Knowledge and information needs of informal caregivers in palliative care : a qualitative systematic review

Objectives: To review current understanding of the knowledge and information needs of informal caregivers in palliative settings. Data sources: Seven electronic databases were searched for the period January 1994–November 2006: Medline, CINAHL, PsychINFO, Embase, Ovid, Zetoc and Pubmed using a meta-search engine (Metalib®). Key journals and reference lists of selected papers were hand searched. Review methods: Included studies were peer-reviewed journal articles presenting original research. Given a variety of approaches to palliative care research, a validated systematic review methodology for assessing disparate evidence was used in order to assign scores to different aspects of each study (introduction and aims, method and data, sampling, data analysis, ethics and bias, findings/results, transferability/generalizability, implications and usefulness). Analysis was assisted by abstraction of key details of study into a table. Results: Thirty-four studies were included from eight different countries. The evidence was strongest in relation to pain management, where inadequacies in caregiver knowledge and the importance of education were emphasized. The significance of effective communication and information sharing between patient, caregiver and service provider was also emphasized. The evidence for other caregiver knowledge and information needs, for example in relation to welfare and social support was weaker. There was limited literature on non-cancer conditions and the care-giving information needs of black and minority ethnic populations. Overall, the evidence base was predominantly descriptive and dominated by small-scale studies, limiting generalizability. Conclusions: As palliative care shifts into patients’ homes, a more rigorously researched evidence base devoted to understanding caregivers knowledge and information needs is required. Research design needs to move beyond the current focus on dyads to incorporate the complex, three-way interactions between patients, service providers and caregivers in end-of-life care setting

Blurring Two Conceptions of Subjective Experience: Folk versus Philosophical Phenomenality

Philosophers and psychologists have experimentally explored various aspects of people\u27s understandings of subjective experience based on their responses to questions about whether robots “see red” or “feel frustrated,” but the intelligibility of such questions may well presuppose that people understand robots as experiencers in the first place. Departing from the standard approach, I develop an experimental framework that distinguishes between “phenomenal consciousness” as it is applied to a subject (an experiencer) and to an (experiential) mental state and experimentally test folk understandings of both subjective experience and experiencers. My findings (1) reveal limitations in experimental approaches using “artificial experiencers” like robots, (2) indicate that the standard philosophical conception of subjective experience in terms of qualia is distinct from that of the folk, and (3) show that folk intuitions do support a conception of qualia that departs from the philosophical conception in that it is physical rather than metaphysical. These findings have implications for the “hard problem” of consciousness

ACCESSIBILITY OF SERVICES FOR TRANSGENDER ADOLESCENTS FROM A CHILD WELFARE PERSPECTIVE

The following is a quantitative study with an explorative element conducted at Southern California University with a convenience sample of 23 social worker participants with experience in child welfare. A Qualtrics questionnaire was administered during the Fall 2023 semester and was used to assess the social workers perception, preparedness, and knowledge in providing services to transgender youth in foster care. The study aimed to gain an understanding of the overall perception of the effect in available transgender resources and training within the child welfare system

Development and Validation of Semantic Differential Scale to Assess Teachers Belief Towards Socially Disadvantaged Students

This paper intended to record the process of developing and validating a Semantic Differential Scale to assess the teacher’s belief on socially disadvantaged students in the Indian context. Social Identity Theory (SIT) and Stereotype Content Model (SCM) has been adopted. Following the new method of developing SDS proposed by Ding et al. (2008), the process resulted in a 15-item scale with a three-factorial structure. The reliability and validity of the scale according to the new method were tested with SPSS 26 and Amos 26, with Cronbach’s alpha reliability coefficients greater than 0.962. With good indices on reliability and validity, the instrument is likely to be useful to both academicians and practitioners interested in assessing the addressed context

Measuring Attitudes Towards Motorcycle Helmet Use in Laos

This paper examines attitude towards use of motorcycle helmet in Laos. A quantitative approach using the survey questionnaire method was adopted to assess this attitude. A total of 257 university students in Vientiane, Laos was interviewed. Forward translation, backward translation, and cognitive debriefing were carried out. Factor analysis of the principal components was also performed. The four-factor solution was used to explain the 58.867% of total variance. The correlation between items showed values between .01 and .566. The total item correlation values were between .129 and .566. Cronbach alpha coefficient was .764 for overall scale and between .801 and .601 on the four factors. Spearman Brown prediction formula was used to test psychometric properties and reliability of the items. A total of 17 items were considered reliable, such as such as susceptibility, trafficability, safety and usability, in determining overall attitudes of Laotians in using motorcycle helmet. These can be used in future research

Fatalism, Social Support and Mental Health in Four Former Soviet Cultures

Research on social support has identified differences in levels of support between cultures, but has provided only a limited explanation of the role of values or beliefs in accounting for such variations. In this paper we examine the relationship between fatalism and perceived support amongst 2672 respondents in four former Soviet States (Russia, Georgia, Ukraine and Belorussia), with participants drawn from groups of manual workers, managers, civil servants, students and the retired in these four countries. We also examine the consequences of such social support for mental health across these nations. Findings indicate a small but significant moderator effect for fatalism on the relationship between social support and mental health. These results are discussed in the context of the continuing economic and social challenges facing the citizens of these nations

Clothing-based discrimination at work: the case of the Goth subculture

Clothing-based discrimination at work induced by belonging to a subculture is not studied in the literature. This paper aims at contributing to fill this gap through analysis of working conditions of the French Goth subculture. Subjects were contacted individually at random for interviews (1-3h each) examined afterwards through statistical, qualitative, and inductive analyses. Nc=18 cases were considered, confirming a clothing-based discrimination mainly favored by two conditions: working with colleagues whose culture is that of the “majority” and being employed in a company of dual type where domination-submission relationships prevail and where professional identities marked by withdrawal are expected by the management. Results suggested that discrimination could proceed of the combination of several socio-psychological mechanisms: a belief that appearances do matter at work, a negative appearance-based judgment biased by “horn effect” and a consecutive task congruent selection moving towards a negative competencies assessment, a resulting confrontational context developed from an opinion task conflict but expressed in terms of aptitude task, making thus vain Goth subjects’ efforts to resolve the conflict

Personal Disability Identity Measurement: Self-Worth and Personal Meaning

In this study, I examined validity evidence for a new disability identity scale, Personal Disability Identity Scale–Self-Worth and Meaning, in a sample of 525 adults with visual impairment (VI) or blindness. Personal disability identity (PDI) refers to feelings about having a disability as well as incorporation of disability status into overall self-concept (Dunn & Burcaw, 2013). Pre-existing measures of PDI (Darling & Heckert, 2010; Hahn & Belt, 2004) operationalize three factors of the PDI concept (i.e., Affirmation, Denial, Pride), which has been theorized to encompass more domains (Dunn & Burcaw, 2013; Forber-Pratt, Lyew, Samples, & Mueller, 2017). The Self-Worth and Meaning subscales were intended to capture previously unexplored PDI domains, including self-worth as a person with a disability (Putnam, 2005) and personal meaning found in the experience of disability (Dunn & Burcaw, 2013). Exploratory and confirmatory factor analyses supported the structural validity of Self-Worth and Meaning scores as well as an overarching four-factor structure of PDI scores composed of Pride/Affirmation, Acceptance (versus Denial), Self-Worth, and Positive Personal Meaning (i.e., Meaning). Correlational analyses between Self-Worth, Meaning, and existing PDI measures supported the convergent and divergent validity of Self-Worth and Meaning scores. Further correlational analyses between Self-Worth and Meaning subscales and indicators of well-being (i.e., satisfaction with life, anxiety/depression) offered support for the external validity of Self-Worth and Meaning. This dissertation contributes to the literature on disability identity by offering an expanded empirical model of PDI as well as a new PDI measure that is derived from models of disability identity that had not been explored empirically (Dunn & Burcaw, 2013; Putnam, 2005)