The goals of this research are (a) to explore how Spanish families understand FQoL by developing 2 different measurement tools for families with a member with ID under and over 18 years old, and (b) to provide 2 diagnostic instruments that will be useful for designing action plans.Method The study comprised 4 stages: (a) focus groups, (b) expert assessment, (c) pilot study, and (d) normalisation and standardisation. The data were collected in 5 regions in Spain, and 1,205 families with a member with ID took part in the normalisation and standardisation of the scales.Results Both FQoL scales were consistent and have valid psychometric characteristics. ConclusionsThe scales have a diagnostic purpose for use in designing action plans aimed at producing significant changes in families' lives. Keywords: family quality of life, family needs, intellectual disability, family quality of life scale Family quality of life 3 IntroductionIn recent decades, researchers, professionals and families themselves have shown growing concern with the quality of life (QoL) of persons with intellectual disability (ID) and their families. Although research on the QoL of persons with ID has a long history and has generated a large corpus of results with consequences for both theory and practical applications for improving the lives of these people (e.g., Brown, 1997; Cummins, 1996; Cummins, 1997a; Keith & Schalock, 2000; Schalock, 1996; Schalock, 1997;Schalock et al., 2002; Schalock, Gardner, & Bradley, 2007;Schalock & Verdugo, 2002), the same has not happened with regard to family quality of life (FQoL).In comparison with research on the QoL of persons with ID, research on FQoL is still limited (Summers et al., 2005) and recent. Nevertheless, there is widespread agreement on the importance of this new construct both for improving families' abilities to cope with a child with ID and for assessing the possible impact of the services and supports these families receive, which represent a significant investment in terms of financial and professional resources. To address these issues, various research teams have put considerable effort into conceptualising, measuring, and improving the quality of the families' lives (Aznar & Castañón, 2005; Brown et al., 2006; Hoffman, Marquis, Poston, Summers, & Turnbull, 2006; Hu, Summers, Turnbull, & Zuna, 2011; Isaacs et al., 2007). This work has led to the development of three scales for measuring FQoL, including different domains: (a) the Beach Center Family Quality of Life Scale (Beach Center FQOL Scale; Hoffman, Marquis, Poston, Summers, & Turnbull, 2006); (b) the Family Quality of Life Survey (FQOLS-2006; Brown et al., 2006; Isaacs et al., 2007); and (c) the Latin American Family Quality of Life Scale (Latin American FQoL Scale; Aznar & Castañón, 2005). Family quality of life 4The research presented here is in line with these initiatives and seeks to provide Spanish professionals and families with instruments based on what they understand by FQoL, their values and beliefs, and is sensitive ...
Researchers, professionals, and families have shown increasing concern about the quality of life of people with intellectual disabilities (ID) and their families. Due to the growing interest in family quality of life (FQoL) as a key issue for social policy in the ID field, the aim of this research was to explore FQoL in Catalonia (Spain). The Spanish Family Quality of Life Scales (CdVF-E) were completed by 144 families using the version for households with children up to 18 years of age and by 122 families using the version for households with adult children over 18 years of age. The results show that FQoL is higher in families with adult children over 18 years of age than in families with children up to 18 years of age, and there are differences among domains in both groups. Likewise, there are relations between the scores in the scales and some demographic characteristics such as marital status, level of education, employment status, and family income, particularly in households with children under 18 years of age.
Early intervention (EI) has been shown to be an essential resource for meeting the needs and priorities of children with intellectual and developmental disability and their families. The objective of this study was to examine (a) the perceived quality of life of families attending EI centers in Spain and (b) its relationship with characteristics of the children and their families. The Family Quality of Life Scale was administered to a sample of 281 families with children aged 0 to 6 years attending an EI center. To determine the relationship between family quality of life (FQoL) and the family and children's characteristics, Student's t test and one-way ANOVA were performed. Likewise, effect size was measured in those groups. The results show that the emotional well-being of families was high, although they were concerned about health and financial well-being. The perceived FQoL varies depending on income, family type, and severity of the child's disability. Implications for professional practice in EI centers are presented.
The aim of the study was to examine the relation between demographic variables, parental characteristics, and cognitive, language and motor skills development in children with intellectual disabilities (ID). A sample of 89 children with ID, aged 20–47 months, completed the Bayley Scales of Infant Development to measure cognitive, motor, and linguistic development. Parents were administered questionnaires about demographic information and parental anxiety, depression, parental stress, conjugality and familial functioning. Parenting behaviors (affection, responsiveness, encouragement, and teaching) were observed using the Spanish version of PICCOLO (Parenting Interactions with Children: Checklist of Observations Linked to Outcomes). A bivariate analysis showed that cognitive development in infants was significantly related to the mother’s and father’s responsiveness, and to the father’s teaching scores. Infant language development was related to a variety of maternal factors (educational level, anxiety, depression, maternal responsiveness) and to the father’s teaching scores. None of the factors were statistically related to child motor development. A multivariate regression analysis indicated that children’s cognitive development can be predicted by a linear combination of maternal responsiveness and paternal teaching scores. Language development can be predicted by a linear combination of maternal anxiety and responsiveness, and paternal teaching scores. The present study provides evidence of the importance of paternal involvement for cognitive and language development in children with intellectual disabilities, and contributes to the increasing literature about fathering. Gaining knowledge about parental contributions to children’s development is relevant for improving positive parenting in early intervention programs.
The aims of this study were to analyze the interactions of mothers and fathers with their children with intellectual disabilities, focusing on certain parental behaviors previously identified as promoting child development, and to explore the relations between parenting and some sociodemographic variables. A sample of 87 pairs of mothers and fathers of the same children were recruited from Early Intervention Centers. The children (58 male and 29 female) were aged 20-47 months. Most of the families (92%) were from the province of Barcelona (Spain), and the remaining 8% were from the other provinces of Catalonia (Spain). Parenting behaviors, divided into four domains (Affection, Responsiveness, Encouragement, and Teaching) were assessed from self-recorded videotapes, in accordance with the validated Spanish version of the PICCOLO (Parenting Interactions with Children: Checklist of Observations Linked to Outcomes). Parents were administered a sociodemographic questionnaire. The results revealed strong similarities between mothers' and fathers' parental behaviors. Mothers and fathers were more likely to engage in affectionate behavior than in teaching behavior. Only maternal teaching presented a significant positive relation to the child's age. With respect to the child's gender, no differences were observed in mothers' parenting. Conversely, fathers scored significantly higher in Responsiveness, Encouragement and Teaching (and had higher total parenting scores) when interacting with boys. The severity of the child's ID had a statistically significant effect only on fathers' Teaching, which showed lower mean scores in the severe ID group than in the moderate and mild ID groups. Teaching also presented a significant positive relation to mother's age, but father's age was not related to any parenting domain. Mothers with a higher educational level scored significantly higher in Encouragement and Teaching, and the fathers' educational level was not significantly related to any parenting domain. Mothers' and fathers' Teaching, and fathers' Responsiveness, Encouragement and total parenting scores, presented a significant positive relation to family income. Finally, mothers spent more time in childcare activities than fathers, particularly on workdays. Our main conclusion is that mothers and fathers show very similar strengths and weaknesses when interacting with their children with intellectual disabilities during play.
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