articles and survey responses. Results We included 11 peer-reviewed publications, 6 grey literature articles, and 49 survey responses from stakeholders working in 22 countries. Identified programmes reported direct and indirect strategies for livelihood support targeting multiple elements of the CBR matrix; particularly skills development, access to social protection measures, and self-employment; frequently in collaboration with specialist partners, and as one component of a wider intervention. Self-help groups were also common. No publications examined effectiveness of livelihood support approaches in mitigating poverty, with most describing observational studies at small scale. Conclusion Whilst stakeholders describe a variety of direct and indirect approaches to livelihood support for caregivers of children with disabilities, there is a lack of published literature on content, process, and impact to inform future programme development and delivery.

The Remaining Challenge to Diagnose and Manage Cow's Milk Allergy: An Opinion Paper to Daily Clinical Practice.

Guidelines and recommendations for the diagnosis and management of cow's milk allergy (CMA) in childhood are based on scientific review of the available evidence. While this approach is the most rigorous, guidelines may not fully address all scenarios encountered by clinicians. Many symptoms of CMA overlap with other common childhood illnesses and are subjectively reported by the caregivers of the infant, as is the interpretation of the dietary interventions. Additionally, many healthcare professionals and caregivers do not follow the recommendations to perform an oral food challenge or reintroduction of cow's milk after a diagnostic elimination diet because (1) the infant is doing well and (2) the carer's fear of symptoms relapsing with this procedure. As a result, CMA in infants may be either under-diagnosed leading to reduced quality of life for families or over-diagnosed, resulting in unnecessary long-term elimination diets and increasing the risk for nutritional deficiencies. This paper discusses some of these controversial topics, focusing on misdiagnosis and mismanagement in clinical practice. The lack of objective diagnostic criteria can hamper the diagnosis and management of CMA in daily practice.

Knowledge and belongingness: experiences of a programme for parents of children with autism

ABSTRACT Background Whilst lack of social support has been associated with stress for parents of children with autism, group programmes for parents which bring together those with similar experiences and provide learning and resources can offer a form of social support. Although studies of such programmes suggest positive outcomes, including in terms of children’s adaptive behaviour, research examining parental perspectives on interventions that set out specifically to provide support to reduce stress in parents of children with autism is still scarce. Purpose Set in a Swedish context, the aim was to investigate whether a group education programme for parents of children with autism could be viewed as a site of informal social support and considered fertile ground for procuring social capital. Method Participants were parents of children who had been given an autism diagnosis at around three years of age. They had all taken part in a group education programme designed to facilitate experience-sharing in meetings between parents. The parents were interviewed about their experiences and perceptions of its influence on their everyday lives. Data were analysed qualitatively, using a Community of Practice lens. Findings The in-depth analysis indicated that, according to participants, the programme had helped alleviate feelings of isolation and improve parenting confidence. The findings speak to the importance of personal investment for knowledge acquisition and implementation, demonstrating the connections between the acquisition of social capital and membership of a Community of Practice. Conclusion Building on previous research emphasising the role of social support for the quality of life for parents of children with autism, the study highlights how a parental group education programme can represent a valuable social setting which is conducive for learning and resource procurement. Knowledge and belongingness in a social community – which enables access to, and sharing of, resources – are both of crucial relevance to outcomes and quality of life for families.

Evaluating the Impact of PWS Smart-Start: A Behavior Analytic Caregiver Training Program for Prader-Willi Syndrome

PWS Smart-Start is a behavioral caregiver training program developed specifically for caregivers of children with Prader-Willi syndrome (PWS) aged 3 to 14. The purpose of the current study was to evaluate the acceptability and preliminary efficacy of the program. Thirty-four caregivers of children with PWS received the PWS Smart-Start training using online live video-coaching across a 10-week period. The impact of the training on a variety of variables including caregiver and child behavior, caregiver stress and burnout, and family functioning were evaluated using a quasi-experimental pretest posttest design. Results indicated statistically significant decreases across child behavior challenges and parental stress and burnout following the training. Statistically significant improvements were also seen in parenting practices, the quality of the parent–child relationship, and family quality of life. Results of social validity measures indicated caregiver satisfaction with the program. These preliminary results indicate that the PWS Smart-Start program has the potential to not only support children with PWS through behavioral challenges but also reduce caregiver stress and burnout and improve a variety of aspects of family life. Future research is needed to replicate and further validate these results and to extend the exploration of other behavior analytic interventions for this population.

Measure what matters: considerations for outcome measurement of care coordination for children with neurodevelopmental disabilities and medical complexity.

Care Coordination (CC) is a significant intervention to enhance family's capacity in caring for children with neurodevelopmental disability and medical complexity (NDD-MC). CC assists with integration of medical and behavioral care and services, partnerships with medical and community-based supports, and access to medical, behavioral, and educational supports and services. Although there is some consensus on the principles that characterize optimal CC for children with NDD-MC, challenges remain in measuring and quantifying the impacts of CC related to these principles. Two key challenges include: (1) identification of measures that capture CC impacts from the medical system, care provider, and family perspectives; and (2) recognition of the important community context outside of a hospital or clinical setting. This study used a multilevel model variant of the triangulation mixed methods design to assess the impact of a CC project implemented in Alberta, Canada, on family quality of life, resource use, and care integration at the broader environmental and household levels. At the broader environmental level, we used linked administrative data. At the household level we used quantitative pre-post survey datasets, and aggregate findings from qualitative interviews to measure group-level impacts and an embedded multiple-case design to draw comparisons, capture the nuances of children with NDD-MC and their families, and expand on factors driving the high variability in outcome measures. Three theoretical propositions formed the basis of the analytical strategy for our case study evidence to explore factors affecting the high variability in outcome measures. This study expanded on the factors used to measure the outcomes of CC and adds to our understanding of how CC as an intervention impacts resource use, quality of life, and care integration of children with NDD-MC and their families. Given the heterogeneous nature of this population, evaluation studies that account for the variable and multi-level impacts of CC interventions are critical to inform practice, implementation, and policy of CC for children with NDD-MC.

Quality of life and family functioning soon after paediatric brain tumour diagnosis: A cross-sectional observational study

PurposeThere is scant scholarly exploration of quality of life in families with a child who has a brain tumour early after diagnosis, despite this being a pivotal point in their illness trajectory. We aimed to describe quality of life in children and their parents, and family functioning, within six months of diagnosis; and to examine if this differed for various subpopulations. MethodThis is a cross-sectional analysis of baseline data of an ongoing longitudinal survey. Parents/carers of a child who had a diagnosis of a malignant or non-malignant brain tumour and were receiving care at the Queensland Children's Hospital were invited to complete an electronic survey. Univariate analyses were conducted with potential covariates and each dependent variable (child quality of life, caregiver quality of life, family functioning). Potential relationships between the outcome variables were explored through Pearson's correlation coefficient. ResultsSeventy-nine diverse families completed the survey between August 2020 and September 2022. Caregiver quality of life did not differ by the child's tumour risk grade. It was lowest for those with a child who had undergone chemotherapy and/or radiation compared to surgery only, and for those with a child who had been diagnosed 6 months prior to survey completion compared to more recent diagnoses. A third of families reported problematic family functioning. Lower levels of problematic family functioning were associated with higher caregiver quality of life (r = -.49, p < .001). ConclusionsOur findings suggest caregivers need greater psychosocial support early after diagnosis, and supports the need for family-centred care that fosters communication and cohesiveness.

Resilience and family quality of life in parents of children with autism spectrum disorders.

Resilience and quality of life (QOL) can involve a positive approach in group interventions for parents of children with autism spectrum disorders (ASD). This study aims to evaluate resilience and family QOL at the start of a psychoeducational group. Cross-sectional assessment of resilience and family QOL used the Family Quality of Life Scale (ECVF) and 14-item Resilience Scale (RS-14). The study group showed high levels of resilience. Parents considered the resources/support domain crucial, although satisfaction in this area was comparatively lower. Concerns about low satisfaction with available resources and support were notable. Gender differences were observed but not statistically significant. The study's findings support prior research on parental resilience in families of children with ASD. The literature on the QOL for these families presents mixed findings. The importance of parental involvement in service planning is highlighted. This study emphasizes the importance of resilience in parents of children with ASD, suggesting it as a potential therapeutic target. The findings underscore the need to address the perceived low quality of available resources and support. Further investigation is needed.

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

AimThis 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 methodThe 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). ResultsMothers, 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). ConclusionThe 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 implicationsIt 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.

ANALISIS DAMPAK PERNIKAHAN DINI TERHADAP KEHIDUPAN KELUARGA DI DESA SUMBERKEDAWUNG KECAMATAN LECES KOTA PROBOLINGGO

Marriage at an early age has become a serious social concern in various societies. The purpose of this research is to evaluate the impact of early marriage on the dynamics of family life in that village. The research methodology involves surveys and structured interviews with several couples who got married at a young age. The research findings indicate that early marriage has complex effects on family life. While it can contribute to the formation of a strong family, early marriage also brings negative impacts such as family economic limitations, emotional immaturity of the partners, and higher health risks for both the mother and child. Factors such as education, employment, and social support play a key role in mitigating the negative impacts of early marriage. This study also proposes policy recommendations and intervention programs to enhance community understanding of the risks associated with early marriage and improve the quality of family life.&#x0D; Keyword : Early Marriage; Impacts of Early Marriage; Dynamics of Family Life

The cross-cultural validation of the Beach Center Family Quality of Life Scale among persons affected by leprosy or podoconiosis in Northwest Ethiopia.

The Beach Center Family Quality of Life Scale has been developed and validated in different languages in different countries. However, this scale has not been validated in the Ethiopian Amharic language context. Therefore, this study aimed to investigate the cross-cultural validity of the Beach Center Family Quality of Life Scale, among Ethiopian families of persons affected by leprosy and podoconiosis. We explored the semantic equivalence, internal consistency, reproducibility, floor and ceiling effects, and interpretability of the Beach Center Family Quality of Life Scale in Amharic. A cross-sectional study was conducted after the translation and back-translation of the instrument. A total of 302 adult persons affected by leprosy or podoconiosis was asked about their level of satisfaction with their family life, using the Beach Center Family Quality of Life Scale. In addition, 50 participants were re-interviewed two weeks after the initial assessment to test the reproducibility of the scale. Participants were recruited in the East Gojjam zone of Northwest Ethiopia. The findings of this study showed that the Beach Center Family Quality of Life Scale had high internal consistency (Cronbach's alpha of 0.913) and reproducibility (intra-class correlation coefficient of 0.857). The standard error of measurement was 3.01, which is 2.4% of the total score range. The smallest detectable change was 8.34. Confirmatory factor analysis showed adequate factor loadings and model fit indices like the original scale. The composite reliability and average variance extracted from the scale were acceptable. No floor and ceiling effects were found. Our findings indicate that the Amharic version of the Beach Center Family Quality of Life Scale has adequate cultural validity to assess the family quality of life in Ethiopian families of persons affected by leprosy and podoconiosis.

The role of microboards in enhancing quality of life for children with intellectual disability and their families

AbstractDisability support systems have not consistently used family‐centered practices when supporting families of children with disability. Families have experienced structural and interpersonal barriers that have negatively impacted not only their child's quality of life, but also family quality of life (FQOL). The eight domains of QOL as defined by the International Association for the Scientific Study of Intellectual Disabilities [IASSID] are reflected in a family‐centered model of support developed for children and young people by Microboards Australia. The Microboards for Children [MB4C] model reflects best family centered practice based on principles that integrate well with recognised FQOL domains such as family relationships, support from other people and from disability‐related services, and leisure and enjoyment of life. The MB4C model aims to enhance families’ knowledge, skills, confidence, and sense of wellbeing to support them develop a vision for an active, socially connected, and happy future with their child. The model consists of a structured network of formal and informal support to enhance not only their child or young person's personal relationships, social networks, and community inclusion but also to enable parents and siblings to access education, employment and to enjoy life in their community – all indicators of FQOL. In this paper we explore how these features of MB4C policies and practice align with family‐centered practice principles and with FQOL domains. We argue that the MB4C model provides an example of how FQOL may be enhanced by a holistic family‐centered disability service system that works in partnership with families with disability.

Formal and informal support provided to foster families

The foster family is an important part of social care, created when the biological parents are unable to provide care to the child and is of a temporary nature. The article presents the state of research on formal and informal support provided to foster families as well as the results of own research. The aim of the research was to determine how foster families assess the formal and informal support they experience. These two types of support were assessed both objectively and subjectively. The research is part of a wider project aimed at determining the objective and subjective quality of life of foster families. The study was conducted on a sample of 27 foster families (average age of mothers M=53.33; fathers M=55.48; SD=11.41). The Family Quality of Life Survey – general version, FQoLS-2006 by Ivan Brown et al. from the Centre for Health Promotion in Toronto in the Polish adaptation by Ewa Zasępa, Ewa Wapiennik, Agnieszka Wołowicz (2010) and a demographic survey were used. The questionnaire measures the objective and subjective quality of family life in nine areas: family health, financial situation, family relationships, support from other people, support from specialist services and social assistance, value system, professional career and career preparation, leisure and recreation, social interactions. The article presents the results in the following areas: support from other people and support from specialist services. Results and conclusions: support from other people (informal support) and support from specialist services (formal support) were assessed poorly. Foster families assess the received emotional support better than the practical one. In addition, it has been shown that foster families experience many difficulties and, due to the specific nature of the functioning of these families, social support is particularly important for them.

The Level of Psychological Capital among Women Affiliated with Political Parties and its Relationship to the Quality of Family Life In Jordan

The study aimed to identify the level of psychological capital among women affiliated with political parties and its relationship to the quality of family life in Jordan. To achieve the objectives of the study, a random sample of (429) women affiliated with political parties was chosen (an accessible sample) and the descriptive analytical correlational method was applied. In addition, two measurements were developed: The Psychological Capital Scale and Family Life Quality Scale, and their psychometric properties were verified for validity and reliability. The results indicated a high level of psychological capital and a high level of family life quality for women affiliated with political parties, whether in the total degree or dimensions and in most paragraphs. The results also indicated that there is a positive, statistically significant correlation between psychological capital and the quality of family life. The results also showed that there were no statistically significant differences between the arithmetic averages in psychological capital and family life quality due to the variables of social status, nature of work and family life quality, while it was found that there are differences among the female members of the political parties in the psychological capital and the quality of family life according to the years of joining the party and in favor of the affiliated for parties from 4 years to less than 7 years. Based on the results of the study, a number of recommendations were presented, including encouraging women to join political parties as this is linked to success in their psychological aspects.

Quality of life in families under quarantine: a cross-sectional study in seven countries during the first outbreak of COVID-19.

The COVID-19 pandemic has disrupted human well-being worldwide in unforeseen ways. In early 2020, the spread of the virus left its mark on every affected country, impacting mental health by limiting daily activities and causing fatalities amidst public health strategies to mitigate its impact. The influence of COVID-19 on the quality of life (QoL) may vary between countries, underscoring the need to examine its effects on individuals and families during the mandatory home quarantine. We aimed to assess the QoL of individuals and families during home isolation by COVID-19 lockdown. A cross-sectional study was conducted from February to May 2020. We included adult partners (≥18 years) of families from Brazil, Colombia, Spain, Japan, Peru, Russia, and Venezuela. Using the 26-item World Health Organization Quality of Life Brief (WHOQOL-BREF) questionnaire we assess the impact of COVID-19 on their partner/family member's QoL. The survey was completed by 466 participants (mean age = 38.59 ± 13.75 years; females = 298) and 76% worked mostly as health professionals from South America (69.2%), Europe (18.4%), and Asia (12.4%). The WHOQOL-BREF mean score from 38.38 ± 11.55 (range = 22.8-43.4). The average quality of life in South America (41.9 ± 1.2) was significantly higher than that of European countries (30.9 ± 11.5) (p = 0.002). The social relations dimension was the only one with values close to 100 (mean = 83.3) in 6/7 evaluated countries, where only Spain had a low score (41 ± 33.12). Women had a slightly lower quality of life than men, but it was not significant (40.2 ± 8.8 vs. 41.5 ± 9.9, p = 0.354), while we found differences in the overall QoL between young and older, and by employment type (p < 0.05). According to family structure, we found differences on QoL between nuclear and siblings' families (p = 0.024). Families from seven countries of three continents reported poor QoL during the first outbreak of COVID-19. The pandemic scenario has dramatically weakened the QoL in 3/4 dimensions, where social relationships have remained high. It is important to fully address the impact of this reduced QoL on families after several waves of infection and to provide comprehensive support in the post-COVID future.

UNICORNS: Uveitis in childhood prospective national cohort study protocol.

Background: Childhood uveitis is a rare inflammatory eye disease which is typically chronic, relapsing-remitting in nature, with an uncertain aetiology (idiopathic). Visual loss occurs due to structural damage caused by uncontrolled inflammation. Understanding of the determinants of long term outcome is lacking, including the predictors of therapeutic response or how to define disease control. Aims: To describe disease natural history and outcomes amongst a nationally representative group of children with non-infectious uveitis, describe the impact of disease course on quality of life for both child and family, and identify determinants of adverse visual, structural and developmental outcomes. Methods: UNICORNS is a prospective longitudinal multicentre cohort study of children newly diagnosed with uveitis about whom a core minimum clinical dataset will be collected systematically. Participants and their families will also complete patient-reported outcome measures annually from recruitment. The association of patient (child- and treatment- dependent) characteristics with outcome will be investigated using logistic and ordinal regression models which incorporate adjustment for within-child correspondence between eyes for those with bilateral disease and repeated outcomes measurement. Discussion: Through this population based, prospective longitudinal study of childhood uveitis, we will describe the characteristics of childhood onset disease. Early (1-2 years following diagnosis) outcomes will be described in the first instance, and through the creation of a national inception cohort, longer term studies will be enabled of outcome for affected children and families.

Quality of life of Brazilian families who have children with Fragile X syndrome: a descriptive study.

This study aimed to assess the Family Quality of Life (FQoL) of Brazilian families with male children with Fragile X syndrome (FXS). Data from 53 families were collected using forms that included sociodemographic and clinical information, as well as the Beach Center Family Quality of Life Scale, a 5-point Likert scale ranging from "very dissatisfied" (1) to "very satisfied" (5). The mean overall FQoL score was 3.56 ± 0.79; the emotional well-being domain had the lowest score (2.98 ± 1.11) and showed significant differences between the other domains: family interaction (3.81 ± 0.89; p < 0.001), parenting (3.66 ± 0.89; p < 0.001), physical and material well-being (3.48 ± 0.83; p < 0.001), and disability-related support (3.75 ± 0.98; p < 0.001). Physical and material well-being was the second-lowest domain and was statistically different from the family interaction domain (p = 0.013). Lower FQoL satisfaction ratings were found in families with children who had difficulty getting along with people of the same age (t(51) = -3.193, p = 0.002; d = 1.019) and difficulty in living together on a day-to-day basis (t(51) = -3.060, p = 0.004; d = 0.888). These results highlight the importance of proper emotional support for the family, emphasizing the need to provide assistance not only for individuals with FXS but also for other family members. Besides, we advocate for the adoption of public policies that provide financial assistance to families and the implementation of the Brazilian Policy of Comprehensive Care for People with Rare Diseases.