Family Quality Research Articles

What Factors Predict Adaptive Functioning in Preschool Children with Autism Spectrum Disorder? A Longitudinal Study.

Adaptive functioning constitutes a fundamental aspect of the phenotype associated with autism spectrum disorder (ASD) in preschool-aged children, exerting a significant influence on both the child and the family's overall quality of life. The aim of this study was to investigate the predictors of the adaptive functioning domains in preschool-age children with ASD at two time points, providing a snapshot of this fundamental developmental step. Methods: Ninety-five children with ASD (M = 3.89, SD = 1.13) were included in the study and longitudinal data (the mean length of the longitudinal data collection was 1 year) on ASD features such as social communication and social interaction, repetitive and restricted behavior, cognitive level, and adaptive functioning were collected. We considered autistic features, cognitive level, and sociodemographic factors as possible predictors of the different adaptive functioning domains one year later. Results: Data obtained showed a worsening of the ASD features and adaptive functioning after one year. Furthermore, the severity of repetitive and restricted behavior predicted adaptive functioning, especially in the social and practical domains of the child, one year later. This prediction was observed alongside the child's cognitive level. Conclusions: The study identifies some potential predictive factors of specific adaptive functioning domains in preschoolers with ASD. Considering how critical adaptive functioning is for the well-being of both the child and their family, it becomes imperative to design early-stage interventions focused on nurturing adaptive skills in children with ASD.

Analysis of caregiver perspectives on patients with mucopolysaccharidosis II treated with pabinafusp alfa: results of qualitative interviews in Japan

BackgroundMucopolysaccharidosis type II (MPS II), or Hunter syndrome, is a rare X-linked metabolic disorder predominantly affecting males. Pabinafusp alfa, an iduronate-2-sulfatase enzyme designed to cross the blood-brain barrier, was approved in Japan in 2021 as the first enzyme replacement therapy targeting both the neuropathic and somatic signs and symptoms of MPS II. This study reports caregivers’ experiences of MPS II patients receiving pabinafusp alfa through qualitative interviews.MethodsSemi-structured, qualitative interviews were conducted with caregivers at seven clinical sites in Japan using a semi-structured moderation guide (Voice of the Caregiver guide). Thematic analysis was applied to the interview transcripts to identify symptoms and health-related quality of life impacts at baseline, changes during treatment, and overall treatment experience.ResultsSeven caregivers from 16 trial sites participated, representing seven children aged 8–18 years who had received pabinafusp alfa for 3.3–3.5 years at the time of the interviews. Data suggest a general trend toward improvement in multiple aspects, although not all caregivers observed discernible changes. Reported cognitive improvements included language skills, concentration, self-control, eye contact, mental clarity, concept understanding, following instructions, and expressing personal needs. Further changes were reported that included musculoskeletal improvements and such somatic changes as motor function, mobility, organ involvement, joint mobility, sleep patterns, and fatigue. Four caregivers reported improvements in family quality of life, five expressed treatment satisfaction, and all seven indicated a strong willingness to continue treatment of their children with pabinafusp alfa.ConclusionCaregivers’ perspectives in this study demonstrate treatment satisfaction and improvement in various aspects of quality of life following therapy with pabinafusp alfa. These findings enhance understanding of pabinafusp alfa’s potential benefits in treating MPS II and contribute to defining MPS II-specific outcome measures for future clinical trials.

Fear of Progression and Resilience as Mediators of the Association between Family Function and Quality of Life among Patients with Cervical Cancer

Objective. To explore the impact of family function on quality of life (QoL) and investigate the mediating effects of fear of progression (FoP) and resilience in the pathway from family function to QoL among patients with cervical cancer (CC). Methods. A multicenter cross-sectional survey with convenience sampling was conducted from December 2021 to December 2022. A total of 252 patients with cervical cancer were recruited from five tertiary hospitals in Jiangsu Province, China. Patients completed the 5-item self-administered Family Adaptation, Partnership, Growth, Affection, Resolve (APGAR) scale, the Fear of Progress Questionnaire short-form, the 14-item Resilience Scale, and the 12-item Short-Form Health Survey. Structural equation modeling (SEM) was performed to explore the mediation effect of FoP and resilience between family function and QoL for CC patients. Bootstrapping procedures were used to verify the significance of the indirect effects of the mediating variables. Results. The mean score of family function was 7.97 ± 2.41 (scale range: 0–10), FoP was 29.58 ± 10.14 (scale range: 12–60), and resilience was 69.37 ± 14.36 (scale range: 14–98). The mean score for physical component summary (PCS) was 41.87 ± 10.00 (scale range: 0–100), and the mean score for mental component summary (MCS) was 46.68 ± 11.78 (scale range: 0–100). Family function positively predicted patients’ resilience and negatively predicted their FoP, while FoP negatively predicted CC patients’ resilience and QoL, and resilience positively predicted patients’ QoL. Patients’ family function was associated with their QoL directly and indirectly through the mediation of FoP and resilience, and the model explained 7% of the variation in FoP, 24% of the variation in resilience, and 42% of the variation in QoL. Conclusions. Chinese CC patients expressed poor QoL. FoP and resilience could mediate the association between patients’ family function and QoL. Healthcare professionals could improve QoL of patients with cervical cancer through reducing FoP and enhancing resilience.

Improving potential energy surfaces using measured Feshbach resonance states.

The structure and dynamics of a molecular system is governed by its potential energy surface (PES), representing the total energy as a function of the nuclear coordinates. Obtaining accurate potential energy surfaces is limited by the exponential scaling of Hilbert space, restricting quantitative predictions of experimental observables from first principles to small molecules with just a few electrons. Here, we present an explicitly physics-informed approach for improving and assessing the quality of families of PESs by modifying them through linear coordinate transformations based on experimental data. We demonstrate this "morphing" of the PES for the He - H2+ complex using recent comprehensive Feshbach resonance (FR) measurements for reference PESs at three different levels of quantum chemistry. In all cases, the positions and intensities of peaks in the energy distributions are improved. We find these observables to be mainly sensitive to the long-range part of the PES.

Family Social Capital’s Impact on the Family Stress Model: A Cross-Sectional Spanish Study During the COVID-19 Pandemic

This article has a dual purpose. First, it corroborates the empirical evidence of the Family Stress Model (FSM) to the Spanish population during the COVID-19 pandemic. Second, this article contributes to extending the FSM by investigating the impact of Family Social Capital (FSC) on the well-established FSM. In other words, it assesses if families with high FSC, when affected by economic hardship and distress, avoid the deterioration of their inner relationships. We conducted empirical analyses through data collected from N = 583 (mean age = 49.5 years) from Spanish families with diverse working situations using the Structural Equation Modelling (SEM) technique to test the theorized model. Our results suggest the validity of the FSM in the context of the economic crisis due to COVID-19 in Spain and then, by complementing the FSM with FSC, demonstrate that FSC can be considered as an accommodating protective factor for sustaining couple and children relationship quality for families facing economic difficulties. Also, in this article, the positive effects of FSC are studied within families in an original way, unlike past studies, which mainly used the FSC to relate civic social capital and showed its beneficial effects in extra-familial areas.

Quality of life of families and siblings of children and adolescents with meningomyelocele.

Children with meningomyelocele may require continuous care. Consequently, there is a risk for caregiver burden and impact on family quality of life (QoL), including siblings' QoL. Some studies analysed caregivers' burden and family QoL separately. However, none of these studies evaluated siblings' QoL and the associations between these three dimensions. This study investigated the associations between caregivers' burden, family QoL and siblings' QoL in Brazilian families of children with meningomyelocele and its correlations with sociodemographic, functional and clinical variables. Siblings' QoL was specifically assessed using as a parameter the QoL of typically developed Brazilian children. One hundred and fifty families, 150 caregivers and 68 siblings completed the Family Quality of Life Scale, Burden Interview, KIDSCREEN-27 Child and Adolescent Version and Parents Version questionnaires. Most families and caregivers reported a high family QoL and a low caregiver burden. Family QoL was significantly lower as caregivers' burden increased. Caregiver's burden was significantly lower with increasing family QoL levels. Self-reported siblings' QoL was significantly worse than that of typically developed peers. There were no significant differences between self and parent-reported siblings' QoL. Self-reported siblings' QoL was significantly worse as their age increased and better with increasing family QoL levels. Parent-reported siblings' QoL was significantly worse with increasing levels of caregiver's burden and significantly better as family QoL increased. There were no significant associations with functional and clinical variables. Despite the cross-sectional nature of the available data precludes any statements of causality, our results reinforce the relevance of knowing the factors that influence the QoL of families and siblings of children and adolescents with meningomyelocele and the relevance of actions aimed at reducing caregivers' burden, improving family QoL and meeting siblings' individual needs. Future multicenter studies may validate the generalizability of our findings.

The Influence of Marital Quality and Coping Strategy on Parenting Environment Quality in Long Distance Marriage Families

Long distance marriage presents challenges and changes to family life both in terms of the quality of the marriage and the quality of parenting. This research aims to analyze the influence of marital quality and coping strategies on the quality of parenting in long distance marriage families. The approach in this research is quantitative with a cross-sectional study design. This study involved families undergoing long distance marriages with the criteria of a minimum separation of one month, having preschool aged children (3-6 years), and domiciled in Bogor Regency or City. The respondents in this study were 30 mothers. Sampling in this study used non-probability sampling with snowball sampling technique. The results study shows that the quality of marriage and the quality of the parenting environment are moderate, while coping strategies are classified as low. The results of the regression test show that the length of separation has a significant negative effect, while problem-focused coping and the child's gender have a significant positive effect on the quality of the parenting environment. There was no relationship or influence of marital quality on the quality of the parenting environment in this study. This research can be a basis for developing special support programs for long distance marriage couples as well as further knowledge in the context of long distance marriage.

Family Resilience in Urban Extreme Poverty

The impact of poverty causes pressure that weakens family resilience. Although measurements of family resilience are available, there are not many up-to-date measures for urban poor families in Indonesia. The purpose of this study is to describe the profile of family resilience and the conditions of vulnerability of extreme urban poor families. The research subjects were the heads of families (N=416) spread across five sub-districts in the city of Bandung, with the highest number of poverties, where most of the subjects worked as daily laborers. The measurement uses a scale of family resilience through four dimensions: the quality of physical, economic, psychological, social, and family structure as demographic resilience. Data were analyzed with descriptive and correlational statistics using JASP 0.15. The results show that poor families have a level of fulfillment of family resilience qualities of 16.5 percent (12.62 percent on the dimensions of physical endurance, 12.46 percent on the economic dimension, 17.33 percent on the psychological dimension and 19.95 percent on the social dimension). Several dimensions have a significant positive relationship, with the highest level on the relationship between dimensions of physical and economic resilience (r=.768). Six conditions of vulnerability were found, namely related to job instability and income that is less than needed, environmental cleanliness and insufficient food consumption, misunderstanding of family goals, and lack of gratitude for conditions. The research findings show two sub-dimensions in each dimension of social resilience and psychological resilience. Suggestions and implications are directed at recommendations for urban extreme poverty alleviation programs and optimizing family quality programs, especially aspects of independence.

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.

Overcoming Patient Pain Together: Breast Cancer Patients and Caregivers’ Pretreatment Psychosocial Distress Linked to Patients’ Pain Interference During the First Year of Treatment

Breast cancer patients experience treatment-related pain from surgery, radiation, chemotherapy, and long-term hormonal treatment, which can lead to poorer outcomes. Patient and family caregivers' psychosocial distress exacerbates patient pain interference, but this has not been directly examined among breast cancer patients in dyadic models longitudinally. Guided by a biopsychosocial framework, the Biobehavioral Family Model, we explore how multiple reports of patient pain interference across the first year of treatment are linked to the patient (N = 55) and caregiver (N = 55) pretreatment psychosocial distress (eg, depression, anxiety, marital satisfaction, family relationship quality). Specifically, we find that breast cancer patients’ pain interference increases and then decreases over the first year of treatment. Additionally, caregivers' pretreatment anxiety was associated with increased patient pain interference over time (B = .19, SE = .07, P = .008), while patients’ pretreatment psychosocial distress was not associated with a change in their pain interference. Yet, looking at clinically specific times during the first year of treatment, we find that caregiver-reported higher marital satisfaction is associated with lower patient-reported pain interference later in treatment (6 months: B = −.58, SE = .24, P = .017; 12 months: B = −.82, SE = .23, P < .001). We conclude that, per the Biobehavioral Family Model, pretreatment patient and caregiver psychosocial distress is linked to patient pain interference during the first year of breast cancer treatment. Thus, caregivers’ psychosocial distress (ie, anxiety and marital satisfaction) may be a particularly important target in future dyadic behavioral intervention strategies to reduce breast cancer patient pain. PerspectiveThis article presents the link between breast cancer patients and family caregiver pretreatment psychosocial distress (anxiety, depression, marital satisfaction, and family quality) on patient pain interference during 1 year of breast cancer treatment. Findings suggest that caregiver anxiety and marital satisfaction may be important targets for future dyadic behavioral pain interventions.

Why Do Hungarian Health Workers Migrate? A Micro-Level Analysis

The sustainability of healthcare systems is challenged by the international migration of health workers in many countries. Like other Central and Eastern European (CEE) countries, a great number of health professionals from Hungary have emigrated recently, increasing the shortage of health workers in the country. The aim of this study is to explore the migration attitudes of Hungarian health workers, applying a micro-level approach of push–pull factors. For this purpose, semi-structured interviews have been conducted with practicing and inactive Hungarian health professionals living in Hungary and abroad. The interviews were subjected to a thematic analysis, and the following groups of factors were revealed and discussed: wealth and income, workplace, human capital, quality of life, family, personal network, and personality. In addition, geography and life stage (life course) as two overarching, integrative categories are also discussed. The results point to the role of income, work environment, and family in migration decisions. As a new factor, the importance of geographical characteristics (local context, distance) is also explored, which has received less attention in previous studies. A novelty of our study is the CEE post-socialist point of view, mirrored by the life-path elements of the interviews. Another novelty is the qualitative and micro-level approach, forming the basis of policy recommendations presented at the end of our study.

Do Naturalistic Developmental Behavioral Interventions improve family quality of life? A systematic review and meta-analysis.

Naturalistic Developmental Behavioral Interventions have been described as culturally responsive and family-friendly interventions, with research demonstrating improvements in children's development following the receipt of these interventions. Given the child-directed nature of Naturalistic Developmental Behavioral Interventions and the intervention's integration within families' daily routines, many studies have examined the impact of Naturalistic Developmental Behavioral Interventions on family and family member quality of life. We conducted a systematic review and meta-analysis to explore the relationship between Naturalistic Developmental Behavioral Interventions and family quality of life. Results suggest that the provision of a Naturalistic Developmental Behavioral Intervention neither improved nor worsened family or family member quality of life. For those involved in delivering Naturalistic Developmental Behavioral Intervention services, there is an immediate need to convey to families that children's improvements will likely not translate into improvements in family quality of life.

A cluster randomized controlled trial of a brief positive healthy eating intervention.

Excessive sugar intake poses a significant risk factor for non-communicable diseases. A positive healthy eating (PHE) intervention was developed to promote low-sugar dietary practices in families. The PHE intervention capitalized on positive psychological constructs to overcome barriers to health behavior change by helping families associate feelings of joy, gratitude, and savoring with healthy eating. In a cluster randomized controlled trial, 1983 participants from 1467 families were recruited in Hong Kong. PHE included a core and booster session. Data were collected at pre-intervention, post-intervention, and at 1-month and 3-month follow-up. Compared to the control, PHE showed greater increase in intention to change at post-intervention, engagement in low-sugar dietary practices individually and with family members at 3-month follow-up, and greater reduction in sugar-sweetened beverage intake at 1-month and 3-month follow-up. Intentions to change mediated PHE's effects on low-sugar dietary practices. Focus group interviews revealed the behavior-change process and family quality of life.

‘Family first’ – feasibility and pilot outcomes of a community intervention for families of children in recovery following brain injury

ABSTRACT Purpose Feasibility and pilot outcomes of a new community-based program for families of children with acquired brain injury (ABI) are presented. Interventions, delivered by home-visiting and teletherapy, were underpinned by problem-solving therapy, narrative meaning making, goal-directed interventions and community system psychoeducation. Methods Eighty-three families of children, who had sustained an ABI before 12 years of age, had an average of 13 sessions of the ‘Family First’ (FF) intervention. A mixed-methods prospective design was employed. Feasibility was evaluated through measures of accessibility and acceptability. Goal attainment scaling and pre-post changes on standardized questionnaires assessed changes in psychosocial adjustment and quality of life. Results Feasibility analyses suggested engagement and retention of often hard to reach families and children with high psychosocial needs. Qualitative analyses suggested themes related to the accessibility of a unique service (‘Nothing else like this out there’ and ‘Accessible and flexible’) which facilitated ‘Empowerment’ within a family context (‘A family affair’). Promising changes on standardized scales of behavior problems, competencies and child and family quality of life were discerned. Increased goal attainment scores were observed. Conclusion The FF program showed feasibility and promise. It impacted positively on the lives of children and families and improved capacity in supporting systems.

Parent-implemented interventions in Chinese families of children with autism spectrum disorder

This study aims to test the effects of the parent-implemented interventions (PIIs) on children with autism spectrum disorder (ASD) in China and to explore the effects of PIIs on the family quality of life of families of children with ASD in China. This study adopted a randomized controlled trial (RCT) design based on PIIs. Participants is divided into intervention group (N(parents) = 35, Age(M ± SD) = 35.69 ± 3.45; N(children) = 35, Age(M ± SD) = 5.49 ± 2.74) and control group (N(parents) = 35, Age(M ± SD) = 36.06 ± 4.28; N(children) = 35, Age(M ± SD) = 5.71 ± 3.25); parents in intervention group were trained with PIIs and required to implement family interventions for their children with ASD as they learned. This study will provide data to support the development and improvement of PIIs, and will also benefit the well-being and sustainability of children with ASD and their families. Compared to control group, the children in intervention group had a significant improvement in social communication ability (p < 0.05), and the families in intervention group had a significant enhancing in family quality of life (satisfaction) (p < 0.001). This study found that PIIs are effective in enhancing the social communication ability of children with ASD in China and the family quality of life (satisfaction) of their families. PIIs is a good and cost-effective complement to rehabilitation training in professional institutions, and have positive significance for the well-being and sustainability of children with ASD and their families.

A systematic review of the childbearing needs of single-child couples

BackgroundNowadays, the challenge of having single child is spreading in many countries. Only- child family is prevalent in 26% of families in Canada, 21% in the United States, 47.5% in Europe and 20% in Iran, which can lead to fertility below replacement level. Therefore, the current review was conducted to identify the needs of single-child couples.MethodsThe PRISMA checklist was used to prepare this systematic review report. English and Persian articles published between 2000 and April 2023 were searched in the English databases of ISI, PubMed, Cochrane library and Google Scholar search engine as well as Persian databases of SID and Magiran using keywords of only child, needs assessment and Reproductive behavior. All cross-sectional and correlational studies that addressed the needs of single-child couples were included in the study. The quality assessment of the articles was done by the STROBE checklist. Data extraction was done by two independent researchers using a self-structured checklist. To analyze the data, following tabulating the extracted data, the process of qualitative synthesis was done for systematic review taking into account ethical considerations.ResultsOut of 1,581 articles found, 17 articles were included in the systematic review. The needs of single-child couples were divided into four general areas included 1) Financial needs, 2) Cultural needs, 3) Educational needs, and 4) Supportive needs. The support needs included two kinds of social and family support.ConclusionSolving financial needs, creating a culture of positive values of childbearing and men's participation in household affairs, considering women's preferences in order to increase education and employment, childbearing training and counseling and creating social and family support in line with work and family harmony and quality care of children, as the most important needs of single-child couples, should be incorporated in the formulation of childbearing incentive programs.

Optimum Working Hours for College of Physicians and Surgeons Pakistan Fellowship Residents of General Medicine and General Surgery Disciplines.

To determine the optimum working hours per week for CPSP trainees of Fellowship Programmes in the disciplines of General Surgery and General Medicine. Mixed-methods, explanatory study. Place and Duration of the Study: Department of General Medicine and Department of General Surgery, Abbasi Shaheed Hospital, Karachi, from February to August 2023. The total number of subjects included were 33 residents, 7 supervisors (4 from General Medicine and 3 from Geneneral Surgery), and 3 hospital managers (from private sector), constituting a representative sample. Postgraduate trainees (PGTs) of third-and fourth-year FCPS training programme who showed willingness to participate were included as were all supervisors and hospital managers involved in the training programme. FCPS residents, who were not willing, on leave, and on rotation to other departments were excluded, as were PGTs enrolled in university and other programmes. For quantitative analysis, survey forms were distributed to the selected participants. For qualitative analysis, one-to-one interviews were conducted in-person and through video-link. Data collection procedure included distribution by hand and via email. SPSS was used for the data analysis. All residents recorded that duty stress, fatigue, and burnout resulted in poor quality of family and social life. All the stakeholders were convinced that acquisition of skills, learning outcomes, and patient safety with optimum care is compromised. The duration of emergency calls varied from 30 to 36 hours. There were 19 out of 33 residents (57.5%) who recommended 24 hours of rest after each emergency call. All the supervisors recommended six to eight daily duty hours and 66 to 90 weekly working hours. Four out of seven supervisors (57.1%) suggested emergency duty of 30 hours with post-call rest of 24 hours at every 3rd day. There is a need for a comprehensive approach that caters to the patient care as well as learning outcomes and residents' well-being when devising the duty schedules. Training hours, Fellowship programme, Fatigue, Learning outcomes.

THE EFFECT OF ECONOMIC PRESSURE AND QUALITY OF LIFE ON THE QUALITY OF FAMILY PARENTING WITH STUNTING CHILDREN

Currently, Indonesia is still facing a health problem, namely stunting. This condition can be caused by various factors, both directly and indirectly. Indirect causes of stunting that are currently of common concern include family conditions, both economically, socially, and the quality of parenting given to children. The purpose of this research is to analyze the effect of economic pressure and quality of life on the quality of family parenting with stunted children. This research involved 69 mothers with stunted children aged 2-5 years. The research location is in Bubulak Village, Bogor City, West Java. Sampling was done using non-probability sampling using purposive sampling technique. The correlation test shows that economic pressure has a significant correlation with the quality of life and quality of parenting. Quality of life is significantly related to the quality of parenting. The results of the regression test show that economic pressure does not affect the quality of parenting, while the child's age affects the quality of parenting, as does the quality of life which has a significant positive effect on the quality of parenting.

The Effects of Physical Activity in Individuals with Autism Spectrum Disorder: A Qualitative Study

This qualitative study aimed to investigate the effects of physical activity habits on the developmental progress and family dynamics of children with Autism Spectrum Disorder (ASD), as reported by family members. Through semi-structured interviews, the study explored the influence of physical activity on social skills, overall behaviours, and family functioning. The participants comprised 20 parents (11 females and 9 males) of children diagnosed with ASD, aged between 8 and 12 years, residing in Istanbul. The study revealed seven themes: "The Role of Physical Activities in Everyday Existence," "Regular Participation in Physical Activities," "The Frequency and Intensity of Physical Activities," "The Reaction of Children with ASD to Physical Activities," "The Effect of Physical Activities on General Behavior and Social Skills," "The Impact of Physical Activities on Family's Daily Life," and "The Effect of Physical Activities on Family Quality of Life." The findings emphasize the significance of physical activities for children with ASD, illustrating their potential to enhance social skills, emotional well-being, and overall quality of life. Additionally, these activities reduce family stress levels and enhance overall family functionality.In conclusion, based on these findings, physical activities play a vital role in the lives of children with ASD, potentially improving their social skills, emotional well-being, and overall quality of life. Moreover, engaging in such activities can alleviate family stress and enhance family functioning. These results underscore the importance of incorporating physical activities into the lives of children with ASD and provide valuable insights for designing effective intervention strategies to support their development and well-being.

Psychobehavioral factors and family functioning in mucopolysaccharidosis: preliminary studies.

Mucopolysaccharidoses (MPS) constitute a group of progressive and multisystemic inherited metabolic diseases that profoundly affect both the mental health of patients and the wellbeing of their families. This study aims to evaluate the impact of MPS on family functioning and related factors. Twenty-five patients with MPS, including types I (n = 4), II (n = 11), IIIB (n = 2), IVA (n = 3), and VI (n = 5), and their families participated in this study. The mean patient age was 13 years [standard deviation (SD): 7.7 years]. Behavioral and emotional problems were noted in 9.1% of all patients. While the type of MPS did not directly influence mental problems, the presence of neuronal involvement did (p = 0.006). Patients with MPS III exhibited difficulties primarily in emotional areas, conduct, hyperactivity, and peer problems. Importantly, both patients with MPS II and those with MPS III experienced a significant impact on communication [mean scores for communication domain: MPS II, 35.6 (SD: 24.3); MPS III, 35.0 (SD: 22.6)]; poorer communication was directly linked to worse adaptive behavior (p = 0.012), and worse adaptive behavior was associated with lower quality of life (p = 0.001). Quality of life and caregiver burden among family members did not significantly differ across MPS types; however, higher caregiver burden was negatively associated with quality of life (p = 0.002). Concerning family functioning, the most impacted domains included independence, intellectual/cultural orientation, activity/recreation, and expressiveness. Domain scores did not vary based on MPS type, treatment, or neurological involvement. Quality-of-life scores were positively associated with the cultural/intellectual domain score. The impacts of quality of life and family extend beyond clinical characteristics and MPS type, strongly influenced by patient cognition and communication, as well as type of family functioning, especially those with greater cultural/intellectual skills of their family members. A multidisciplinary approach addressing the broader needs of individuals with MPS becomes essential. Techniques aimed at improving communication, including prompt interventions such as speech therapy and augmentative and alternative communication strategies, can contribute to overall family functioning improvement.