Family Quality Of Life Scale Research Articles

Social support, resilience, and quality of life for families with children with intellectual disabilities

A family’s quality of life (FQOL) has been shown to impact the quality of life for the child with intellectual disabilities. Therefore, it is important to understand the factors that contribute to FQOL to inform the types of interventions and supports that are provided to families. The goal of this study was to determine whether social support and resilience account for variance in Family Quality of Life as reported by mothers of children with intellectual disabilities. Eight-eight Qatari mothers responded to three surveys, the Brief Resilience Scale, the 2-Way Social Support Scale, and the Beach Center Family Quality of Life Scale. Regression results indicate that giving and receiving social support accounted for significant variance in FQOL, explaining 62 % of the variance. Resilience was not a significant predictor. Implications for research and practice are discussed.

A family-based intervention for prevention and self-management of disabilities due to leprosy, podoconiosis and lymphatic filariasis in Ethiopia: A proof of concept study.

A key issue for persons with leprosy-, lymphatic filariasis- and podoconiosis-related disabilities is the life-long need to practice self-management routines. This is difficult to sustain without regular encouragement and support of others. Family-based support may be a sustainable and feasible strategy to practice self-management routines. This proof of concept study aimed to develop and pilot a family-based intervention to support prevention and self-management of leprosy, lymphatic filariasis and podoconiosis-related disabilities in Ethiopia. We used a quasi-experimental pre/post intervention study design with a mixed methods approach. The study population included persons affected by leprosy, lymphatic filariasis and podoconiosis and their family members. All persons affected had visible impairments due to their condition. We collected physical impairment outcomes, data on activity limitations, stigma and family quality of life using the SALSA scale (range 0-80), the SARI stigma scale (range 0-63) and the Beach Centre Family Quality of Life scale (range 0-125) and conducted in-depth interviews and focus group discussions. Quantitative data were analysed using paired t-tests, unequal variances t-tests, linear regression and binary logistic regression. Qualitative data were coded using open, inductive coding and content analysis. The family-based intervention consisted of self-management of disabilities, awareness raising and socio-economic empowerment. The intervention was delivered over several monthly group meetings over the course of several months. A total of 275 (100%) persons affected attended at least one session with a family member, and 215 (78%) attended at least three sessions. There was no significant improvement in eye and hand problems after the intervention. However, foot and leg impairments, number of acute attacks, lymphedema and shoe wearing all significantly improved at follow-up. In addition, family quality of life significantly improved from 67.4 at baseline to 89.9 at follow-up for family members and from 76.9 to 84.1 for persons affected (p<0.001). Stigma levels significantly decreased from 24.0 at baseline to 16.7 at follow-up (p<0.001). Activity levels improved, but not significantly. This proof of concept study showed that the family-based intervention had a positive effect on impairments and self-management of disabilities, family quality of life and stigma. We recommend a large-scale efficacy trial, using a randomised controlled trial and validated measurement tools, to determine its effectiveness and long-term sustainability.

Health Care Utilization by Children with Disabilities and Evaluation of Factors Affecting Caregiver Satisfaction

Aim: Health care is lacking for some level of mental disability for various reasons. The aim of this study was to examine health care utilization by individuals with severe disabilities applied to the health committee of a university hospital and to examine the factors that determine caregiver satisfaction by assessing their burden of care, quality of life, and level of burnout. Methods: Of the 840 disabled individuals who applied to Recep Tayyip Erdoğan University Faculty of Medicine Training and Research Hospital, Rize, Turkey between January 2016 and 2019, 48 with severe disability caregivers were included in the study. Their sociodemographic information, level of health care, and caregiver satisfaction were analyzed using sociodemographic data forms. The Zarit Caregiver Burden Scale, Maslach Burnout Inventory, and Family Quality of Life Scale were used to assess the caregiver data. Results: More than half of the 48 children with severe disabilities were male (52.1%).Disabled females and female caregivers appeared to increase the level of emotional burnout of caregivers according to Maslach Burnout Inventory and Family Quality of Life Scale (p:0.01, p:0.05, p:0.02, p:0.03). Groups receiving home care was found with satisfaction. Disabled children and caregivers who were living within an urban area have significant differences with Maslach Burnout Inventory Personal Success (p:0.03). Conclusion: Disability is more of a risk for males. The sex of the disabled individual and caregiver were factors that affected caregiver burnout. Home care services increases caregiver satisfaction. Living within an urban area decreased the level of burnout on caregiver. Keywords: Caregiver burden, caregiver satisfaction, children disabilities, health care, family quality DOI: 10.7176/JHMN/83-01

Parental Stress and Family Quality of Life: Surveying Family Members of Persons with Intellectual Disabilities.

(1) Background. This study assesses the quality of life in families with a member with an intellectual disability using the Family Adjustment and Adaptation Response framework. (2) Methods. The study included 515 Spanish participants whose family members with disabilities range in age from infancy to adulthood. We hypothesized that it is possible to predict parenting stress by paying attention to the meaning families give to themselves and their circumstances while controlling for the impact of other variables such as family capabilities and characteristics of the family member with disabilities. We used the Beach Center Family Quality of Life Scale and the section on Exceptional needs of medical and behavioral support from the Supports Intensity Scale, together with other potential predictors. The subscale on parental stress from the Parenting Stress Index–Short Form was utilized as a criterion measure. (3) Results. Hierarchical multiple regression analysis revealed that 49% of parental stress was predicted by dysfunctional interaction, difficult behaviors, low emotional wellbeing, poor family interaction, as well as kinship as parents, and the severity of both the medical needs and intellectual disability. (4) Conclusions. The stress experienced by those families is mostly predicted by the meaning they give to themselves and their circumstances. Implications of these findings for service delivery are discussed.

Relationship between social loneliness and dissatisfaction and family life quality in early childhood

In this study, the relationship between 66-72 months old children’s loneliness and social dissatisfaction at school and their family life quality was examined. The study included 194 kindergarten children who are 5-6 years old. As the data collection instruments, the personal information gained by the researchers, the Loneliness & Social Dissatisfaction Scale (60-72 months), and the Beach Center Family Quality of Life Scale were administered. As a result of the study, children in this sample generally reported high levels of loneliness-social dissatisfaction. A negative relationship between loneliness-social dissatisfaction of children and family quality of life was found. As a result, it was seen that the only significant predictor of loneliness and social dissatisfaction scores of children is the emotional well-being subscale. This result shows that the emotional well-being of children in the context of family life quality is the most effective factor in the loneliness and social dissatisfaction

Social support and family quality of life in Chinese families of children with autism spectrum disorder: the mediating role of family cohesion and adaptability

Background The current study examined the interrelations among social support, family quality of life (FQOL), and family cohesion and adaptability in Chinese families of children with autism spectrum disorder (ASD). Methods A sample of 163 caregivers of children with ASD in China were surveyed with the Social Support Rating Scale, Beach Center Family Quality of Life Scale, and Chinese version of Family Adaptability and Cohesion Scale II, respectively. We used structural equation modeling to examine the mediating role of family cohesion and adaptability on the relationship between social support and FQOL. Results The results indicated that social support had a positive impact on FQOL and that family cohesion and adaptability completely mediated the relationship between social support and caregivers’ satisfaction on FQOL. Conclusions Facilitating family cohesion and adaptability by providing social support may be beneficial to help families of children with ASD improve their FQOL. The findings identified the need for developing targeted interventions for this population.

Family quality of life among Taiwanese children with developmental delay before and after early intervention.

Although early intervention (EI) practitioners emphasise the importance of individualised family-centred services for families of children with developmental delay (DD), few empirical studies have evaluated whether EI can improve family quality of life (FQOL). This study aimed to investigate the trajectory of FQOL and its predictors among families of children with DD during the first 12months of EI. This study employed a prospective cohort design. Data were collected using structured questionnaires at the placement meeting before the commencement of EI, as well as 3, 6 and 12months later. We recruited 142 primary caregivers of children with DD in northern Taiwan from March 2015 to August 2016. FQOL was measured using the Mandarin Chinese version of the Beach Centre FQOL Scale. Family resilience (FR) was measured using the Mandarin Chinese version of the FR Assessment Scale. Other independent variables included socio-demographics, type of DD and EI services. Generalised estimating equations were used to perform multivariate analysis. Family quality of life exhibited a significant quadratic trend in the 12months surrounding EI. The score was the lowest before EI started (89.85), then increased to peak (94.87) at 6months and then decreased slightly to 92.34 at 12months. FR followed a significantly increased linear trend during the period. There were significant and positive correlations between FQOL and FR across all time points. Multivariate analysis showed that employed caregivers, FR, sufficient caregiving manpower and satisfaction with marital quality were positively associated with FQOL. Receiving more types of EI services and having fathers who were not Taiwanese nationals were negatively associated with FQOL. Family quality of life and FR increased significantly after receiving EI, revealing the latter's effectiveness. Unemployment, poor marital quality, father being an immigrant, low FR and insufficient family caregiving manpower were associated with lower FQOL, suggesting that these families require more assistance.

Investigation of the relationship between burnout, life satisfaction and quality of life in parents of children with disabilities

ABSTRACT The aim of this study was to investigate the relationship between burnout, life satisfaction and quality of life in parents of disabled children and the mediating role of burnout in the relationship between life satisfaction and quality of life. Relational comparison, which is a quantitative research method, was used. The study sample consisted of 538 parents of students with disabilities of special education schools in the central district of Düzce and parents of children with disabilities receiving services from the Guidance Research Centre. Data were collected using the Maslach Burnout Inventory, the Beach Centre Family Quality of Life Scale and the Satisfaction with Life Scale. Pearson Product Moment Correlation Coefficient and path analysis model were used for analysis. Burnout was negatively correlated with life satisfaction and quality of life while the quality of life was positively correlated with life satisfaction. Quality of life predicted burnout negatively while burnout predicted life satisfaction negatively. However, the quality of life did not predict life satisfaction. According to path analysis, burnout was a mediating variable. Results suggest that parents of children with disabilities should be supported socially and financially and that existing social support should be diversified based on the child’s disability.

Can a combination of mental health services and ADL therapies improve quality of life in families of children with autism spectrum disorder?

Due to the nature and complexity of autism spectrum disorder (ASD), which typically requires coordination among various treatments targeting different areas of need, the entire family is impacted. Family quality of life (FQOL) research has emerged to address the range of adaptation families experience when raising a child with ASD. One factor that is likely to impact FQOL relates to families' service use to support their child's needs. The goal of the present study was to examine the relations between specific domains of FQOL and service usage type among families of children with ASD. A total of 164 caregivers of children diagnosed with ASD were asked which autism services they were currently using and completed the Beach Center Family Quality of Life Scale and the Nisonger Child Behaviour Rating Form. Findings revealed that service usage type significantly predicted families' satisfaction with their emotional well-being, physical/material well-being, and disability-related support. Specifically, families using a combination of mental health services and ADL therapies reported greater satisfaction in these FQOL domains. Present findings underscore that families need access to a sufficiently broad range of child services and supports in order to benefit their FQOL.

Family Management Style Improves Family Quality of Life in Children With Epilepsy: A Randomized Controlled Trial.

Epilepsy is a common chronic disease with transient brain dysfunction and critically influences the quality of patients' family life. The aim of this study was to analyze the effectiveness of family management style on family quality of life in children. We randomized 130 children to either the intervention group (n = 65) or the control group (n = 65). Family management style combined with routine care was applied in the intervention group within the first 24 hours after admission, whereas only routine care was applied in the control group. Family management style contains 3 steps: involve families into the intervention group and determine treatment plan, educate parents on how to manage their family, and monitor quality of home management. Scores on the Beach Center Family Quality of Life Scale (FQOL) of 2 groups were collected at 3 time points: within the first 24 hours after admission (T1), 6 months after discharge (T2), and 12 months after discharge (T3). Repeated-measures analysis of variance of FQOL scores was used to evaluate difference. Full scores and each subscale's scores on FQOL in the control group and the intervention group at T1 had no statistical significance (P > .05). Scores on FQOL at T2 and T3 increased in the intervention group, but there was almost no change in the control group, with statistical significance between the intervention group and the control group (P < .05). Scores on FQOL at T1, T2, and T3 showed that score of subscale except parenting FQOL improved in the intervention group (P < .05), but no difference was shown in the control group (P > .05). There was no difference shown among the control group and the intervention group that interacted with time (P > .05). The family management style can effectively improve the family quality of life in children with epilepsy, especially at the satisfaction level of family emotional well-being and disability-related support.

A Combined Model Study: The Needs of Parents of Children with Attention Deficit Disorder with Hyperactivity (ADHD) in Parent Education

ADHD children have some special education needs. Participation of parents in the process plays an essential role in the effectiveness of education. Determination of the educational expectations of parents of children with special status in parent education, which is part of lifelong education, and preparation of education programs in line with these needs are of great importance for the development of the society. The aim of the research in this direction is to determine the educational needs of parents with ADHD children. In addition, determining stress and quality of life constitutes the other sub-objectives of the research. A mixed model is used in the study. Through special education teachers 200 parents (110 mothers and 90 fathers) were reached. “Beach Centre Family Quality of Life Scale”, “Perceived Stress Level Scale” and “Tool for Determining Parent Needs” were used for quantitative data. According to the obtained results, the stress level of parents is a significant predictor of quality of life (β=-.204, t= -2.738, p<.01). Among these parents, semi-structured interviews were held with 15 volunteers. Case study was conducted for qualitative data. The answers given to the questions in line with the themes formed by the researcher were examined. With qualitative data, it was found that parents felt emotional disability, had negative experiences with the environment, and that the child had difficulty in solving school problems. In addition, when the responses were examined, it was seen that participants often needed practical training (f = 12) to solve the problem. When the literature is examined, the research findings are similar to other findings indicating that having a child with ADHD brings some difficulties. Preparation of education programs answering to the needs of parents has been proposed.

Emotional well-being and social support as important factors affecting the quality of life of parents of a child with cerebral palsy

The birth of a child with cerebral palsy is an enormous challenge for the parents which has a direct impact on their quality of life. Therefore, we believe it is important to pay attention to this topic. To that end, we conducted research on the quality of life of parents of children with cerebral palsy in 2018. To achieve our goal, we applied quantitative research strategy and used a valid research tool, i.e. a standardized quality of life questionnaire – Family Quality of Life Scale ("FQOL"). The average score reached by respondents was 94.0918 points which indicates a higher quality of life in respondents than expected. The evaluation of the average score for each dimension of the scale showed that respondents scored the lowest in the "Emotional Well-Being" dimension (13.2551 points) and "Social Support" (15.6429 points). The research further confirmed that there were statistically significant differences in the quality of life of respondents depending on their age (t = -2.341, p = 0.021), marital status (F = 3.476, p = 0.019) and the territorial region (χ2 = 15.39, p = 0.031). A statistically significant relationship between the quality of life of respondents and the age of the child with cerebral palsy (0.288 **, p = 0.004) was confirmed. Despite a relatively high score that indicated a higher quality of life in respondents, the research identified two areas in which parents of children with cerebral palsy had a lower quality of life, namely, their emotional well-being and social support.

The Relation Between Family Quality of Life and the Family‐Centered Approach in Families With Children With an Intellectual Disability

AbstractAlthough family quality of life (FQOL) and the family‐centered approach (FCA) are often conceptually linked, empirical research on their relation is scarce. This study investigated the relation between the FCA and FQOL in families with a child (0–18 years) with an intellectual disability receiving home‐based support (HBS) in Flanders. The impact of the parental work situation and the child's support needs on FQOL (domains) were studied too. Through the Helpgiving Practices Scale (HPS) and the Enabling Practices Scale (EPS), parents of participating families (n = 58) reported about the FCA in their families' HBS. Using the Beach Center FQOL Scale, mainly mothers reported about their families' quality of life. The relation between the realization of the FCA, parental employment, and the child's support needs on the one hand, and FQOL on the other hand was studied via multiple regression analyses. Additionally, the best predicting model was determined for FQOL (domains). Globally, a positive relation between FQOL and the FCA was found. Dependent on the FQOL domain, a different relation was identified with the family‐centered components. Components of the EPS (i.e., comfort and parental autonomy) were better predictors than those of the HPS. The parental work situation was a significant predictor for satisfaction regarding total FQOL (with and without disability‐related support), family interactions, and parenting. The child's support needs were a significant predictor for emotional well‐being. As the first of its kind, this study investigated the relation between FQOL and the FCA in detail. More, in depth, and especially long‐term research is, however needed to fully understand the relation between FQOL and its contributors.

Construct, Convergent, and Discriminant Validity of the Beach Center Family Quality of Life Scale for Singapore

Family quality of life (FQoL) constitutes an important aspect of early intervention. However, the culture bound nature of this construct necessitates validation of FQoL measures when being used in a culture different from the one in which they were developed. This study sought to understand the psychometric properties and construct validity of the Beach Center FQoL (BCFQoL) scale in Singapore. Data from 307 caregivers of children in an early intervention program were used. These caregivers completed the BCFQoL scale and external validity measures of family outcomes, psychological distress, and life situation. Confirmatory factor analysis and correlations were used to examine the factor structure and convergent and discriminant validity of the BCFQoL scale. Results indicated support for 5 FQoL dimensions and a higher-order FQoL factor. External convergent and discriminant validity, as well as internal statistical discriminant validity of the individual BCFQoL dimensions were supported. Despite evidence of internal statistical discriminant validity, there was little variation in the strength of the relationships between individual BCFQoL dimensions and the various external validity measures. Overall, the results of this study support the use of the BCFQoL scale as a valid measure of FQoL in Singapore.

A psychometric study of the Family Resilience Assessment Scale among families of children with autism spectrum disorder

BackgroundThe family system represents a critical context within which children develop. Although raising a child with a disability may represent a challenge to this dynamic system, research demonstrates that families have the capacity to demonstrate both maladaptation and resilience in the face of related stressors. In the current study, we examined the psychometric properties of the Family Resilience Assessment Scale (FRAS) among families of children with autism spectrum disorder (ASD). This tool is the only measure of family resilience that seeks to identify within-family protective factors, including the extent to which they rely on adaptive belief systems, organizational patterns, and communication processes. Identifying protective processes utilized by those who show resilience is critical within both clinical practice and research, as it aligns with a strength-based perspective that builds on what families are doing well.MethodsParticipants included 174 caregivers of individuals with ASD (84% mothers). Caregivers completed the FRAS, as well as the Beach Center Family Quality of Life Scale. The 54-item FRAS was submitted to an exploratory factor analysis, using the iterated principal factor method with a promax rotation.ResultsFifty-one items across 3 factors (Family Communication and Problem Solving, Utilizing Social and Economic Resources, Family Spirituality) were retained, explaining 52% of the total variance. The final scale demonstrated convergent validity with the Family Quality of Life assessment tool.ConclusionsIt is our hope that identifying the optimal scale structure will encourage other researchers to utilize this measure with families of children with ASD, thus continuing to advance the study of family resilience within this unique context.

Necesidades y Calidad de vida de familias de personas en edades tempranas con discapacidad en Costa Rica; adaptación y validación de una Escala

Introducción: Determinar las necesidades de apoyo de las familias de personas en edades tempranas con discapacidad intelectual y del desarrollo (DID), en cuanto a calidad de vida, es fundamental para los programas de atención temprana (AT). Costa Rica no cuenta con investigaciones, ni con escalas adaptadas, para ello. En consecuencia, el objetivo de este estudio es validar la Escala Evaluación de Necesidades Familiares (ENF), para la población costarricense.&#x0D; Metodología: Estudio observacional, cuantitativo de tipo psicométrico, que se llevó a cabo en una muestra de familias de personas con DID menores de 18 años, utilizando como marco poblacional el Padrón de Matrícula (2017) de los Centros de Educación Especial de Costa Rica, proporcionando por el Ministerio de Educación Pública. Se realizaron tres etapas: primero el Juicio de Expertos para revisión de los ítems, utilizando el indicador Kappa de Cohen con el fin de determinar el nivel concordancia de los mismos; en segundo lugar, una prueba piloto con 12 familias. Como resultado de ambas fases, se obtiene la primera versión de la ENF-CR, con un total de 68 ítems validados culturalmente. En la tercera fase se aplicó la ENF-CR, como la escala de Calidad de Vida Familiar Costa Rica (CdVF-CR), a la muestra seleccionada.&#x0D; Resultados: Los resultados evidencian que las propiedades psicométricas de la Escala de Necesidades Familiares en Costa Rica (ENF-CR) son buenas. El análisis factorial exploratorio da razón de la validez de constructo que se concreta en una solución de 61 ítems distribuidos en siete factores; así mismo, la estimación del coeficiente de fiabilidad evidencia una excelente consistencia interna, con un Alfa de Cronbach de 97,78%. Mientras que, en cuanto a la validez del criterio, la evidencia muestra que no existe correlación lineal significativa entre las puntuaciones medias de las escalas de CdVF-CR y ENF-CR.&#x0D; Conclusiones: la ENF-CR, tiene propiedades psicométricas contrastadas para considerarse una herramienta con muy buena fiabilidad y validez, para ser utilizada en el contexto costarricense.&#x0D; Palabras Clave: Evaluación de necesidades familiares, discapacidad intelectual, calidad de vida familiar, validación, Costa Rica.

The Application of Parent-implemented Intervention in Families with Autistic Children

This study aims to explore the effectiveness of parent-implemented intervention in the family of children with autism. Sixty parents with autistic children were trained with China Autistic Children's Family Rehabilitation Project CST Training Materials. Childhood Autism Rating Scale (CARS) and Bench Center Family Quality of Life Scale (BCFQOLS) were applied to access both children and parents before and after the training. Total score of the children in the experimental group was significantly lower than the pretest score. The results show that parent-implemented intervention has a positive impact on promoting the social communication ability of children with autism.

Child, Family, and Early Intervention Characteristics Related to Family Quality of Life in Spain

Family quality of life (FQoL) is considered one of the aims of early intervention (EI) services and a good indicator of service quality. Families were recruited from EI centers in 12 of 17 communities (states) in Spain. This study describes the FQoL of 250 Spanish families with children aged 0 to 6 years in EI services during a family-centered implementation process. We used an EI-specific FQoL scale that includes families’ perception of their child’s functioning as one factor. We also describe the relationships among individual, family, and service variables as well as FQoL. Type of disability, socioeconomic status, and family-centered practices impacted Child Functioning, Overall Life Situation, and Access to Information and Services factors, respectively. Fewer number of professionals involved was related with greater perception of child’s functionality. Family-centeredness, type of family, and type of disability were the most influencing variables for the Total score. Implications for practice are discussed.

A Global Family Quality of Life Scale: Preliminary psychometric evidence.

Psychometric data are reported for a new Global Family Quality of Life Scale (G-FQOLS) (3-items) evaluating family members, parents and adolescent/young adults (AYA). Families (N= 209) were interviewed in a study addressing secondary conditions and adaptation in families of AYA with and without spina bifida (SB). Principal component factor analysis with Varimax rotation, Cronbach alpha, and Intraclass correlation (ICC) for parent-AYA agreement of FQOL assessment were conducted. A single factor with an eigenvalue greater than 1 was identified. Factor loadings were 0.79-0.94. Internal reliabilities were strong (α= 0.86-0.90). ICC coefficients between parent and AYA ratings were 0.38-0.48. This study provides preliminary support for the G-FQOLS. This global appraisal of Family Quality of Life (FQOL) reflects a participant's personal weighting of domains important to him/her.

Study on Relationship Between Family Cohesion and Adaptability, and Quality of Life of Caregivers of Children With ASD

The present study aimed at exploring the status of family cohesion, adaptability, and quality of life of caregivers of children with ASD, as well as the relationship between family cohesion and adaptability, and quality of life. One hundred and sixty-three caregivers of children with ASD from Sichuan province in China were investigated by the Chinese version of Family Adaptability and Cohesion Scale and Beach Center Family Quality of Life Scale. The results showed that: (1) Caregivers of children with ASD had higher level of family cohesion, lower level of adaptability, and medium level of quality of family life; (2) Family cohesion and quality of life were significantly correlated, and adaptability and quality of life were also significantly correlated; (3) Family cohesion and adaptability had a positive impact on quality of family life.