BACKGROUND: The quality of life of people with disorders of sex development depends largely on the availability of good psychosocial and psychosexual management. There is a lack of qualitative systematic reviews of the literature on the experiences of people with disorders of sex development.
DESIGN: The seven steps of qualitative meta-ethnography were employed in this review.
DATA SOURCES: The following electronic databases were systematically searched until January 2017: Science Direct, Scopus, Sage online, CINAHL, PsycINFO, Medline, Wiley Online Library, and Google Scholar. Search terms for this review were "disorders of sex development," "intersex," "ambiguous genitalia," "experiences," "qualitative study," and "method".
REVIEW METHOD: A 13-item scale was applied to evaluate the quality of the selected studies and synthesized using the principles of meta-ethnography.
FINDINGS: Twelve studies met the eligibility criteria. Six major themes described the experiences of people with disorders of sex development. These included a range of physical, psychological, social, and sexual experiences which affect their quality of life. Different coping strategies were employed by individuals who live with the lifelong condition.
CONCLUSION: Disorders of sex development affect the quality of life of people living with these disorders. Nurses are tasked with providing holistic care for people with disorders of sex development in order to improve their quality of lives. As such, there is a need to explore the experiences of nurses in the management of disorders of sex development.
DESIGN: Systematic review and meta-ethnography.
DATA SOURCES: Medline, CINAHL, Embase and PsycINFO databases (literature searched until May 2015, published studies ranged from 1996 to 2015).
ELIGIBILITY CRITERIA: Primary qualitative studies focused on adult community-dwelling stroke survivors' and/or informal caregivers' experiences of primary care and/or community healthcare services.
DATA SYNTHESIS: A set of common second order constructs (original authors' interpretations of participants' experiences) were identified across the studies and used to develop a novel integrative account of the data (third order constructs). Study quality was assessed using the Critical Appraisal Skills Programme checklist. Relevance was assessed using Dixon-Woods' criteria.
RESULTS: 51 studies (including 168 stroke survivors and 328 caregivers) were synthesised. We developed three inter-dependent third order constructs: (1) marginalisation of stroke survivors and caregivers by healthcare services, (2) passivity versus proactivity in the relationship between health services and the patient/caregiver dyad, and (3) fluidity of stroke related needs for both patient and caregiver. Issues of continuity of care, limitations in access to services and inadequate information provision drove perceptions of marginalisation and passivity of services for both patients and caregivers. Fluidity was apparent through changing information needs and psychological adaptation to living with long-term consequences of stroke.
LIMITATIONS: Potential limitations of qualitative research such as limited generalisability and inability to provide firm answers are offset by the consistency of the findings across a range of countries and healthcare systems.
CONCLUSIONS: Stroke survivors and caregivers feel abandoned because they have become marginalised by services and they do not have the knowledge or skills to re-engage. This can be addressed by: (1) increasing stroke specific health literacy by targeted and timely information provision, and (2) improving continuity of care between specialist and generalist services.
SYSTEMATIC REVIEW REGISTRATION NUMBER: PROSPERO 2015:CRD42015026602.
PURPOSE: To investigate the teaching and learning experiences of Malaysian nurses on Transnational Higher Education post-registration top-up degree programmes in Malaysia.
DESIGN: Hermeneutic phenomenology and the ethnographic principle of cultural interpretation were used to explore the views of eighteen Malaysian nurses from two UK and one Australian TNHE universities (determined by convenience and snowball sampling methods) to ensure data saturation. Semi-structured interviews were conducted in English and Bahasa Malaysia (Malaysian language) to enable nurses' voices to define, describe and evaluate their TNHE classroom experiences.
DATA ANALYSIS: Data were analysed using thematic analysis.
FINDINGS: The nurses' experiences within the short one or 2 weeks TNHE intercultural teaching and learning environment identified four categories: language and teaching and learning issues; TNHE degree requirements, guidance and support; shock and coping strategies and acclimatisation. They suggest there was a conflict between the assumptions and expectations of the TNHE 'flying faculty' and nurses' about the programme of study. There were also mismatches between Western and Malaysian pedagogical preferences, guidance and support, and professional values.
IMPLICATIONS FOR EDUCATION/PRACTICE: There is a need for TNHE 'flying faculty' to internationalise the theoretical knowledge to reduce cultural incongruities and dissimilarities. Cultural immersion will stimulate intercultural views and knowledge to equip nurses for promotional and/or global opportunities whilst enabling the 'flying faculty' to create new learning environments. The research provides insights to inform TNHE provider institutions to improve teaching and learning to enable nurses to make the theory-practice connection.