Protocol for a scoping review of how people with ME/CFS use the internet.

INTRODUCTION: Myalgic encephalomyelitis (ME) is a chronic neurological illness affecting many bodily systems, commonly the nervous and immune systems. Also known as chronic fatigue syndrome (CFS), key symptoms are extreme fatigue, post-exertional malaise, cognitive problems and sleep disturbance. With reported higher levels of online activity for people with ME/CFS than other patient groups (Westerby 2013 cited in Ytre-Arne) it is crucial to gain more knowledge of usage characteristics and experience of online use, and its integration into everyday life. This scoping review protocol details the proposed methods for gaining insight into this little known phenomenon. METHODS AND ANALYSIS: This review uses the methodological framework for conducting a scoping review by Arksey and O'Malley, with further guidance by Levac et al, and the Joanna Briggs Institute. It also refers to the Preferred Reporting Items for Systematic Review and Meta-Analysis Protocols reporting guidelines. The following bibliographic databases will be searched: Embase, Medline, PsychINFO, Cinahl, AMED, and ASSIA, plus Web of Science, ProQuest Dissertations and Theses Global, Scopus, and Google Scholar for grey literature. Reference lists of included papers will be studied. Two reviewers will independently screen title abstracts, and then full text of studies against inclusion criteria. Remaining studies will be quality assessed using appropriate critical appraisal tools. Findings will be charted and mapped to gain in-depth knowledge of the use of the internet in people with ME/CFS. ETHICS AND DISSEMINATION: The findings from this review will be disseminated through peer-reviewed publication and a report for leading charities of ME/CFS. The review will collect secondary data only and therefore does not need ethical approval.

Differences in access and utilisation of mental health services in the perinatal period for women from ethnic minorities-a population-based study.

BACKGROUND: Barriers to accessing mental health care during pregnancy and the first postnatal year (perinatal period) seem to be greater for ethnic minority women; however, there is no reliable large-scale data about their actual use of mental health services during this period. Our study aims to explore access rates to secondary mental health services, including involuntary admissions to psychiatric inpatient care and patterns of engagement for ethnic minority women aged 18+ who gave birth in 2017 in England, UK. METHODS: Two datasets from the National Commissioning Data Repository, the Acute Inpatient Dataset and Mental Health Services Dataset, were linked. Datasets covering the full perinatal period for each woman were included. Rates were standardised by age and deprivation. RESULTS: Out of 615,092 women who gave birth in England in 2017, 22,073 (3.5%) started a contact with mental health services during the perinatal period. In total, 713 (3.2%) were admitted to inpatient care, and 282 (39.5%) involuntarily. Ethnicity data was available for 98% of the sample. Black African, Asian and White Other women had significantly lower access to community mental health services and higher percentages of involuntary admissions than White British women. Black African, Asian and White Other women had a higher number of attended community contacts and fewer non-attendances/cancellations of appointments than White British women. CONCLUSION: Access to mental health services during the perinatal period varies significantly between women from different ethnic groups. Access to community mental health services should be facilitated for Black African, Asian and White Other women during the perinatal period, which may reduce rates of involuntary hospital admissions for these groups. The pattern of engagement with community services for women from these ethnicities indicates that access appears to be a problem rather than utilisation.

Understanding the lived experiences of severe postnatal psychiatric illnesses in English speaking South Asian women, living in the UK: a qualitative study protocol.

INTRODUCTION: The South Asian population is the UK's largest and fastest growing minority ethnic group. There is evidence to suggest the lay understanding of postnatal psychiatric illnesses of this group may fall outside the purview of Western biomedical perspectives. Alternative explanations include psychosocial, cultural and spiritual factors. Approaching psychiatric illnesses through a social perspective includes gaining insight to the patient's subjective experiences and understandings via qualitative inquiry. The objectives of this qualitative study are to explore South Asian women's narrative of living with a severe postnatal psychiatric illness and experiences of Perinatal Mental Health Services, care and support. METHODS AND ANALYSIS: Data collection is ongoing and will continue until 31 December 2018. Participants will be identified and recruited from Perinatal Mental Health Services in Birmingham and London. Eligible participants will be English speaking South Asian females aged 18 years or above with the capacity to give written informed consent. Participants are clinically diagnosed with a severe postnatal psychiatric illness. This qualitative study uses individual in-depth face-to-face interviews that aim to last 1 hour. Interviews will be audio recorded with participants' permission. Interview audio recordings will be transcribed verbatim and analysed using interpretative phenomenological analysis (IPA). The primary goal of IPA is for the researcher to closely study and interpret how individuals make sense of their life experiences in a particular context by drawing on the fundamental principles of phenomenology, hermeneutics and idiography. ETHICS AND DISSEMINATION: The University of Birmingham, the South Birmingham Research Ethics Committee and the Health Research Authority have approved this study (approvals date: 18-12-2017 ref: 17/WM/0350). Local capability and capacity have been confirmed from Trust Research and Development departments. The researchers plan to publish the results from this study in journals and present findings at academic conferences.

Women's experiences of severe postnatal psychiatric illness: a systematic review protocol.

BACKGROUND: Super diversity has become a twenty-first-century phenomena in the UK. The Five Year Forward View Plan for Mental Health commits to improving access to Perinatal Mental Health services for all new mothers. Existing research indicates various postnatal mental illness aetiologies, traditional practices and beliefs, which are important to explore during medical consultation to achieve a collaborative relationship between the patient and clinician. The study of severe postnatal psychiatric illnesses is well established in the quantitative literature; however, the subjective experiences of mothers with severe psychiatric illnesses after childbirth have been given little attention. The aim of this systematic review is to synthesise the small body of qualitative findings, which will achieve a deeper understanding of mothers' experiences and understandings. This integration of qualitative data is invaluable in facilitating culturally competent strategies in Western settings and informing future research. METHODS/DESIGN: This protocol proposes a systematic review of qualitative literature of severe postnatal psychiatric illnesses, using a meta-ethnography approach following the PRISMA-P guidelines. A comprehensive search strategy will be developed to undertake a systematic search via online databases to identify eligible articles. Studies will be considered for eligibility if they include mothers aged 18 and over who have been diagnosed with a severe psychiatric illness during the postnatal period; present primary data on women's illness experiences; use qualitative methods. Titles and abstracts will be screened by the primary reviewer to identify potential papers. Two independent reviewers will access and read texts in full and agree on the final list of included studies. Discrepancies will be resolved via consultation with a third independent reviewer. The final list of included studies for review will be methodologically appraised by two independent reviewers using the Critical Appraisal Skills Programme. This systematic review protocol has been registered with the International Prospective Register of Systematic Reviews (PROSPERO): CRD42018093674. DISCUSSION: To date, no systematic review following a meta-ethnographic approach on qualitative explorations of mothers worldwide diagnosed with severe postnatal psychiatric illnesses has been conducted. An amalgamation of this information enables a deeper understanding of how severe postnatal psychiatric illnesses manifests across cultures. This information is useful when devising culturally competent care. SYSTEMATIC REVIEW REGISTRATION: CRD42018093674.

Carers' experience of memory screening tests.

BACKGROUND: Current evidence suggests that patients with dementia find memory tests humiliating and embarrassing. However, the knowledge concerning carers' experience of witnessing patients with dementia undergo memory screening has not been fully explored. AIMS: This study was to explore the experiences of relatives of patients with dementia witnessing memory-screening tests. METHOD: Eleven relatives of patients with dementia were recruited from three memory clinics using a purposive sampling method. A semi-structured questionnaire was used to collect data. The data was subjected to thematic analysis. RESULTS: The relatives appreciated the memory-screening tests as a diagnostic tool but the majority did not understand the questioning in the tests. Witnessing memory-screening tests generated anxiety in the relatives and they felt that memory screening tests were humiliating for patients. CONCLUSION: A collaborative approach where the clinician, the patient and the relative(s) participate in the memory-screening tests is advised. Some relatives may benefit from counselling.

The epidemiology of PTSD and depression in refugee minors who have resettled in developed countries.

BACKGROUND: With an increasing number of refugees migrating across continents, the crisis is very apparent. AIM: A literature review of patterns, risk factors and effects of post-traumatic stress disorder (PTSD) and depression in refugee minors was carried out involving those who have resettled in different developed countries. METHODS: Papers were narrowed down by reading the abstracts and methods to ascertain whether the refugee children had resettled in developed countries and to ensure that they had not just been internally displaced. RESULTS: High incidences of PTSD and depression were found in refugee minors and poorer mental health was correlated with increased exposure to violence. Factors such as social support and family security were important in reducing the rates of PTSD and depression, whereas the implications of age and gender were unclear. Long-term effects from these mental illnesses indicated scholastic issues, but no further worsening of symptoms. CONCLUSIONS: Further research is needed regarding the follow-up of refugee minors with PTSD and depression to allow the establishment of more effective support systems, as long-term outcomes become more clearly understood. Few papers discuss the influence of religion, which may be an interesting line of future research as refugees move to more secular societies.

Does engagement in meaningful occupation reduce challenging behaviour in people with intellectual disabilities? A systematic review of the literature.

Over several years, there has been much debate about the best way to manage challenging behaviour. Although national guidance highlights the importance of meaningful occupation, it is unclear to what extent this helps. This systematic review of the literature aimed to answer the question, 'does engagement in meaningful occupation reduce challenging behaviour in people with intellectual disability?' By searching a range of databases, electronic resources and web pages, 13 relevant articles were identified. Additionally, experts in the field were contacted, hand searches were performed and citation searches were carried out. These 13 articles were critically appraised and analysed using narrative synthesis. Although the amount of research identified was limited and the methodological quality was variable, some broad themes arose. A skilled and structured approach for carrying out occupation may be effective in reducing challenging behaviour; however, more robust research is needed before definitive conclusions can be drawn.

Empowerment and advocacy: reflections on action research with Bangladeshi and Pakistani families who have children with severe disabilities.

The concepts of empowerment and advocacy, and how they impinge on power relationships for service providers working with black and Asian communities, are explored through the findings of a 20-month project carried out between 2000 and 2001 with 19 Pakistani and Bangladeshi families who have children with severe disabilities in Birmingham. This action research project evaluated an advocacy project designed to improve the quality of life for Pakistani and Bangladeshi families with at least one child with severe disabilities. The objectives included improving access to resources, services, information and support in ways which were non-stigmatising, and which were sensitive to the particular needs of the children and their carers. The present paper discusses four main themes: (1) advocacy and empowerment in practice; (2) issues of the efficacy of advocacy and of consultation within advocacy; (3) individual empowerment versus the families' needs; and (4) cultural and gender issues which emerged from the analysis of the study. The authors identify features of empowerment which must be addressed in advocacy services which are sensitive to ethnic differences. These issues must be addressed if services are to reap their potential to make a positive impact on the lives of the most vulnerable and powerless members of the community.

Attitudes towards disability amongst Pakistani and Bangladeshi parents of disabled children in the UK: considerations for service providers and the disability movement.

It has sometimes been assumed that religiously based explanations for and attitudes to having a disabled child have led to the low uptake of health and social services by ethnic minority families in the UK. A series of semi-structured interviews were held between 1999 and 2001 with 19 Pakistani and Bangladeshi families with a disabled child as part of an evaluation of an advocacy service. The families' understandings of the causes of their child's impairment, whether they felt shame and experienced stigma, and whether these factors influenced service uptake and their expectations of their child's future are reported. While religious beliefs did inform the ways in which some families conceptualised their experience, the families' attitudes were complex and varied. There was little evidence that religious beliefs and associated attitudes rather than institutional racism had resulted in the low levels of service provision which the families experienced prior to the advocacy service. There was also no evidence that the families' attitudes had been informed by the disability movement. The implications for service providers and the movement are considered.