Family Quality Of Life Research Articles

Evaluating the impact of lactase supplementation on infant colic: Study protocol for a systematic review of randomized controlled trials.

Infant colic is a common functional gastrointestinal disorder that affects infants during their first months of life. The etiology of this condition remains unclear. However, some studies suggest lactase deficiency may be a contributing factor. Currently, the evidence on dietary treatment and lactase supplementation for management of infant colic is limited. We aim to systematically review evidence on the efficacy and safety of using a lactase supplementation for managing infant colic. The Cochrane Central Register of Controlled Trials (CENTRAL, the Cochrane Library), MEDLINE, and EMBASE will be searched to identify randomized controlled trials comparing oral lactase supplementation with placebo or no intervention in infants aged less than 6-month-old with infant colic using any recognized definition. The risk of bias will be assessed using the second version of the Cochrane Collaboration's risk-of-bias tool. The main outcome will be the number of responders in each group after treatment, defined as infants who experienced a decrease in daily crying as reported by the study authors. Additional outcomes will include the duration and frequency of crying episodes, infant sleep duration, parental satisfaction, discomfort of infants, number of hospital admissions, family quality of life, and adverse events during the intervention. The study findings will be published in a peer-reviewed journal and will be submitted to relevant conferences.

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

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

Impact of Childhood Cancer on Family Functioning and Family Quality of Life in the Western Region of Saudi Arabia.

Childhood cancer affects families and friends and causes lifestyle changes that become overwhelming for them. Childhood cancer may cause decreased physical, emotional, and social health-related quality of life (QOL). Childhood cancer may cause strain on the financial status of the family and shape their coping strategy to the disease. The extent of the impact of childhood cancer on families is associated with several demographic characteristics of the family such as diagnosis, phase of treatment, and parent's educational level, employment, and marital status of the parents. The objective of this study was to explore the impact of childhood cancer on family functioning and family quality of life (QOL) in the Western Region of Saudi Arabia. This study was a quantitative, randomized, cross-sectional study. 187 participants were randomly selected from the population of parents whose children have cancer and treated at Princess Noorah Oncology Center in King Abdulaziz Medical City, Jeddah. A survey was used to collect data for this study. Healthcare and social systems may have to consider the impact of childhood cancer in the care plans of the patients. Leukemia represents the highest disease prevalence followed by brain tumor. The highest score of the impact on the family survey was familial social concerns domains followed by financial burden with mean scores of 3.59 (98.8%) and 3.56 (98.0%), respectively. Then, mastery domain mean score is 3.43 (85.8%) and finally personal strain with mean score of 3.21 (980.3%). The QOL of the family results indicated that the highest was physical/material well-being with mean score of 3.84 (76.8%) and family interaction with mean score of 3.82 (76.4%), followed by emotional well-being with mean score of 3.54 (70.8%) and parenting with mean score of 3.53 (70.6.%). Significant differences were found between the overall scales of QOL and the scale of impact on the family and some demographic characteristics of children and their parents. Childhood cancer has a substantial effect on family functioning and the family's QOL. In addition, both were significantly associated with some demographic characteristics of the child and his parents.

Perceptions of palliative care in Huntington's disease: A qualitative study

IntroductionPalliative care focuses on improving patient and family quality of life by managing symptoms, psychosocial issues and spiritual concerns. Huntington's disease is a progressive neurodegenerative disorder with no current disease modifying therapy. Although the palliative care model has been postulated to be an integral part of HD care, there are gaps in knowledge about how this care should be implemented. This study aims to identify perceptions of palliative care in Huntington's Disease (HD), palliative care needs of people living with HD, and at what point they feel they would benefit from these resources. MethodsParticipants volunteered from a large academic institution patient base to be involved in semi structured interviews that explored patient and caregiver experience surrounding their diagnosis, disease management, quality of life, and areas for improvement. Inclusion criteria for participants was a diagnosis of Huntington's disease and/or a self-identified caregiver of a person living with the disease. ResultsA total of 12 independent patients, three independent caregivers, and five dyads completed the interviews. Themes identified included needs that would provide patient and caregiver centered treatment, current gaps in care, an openness and desire for palliative care, and knowledge about the desired timing of palliative care in treatment plans. ConclusionPeople living with HD and caregivers of people with HD most desire access to treatment that would focus on symptom management, availability of social resources, advanced care planning and spiritual wellbeing. The preferred timing of this intervention for most individuals would be at the onset of symptoms.

Quality of life and family management of paediatric chronic condition amidst the COVID-19 pandemic

PurposeThis study aimed to describe the perception of parents of children/adolescents with chronic conditions of their quality of life and family functioning during the COVID-19 pandemic and explore how the COVID-19 pandemic affected family management of children/adolescents' chronic conditions. Design and methodsA total of 237 parents of children/adolescents with chronic conditions participated in this cross-sectional study. Data were collected through an online questionnaire using the Paediatric Quality of Life Inventory™ Family Impact Module and an open-ended question about the impact of the pandemic on the family management of the paediatric chronic condition. ResultsThe Total Score of PedsQL™ FIM was slightly higher than the midpoint of the scale (M = 60.27; SD = 19.04), and the impact of the pandemic on the family's management of the chronic condition was perceived by 30% of parents as high or moderate. Statistically significant differences were found between parents who reported a high or moderate impact of the pandemic and those reporting little or no impact of the pandemic regarding parental quality of life and family functioning (t (233) = 8.13, p = .00, Cohen's d = 1.14). Two themes emerged from the analysis of the open-ended question: Impact on the child/adolescent and Impact on the family. ConclusionsParents of children/adolescents with chronic conditions reported an average quality of life, and the COVID-19 pandemic significantly impacted the family management of chronic conditions. Practice implicationsThese results highlight the importance of developing interventions to support families in complex situations and contexts, targeting family functioning, family quality of life, and emotional management.

Impact of Care Burden on the Quality of Life in Families of Children with Solid-Organ Transplants.

This study aimed to investigate the effects of care burden on the quality of life of parents who have children who have undergone solid-organ transplant. The research was conducted as a descriptive correlational study. Researchers collected data through face-to-face interviews with parents of patients registered in the Solid Organ Transplantation and Pediatric Nephrology outpatient clinic of Akdeniz University Hospital. The data collection tools included a Descriptive Information Form, the SF-36 Quality of Life Scale, and the Zarit Caregiver Burden Scale. Data were analyzed using descriptive statistics, percentages, Pearson correlation analysis, t tests, analysis of variance, and the Kruskal-Wallis test. Parents in the study had a mean age of 32.12 ± 5.42 years; 100% of the parent participants were mothers. Among children who received transplants, 55.8% were boys. Solid-organ transplant types included 86% with liver transplants and 6.9% with kidney transplants. The mean burden of care score of parents was 38.72 ± 7.12, and the mean quality of life score was 28.14 ± 1.49. A significant negative correlation was found between the care burden of parents and their quality of life. Families of children with solid-organ transplants face a significant care burden, which negatively affects their quality of life. The burden extends beyond parents to siblings and the overall family dynamics. Health care providers should recognize and address this burden by implementing comprehensive support services tailored to the specific needs of these families. A multidisciplinary approach involving various professionals is necessary to provide effective support. Interventions such as respite care, support groups, counseling services, and educational programs can help alleviate the burden and improve the overall well-being of these families. Future research should aim to develop targeted interventions and explore the experiences of these families in more depth.

Health-related quality of life in patients with diverse rare diseases: An online survey

PurposeRare diseases substantially contribute to population morbidity and mortality. Understanding rare disease health-related quality of life (HRQL) is essential for evaluating platform-based interventions that aim to tackle multiple rare diseases at a time. However, most HRQL studies focus on single or select group of rare diseases, often in a single country. Our study aimed to identify patient- and disease-specific correlates of HRQL across diverse rare diseases. MethodsWe conducted an international online survey of rare disease patients and caregiver proxies affected by a systematically identified sample of rare diseases. We calculated EQ-5D scores and conducted multivariate linear regression to examine sociodemographic and disease predictors of EQ-5D-5L visual analog scale (VAS) and utility scores (United States only). ResultsA total of 1053 individuals affected by 103 different rare diseases participated, including 660 patients and 393 caregiver proxies. Disability status and disease prevalence correlated with poorer HRQL across models (P < .05). Increased pain and decreased ability to perform usual activities also correlated with lower VAS for both adult patients and caregiver proxies (P < .05). Being unemployed approached significance as a correlate of both lower caregiver proxy VAS and lower patient utility scores. ConclusionOur results suggest that across rare diseases, lower HRQL is associated with a reduced rare disease prevalence and disability status, among other predictors. Understanding the key correlates of HRQL is essential for developing interventions for improving health care delivery and quality of life for rare disease patients and families.

Family Quality of Life as A Determinant of The Environmental Attitude in Muslim Students

&lt;p&gt;&lt;strong&gt;Abstract&lt;/strong&gt;&lt;/p&gt;&lt;p&gt;Environmental Attitude is a positive or caring attitude that influences individual behavior to engage in activities related to the surrounding environment. Family Quality of Life (FQOL) is one of the main factors that influence students to have a caring attitude toward their environment, especially at school. This research aims to examine the role of family quality of life (FQOL) on environmental awareness (environmental attitude) among high school students in Riau Province. The subjects in this research were 734 students from 5 high schools who lived with their parents in Riau Province. The selection of schools in this research was carried out using non-probability sampling techniques based on accidental sampling. The data collection technique in this research was carried out by administering an environmental attitude and Family Quality of Life (FQOL) scale. Data analysis in this research was carried out using multiple regression techniques. Based on the results of the analysis that has been carried out, it shows a significant influence between the Family Quality of Life (FQOL) variable on Environmental Attitude. This means that the quality of family life for students can greatly influence their attitude of caring for the environment, especially at school.&lt;/p&gt;&lt;p&gt;&lt;em&gt; &lt;/em&gt;&lt;/p&gt;&lt;p&gt;&lt;em&gt;Environmental Attitude merupakan sikap positif atau kepedulian yang mempengaruhi perilaku inidividu untuk terlibat dalam aktivitas yang berkaitan dengan lingkungan sekitarnya. Kualitas kehidupan dalam keluarga atau Family Quality of Life (FQOL) menjadi salah satu faktor utama yang dapat mempengaruhi siswa memiliki sikap peduli terhadap lingkungannya terutama di sekolah. Penelitian ini bertujuan untuk mengkaji peran kualitas hidup keluarga (FQOL) terhadap kepedulian lingkungan (environmental attitude) pada siswa SLTA di Provinsi Riau. Subjek dalam penelitian ini sebanyak 734 siswa dari 5 SLTA yang tinggal bersama orangtua di Provinsi Riau. Pemilihan sekolah dalam penelitian ini dilakukan dengan menggunakan teknik random sampling dan pengambilan sampel dilakukan dengan menggunakan teknik non probability sampling berdasarkan aksidental sampling. Teknik pengumpulan data dalam penelitian ini dilakukan dengan mengadministrasikan instrumen penelitian skala environmental attitude dan Family Quality of Life (FQOL). Analisis data dalam penelitian ini dilakukan dengan menggunakan teknik regresi berganda. Berdasarkan hasil analisis yang telah dilakukan menunjukkan hasil bahwa terdapat pengaruh yang signifikan antara variabel Family Quality of Life (FQOL) terhadap Environmental Attitude. Artinya bahwa kualitas dalam kehidupan keluarga bagi siswa dapat memberikan pengaruh besar terhadap sikap kepeduliannya dengan lingkungan terutama di sekolah.&lt;/em&gt;&lt;/p&gt;

Analysis of the Healthy Family Index: The Impact of Implementing the Healthy Indonesia Program with Family Approach

The Healthy Indonesia Program with Family Approach (PIS-PK) is a primary initiative enforced by the current government to enhance the quality of family life and public health. In this context, the assessment of the Healthy Family Index (IKS) is essential for implementing appropriate interventions and efforts to prevent chronic diseases at the family level. Measurement indicators of IKS include healthy, pre-healthy, and unhealthy family categories. Therefore, this study aimed to analyze IKS based on PIS-PK in Jeneponto Regency, South Sulawesi in Indonesia. A quantitative design with an analytical survey was used to measure IKS across the entire family population in the Jeneponto Regency Health Center working area, totaling 1,321 households. The total sampling method was applied, and data from 12 healthy family indicators were evaluated following the IKS formula. The results showed that the average IKS value ranged from 0.59 to 0.77, representing unhealthy, pre-healthy, and healthy family, which constituted 12%, 54.35%, and 33.5% of the examined population, respectively. High numbers of family fell in the pre-healthy and unhealthy categories due to limited participation in family planning program (55.11%), non-utilization of official facilities for childbirth (11.65%), lack of exclusive breastfeeding practices over 7–23 months (10.14%), and absence of weight monitoring at Posyandu (5.59%). Consequently, integrated efforts and cross-sectoral engagement are crucial for improving IKS status.&#x0D;

Analyzing the Relationship Between Family Net Income and Socio-Demographic Factors by Using a Multiple Linear Regression Analysis

The current study conducted a thorough analysis of the complex connection between net family income and various crucial socio-demographic factors, such as educational achievement, age, self-esteem, insurance coverage, and the presence of dependents in households. The primary aim of this investigation was to identify the key factors that demonstrate a favorable and statistically significant correlation with net family income. The ability to make wise decisions is of utmost importance as it can help government officials create policies, stimulate economic growth, and improve the quality of life for people and families. Previous research has largely focused on determining the primary elements that affect individual net income, with a noticeable lack of in-depth studies into the area of family net income. As a result, the research seeks to fill this gap by examining if these recognized connections also apply to the realm of family net income. The study utilized meticulous multiple linear regression analysis as its analytical framework, adopting data from the nationally representative Longitudinal Survey of Youth. The study's results highlighted the strong positive associations between education, insurance status, and the number of dependents with net family income, while not taking into account any other factors that were studied.

The humanistic perspective as “a lighthouse” for the perception of QOL/FQOL and its application

AbstractQuality of life (QOL) has become an increasingly important topic in the field of intellectual and developmental disabilities. Those efforts have included the structuring of models of QOL and more recently Family Quality of life (FQOL). The time has arrived to examine other developments and consider their place in a QOL paradigm. In this article, we have described one of the aspects of QOL that does not appear to be formally or directly structured into models of QOL, namely the role of the humanistic perspective as “a lighthouse” concept for the perception of QOL/FQOL and a vehicle for its application in practice. It is recognized that many researchers and practitioners have considered or practised a humanistic approach but the core beliefs and elements on humanism have received less specific or detailed attention in the QOL literature. This article proposes humanistic philosophy to be the basis for defining humanistic theoretical principles and guidelines for practice, and to be an important vehicle for operationalizing and applying quality of life.

Quality of Care in Pediatric Palliative Care: A Scoping Review.

Palliative care (PC) enhances the quality of life for patients and families facing life-threatening conditions. While PC is well-established for adults, not all practices apply to pediatrics. Consequently, specific quality indicators for Pediatric Palliative Care (PPC) must be identified. This scoping review aimed to identify the variables associated with the quality of care of PPC patients in Spain, focusing specifically on three areas: structure and process of care, psychological aspects of care, and care of patients approaching the end of life. The review was conducted following PRISMA-ScR guidelines. Searches were performed in the PubMed, Scopus, Web of Science, Embase, ProQuest, and Dialnet databases covering the period extending from January 2000 to May 2023. Finally, 35 studies were identified for the complete review. A total of 30 studies include variables associated with the structure and process of care, 20 include variables associated with psychological aspects of care, and 23 studies integrate variables related to patient care at the end of life. Analysis suggests that enhancing professional training in aspects such as communication with patients and families, creating intimate spaces with flexible visiting hours, increasing emotional support, promoting frequent contact with healthcare teams, and transparently communicating about illness and imminent death to both families and minors could improve the quality of PPC.

Quality of life in children with Down syndrome and its association with parent and child demographic characteristics: Parent-reported measures.

This study aims to explore the association between the quality of life (QoL) in children with Down syndrome (DS) and its relationship with demographic characteristics of both parents and children. The investigation encompasses five domains: physical and psychological well-being, autonomy and parental relationship, social well-being, and peers, as well as school and the learning environment. An online questionnaire, the KIDSCREEN-27, was used to measure the QoL of 112 families with DS in Saudi Arabia, referred to as "Parent-Reported Measures." Descriptive statistics were analyzed using the Statistical Package for Social Sciences. The study found that the QoL of children with DS showed high scores in the psychological well-being, autonomy, parental relations, school, and learning environment domains. However, the physical and social well-being and peer domains had lower scores, although still considered "good scores." Family income had a positively significant influence on all QoL domains. Specifically, higher family income was associated with better QoL outcomes, except for social well-being. Parental age was found to influence psychological well-being, while parental education and the relationship between the parent and child influenced social well-being. Lastly, the child's gender was found to have an impact on the school and learning environment domain. The study highlights the importance of understanding the impact of the demographic variability of children with DS and their parents on the QoL of their children. It emphasizes the need to address the needs of families with lower incomes and the importance of parental education and relationships with their children in improving social well-being. The findings could aid policymakers and healthcare providers in improving the QoL for families with children who have DS.

Family Functioning in Children With ADHD and Subthreshold ADHD: A 3-Year Longitudinal Study

Objective: To compare family functioning over time for elementary school children with Attention-Deficit/Hyperactivity Disorder (ADHD; N = 179) and subthreshold ADHD (ST-ADHD; N = 86), to children without ADHD (Control; N = 212). Method: ADHD was assessed using the Conners 3 ADHD Index and Diagnostic Interview Schedule for Children IV. At baseline, 18-month follow-up and 36-month follow-up, parents completed measures assessing a range of family functioning domains. Results: At baseline, the ADHD group reported higher psychological distress, less parenting self-efficacy, less parenting consistency, and more stressful life events; and both groups reported poorer family quality of life (QoL) and greater parenting anger. Trajectories were largely similar to controls (i.e., stable over time), but unlike controls, ADHD and ST-ADHD groups showed lessening parent-partner support and parenting warmth, respectively; and both groups showed worsening aspects of family QoL. Conclusion: Families of children with ADHD and ST-ADHD report persistently poor or worsening family functioning; highlighting a need for tailored psycho-social supports.

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

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

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

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

Socioenvironmental, Stigma, Risk, and Protective Factors Associated With the Health of Latino LGBTQ+ Dementia Caregivers

AbstractBackgroundCompared with caregivers of individuals with other chronic conditions, dementia caregivers experience worse emotional and physical health and are twice as likely to say their health has declined due to caregiving. Both Latino and LGBTQ+ populations are underrepresented in dementia caregiving research, though both populations report a higher prevalence of informal caregiving compared with their non‐Latino White and non‐LGBTQ+ counterparts. We aimed to examine associations between socioenvironmental, stigma, risk, and protective factors and global health among Latino LGBTQ+ caregivers of people with dementia.MethodData came from a cross‐sectional online survey using a non‐probabilistic sample of English‐proficient, Latino LGBTQ+ dementia caregivers recruited via social media (n = 103). We examined associations using bivariate analyses.ResultLatino bisexual respondents reported better global health than Latino gay and lesbian respondents. Females had better health than males and transgender respondents reported poorer health than cisgender respondents. Millennials had worse health than Generation X respondents. There were positive associations between global health and months providing care, lifetime discrimination, day‐to‐day discrimination, lifetime victimization, and microaggressions and negative associations between self‐efficacy for surrogate decision making and family quality of life. Respondents providing care to a spouse (versus a parent, another relative, or friend), those living with their care recipient, those who had been asked by a provider whether they needed help caring for themselves or their care recipient, and respondents who had requested information about financial help for their care recipient had better health. Respondents whose care recipients had advanced directives had poorer health than those who did not.ConclusionSeveral socioenvironmental, stigma, risk, and protective factors were associated with the global health of Latino LGBTQ+ dementia caregivers. Latino LGBTQ+ dementia caregivers may be exhibiting signs of resiliency, for example when it comes to discrimination and caregiving demand, and seeking help may be important for their health. Some associations may be confounded by other factors and more research is needed to understand the pathways by which these factors ultimately influence the health of Latino LGBTQ+ dementia caregivers.

Planning Indicators for Improving the Quality of Life for Patients with Kidney Failure (A Study Applied to a Sample of Patients with Kidney Failure at Al-Shifa Complex in Gaza)

The study aimed to reach planning indicators to improve the quality of life for patients with kidney failure in the Gaza Strip by determining the level of quality of economic, social, health, family, and psychological life for patients with kidney failure.. The researcher employed a social survey methodology using a sample of kidney failure patients undergoing dialysis at Al-Shifa Medical Complex, numbering (107) patients, and the researcher used the quality-of-life scale tool prepared by him. The results of the study concluded that the psychological and economic quality of life for patients with renal failure was (low), by (52.3%) for the first and by (52.6%) for the second. The social, family and health life of patients with kidney failure came (medium) with a rate of (57%) for social life, (60%) for family life, and (68.3%) for healthy life. Finally, in light of the discussion of the results, the researcher reached a set of planning indicators, including that government and private institutions work to support this group of patients, increase their monthly income to suit family needs, activate networking and coordination between institutions to provide services to the patient and meet his diverse needs. The results further highlight the need to activating guidance and counseling programs, directing them to learn problem-solving skills, professional counseling, case management, and providing psychological and social support programs

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.