Parental Quality Of Life Research Articles

How the Occupational Competence and Quality of Life in Parents of Children with Autism Spectrum Disorder Changed During the COVID-19 Pandemic: A Mixed Design Study

This study aimed to evaluate the impact of the pandemic on the occupational competence and quality of life of parents of children with autism using a mixed-methods design. It compared 220 parents of children with autism to 300 parents of neurotypical children, utilizing the Occupational Self-Assessment, Short Form 36 Health Survey, and qualitative interviews for data collection. Quantitative results revealed significant differences in occupational competence and quality of life between the two groups. Qualitative interviews underscored changes in parents’ professional and social roles, along with reductions in self-care, productivity, and recreational activities, particularly affecting parents of children with autism.

Quality of life of Retinoblastoma survivors in tertiary care eye hospital in South India.

With the increased survival of retinoblastoma (RB) patients, it is important to evaluate the quality of life (QoL) of RB survivors as well as caregivers to provide comprehensive care to the children and caregivers. This study aims to assess the QoL of survivors of RB, as perceived by parents and the self-report by patients, through a pediatric QoL (PEDs-QoL) questionnaire. The study cohort included 86 RB survivors, 86 age-matched controls, and their primary carers. PedsQL 4.0 generic core scale and structured interview were administered. QoL in physical, social, emotional, and school health was evaluated and correlated with clinical and sociodemographic parameters. The mean age of the RB survivors was 5.7 years with an M:F ratio of 1.1:1. Disease was bilateral in 79% of cases. About 45% (39/86) underwent enucleation, while others received combination therapy (16; 18%), chemotherapy (30; 34%), and radiation (1; 1%). As reported by parents, the QoL of physical health domain of RB survivors was 70.2 SD ± 27.8 and 96.15 ± 13 SD, emotional health was 72.1 ± 27.4 SD and 94.4 ± 12.5 SD, social health was 80.4 ± 24.9 SD and 98.6 ± 6.2 SD; and school health was 71.9 ± 2 6.5 SD and 96.1 ± 12.2 SD. As per the self-report perception, the QoL of physical health was 68.2 ± 27.8 SD and 96.2 ± 13 SD, emotional health was 66.2 ± 28.4 SD and 95.3 ± 12.5 SD, social health was 69.5 ± 24.9 SD and 98.7 ± 6.2 SD, and school health was 63.5 ± 26.5 SD and 95.1 ± 12.2 SD. There was a significant relationship between enucleation and QoL domains, where χ2 = 67.75, degrees of freedom (df) = 36, and P < 0.01. There was a significant association between vision in the better eye (6/18 or better = 8, 6/18-6/60 = 8, 3/60 or worse = 42) and QoL scores (χ2 = 95.36, df = 62, P < 0.01). There was a substantial association between socioeconomic status and QoL domains, where χ2= 88.5, df = 56, P < 0.01. The results of the study showed that the QoL of parents of RB survivors and self-proxy reports were negatively affected in many ways, including physical, social, emotional, and school-related dimensions. Despite the small differences, self-proxy reports indicated a lower QoL than the parents' group. The study findings indicate that there are notable correlations between enucleation and visual acuity less than 6/18, as well as socioeconomic status, with various aspects of QoL domains among individuals who have survived RB.

Exploring relationships between parental stress, coping, and psychological outcomes for parents of infants with CHD.

This study aimed to explore relationships between parental stress, coping, and outcomes for parents of infants with CHD, via observational approach reflecting domains of the Parental Stress and Resilience in CHD (PSRCHD) model. Fifty-five parents of 45 infants with CHD completed questionnaires with measures of parental stress, Problem-Focused Coping (PFC), Emotion-Focused Coping (EFC), Avoidant Coping (AC), mental health (symptoms of anxiety and symptoms of depression), post-traumatic growth (PTG) and quality of life (QoL). Demographic and infant clinical data were obtained. Parental stress showed significant small to medium positive correlations with MH and PTG, but no significant correlations with QoL. EFC and AC showed significant small to medium positive correlations with MH, and medium negative correlations with parental QoL. EFC and PFC had significant small to medium correlations with PTG. PFC and AC had significant small to medium correlations with infant QoL. Hierarchical multiple regression analyses indicated that parental symptoms of anxiety, PTG, parental QoL, infant QoL were significantly predicted by models comprising of parental stress, coping styles, and clinical controls (adjusted R2 = 13.0-47.9%, p range < 0.001-.048), with results for parental symptoms of depression falling marginally above significance (adjusted R2 = 12.3%, p = .056). Parental stress, coping styles, and length of hospital stay are related to psychological outcomes in parents of infants with CHD. Future research may use the PSRCHD framework to assess mechanisms underlying CHD parents' stress and coping experiences and investigate longitudinal relationships between parental factors and parent and child outcomes.

Effectiveness of auricular acupressure in managing sleep quality, mood, and quality of life in parents of children with cancer: A pilot randomized controlled trial

ObjectiveThis pilot study aimed to assess the feasibility and effectiveness of an auricular acupressure intervention on sleep quality, mood state, and quality of life (QOL) among parents of children with cancer. MethodsThirty-five parents were assigned to three-weeks intervention in an active auricular acupressure group (AAG) or a sham auricular acupressure group (SAG). Feasibility was assessed by adherence to the acupressure protocol. Outcomes were measured using the Pittsburgh Sleep Quality Index for sleep quality, the Profile of Mood States for mood, and the QOL short form for QOL. The data were analyzed using generalized estimating equations to identify changes over time within and between the groups. ResultsAdherence to the protocol was 78%. There were no differences between the groups in overall sleep quality or mood state, but QOL in the Physical Component Summary was better in the AAG at time 1. Parents in the AAG exhibited significantly higher levels of vigor compared to those in the SAG group. Statistically significant differences were observed in the Physical Functioning and General Health subscales, with the AAG showing better outcomes than the SAG group at time 1 and time 2, respectively. ConclusionsLikely due to the small sample size, the AAG and SAG did not differ in overall sleep quality, mood state, or QOL, but there were significant subscale differences that support intervention effectiveness. A fully powered large-scale trial is needed to determine whether this intervention would be effective for parents of children with cancer. Reducing symptom distress and improving QOL in these parents are essential, and interventions to achieve this goal must be tested. Trial registrationClinicalTrials.gov NCT05654155.

Impact of perception of illness on quality of life in juvenile systemic lupus erythematosus.

Systemic lupus erythematosus (SLE) is a chronic autoimmune disease that affects multiple organs, notably the skin, joints, and kidneys. The primary goal in managing SLE is to enhance patients' quality of life (QoL). Illness perception can influence QoL in patients with chronic disease. We assessed illness perception in juvenile SLE (jSLE) patients and its effect on patient's and parental QoL. Patients diagnosed with jSLE according to the SLICC 2012 criteria between January and November 2023 were included. Patients' illness perceptions were gaged using the brief illness perception questionnaire (B-IPQ), while patient's and parental QoL were evaluated using PedsQL and WHOQOL- BREF, respectively. The study comprised 32 patients and 32 parents, predominantly female (78.1%). Musculoskeletal involvement was the most common (65.6%), followed by mucocutaneous (59.4%), renal, and hematological involvement (50% each). Neuropsychiatric involvement was absent. The median SLEDAI-2K score at the last outpatient clinic visit, which was documented in the patient's file was 2 (0-18) and was not correlated with the B-IPQ score (r = 0.121, p = .51). A significant negative correlation was found between B-IPQ and patient QoL, indicating poorer QoL in patients with negative illness perceptions (r = -0.576, p < .001). No correlation was observed between parental QoL and B-IPQ (p => .05). Of note, 56.3% of patients had poor QoL, scoring below the PedsQL cut-off, while 43.8% of parents had poor QoL for general health, scoring below the WHOQOL-BREF cut-off for general health. Although disease perception did not correlate with disease activation in jSLE, it significantly impacted patient QoL. Enhancing patients' perceptions of jSLE may improve their overall QoL.

Raising a child with cancer: Impact on parents' health-related quality of life.

Having a child with a serious illness like cancer has a detrimental and negative impact on the parents' health-related quality of life (HRQOL). Many factors have been identified as being associated with poorer HRQOL. Acquiring knowledge about these factors is essential to enhancing the quality of life (QOL) of children as well as their parents. This study aims to analyze HRQOL in parents of children with cancer and to explore relationships between parent and child variables and parental quality of life. A total of 80 parents of children with cancer were enrolled in this cross-sectional study. To evaluate the parental HRQOL, the Short Form 36 Health Survey Questionnaire (SF-36) was used. Child age and time since diagnosis showed a positive correlation with all domains of HRQOL on Spearman's correlation. A statistically significant difference in SF-36 scores across four cancer groups was seen on the Kruskal-Wallis test. Mothers showed poorer quality of life in the physical role functioning domain as compared to fathers (U = 248, P < 0.01). The present study shows poor HRQOL for parents of children with cancer, despite learning to cope and adjust over time. Parents of children with retinoblastoma demonstrate a poorer QOL as compared to other cancer groups. The study suggests close monitoring of parents' QOL and the provision of appropriate treatment and psychosocial support for parents along with the treatment of children.

Determinants of parental quality of life and resilience: a study of families with neurodevelopmentally disordered children

Objectives The current study examined the factors that influence quality of life (QoL) and resilience of parents of children with Neurodevelopmental Disabilities (NDDs) in Ghana. Methods Using a cross-sectional design, we recruited 152 parents from support groups and schools training children with NDDs in the Accra Metropolis of Ghana. Participants responded to the Kessler Psychological Distress Scale (K10), Wagnild & Young Resilience Scale, WHO Quality of Life Measure Abbreviated version (WHOQOL-BREF), and the Brief Coping Inventory used to measure psychological distress, resilience, QoL, and coping respectively. Results Using an advanced analytical approach, results revealed both direct and mediation effects of psychological variables on QoL and resilience. Moreover, a direct effect of resilience on QoL was observed. Conclusions The findings of the current study provide insight into the resilience and QoL in parents of children with NDDS and how healthcare professionals can develop tailored interventions on coping and resilient strategies to improve the QoL of parents and their children.

Continuous nursing for infants with congenital talipes equinovarus undergoing Ponseti therapy and telehealth education for their parents via WeChat: a single center retrospective study.

This study aimed to evaluate the impact of continuous nursing and telehealth education via WeChat in infants with congenital talipes equinovarus (CTEV) undergoing Ponseti therapy on reducing complications, care burden, and improving the quality of life for parents. This is a single-center retrospective study. From July 2021 to December 2022, 44 CTEV children who undergoing Ponseti treatment in our hospital who received continuous nursing and telehealth education via WeChat (experimental group). In addition, during January 2020 to June 2021, 44 children with CTEV treated with Ponseti in our hospital who received routine nursing and traditional health education were selected as the control group. The incidence of complications, parental care burden and parental quality of life were compared between the two groups. There was no significant difference in the demographic characteristics of patients and parents between the two groups, and the groups were comparable (p > 0.05). The incidence of complications including plaster loosens, plaster falling off, pressure ulcer was significantly lower in the intervention group compared to the control group (p < 0.05). Parents in the intervention group experienced significantly lower care burdens compared to those in the control group (p < 0.05). The quality of life of parents in the intervention group was significantly higher than that for the control group (p < 0.05). There were significant differences in the incidence of complications, the care burden of parents and the quality of life of parents between the two groups. This study found that continuous nursing and telehealth education via WeChat group during Ponsetis treatment of children with CTEV can effectively reduce complications, reduce the care burden of parents and improve the quality of life of parents. This method is simple and convenient, especially worthy of application and promotion in medically underdeveloped areas.

Quality of Life Among Saudi Parents of Children With Attention-Deficit/Hyperactivity Disorder: A Cross-Sectional Study.

Background Attention-deficit/hyperactivity disorder (ADHD) in children can adversely impact parental quality of life (QoL). However, limited research exists among families in Saudi Arabia, especially in understudied regions like Jazan. This study was designed to determine the QoL in parents of children with ADHD in Jazan, Saudi Arabia. Methodology This cross-sectional study was conducted in the Jazan region of Saudi Arabia from June 2023 to December 2023. Online questionnaires were used to collect data from parents of children with ADHD residing in the country.A structured questionnaire was developed in consultation with the National Institute for Children's Health Quality (NICHQ) guidelines. The total sample size was 276. The study participants were recruited through convenient non-random snowballing sampling where the promotion of the questionnaire web link aided in reaching the required sample size of the study. Participants aged more than 18 years, residents of the Jazan area, and both genders were included. R software was used for data analysis. Results The study, involving 275 participants, revealed that 45 (16%) children were diagnosed with ADHD by doctors, with a higher prevalence among males 36 (80%). The NICHQ scale identified ADHD in 50 (18%) participants, with the predominant subtypes being inattentive 28 (56%), hyperactive/impulsive 28 (56%), and combined 19 (38%). The median QoL score was 8.6, with good QoL reported by 51.27% of parents and poor QoL by 48.73%. Gender significantly influenced QoL (p < 0.01), with 57% of males and 43% of females reporting good QoL, while 61% of females and 39% of males reported poor QoL. Oppositional defiant symptoms were significantly associated with poorer QoL (p < 0.05). There was a notable alignment between ADHD diagnoses from parental reports and the NICHQ scale. Conclusions This cross-sectional study found that parents of children with ADHD behaviors, especially those exhibiting oppositional defiant symptoms, experienced significantly lower QoL, particularly in personal fulfillment and psychosocial well-being. The findings emphasize the need for culturally tailored psychosocial interventions in Saudi Arabia to improve parental coping and QoL, benefiting overall family well-being and child outcomes.

Quality of Life, Treatment Seeking Pathways and Out of Pocket Expenditure of parents with children with Autism Spectrum Disorder (ASD) in South Delhi

Background: Autism is a neurodevelopment disorder requiring continuous preventive, curative and rehabilitative management of child. Taking care of these children leads to parents face various challenges. Lack of awareness, associated stigma, misdiagnosis, inappropriate management impacts parents' lives in various aspects. Objectives: To assess quality of life of the parents of ASD children, find out various treatment-seeking pathways adopted by them, and estimate out-of-pocket expenditure for childcare. Methodology: Cross-sectional mixed method study was conducted for assessment of quality of life of parents (WHO-QOL BREF), out-of-pocket expenditure, treatment-seeking pathways opted by parents for ASD management. Results: Quality of life of parents were found to be affected in various domains, however psychological domain was most influenced. Age of parents had an impact on social domain. Delays in the identification of symptoms, confirmation of diagnosis, Lack of availability of treatment services, and non-integration of rehabilitative services were major loopholes in the treatment seeking. The median out-of-pocket expenditure was 16% of monthly family income. Conclusion &amp; recommendation: Community awareness, medical fraternity sensitization, integration of all services for management and rehabilitation are keys towards better quality of life for parents. Financial support through health programs, NGOs, or insurance is a much-needed reform to reduce catastrophic health expenditure.

Affiliate Stigma, Resilience and Quality of Life among Parents of Children with Autism Spectrum Disorder in Two Public Hospitals in Kelantan, Malaysia.

Often, the indirect impact of autism spectrum disorder (ASD) presents the family with significant challenges. One of these challenges is affiliate stigma due to parental affiliation with their child. This study aimed to explore affiliate stigma, resilience and quality of life (QoL) among parents of children with ASD. Cross-sectional study of 144 parents of children with ASD were recruited from two main tertiary hospitals in Kelantan, Malaysia, a developing country in Southeast Asia. Pearson correlation was used to examine the relationship between parental affiliate stigma, resilience and QoL. Simple and multiple linear regression analyses were used to identify the significant associated factors of affiliate stigma, resilience and QoL. Correlational analyses revealed that perceived affiliate stigma demonstrated an inverse relationship with resilience and QoL. Additionally, resilience had a positive relationship with QoL. Regression analyses revealed that the father's employment status, the mother's level of education, having a disability card, the child's age at ASD diagnosis, comorbidities of the child and ASD severity perceived by parents were associated with parental affiliate stigma, resilience and QoL. Study findings highlight the contribution of socio-demographic characteristics of children with ASD and their families in the determination of affiliate stigma, resilience and QoL.

Exploring quality of life, discrimination, and knowledge of parents of ADHD children in Saudi Arabia: A cross-sectional study.

Attention-deficit hyperactivity disorder (ADHD) is the most common neurodevelopmental disorder in childhood. This study investigates the quality of life (QoL) of parents of children with ADHD, the discrimination they encounter, and their sources of information about the disorder. This cross-sectional study was conducted using an online questionnaire through Google Forms from March to April 2023. Study participants were recruited using a convenient sampling technique from patient records in 4 regions of Saudi Arabia. The questionnaire was sent through commonly used social media. QoL was assessed through the validated Arabic version of the World Health Organization Quality of Life Instrument, Short Form questionnaire. A total of 100 participants were recruited for this study. Most of the participants were from the southern region (80%, n = 80), 66.0% (n = 66) were mothers, 66.0% (n = 66) were married and 64% (n = 64) had a college degree. The mean scores of the physical, psychological, mental, environmental, total scales, and general QoL were (57.18 ± 13.67, 62.58 ± 17.49, 63.33 ± 23.12, 23.07 ± 12.87, 51.54 ± 14.34, 3.69 ± 1.06, respectively). Half of the population studied experienced discrimination with no significant differences between mothers and fathers (64% vs 68%, P = .833). The main source of information on ADHD was the Internet (49%) followed by schools (11%), and relatives (10%). Fifty-four percent of the participants have participated in workshops or seminars on neurodevelopmental disorders and 39.0% believed that schools and institutions are sufficiently equipped to support children with ADHD. ADHD had a profound impact on the QoL of parents, with a substantial portion facing discrimination due to their child condition. Additionally, parents showed a strong desire to acquire more information about ADHD, highlighting the need for a comprehensive understanding and support surrounding this condition.

Daily Time-Use Patterns and Quality of Life in Parents: Protocol for a Pilot Quasi-Experimental, Nonrandomized Controlled Trial Using Ecological Momentary Assessment.

The gender gap in time use and its impact on health and well-being are still prevalent. Women work longer hours than men when considering both paid and unpaid (eg, childcare and chores) work, and this gender disparity is particularly visible among parents. Less is known about factors that could potentially mediate or moderate this relationship (eg, work-family conflict and gender role beliefs). Ecological momentary assessment (EMA) allows for the documentation of changes in momentary internal states, such as time use, stress, or mood. It has shown particular validity to measure shorter-term activities (eg, unpaid work) and is thus useful to address gender differences. The feasibility of the daily EMA surveys in a parent sample will be examined. The associations between time use, well-being, and stress will be examined, along with potential moderating and mediating factors such as gender, gender role beliefs, and work-family conflict. Finally, the act of monitoring one's own time use, well-being, and stress will be examined in relation to, for example, the quality of life. We conducted a quasi-experimental, nonrandomized controlled trial with 3 data collection methods, namely, online questionnaires, EMA surveys, and qualitative interviews. The intervention group (n=64) will participate in the online questionnaires and EMA surveys, and a subsample of the intervention group (n=6-17) will also be invited to participate in qualitative interviews. Over a period of 1 week, participants in the intervention group will answer daily EMA surveys (4 times per day). In contrast, the control group (n=17) will only participate in the online questionnaires at baseline and after 1 week. The following constructs were surveyed: sociodemographic background (eg, age, gender, and household composition; baseline questionnaire); mediators and moderators (eg, gender role beliefs and work-family conflict; baseline and follow-up questionnaires); well-being, quality of life, and trait mindfulness (baseline and follow-up questionnaires); momentary activity and well-being, as well as state mindfulness (EMA); and feasibility (baseline and follow-up questionnaires as well as interviews). We anticipate that participants will regard the daily EMA as feasible. Particular daily time-use patterns (eg, high paid and unpaid workload) are expected to be related to lower well-being, higher stress, and health-related quality of life. These associations are expected to be moderated and mediated by factors such as gender, gender role beliefs, work-family conflict, and social support. Participants in the intervention group are expected to show higher values of mindfulness, well-being, health-related quality of life, and lower stress. Patient recruitment started in November 2023 and ended in mid April 2024. Data analysis commenced in mid April 2024. This study aims to provide valuable insights into the feasibility of using EMAs and the potential benefits of activity tracking in various aspects of daily life. Open Science Framework 8qj3d; https://osf.io/8qj3d. PRR1-10.2196/54728.

Quality of Life and Its Associated Correlates of Parents of Children on the Autism Spectrum in Singapore.

This cross-sectional study aimed to assess Quality of life (QoL) of parents of children on the autism spectrum in Singapore and identify its associated factors. Parents of children (age ≥ 5years) completed the Quality of Life in Autism scale which measures parental self-rated QoL (higher scores denote greater QoL), and the perceived impact of the child's autism-related behaviors on parents (higher scores denote lesser impact). Information on the child's degree of autism (measured by the Social Responsiveness Scale, second edition [SRS-2]), community and social participation and cognitive and adaptive functioning were also obtained. Participants were 86 parents with mean child age 6.3years (SD 1.0). Univariate analysis results revealed greater participation in community and social events to be two modifiable factors associated with higher parental QoL. However, these factors were not found to be significant in the multivariate model. Higher autism features (represented by higher parent-rated SRS scores) was associated with a greater perceived impact of the child's behaviors by parents in both univariate and multivariate analyses. Of note, child's cognitive or adaptive skills were not significantly associated with either QoL measure. Equipping parents to handle autism-related behaviors can be useful to reduce their impact on parental QoL. Facilitating community participation for these children may positively influence caregiver QoL as well.

Navigating the complexities of care: exploring quality of life among parents-caregivers of children with neurological impairments in Bulgaria

ABSTRACT This study delves into the quality of life (QoL) experiences of parents caring for children with neurological impairments in Bulgaria. Employing the World Health Organization Quality of Life-BREF (WHOQOL-BREF) instrument, a cross-sectional analysis was conducted on parents of neurologically impaired children (n = 52) and parents of healthy children (n = 43). The study uncovers the intricate interplay of physical, psychological, social, and environmental dimensions that contribute to caregivers’ well-being. Despite the challenges parents of neurologically impaired children face, including the delicate balance between caregiving and employment, financial strains, and the need for culturally sensitive support services, they demonstrate remarkable adaptive capacities. The findings advocate for a multifaceted approach in addressing the challenges to improve the overall QoL for parents nurturing children with disabilities in Bulgaria.

The relationship between the caregiver burden and quality of life in parents of Turkish children with anorectal malformation or Hirschsprung's disease

BackgroundAnorectal malformation (ARM) or Hirschsprung's disease (HD) in children impact on parents' burden of care and quality of life (QoL). The aim of this study was to investigate the relationship between caregiver burden and QoL in parents of children with ARM or HD. Design and methodsThis cross-sectional study was conducted with 51 parents who completed the Zarit Burden Inventory (ZBI) and World Health Organization Quality of Life Scale-Short Form Turkish Version (WHOQOL-BREF-TR). ResultsThe mean (±SD) ZBI score was 33.6 (±12.7), and 47.1% of parents (n = 24) perceived their caregiver burden as mild, 31.4% (n = 16) as moderate, and 3.9% (n = 2) as severe. According to the multivariate linear regression, associated anomalies (β1 = 5.912), family income (β1 = −6.007), stoma care (β1 = 8.287), and diagnosis were identified to be significant determinants of caregiver burden. A negative, moderate, and significant relationship was identified between the ZBI scores and the physical domain (r = −0.417, p < .01), psychological domain (r = −0.421, p < .01), social relations domain (r = −0.398, p < .01), and environmental domain (r = −0.495, p < .01) scores of the WHOQOL-BREF-TR. ConclusionsThe mothers perceived their caregiver burden as mild. However, a significant number of parents suffer from moderate to heavy caregiver burden. An increase in the caregiver burden of parents reduces their quality of life. Practice implicationsHeightened awareness of the potential for caregiver burden and its association with quality of life among parents of children with ARM and HD may contribute to improved.

Parental Stress and Quality of Life in Parents of Young Children with Autism

AbstractParents of children with ASD are at risk for chronic stress due to challenging parenting. It is unknown whether stress is already present in early parenthood, similar for mothers and fathers and if this impacts quality of life (QoL). Parental stress and QoL were assessed in 56 mothers and 51 fathers of young children (aged 3 to 7) with autism. Associations between parental stress (OBVL) and QoL (WHOQoL-BREF) were examined. Parents of young children with ASD appear to have high parental stress from conflicting feelings towards their child and from difficulties with parenting. Mothers have higher stress from feeling confined in their motherly role than fathers compared to the OBVL norm population. Both mothers and fathers have a low QoL. Increased maternal conflicting feelings towards the child associated with lower psychological QoL, while high maternal feelings of role confinement associated with low physical QoL. Increased paternal conflicting feelings towards their child related to lower physical and social QoL, while fathers with more parenting difficulties reported less satisfaction with their psychological and environmental wellbeing. Thus, already at young age, parenting children with ASD is a major challenge for both mothers and fathers.

Parental cancer: mediating and moderating roles of psychological inflexibility in the links between illness severity and parental quality of life and family outcomes

The challenges of parental cancer while caring for young offspring are often neglected by researchers and healthcare providers. Focusing on parents with cancer, this cross-sectional study examines the mediating and moderating roles of a malleable risk factor, psychological inflexibility, in the relationships between perceived illness severity and parental quality of life (QoL) and family outcomes. Psychological inflexibility was conceptualized using the acceptance and commitment therapy (ACT) framework. A total of 86 parents with cancer caring for young offspring (aged 11–24 years; M = 17.94, SD = 3.68) completed a survey that assessed psychological inflexibility, parental mental and physical health QoL, family outcomes (family functioning, parenting concerns, and openness to discuss cancer), socio-demographics, and illness variables. Mediation analyses indicated that higher perceived illness severity was associated with higher levels of psychological inflexibility, which in turn were related to higher detrimental impacts on parental QoL and family outcomes. Results of moderation analyses were non-significant. Findings highlight the detrimental impacts of illness severity on psychological inflexibility, suggesting that it is a psychosocial risk factor in parents dealing with cancer. ACT-based interventions which foster psychological flexibility are likely to enhance parental QoL and family outcomes.

Developing the first Arabic quality of life for parents of children with autism (QoLA) scale: translation, cultural adaptation and psychometric validation

PurposeIn this research, the first Arabic quality of life (A-QoLA) measure for the mothers and fathers of children with autism is translated and validated. While there have been several translations of the QoLA scale, to the best of our knowledge, there are no Arabic version of this scale.MethodTo translate and validate the QoLA, 407 family members (mostly parents) participated in this research. Item total correlation and confirmatory factor analysis (CFA) were used for the scale validation process.ResultsThe results show that like QoLA, all the items in Part A of the A-QoLA were positively correlated with the total score except items 2, 4, 17, and 22 (which were deleted). In addition, the Part B outcome of the item total correlation showed that all the items had a positive correlation with the overall score. The CFA results show high internal validity and consistency confirmed the two-domain structure for QoLA after it was translated into Arabic.ConclusionOur results have very important implications as autism is quite common in the Arab world, and the scale can be used across several Arabic-speaking countries to understand the impact of autism on families.

A Pilot Study of a Family Management Program for Parents of Children with Acute Lymphoblastic Leukemia

ObjectivesThe aim of this completed pilot study was to evaluate the feasibility of implementing a family management program (FMP) for parents of children with acute lymphoblastic leukemia (ALL). Data SourcesA convenience sample of 11 parents of preschool-aged children with ALL were recruited from an ambulatory chemotherapy-care clinic at a tertiary hospital in Thailand. Participants received three FMP sessions over 3 weeks. The FMP is based on two established family programs (ie, FMP-style framework and building on family strengths) and reviewed literature. The following measures were used to evaluate parents’ responses at baseline, postintervention, and follow-up: Family Management Measure, Beach-Center Family Quality-of-Life Scale, and Pediatric Quality of Life Inventory. Data were analyzed using one-way repeated-measures analysis of variance. ConclusionThe study results provide promising evidence that the FMP is feasible and improves family management and quality of life for parents of enrolled children with ALL. Implications for Nursing PracticeEducating pediatric oncology nurses and other healthcare professionals to replicate the FMP may help to provide better family management, and child quality of life support to future parents and other family members of young children diagnosed with ALL. This support should focus on educating parents about the potential effects of caring for a child with ALL on the family and fostering positive relationships within the family and offering guidance on effective family communications and decision-making processes.