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- Psychometric Properties of the Portuguese Version of the Iceland-Family Perceived Support Questionnaire in Parents of Children and Adolescents with Chronic ConditionPublication . Lemos, Sara; Andrade, Luísa; Barbieri-Figueiredo, MC; Martins, Teresa; Lima, LigiaAbstract: The support from nurses perceived by family members of children with chronic conditions has been shown to be a protective factor at different levels in a family’s health. As such, nurses need to have instruments that assess this perception to increase the quality of the care provided to those families. This methodological study aimed to analyze the psychometric properties of the Portuguese translation of the Iceland-Family Perceived Support Questionnaire (ICE-FPSQ) in parents of children/adolescents with chronic conditions. The ICE-FPSQ was administered to 237 parents recruited from the day hospital and outpatient services of four hospitals in Northern Portugal. Cronbach’s alpha reliability coefficients for the Total Scale, Cognitive Support, and Emotional Support subscales were excellent (α = 0.96, α = 0.93, α = 0.96, respectively). Reasonable fit indexes were found by confirmatory factor analysis (χ 2/df = 2.799; CFI = 0.960; PCFI = 0.791, and RMSEA = 0.087), indicating a good model fit to the original structure. The ICE-FPSQ is a valid and reliable instrument to measure perceived support.
- Psychometric properties of the European Portuguese version of the Pediatric Quality of Life Inventory™ family impact modulePublication . Lima, Ligia; Lemos, Sara; Barbieri-Figueiredo, M. C.; Martins, Teresa; Andrade, LuísaPurpose This study aims to assess the psychometric properties of the European Portuguese version of the Pediatric Quality of Life Inventory™ Family Impact Module in parents of children/adolescents with chronic health conditions. Design and Methods The European Portuguese version of the Pediatric Quality of Life Inventory™ Family Impact Module was administered to 237 parents of children/adolescents with chronic disease and/or chronic disorder. Participants were recruited from the day hospital and/or outpatient services of four hospitals in Northern Portugal, the majority being mothers (87.3%) aged between 31 and 50 years (86.9%). The questionnaire was administered online through the REDCap platform. The hierarchical factor model of the Pediatric Quality of Life Inventory™ Family Impact Module proposed by Varni and colleagues was tested. Results Confirmatory Factor Analysis indicated good model fit, with the following indices (χ2/gL = 2.19; comparative fit index [CFI] = 0.90; root mean square error of approximation [RMSEA] = 0.07 immune cell [IC] 90% = 0.06−0.07). Internal consistency values were high (parent quality of life subtotal, α = .96; family functioning subtotal, α = .92; total score, α = .96). Practice Implications The European Portuguese version of the PedsQL™ FIM is a reliable and valid measurement tool for nurses to assess the impact of the child/adolescent chronic conditions on family's quality of life and to develop interventions to improve their well-being.
- Psychometric Properties of the Portuguese Version of the Iceland-Family Perceived Support Questionnaire in Parents of Children and Adolescents with Chronic ConditionPublication . Lemos, Sara; Andrade, Luísa; Barbieri-Figueiredo, M. C.; Martins, Teresa; Lima, LigiaThe support from nurses perceived by family members of children with chronic conditions has been shown to be a protective factor at different levels in a family’s health. As such, nurses need to have instruments that assess this perception to increase the quality of the care provided to those families. This methodological study aimed to analyze the psychometric properties of the Portuguese translation of the Iceland-Family Perceived Support Questionnaire (ICE-FPSQ) in parents of children/adolescents with chronic conditions. The ICE-FPSQ was administered to 237 parents recruited from the day hospital and outpatient services of four hospitals in Northern Portugal. Cronbach’s alpha reliability coefficients for the Total Scale, Cognitive Support, and Emotional Support subscales were excellent (α = 0.96, α = 0.93, α = 0.96, respectively). Reasonable fit indexes were found by confirmatory factor analysis (χ2/df = 2.799; CFI = 0.960; PCFI = 0.791, and RMSEA = 0.087), indicating a good model fit to the original structure. The ICE-FPSQ is a valid and reliable instrument to measure perceived support.
- Quality of life and family management of paediatric chronic condition amidst the COVID-19 pandemicPublication . Andrade, Luísa; Lemos, Sara Raquel Machado; Barbieri-Figueiredo, MC; Lima, LigiaPurpose: This 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 methods: A 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. Results: The 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. Conclusions: Parents 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 implications: These 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.