Dataset Information

Parental Satisfaction with Caregiving across the Life Span to Their Children with Developmental Disabilities: A Cross-Sectional Study in Iran.

ABSTRACT: The increased life expectancy of adult individuals with developmental disabilities and the likelihood of parents having to continue caregiving into their old age is an emerging international issue which deserves investigation, especially concerning satisfaction with caregiving. Moreover, this needs to be assessed in different cultures in order to create a better understanding of how families are best supported in their lifelong caregiving. A sample of 408 parents was gathered in six cities across Iran with a son or daughter who had a confirmed developmental disability. Self-completed measures of satisfaction and stress were obtained along with demographic details of the child and family. Satisfaction with caring was generally positive and was similar for mothers and fathers, for older as well as for younger parents; and between different types of developmental disabilities. However, both personal and child satisfaction decreased when parents reported increased stress and when caring for teenage and adult offspring and those with behavior problems. Parents need to receive support to sustain their motivation and satisfaction with caregiving if their quality of life and that of their children with disabilities is to be maintained and enhanced across their lifespan.

SUBMITTER: Samadi SA

PROVIDER: S-EPMC7084509 | biostudies-literature | 2020 Feb

REPOSITORIES: biostudies-literature

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Parental Satisfaction with Caregiving across the Life Span to Their Children with Developmental Disabilities: A Cross-Sectional Study in Iran.

Samadi Sayyed Ali SA McConkey Roy R Abdollahi Boghrabadi Ghasem G

International journal of environmental research and public health 20200229 5

The increased life expectancy of adult individuals with developmental disabilities and the likelihood of parents having to continue caregiving into their old age is an emerging international issue which deserves investigation, especially concerning satisfaction with caregiving. Moreover, this needs to be assessed in different cultures in order to create a better understanding of how families are best supported in their lifelong caregiving. A sample of 408 parents was gathered in six cities acros ...[more]

PMID: 32121366

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Project description:BACKGROUND:Previous research shows that parental unemployment is associated with low life satisfaction in adolescents. It is unclear whether this translates to an association between national unemployment and adolescent life satisfaction, and whether such a contextual association is entirely explained by parental unemployment, or if it changes as a function thereof. For adults, associations have been shown between unemployment and mental health, including that national unemployment can affect mental health and life satisfaction of both the employed and the unemployed, but to different degrees. The aim of this paper is to analyse how national unemployment levels are related to adolescent life satisfaction, across countries as well as over time within a country, and to what extent and in what ways such an association depends on whether the individual's own parents are unemployed or not. METHODS:Repeated cross-sectional data on adolescents' (aged 11, 13 and 15?years, n =?386,402) life satisfaction and parental unemployment were collected in the Health Behaviour in School-aged Children (HBSC) survey, in 27 countries and 74 country-years, across 2001/02, 2005/06 and 2009/10 survey cycles. We linked this data to national harmonised unemployment rates provided by OECD and tested their associations using multilevel linear regression, including interaction terms between national and parental unemployment. RESULTS:Higher national unemployment rates were related to lower adolescent life satisfaction, cross-sectionally between countries but not over time within countries. The verified association was significant for adolescents with and without unemployed parents, but stronger so in adolescents with unemployed fathers or both parents unemployed. Having an unemployed father, mother och both parents was in itself related to lower life satisfaction. CONCLUSION:Living in a country with higher national unemployment seems to be related to lower adolescent life satisfaction, whether parents are unemployed or not, although stronger among adolescents where the father or both parents are unemployed. However, variation in unemployment over the years did not show an association with adolescent life satisfaction.

Project description:BackgroundSELENON(SEPN1)-related myopathy (SELENON-RM) is a rare congenital neuromuscular disease characterized by proximal and axial muscle weakness, spinal rigidity, scoliosis and respiratory impairment. No curative treatment options exist, but promising preclinical studies are ongoing. Currently, natural history data are lacking, while selection of appropriate clinical and functional outcome measures is needed to reach trial readiness.ObjectiveWe aim to identify all Dutch and Dutch-speaking Belgian SELENON-RM patients, deep clinical phenotyping, trial readiness and optimization of clinical care.MethodsThis cross-sectional, single-center, observational study comprised neurological examination, functional measurements including Motor Function Measurement 20/32 (MFM-20/32) and accelerometry, questionnaires, muscle ultrasound, respiratory function tests, electro- and echocardiography, and dual-energy X-ray absorptiometry.ResultsEleven patients with genetically confirmed SELENON-RM were included (20±13 (3-42) years, 73% male). Axial and proximal muscle weakness were most pronounced. The mean MFM-20/32 score was 71.2±15.1%, with domain 1 (standing and transfers) being most severely affected. Accelerometry showed a strong correlation with MFM-20/32. Questionnaires revealed impaired quality of life, pain and problematic fatigue. Muscle ultrasound showed symmetrically increased echogenicity in all muscles. Respiratory function, and particularly diaphragm function, was impaired in all patients, irrespective of the age. Cardiac assessment showed normal left ventricular systolic function in all patients but abnormal left ventricular global longitudinal strain in 43% of patients and QRS fragmentation in 80%. Further, 80% of patients showed decreased bone mineral density on dual-energy X-ray absorptiometry scan and 55% of patients retrospectively experienced fragility long bone fractures.ConclusionsWe recommend cardiorespiratory follow-up as a part of routine clinical care in all patients. Furthermore, we advise vitamin D supplementation and optimization of calcium intake to improve bone quality. We recommend management interventions to reduce pain and fatigue. For future clinical trials, we propose MFM-20/32, accelerometry and muscle ultrasound to capture disease severity and possibly disease progression.

Dataset Information

Parental Satisfaction with Caregiving across the Life Span to Their Children with Developmental Disabilities: A Cross-Sectional Study in Iran.

Publications

Parental Satisfaction with Caregiving across the Life Span to Their Children with Developmental Disabilities: A Cross-Sectional Study in Iran.

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