Dataset Information

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

ABSTRACT: (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.

SUBMITTER: Jenaro C

PROVIDER: S-EPMC7731363 | biostudies-literature | 2020 Dec

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

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

Jenaro Cristina C Flores Noelia N Gutiérrez-Bermejo Belén B Vega Vanessa V Pérez Carmen C Cruz Maribel M

International journal of environmental research and public health 20201203 23

(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 ...[more]

PMID: 33287284

Similar Datasets

Project description:BackgroundLeprosy, podoconiosis and lymphatic filariasis (LF) may adversely affect the social, economic and psychological well-being of persons affected and their families. The objectives of this study were to assess and compare family quality of life of persons affected and their family members, explore the relationship between family quality of life and perceived stigma and activity limitations and explore what factors influence family quality of life.MethodsA cross-sectional quantitative study was conducted in the Awi zone in Ethiopia. Persons affected and their family members were selected using purposive sampling. Three questionnaires were used: the Beach Center Family Quality of Life (FQOL) scale (range 25-125, with higher scores denoting higher family quality of life), the SARI Stigma Scale (range 0-63, with higher scores denoting higher levels of stigma) and the Screening of Activity Limitation and Safety Awareness (SALSA) scale (range 0-80, with higher scores denoting more activity limitations). Data analysis consisted of simple descriptive analysis and regression analysis.ResultsA total of 95 persons affected and 117 family members were included. The overall mean of the family quality of life score was 71.7. Persons affected had significantly higher mean family quality of life scores than family members on all domains. Female gender, a smaller family size and occupation were associated with lower family quality of life. We found a mean SARI Stigma score of 22.3 and a mean SALSA score of 37.6. There was no association between the FQOL and SARI scores or between the FQOL and SALSA scores.ConclusionsFamily quality of life is an important area to address because neglected tropical diseases often affect the whole family. It is therefore important in order to provide appropriate support for persons affected and their family members. Efforts to improve the quality of life of families in which a family member is affected by leprosy, podoconiosis or LF should give priority to women and families with a smaller family size.

Project description:Individuals with disabilities are regarded as a highly vulnerable population group, particularly as far as oral health is concern. However, few studies have assessed the impact of the oral condition on the quality of life of these individuals. Therefore, the aim of this study is to expand knowledge on the oral health status of the Portuguese adults with mild intellectual disability, and to assess how the patient's oral health is related to their quality of life. A sample of 240 adults with mild intellectual disabilities linked to the Portuguese Federation for Intellectual Disability, were interviewed using a previously validated version of the Oral Health Impact Profile. An oral health examination was also conducted using three oral health indexes: Clinical Oral Health Index (COHI); Clinical Oral Care Needs Index (COCNI) and the Clinical Oral Prevention Index (COPI). Sociodemographic characteristics and dental health factors were also collected, following statistical analysis. More than half of the individuals (54,9%) presented one or more problems of major to severe impact on health (COHI level 2); only 4,6% of the individuals do not need treatment or examination (COCNI level 0) and 85% of the study sample needs measures of educational or preventive action (COPI level 1). In 76,9% of the participants, oral health had impact on the quality of life. The most affected dimensions of life were physical pain with 61,9%, followed by psychological discomfort and psychological disability with 45,1% and 45%, respectively. With relation to oral health factors and sociodemographic variables it was verified that fewer teeth and higher self-perception of need for dental treatment had a negative impact on the quality of life. On the other hand, institutionalization and an increase in at least one category in the self-perception of the oral health status had a positive impact on the quality of life. Given the high burden of oral disease and the considerable impact on quality of life found in this study, the establishment of guidelines to improve the oral health and quality of life of these individuals should be regarded as imperative.

Dataset Information

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

Publications

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

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets