Family adaptation in families of individuals with Down syndrome from 12 countries.

Our current understanding of adaptation in families of individuals with Down syndrome (DS) is based primarily on findings from studies focused on participants from a single country. Guided by the Resiliency Model of Family Stress, Adjustment, and Adaptation, the purpose of this cross-country investigation, which is part of a larger, mixed methods study, was twofold: (1) to compare family adaptation in 12 countries, and (2) to examine the relationships between family variables and family adaptation. The focus of this study is data collected in the 12 countries where at least 30 parents completed the survey. Descriptive statistics were generated, and mean family adaptation was modeled in terms of each predictor independently, controlling for an effect on covariates. A parsimonious composite model for mean family adaptation was adaptively generated. While there were cross-country differences, standardized family adaptation mean scores fell within the average range for all 12 countries. Key components of the guiding framework (i.e., family demands, family appraisal, family resources, and family problem-solving communication) were important predictors of family adaptation. More cross-country studies, as well as longitudinal studies, are needed to fully understand how culture and social determinants of health influence family adaptation in families of individuals with DS.

Construction of a User-Led Resource for People Transitioning to Secondary Progressive Multiple Sclerosis: Results of an International Nominal Group Study.

Background: ManTra is a mixed-methods, co-production research project for developing an intervention (resource) for people with newly diagnosed secondary progressive multiple sclerosis (pwSPMS) in Italy and Germany. In previous project actions, six resources were outlined, meeting the needs prioritized by pwSPMS. Aims: This study aims to achieve multiple-stakeholder consensus on the most suitable resource and to refine the consensus resource. Methods: Two nominal group technique (NGT) meetings were held, one in Milan and one in Hamburg. Participants were pwSPMS (five in Italy/six in Germany), pwSPMS significant others (SOs, four/five), healthcare professionals (HPs, seven/four), and health service researchers/patient and citizen organizations representatives (HPCORs, five/five). Two of the four resources discussed in each meeting were the same in Italy and Germany: "Promoting the engagement of pwSPMS: a program for the patients and the HPs" and "Enriched physiotherapy program for pwSPMS." The other two were "A personalized care plan for pwSPMS" and "Roadmap for social and economic benefits" in Italy and "Metacognitive and everyday life training for pwSPMS" and "Psychological support for pwSPMS" in Germany. Each meeting consisted of two plenary sessions and a parallel group session (four stakeholder groups: pwSPMS, SOs, HPs, and HPCORs) in between. Meetings' narratives were analyzed thematically. Results: The two meetings were rich in participation and discussion. In Italy, the consensus resource was "A personalized care plan for pwSPMS." Refinements included enrichment with pwSPMS engagement, inclusion of additional HPs, improved definition of the MS nurse's role within the interdisciplinary panel, and community care integration. In Germany, the consensus resource was "Psychological support for pwSPMS." Refinements included reshaping this resource into a more comprehensive and adaptive rehabilitation intervention and training the psychologist in recognizing client's rehabilitative needs and enhancing his/her autonomy. Conclusions: The NGT eased multiple-stakeholder deliberation and resource fine-tuning in both countries.

"Just" blood donors? A study on the multi-affiliations of blood donors.

BACKGROUND: The present work proposes to explore a phenomenon well known in the world of blood donation, but little explored by literature: multi-affiliations. By that term, in this paper we mean blood donors' engagement in multiple associations of various natures (donation, recreation, sports, etc.) simultaneously. The first objective proposes to explore the phenomenon of multi-affiliations in descriptive terms; the second is to look into the differences-in terms of motivations, family-work-volunteerism reconciliation, life satisfaction, and membership satisfaction-between those who "only" carry out blood donation activity and those who instead participate in multiple associative realities concurrently. METHOD: Participating in the research were 2674 donors from the Italian Association of Blood Donors (AVIS) (age range 18-65; 66.6% male) to which a self-report questionnaire was administered in the waiting rooms of numerous blood donation centers. RESULTS: Regarding the first objective, it emerged that only 35.9% of the participants "only" donate blood, while a good 64.1% is engaged also in other associations. Regarding the second objective, statistically significant differences emerge regarding many of the variables considered: social, values, ego-protection, and career motivation; capacity to reconcile family-volunteering and work-volunteering; life satisfaction; and membership satisfaction. CONCLUSIONS: The study offers precious information to the agencies that handle recruiting and retaining of donors. The agencies in fact can take away information on how to improve the multi-affiliations of their donors, an aspect that can facilitate their long-term retention.

Economic crisis and blood donation: How are donors' motivations changing?

BACKGROUND: The economic crisis has exasperated people's feelings of loneliness; job instability often does not allow people to commit to voluntary work. The present work proposes to examine whether the motivations to donate blood have changed before and during the period of economic crisis, taking into consideration donors' gender. We adopted Omoto & Snyder's functionalist approach, which states that blood donation serves different functions for any one person, who may have different motivations from those held by other people. MATERIALS AND METHODS: We compared six-year pre-post (t1 "pre-crisis": 2008 - t2 "during the crisis": 2014) data on a sample of blood donors in a single blood donation center situated in Northern Italy. T-test was used for data analysis. Three hundred thirty donors (age range 18-60, M = 32.6, SD = 9.53; 54.5% male) were administered a survey at t1 and 444 (age range 18-60, M = 37.8, SD = 10.16; 68% male) six years later at t2. In both surveys, participants were administered a questionnaire with socio-demographic items and a version of Omoto & Snyder's Motivations to Volunteer scale adapted to blood donation. RESULTS: Donors' motivation priorities did not vary over time. Values and Self-enhancement motivations are the most prevalent. Knowledge and Ego-protection motivations decreased with the upsurge of the crisis. Women, in general, report higher mean values than men do for Values and Ego-protection motivations. CONCLUSION: These results can offer valuable clues for the agencies that manage blood collection.