What Factors Explain Family Quality of Life in Neurodegenerative Diseases?

Neurodegenerative diseases (NDs) are a major cause of dependency among elderly and affect the entire family unit. However, the literature has paid little attention to Family Quality of Life (FQOL) and focused on the patient and the main caregiver. The aim was to analyze the FQOL of people with NDs from a systemic perspective and to identify associated factors. A sample of 300 family caregivers from the cross-border region of Spain-Portugal completed the FQOLS - ND, which collected FQOL global and domain-level scores in terms of attainment and satisfaction. The highest rates of FQOL were obtained for the domain Family relations and the lowest for Support from services. The level of perceived barriers to social-health services emerged as the strongest predictor of global FQOL in all models. It is essential to reduce the obstacles to access social-health services and provide the family with resources according to their needs, especially in rural areas.

Transcultural adaptation and psychometric properties of Family Quality of Life Survey for caregivers of people with neurodegenerative disease: a study of Spanish families who live in the rural Spain-Portugal cross-border.

BACKGROUND: Neurodegenerative diseases (NDs) are one of the main causes of disability and dependence that have a great impact both on the quality of life of people with disabilities and their families. A majority of people with NDs receive care and support from the family, but there is no tool in Spain with which to measure whole-family QOL. The aim of this study was the translation, cultural adaptation, and validation of the FQOLS-Dementia into Spanish to assess FQOL among family members of individuals with NDs who live in the Spain-Portugal cross-border area. METHOD: The Spanish version was translated and adapted following the international guidelines for cross-cultural adaptation tests. A sample of 300 family caregivers was interviewed, applying an adapted version of the Family Quality Survey (FQOLS-Dementia). Confirmatory factor analysis was performed to validate the factor structure, and convergent validity was examined with Pearson's correlation coefficients of the global FQOL with the domains. Internal consistency reliability was determined using Cronbach's alpha. RESULTS: The domain structure of the FQOLS-ND showed a good fit. In the convergent validity, it was found that the total score and the subscale domain scores were associated with the global FQOL score, except for the Values domain. Internal consistency of nine domain subscales was strong (α = 0.80 to 0.91), and excellent for the total FQOL (α = 0.85) and the global FQOL (α = 0.87). CONCLUSION: The FQOLS-ND presented good validity and reliability in caregiver families with individuals with ND, so its application shows its usefulness in detecting areas of improvement and intervention strategies for FQOL in the Spain-Portugal cross-border area.

The Adaptation and Psychometric Properties of the Kid-KINDLR for Hospitalized Children in Chile.

PURPOSE: The impact of hospitalization on a child's well-being leads one to consider the health-related quality of life (HRQoL) measure as a fundamental aspect of pediatric care. The aims of the study were to adapt the Spanish version of the Kid-KINDL® to hospitalized children in Chile, to obtain a reduced version of the instrument and to analyze the psychometric properties of the reduced version. DESIGN AND METHODS: An expert committee and interviews were carried out for the cross-cultural adaptation process. An exploratory factor analysis was conducted to examine the validity of the construct and to select the items for the reduced version. Cronbach's alpha was used to estimate the internal consistency of the adapted version of the Kid-KINDL® and the reliability of each component. Convergent validity was based on correlations with a pain scale. RESULTS: This adapted and shorter instrument, similar to the original version, comprises five components that include the principal dimensions of HRQoL. Evaluating the School dimension in hospitalized children was considered inappropriate in Chilean public hospitals. The study replicates the relationship found between a child with high pain and low reported HRQoL. CONCLUSIONS: The hospitalization process impacted the children's perceptions of their HRQoL. The reduced version of the Kid-KINDL® was found to be a valid instrument for assessing children's HRQoL in hospital units. PRACTICE IMPLICATIONS: Finding effective ways to measure HRQoL and ultimately mitigate barriers and foster resilience are important clinical and research priorities in the pursuit of HRQoL for hospitalized children and their families.

Mental Health and Proximal Stressors in Transgender Men and Women.

This paper explores the subjective perception of some personal and interpersonal aspects of the lives of transgender people and the relationship they have with their mental health. One hundred and twenty transgender people (60 men and 60 women) participated in semi-structured interviews. Following quantitative methodology, analysis highlighted that social loneliness is the main predictor of lower levels of mental health (anxiety and depression) for both genders and recognized romantic loneliness as the strongest factor among transgender men. In both cases, higher levels of loneliness were associated with lower levels of mental health. The results have guided us to improve institutional and social responses and have provided an opportunity to promote the mental health of transgender people.

The influence of participation in leisure activities on quality of life in Spanish children and adolescents with Cerebral Palsy.

Participation is an important modifiable quality of life (QOL) determinant and a key outcome measure. The aim of this study was to confirm if participation in leisure activities affects the QOL domains in children and adolescents with Cerebral Palsy (CP) in Spain. A total of 206 children and adolescents with CP (and their parents), 115 boys and 91 girls, mean age of 11.96 years (SD=3.00; range 8-18 years) participated in the study. Distribution according to the Gross Motor Function Classification System (GMFCS) was 24.3% Level I, 18% Level II, 18% Level III, 12.6% Level IV, and 27.2% Level V. Participation in leisure activities was assessed using the Spanish version of Children's Assessment of Participation and Enjoyment (CAPE) and QOL using the KIDSCREEN parents' version. Diversity, intensity and enjoyment of participation explained the levels of QOL in the Physical well-being, Psychological well-being, Autonomy, Parent relation & home life and Social support & peers domains, independently of gender, age and level of impairment (motor and intellectual). We also found that intensity and enjoyment of participation in informal activities had more influence on the different QOL domains. The most influenced domain by the enjoyment of participation in all domains and types of CAPE activities was Psychological well-being. The participation in leisure activities had a positive effect on the QOL of the Spanish children and adolescents with CP.

Heterosexual romantic relationships inside of prison: partner status as predictor of loneliness, sexual satisfaction, and quality of life.

This study investigated the differences in loneliness, sexual satisfaction, and quality of life among three groups of prison inmates: inmates in a heterosexual romantic relationship with a fellow prisoner, inmates with a partner outside the prison, and inmates without a partner. In-person interviews with 70 male and 70 female inmates from the Topas Penitentiary (Spain) were conducted. These inmates lived in the same facility but in gender-segregated modules. After controlling for age, nationality, total time in prison, actual sentence time served, and estimated time to parole, the results showed a lower level of romantic loneliness, and a higher level of sexual satisfaction and global, psychological, and environment quality of life for the group of inmates with a heterosexual partner inside prison. These findings highlight the positive attributes associated with heterosexual romantic relationships between inmates inside the same prison.