Developing and establishing the psychometric properties of the Strathclyde Citizenship Measure: A new measure for health and social care practice and research.

There has been increasing interest and research attention towards citizenship-based practices and care within health and social care settings. A framework for implementing citizenship-based interventions has helped support the participation in society of persons who have experienced major life disruptions. Yet, having ways to measure the impact of citizenship 'in action' within specific socio-cultural contexts has proved challenging. We report on the development of the Strathclyde Citizenship Measure (SCM) which seeks to establish a psychometrically sound measure of citizenship that is relevant to the Scottish context. We outline the three phases of developing the SCM: (1) item generation, (2) item reduction and piloting, and (3) measure validation. Having generated items for the SCM using concept mapping techniques, we piloted it with 407 participants who completed an online survey of a 60-item version of the SCM. The aims were to assess the validity of the items and reduce the number of items using principal components analysis for the final measure. This resulted in a 39 item SCM. We then sought to establish the psychometric properties of this shorter version of the SCM through testing its reliability, convergent, concurrent and discriminant validity. The 39 item SCM was administered online to 280 Scottish residents along with additional measures including the Warwick-Edinburgh Mental Well-being Scale (WEMWBS), the Depression, Anxiety and Stress Scale (DASS21), the Sense of Belonging Instrument (SOBI-A); the Big Five Personality Inventory (Shortened Version; BFI-10) and the Personal Social Capital Scale (PSCS-16). The factor structure and dimensionality of the SCM was examined using exploratory factor analysis and it was found to be reliable and valid. This paper explores the potential for the application of the SCM across health and social care settings and identifies future work to develop citizenship tools to facilitate dialogues about citizenship across health and social care practice settings.

Citizens defining citizenship: A model grounded in lived experience and its implications for research, policy and practice.

Citizenship is gaining currency in health and social care internationally as a way of making sense of the lived experiences of people with major life disruptions who face exclusion, marginalisation and discrimination, but the concept is often contested, poorly defined and understood. This paper charts the development of an empirical model of citizenship within Scotland, UK. A mixed-method, community-based participatory research approach using 10 focus groups (n = 77), concept-mapping exercises (n = 45) and statement clarity and relevant ratings (n = 242) was used to develop a model of citizenship that is grounded in the lived experience of participants, which is absent from current conceptualisations of citizenship. Multidimensional scaling and hierarchical cluster analysis revealed five core domains emerging from our work: 'building relationships', 'autonomy and acceptance', 'access to services and supports', 'shared values and social roles' and 'civic rights and responsibilities' representing the personal meanings of citizenship for participants. We argue that the value of this model is that it is draws upon the personal understandings and experiences of participants who emphasised the 'banal ordinariness' of its core elements. We suggest that the model makes an original contribution by clearly illustrating the practical applicability of citizenship as a concept; thus, enhancing existing theories of citizenship. Our model highlights the interplay between the relational and structural aspects of citizenship and acknowledges the barriers that marginalised groups face in claiming their citizenship rights. It offers a call to action for policy makers and practitioners to set goals that contribute to the social inclusion of those who have experienced major life disruptions.

"The biggest barrier is to inclusion itself": the experience of citizenship for adults with mental health problems.

BACKGROUND: Citizenship has been promoted within mental health for several decades however, its application in the field of mental health policy and practice is relatively novel. The voices of people who experience mental health problems (MHPs) are often absent in ongoing discourses about citizenship. AIMS: To explore how adults with experience of MHPs and other life disruptions identify potential barriers to citizenship. METHOD: A community based participatory research approach was adopted with peer researchers. Six focus groups (N = 40) using semi-structured interviews were conducted, consisting of participants who had experience of MHPs and other life disruption(s) within the last 5 years. The focus groups were audio recorded, transcribed verbatim and analysed in NVIVO using a thematic approach. RESULTS: Three major themes associated with participants lived experiences of barriers to citizenship were identified: 'stigmatisation (internal & external) creates further divide'; 'being socially excluded leads to isolation'; and 'a sense of difference (as perceived by the self and others)'. CONCLUSIONS: Those who have experienced major life disruption(s) face multi-level barriers to citizenship. An awareness of such barriers has important implications for mental health research, policy and practice. Citizenship-oriented implementation strategies that aim to address multi-level barriers merit further investigation.

The double-edged sword of vulnerability: Explaining the persistent challenges for practitioners in supporting parents with intellectual disabilities.

BACKGROUND: Evidence suggests that parents with intellectual disabilities can be "good enough" parents with appropriate support that focuses on the whole family. This paper brings together theories of vulnerability with an ethics of care approach to reflect on challenges for practitioners in supporting parents, drawing upon data from a study carried out in Scotland. METHOD: An online survey was administered to practitioners in three settings, and follow-up interviews were carried out with key informants. RESULTS: Pockets of good practice existed but a number of barriers to supporting families remained. These related to a lack of accessible information, difficulties in identifying and engaging with families at an early stage and poor joint working across agencies. CONCLUSION: The study concludes by arguing that practitioners' constructions of families as "vulnerable" reflects negatively on their perceived capacity to parent, creating further barriers in accessing appropriate support and reducing expectations of success.

Carbohydrate-based micelle clusters which enhance hydrophobic drug bioavailability by up to 1 order of magnitude.

Amphiphilic chitosan-based polymers (Mw < 20 kDa) self-assemble in aqueous media at low micromolar concentrations to give previously unknown micellar clusters of 100-300 nm in size. Micellar clusters comprise smaller 10-30 nm aggregates, and the nanopolarity/drug incorporation efficiency of their hydrophobic domains can be tailored by varying the degree of lipidic derivatization and molecular weight of the carbohydrate. The extent of drug incorporation by these novel micellar clusters is 1 order of magnitude higher than is seen with triblock copolymers, with molar polymer/drug ratios of 1:48 to 1:67. On intravenous injection, the pharmacodynamic activity of a carbohydrate propofol formulation is increased by 1 order of magnitude when compared to a commercial emulsion formulation, and on topical ocular application of a carbohydrate prednisolone formulation, initial drug aqueous humor levels are similar to those found with a 10-fold dose of prednisolone suspension.

Predictors of participation in clinical and psychosocial follow-up of the kConFab breast cancer family cohort.

INTRODUCTION: Prospective collection of epidemiological, psychosocial and outcome data in large breast cancer family cohorts should provide less biased data than retrospective studies regarding penetrance of breast cancer and modifiers of genetic risk. METHODS: The Kathleen Cuningham Foundation for Research into Breast Cancer (kConFab) recently commenced 3-yearly follow-up on over 750 families with multiple cases of breast cancer. Clinical follow-up was by mailed self-report questionnaire to all participants, while psychosocial follow-up was only of unaffected women and consisted of two components: a mailed questionnaire and an interview regarding stressful life events. RESULTS: To date, 1928 of 2748 (70%) participants returned the clinical follow-up questionnaire (10% opted out, 16% were non-responders, and 4% were not contactable). Of the unaffected females who returned the clinical follow-up questionnaire, 91% participated in the psychosocial follow-up. In multivariate analyses, sex, personal cancer status, marital status, age and educational status were independent predictors of response to the clinical follow-up questionnaire, and number of female children, age, and family history of breast cancer were independent predictors of response to the psychosocial follow-up. CONCLUSIONS: A first round of 3-yearly clinical and psychosocial follow-up using a mailed questionnaire was feasible in this cohort. High response rates were achieved by employing intensive tracing and reminder strategies. The predictors of response for the clinical and psychosocial follow-up components of this study should be considered in designing similar follow-up strategies for other family cancer cohorts.