Search Results (14)

Objectives: Adolescent idiopathic scoliosis (AIS) may negatively affect both the quality of life of adolescents and the quality of life of their families (FQOL). Therefore, the analysis of objective and subjective determinants of FQOL in families of children and adolescents with AIS undergoing long-term conservative treatment becomes important and will allow for a better understanding of factors that may have a significant impact on the prognosis and clinical treatment outcomes. Methods: The analysis covered a total of 200 families of children and adolescents aged 7–18 from the Podkarpackie region (Poland). The medical history chart and the original physical examination card, as well as the Family Adaptability and Cohesion Scales (FACES III) and the Family Quality of Life Scale (FQOL), were used in this study. Results: Families of adolescents without AIS demonstrated significantly higher levels of family cohesion and adaptability compared with families of adolescents with AIS (p < 0.001). The mean overall FQOL score was significantly lower in the AIS group (75.33 ± 9.18) than in the control group (86.97 ± 7.91; p < 0.001, r_rb = 0.58). Multivariate analysis indicated that family adaptability was an independent predictor of FQOL in the AIS group, with higher adaptability associated with lower overall FQOL and reduced scores in parental functioning and emotional well-being domains. Conclusions: A long process of AIS treatment can cause crisis situations for patients and their families and influences both the physical and mental health of patients by changing their family’s quality of life (FQOL). Early identification of families characterized by diminished cohesion and adaptability enables the integration of psychopedagogical support and family consultations into standardized care. Such a multidimensional approach may enhance therapeutic prognosis and accelerate the rehabilitation process. Full article

Background/Objectives: General-self efficacy (GSE) is a substantial element during pregnancy that promotes healthy decision-making and prevents complications. Information on predictive factors of GSE among pregnant women is limited. This study aimed to assess the GSE among pregnant women and identify its relationship with family quality of life (FQOL) domains in a lower-middle-income community. Methods: This cross-sectional analytical study was conducted in nine antenatal care centers from July 2024 to March 2025. Pregnant women were enrolled through the multiple stage sampling method. GSE in pregnant women was assessed using the General Self-efficacy Scale. FQOL was assessed using the Beach Center Family Quality of Life Scale. Univariable and multivariable linear regression analyses were performed to assess predictors of GSE among pregnant women. Results: A total of 417 pregnant women participated in the study. The prevalence of low GSE was 12.2%. Multivariable linear regression showed that older age (p = 0.02), rural area (p = 0.007), and planned pregnancy (p = 0.03) were predictors of GSE among pregnant women. The total score of FQOL (p = 0.0001), parenting (p = 0.004), and material well-being (p = 0.043) were positive determinant factors of GSE in pregnant women who have at least one child. Conclusions: The prevalence of low general self-efficacy (GSE) among pregnant women was notably high, particularly among those with at least one child. Education regarding family planning, parenting, and financial management through multidisciplinary, family-centered care teams is essential to address the complex needs of expectant families. Full article

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. Full article

(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. Full article

Background: The high prevalence of learning disabilities among children confirm that learning disabilities are surprisingly common. In the absence of routine screening, many children still go undetected with a huge individual and family burden, while at the same time, the findings of existing interventions are conflicting. This study reports on the design, implementation and evaluation of an innovative pilot intervention aiming at improving the quality of life of the family of children with specific learning disabilities. Method: For the purposes of this study, we ran a randomized controlled trial employing an experimental research design with two groups (intervention and control). The study population comprised parents of children with specific learning disabilities. Out of the 71 individuals that were eligible for randomization, 42 were allocated to the intervention, and 29 to the control group. A brief parenting intervention model was employed, aiming at improving parenting skills through a stepwise process. The intervention included four skill building sessions conducted over a period of 6 weeks. “Parenting style” (including three dimensions: “Authoritative”, “Authoritarian” and “Permissive”) and “Family Quality of life” (including five dimensions: “Family Interaction”, “Parenting”, “Emotional Well-being”, “Physical/Material Wellbeing” and “Disability-Related Support”) were employed as the outcome measures of this study. Two validated questionnaires were used to measure the study outcomes: “the Parenting Style Questionnaire” and the “Family Quality of Life Scale (FQOL) Questionnaire”. The questionnaires were applied at the pre- and post-intervention level. Findings: An analysis showed that except for the “permissive parenting style”, the intervention and control group had statistically significant differences in all the “Parenting style” and the “Quality of life” dimensions at the post-intervention level. In the intervention group, none of the study dimensions improved at a statistically significant level at the post-intervention level compared to pre-intervention level. According to the cluster analysis, which re-examined successful vs. unsuccessful cases, the intervention was found to have an effect on the average values of all the “quality of life” and “parenting style” dimensions, except for the “Authoritarian Parenting Style”. Conclusions: The study offers evidence on the dimensions of parenting and quality of life mostly affected by a brief intervention as well as on the feasibility, practicality and acceptance of such interventions in local communities. Full article

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. Full article

The aim of the study was to assess the impact of the strategies of coping with the family crisis in children and adolescents with idiopathic scoliosis on the level of their family’s quality of life (FQOL). The study group consisted of 100 adolescents (girls 83%, boys 17% of the entire main group) with an average age of 14 (13.83 ± 1.92). The control group consisted of the same number of people as the study group (girls 78%, boys 22% of the entire control group) with an average age of 14 (14.09 ± 2.16). The FQOL scale was used to assess the family’s quality of life, and the F-COPES scale was used to assess the problem-solving strategies used by the family (individual members) in a difficult life situation. Statistical analysis showed significant differences between the two compared groups. While dealing with a crisis situation in their families, adolescents treated for idiopathic scoliosis were using the spiritual support strategy (M ± SD 5.12 ± 2.07) significantly more often, while their healthy peers much more willingly and more often benefited from other possible strategies (F-COPES). Additionally, statistically significant differences were observed in the assessment of children and adolescents from both groups that the usage of different strategies available on the F-COPES scale correlated and affected the areas of the FQOL level of their families. Gaining spiritual support had a negative impact on the area of physical and financial well-being of FQOL, as assessed by juveniles with SI (R = −0.254, p = 0.011). However, in the opinion of healthy peers, the strategy of gaining social support (F-COPES) resulted in a higher level of FQOL in the area of disability problems (p = 0.005). A long process of SI treatment can cause crisis situations for patients and their families and affect both the physical and mental health of patients by changing the FQOL level of their families. Full article

The lack of quality of life is a key issue for families with children with an intellectual disability. While the quality of life for people with disabilities has previously been researched as an individual variable, this has now shifted to include family members. The purpose of this study was to conduct a review of the studies measuring the quality of life of families with an intellectually disabled member, in order to identify the most commonly used scales and their psychometric properties. Method: Data were collected from six databases (ERIC, Web of Science, Scopus, CINAHL, MedLine, and Google Scholar), and this search yielded 3948 studies. One hundred and twenty studies that met the inclusion criteria were included in this study. Results: Nine scales were used in the last years to measure the quality of life for families with individuals with an intellectual disability. The Beach Center scale was the most common scale, followed by the Family Quality of Life Survey and the World Health Organization’s quality of life assessment (WHOQoL-BREF). The results showed that the included studies in the review lack the consideration of a broader population representing the different types of cultures with different socioeconomic backgrounds. Key aspects used to assess the FQoL are environmental factors (proximal and distal factors), as well as economic factors. Conclusion: Although the operationalization of the FQoL often incudes several subthemes, a general agreement regarding which domains of the FQoL need to be included in the measurements, and these do not exist right now. Moreover, multidimensional scales are still rare. Full article

Research into family quality of life (FQoL) is becoming increasingly popular. However, studies into the interrelations between family and individual quality of life (QoL) are still scarce. The aim of this article is to illustrate how having a child with a (rare) chronical illness/disability (specifically, Neurofibromatosis Type 1) affects both the family as a whole and its members individually. The lived experiences are recounted by the Mother (first author) and have been further explored through the method of co-constructed autoethnography. Metaphors have been used to help understand the findings. Our findings show that each individual QoL not only influences the FQoL but has a domino effect on each other. Individual lives are intertwined, and accordingly their well-being cannot be seen as being distinct from these interrelationships. (F)QoL should be viewed as a ‘praxis of care’, where caregiving occurs to and by each member, and continuously changes over time. Full article

The topic of quality of life has long been a focus of global research and the public. The land transfer policy implemented by the Chinese government affects farmers’ quality of life (FQOL); however, the extent of this effect remains unclear. As land transfer may be a self-selection behaviour, it may be subject to selection bias such that traditional measurement methods are unable to effectively estimate its quantitative impact. This study used data from a questionnaire given to 5668 rural households in 25 provinces of mainland China. It sought to quantify the impact of land transfer on FQOL by using endogenous switching regression (ESR) models to correct selection bias. The results show: (1) for farmers who choose to transfer land, if they choose not to transfer land, FQOL may decrease by 64.11%; (2) for farmers who choose not to transfer their land, if they go on to choose to transfer their land, FQOL may increase by 0.75%; (3) land transfer can improve the quality of life of the older generation of farmers but will reduce the quality of life of the newer generation. The results of this study provide research support for China and other countries seeking to effectively implement land policies and improve the FQOL, helping to provide practical strategies for the sustainable development of rural areas. Full article

There has been increasing attention to quality of life for families supporting children with disabilities internationally; however, there is minimal research on family quality of life (FQOL) in low-income countries, and specifically in African contexts. This study explored how Ethiopian families of children with disabilities conceptualised FQOL and what they perceived their support needs related to FQOL were. Using a qualitative exploratory descriptive design, we interviewed Ethiopian family members of children with various disabilities. Audio-recorded interviews were transcribed verbatim and translated into English with professional translation assistance. We analysed translated transcripts inductively based on Braun and Clarke’s approach to thematic analysis. We found that spirituality was core to families and that they described FQOL in terms of their relationships within the immediate family and with the community. Additionally, families wanted to be self-sufficient and provide for themselves, but with the additional challenges of raising a child with a disability and pervasive poverty, they recognised their need for more support. Therefore, providing holistic, family-centred services to Ethiopian families of children with disabilities can contribute to enhancing FQOL. Full article

A family-centered approach (FCA) is recognized as a set of values, principles, and practices aimed at strengthening families’ abilities to promote the development and well-being of its members. Despite the limited information available, results show the positive relationship between the support model, based on the collaboration between families and specialists, and family empowerment. This paper seeks to analyze the opinions of families and specialists on their participation in an intervention program for families of youths and adults with disabilities. Thirteen families and eight specialists participated in the study that used qualitative techniques, such as interviews and discussion groups, and a questionnaire to gather information about the families’ and specialists’ viewpoints over one year. Results show that families welcomed their involvement in the program. Both families and specialists recognize that creating a space for the whole family is the main contribution of the program, as it highlights the importance of considering the family’s entire system as a support unit, as well as the close relationship between the individual’s and family’s quality of life (FQoL). Full article

Background: Family quality of life (FQoL), just like individual quality of life, has become a priority outcome in the policies and services received by persons with intellectual and developmental disabilities (IDD) and their families. Conceptualizing, measuring, and theorizing FQoL has been the object of investigation in recent decades. The goal of this paper is to present a revision of the Spanish Family Quality of Life Scales, the CdVF-E < 18 and the CdVF-E >18, and describe the FQoL of Spanish families with a member with IDD. Methods: The sample included a total of 548 families with a member under 18 years old and 657 families with a member over 18. Based on an Exploratory Factor Analysis (EFA) firstly and a Confirmatory Factor Analysis (CFA) secondly, the two scales’ psychometric properties were explored. Results: The CdVF-ER < 18 and the CdVF-ER > 18 comprise 5 dimensions, containing 35 and 32 items, respectively, and they show good validity and reliability. The families obtained a high FQoL score, although some differences exist between the dimensions on which families with children under and over 18 score highest and lowest. Conclusion: The characteristics of the revised scales facilitate their use by professionals, administrations, and services. Full article

Background: In recent years, there has been a growing international interest in family quality of life The objective of this systematic review is to understand and analyze the conceptualization of the quality of life of families with children with disabilities between 0 and 6 years of age, the instruments for their measurement and the most relevant research results. Method: A bibliographic search was conducted in the Web of Science, Scopus and Eric databases of studies published in English and Spanish from 2000 to July 2019 focused on “family quality of life” or “quality of family life” in the disability field. A total of 63 studies were selected from a total of 1119 and analyzed for their theoretical and applied contributions to the field of early care. Results: The functional conceptualization of family quality of life predominates in this area, and a nascent and enriching holistic conceptualization is appreciated. There are three instruments that measure family quality of life in early care, although none of them is based on unified theory of FQoL; none of them focus exclusively on the age range 0–6 nor do they cover all disabilities. Conclusions: The need to deepen the dynamic interaction of family relationships and to understand the ethical requirement that the methods used to approach family quality of life respect the holistic nature of the research is noted. Full article