Listening to families with a person with neurodegenerative disease talk about their quality of life: integrating quantitative and qualitative approaches.

BACKGROUND: The diagnosis of a neurodegenerative disease (ND) produces profound changes in the quality of life of the affected families. Despite the vital importance of these processes, the scientific literature has addressed this topic almost exclusively relating to the main caregiver or using limited approaches. Thus, the main objective of this research is to achieve a deeper understanding of the quality of family life of people with a neurodegenerative disease, following a mixed-method approach that combines quantitative and qualitative methodology. METHODS: The quantitative instrument was the Spanish version of the Family Quality of Life Survey-Neurodegenerative Disease (FQOLS-ND), which was completed by 300 participating families. The qualitative methodology was used in two focus groups with family caregivers, with a total of 21 participants. RESULTS: On the one hand, confirmation of the dimensional structure of the scale in the focus groups was obtained and, on the other hand, the results of family quality of life in attainment and satisfaction were shown to be high for Family Relations and Careers and Planning for Careers and low for Support from Services and Leisure and Recreation. CONCLUSIONS: The results of this study, through the combination of quantitative and qualitative information, helps to identify key issues to optimize services that respond to the priority needs of families.

Comparing parent and child reports of health-related quality of life and their relationship with leisure participation in children and adolescents with Cerebral Palsy.

The aim of this study was to examine the level of agreement between reports of health-related quality of life (HR-QoL) obtained from children and adolescents with cerebral palsy (CP) and their parents. We also examined the relationships between child and parent perception of the different domains of HR-QoL and participation dimensions. Sixty-nine children and adolescents with CP and their parents separately completed parallel forms of the KIDSCREEN questionnaire. The Spanish version of the Children's Assessment of Participation and Enjoyment (CAPE) was completed by the child/adolescent. Concordance between the children's and the parents' HR-QoL scores was analyzed via Pearson and intraclass correlations. Differences in means were tested using paired Student's t-tests. Chi-square tests were using to assess the incidence of personal variables in the agreement and disagreement of children-parents' responses. The relationships between HR-QoL and leisure participation was confirmed with Pearson's correlation coefficients. Correlations between child and parent HR-QoL scores were small in 7 domains, medium in 2 and large in the Social Support & Peers domain. Children reported significantly better HR-QoL than their parents did. Participation was positively associated with specific domains of HR-QoL, but only weakly, and there were discrepancies between parent and child reports of HR-QoL. These findings provide interesting information about the importance of hearing the voices of children and adolescents with CP to promote HR-QoL and leisure participation.

Do environmental barriers affect the parent-reported quality of life of children and adolescents with cerebral palsy?

Physical, social, and attitudinal environment may affect the quality of life (QoL) of children and adolescents with cerebral palsy (CP). Participants in this study included parents of 206 children and adolescents with CP (55.8% males) aged 8-18 years (M=11.96, SD=3). 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. Environmental barriers were assessed with the Spanish version of the European Child Environment Questionnaire (ECEQ), and QoL was assessed with the KIDSCREEN parents' version. The results of the correlation analysis revealed that GMFCS level, IQ, and type of schooling are significantly correlated with QoL. Barriers were also associated with QoL. A series of hierarchical regression analyses indicated that, after controlling for the effect of child and parent's variables, barriers at home and at school significantly contribute to QoL. These findings underscore the importance of providing interventions to produce environmental changes that contribute to the improvement of QoL.

Heterosexual romantic relationships, interpersonal needs, and quality of life in prison.

The purpose of this study was to investigate the moderating effect of having vs. not having a and quality of life. In-person interviews were conducted with 55 male and 64 female inmates from the Topas Penitentiary (Spain). Higher levels of social loneliness and lower levels of sexual satisfaction were associated with lower levels of quality of life. In addition, the interaction between sexual satisfaction and romantic partner status was significant. Higher levels of sexual satisfaction were associated with higher levels of quality of life only for the group without a partner. These findings support a "bad is stronger than good" principle and indicate the detrimental aspects that can be associated with not having a satisfactory sexual life while incarcerated.

Men and women in the same prison: interpersonal needs and psychological health of prison inmates.

The purpose of this study was to investigate the gender differences in the state of interpersonal needs and psychological health of male and female prison inmates who live in the same prison. The authors conducted in-person interviews with 118 male and 70 female inmates. The results show that women present a better interpersonal state and psychological health than do men. For both genders, the consequences of fulfilling or not fulfilling interpersonal needs-specifically, social loneliness and sexual satisfaction-are associated with psychological health. These findings suggest the importance of the state of prison inmates' interpersonal needs in promoting psychological health in the context of the prison, where these needs are generally difficult to be met. Making contacts possible between male and female inmates who are in the same prison might help them to better fulfill some of their interpersonal needs, especially those related to their sexual lives.