The current work tests different theoretical models of belongingness and acceptance as fundamental needs for human motivation. In the current study, 372 participants were presented with 52 different items measuring five different theoretical models of belongingness and three different theoretical models of acceptance. In a first step, Confirmatory Factor Analysis failed to provide support for these eight theoretical models. In a second step, we therefore applied Exploratory Factor Analysis yielding three factors, which we interpreted as communicating: Belongingness, Emotion-Acceptance, and Social (...) Self-Representation. In a third step, these three factors were corroborated by a CFA. We discuss how these two factors of “belongingness,” “emotion-acceptance” respond to the literature on the need to belong and be accepted, and we reflect on how ‘social self-representation’ seems to be an alternative motivation for how we present ourselves to our social relations to fulfill our needs. (shrink)

BackgroundNusinersen is one of an increasing number of new, expensive orphan drugs to receive authorization. These drugs strain public healthcare budgets and challenge principles for resource allocation. Nusinersen was introduced in the Norwegian public healthcare system in 2018. A national expert group consisting of physicians was formed to oversee the introduction and continuation of treatment in light of specific start and stop criteria.MethodsWe have studied experiences within the expert group with a special emphasis on their application of the start and (...) stop criteria, rationing of treatment, and experienced moral dilemmas. A research interview with six members of the national expert group was performed, then analysed with manifest content analysis. The analysis was supplemented with publically available sources on priority setting and the process leading up to the introduction of nusinersen and the establishment of the expert group.ResultsSixty-six patients have received treatment within the first 25 months since the national expert group’s establishment. Treatment has not been discontinued for any patient. No patients under 18 years of age have been denied treatment, as those who were referred at this age were all deemed to fulfill the start criteria. The expert group has, however, increased geographical treatment equity and facilitated important cooperation at the national level. Furthermore, it has enhanced open and critical discussions of both medical issues and new ethical dilemmas.ConclusionAlthough facilitating equal access to treatment for SMA patients, the national expert group has not discontinued treatment for any patient. It is suggested that in order for clinicians to be able to ration care for individual patients, they require both adequate support and sufficient formal authority. Start and stop criteria need to be re-evaluated as more knowledge and experience are gained regarding the treatment. (shrink)