Joanna Kosmala-Anderson

The training needs of doctors working in England and in Poland with breastfeeding women

In the US, HIV dementia occurs in 10–15% of HIV-positive individuals with advanced infection. The prevalence of HIV dementia in sub-Saharan countries, where the vast majority of individuals with HIV reside, is largely unknown. This Review will summarize our current understanding of HIV-associated cognitive impairment in resource-limited settings, focusing specifically on the countries of sub-Saharan Africa. We will describe the frequency of HIV dementia and HIV-associated cognitive impairment from several case series in the sub-Saharan region. We will then summarize recent studies from Uganda and Ethiopia that included detailed neuropsychological assessments. The potential influence of clade diversity on HIV-associated cognitive impairment will be discussed. Differences between the results of the studies in Uganda and in Ethiopia raise the possibility that HIV subtypes might have different biological properties with respect to their capacity to cause HIV-associated cognitive impairment. Further studies are needed to determine the true prevalence of HIV dementia in sub-Saharan Africa and to establish whether specific clade subtypes might influence the presentation of neurological complications.

Does the professional and working context of United Kingdom clinicians predict if they use practices to support patients with long term conditions to self manage

Introduction Our study examines how the professional and employment context may influence clinicians’ practice self management support for patients with long term conditions (LTC). Material and methods We surveyed clinicians working with patients with depression, chronic obstructive pulmonary disorder (COPD), chronic musculo skeletal pain and diabetes. Results Clinicians most frequently endorsed items on a scale concerned with patient centeredness, and less frequently endorsed items concerned with clinical and organizational self management support. The most important factors predicting these latter activities were the intensity of working experience with patients with LTC and attending professional training addressing the principles and practice of self management support. Practicing patient centeredness was endorsed by nearly all respondents, and so was not sensitive to variation on work variables. Conclusions The interaction of training and intensity of work with patients with LTC seems to have the most powerful effect on undertaking clinical and organizational self management support practices. To facilitate clinicians’ practice of self management support for patients with LTC it is very important to provide relevant professional training and to build specialized patient care teams with professionals having complimentary skills.

Web-based self-management for young cancer survivors: consideration of user requirements and barriers to implementation

PurposeAs the population of young cancer survivors increases, there is a need to develop alternative ways of providing post-treatment support. Online systems potentially offer self-management and e-learning support following cancer treatment. This research aims to explore the self-management support needs of teenage and young adult cancer survivors and consider whether those needs can be met through a web-based self-management resource.MethodsA mixed methods approach was adopted including an online survey (n = 24), focus groups and interviews with teenage and young adult cancer survivors (n = 7) and interviews with parents of survivors (n = 6), information technology specialists (n = 8) and clinical, nursing and social work professionals (n = 11).ResultsAll stakeholders were supportive of web-based self-management to meet information and support needs that would supplement continued direct interaction with clinical staff. Barriers to implementation were identified in terms of risks to young people, governance issues and the challenges of providing a long-term service.ConclusionComputer access and use amongst teenagers and young adults is commonplace, and there is an expectation that self-management needs will be met at least partially online in the future. There is a desire for online social support through peer interaction as well personal developmental and clinical management. These elements may need to be run through different systems to cater for governance requirements.Implications for Cancer SurvivorsAn online self-management system could provide support at a number of different levels. The barriers to implementation should be addressed, to ensure that survivors can be supported in this way in the future.

A qualitative study of the childbearing experience of women living with multiple sclerosis.

Purpose: Although at any time in the UK, there are about 20,000 women with MS who may be considering having children, healthcare system often fails to provide them with information and support they need to make informed decisions about their health and pregnancy management. The aim of this paper is to explore the childbearing experience of women with MS to determine what support and information may be useful to this target group. Method: Interviews were conducted with women with MS (n = 9). Transcripts were analysed using thematic analysis. Results: Three major themes emerged from the interviews with women living with MS. We found women were concerned about both medical and practical issues associated with having children. Limited access to information about relationships between MS and childbearing and receiving conflicting or wrong information was recounted. Opinions of family members and clinicians regarding having children in the context of MS impacted on women’s experience of making decision about having children and childbearing. Conclusions: Women with MS can benefit from having access to comprehensive, structured sources of information about MS and childbearing. Healthcare professionals and family members ‘support could be channelled more appropriately to enhance their experience of making choices about childbearing. Implications for Rehabilitation Women with MS who are considering having children express a number of medical and practical concerns, but they experience difficulty in accessing to comprehensive and reliable sources of information about MS and childbearing. We recommend developing a resource offering women living with MS and clinicians working with this group of patients comprehensive, credible and up to date information about different aspects of MS and childbearing. We recommend women with MS who are pregnant have access to a multidisciplinary team of clinicians available for consultation and ad hoc advice to address women’s concerns and make individualized plan for pregnancy and condition management.

A co-produced self-management programme improves psychosocial outcomes for people living with depression

Purpose – There is growing interest in self-management support for people living with mental health problems. The purpose of this paper is to describe the evaluation of a co-designed and co-delivered self-management programme (SMP) for people living with depression delivered as part of large scale National Health Service quality improvement programme, which was grounded in the principles of co-production. The authors investigated whether participants became more activated, were less psychologically distressed enjoyed better health status, and quality of life, and improved their self-management skills after attending the seven-week SMP. Design/methodology/approach – The authors conducted a longitudinal study of 114 people living with depression who attended the SMP. Participants completed self-reported measures before attending the SMP and at six months follow up. Findings – Patient activation significantly improved six months after the SMP (baseline M=49.6, SD=12.3, follow up M=57.2, SD=15.0, t(113)=4.83, p < 0.001; d=0.61). Participants’ experience of depression symptoms as measured by the Patient Health Questionnaire-9 significantly reduced (baseline M=15.5, SD=6.8, follow up M=10.6, SD=6.9, t(106)=7.22, p < 0.001, d=−0.72). Participants’ anxiety and depression as measured by the Hospital Anxiety Depression Scale also decreased significantly (baseline anxiety: M=13.1, SD=4.2, follow up M=10.2, SD=4.4, t(79)=6.29, p < 0.001, d=−0.69); (baseline depression: M=10.3, SD=4.6, follow up M=7.7, SD=4.5, t(79)=5.32, p < 0.001, d=−0.56). The authors also observed significant improvement in participants’ health status (baseline M=0.5, SD=0.3, follow up M=0.6, SD=0.3, t(97)=−3.86, p < 0.001, d=0.33), and health-related quality of life (baseline M=45.4, SD=20.5, follow up M=60.8, SD=22.8, t(91)=−2.71, p=0.008, d=0.75). About 35 per cent of participant showed substantial improvements of self-management skills. Originality/value – The co-produced depression SMP is innovative in a UK mental health setting. Improvements in activation, depression, anxiety, quality of life and self-management skills suggest that the SMP could make a useful contribution to the recovery services in mental health.

Exploring the need for, and feasibility of, a web-based self-management resource for teenage and young adult cancer survivors in the UK

The growth in social networking sites and online forums make the internet a potential platform to be considered for the provision of self-management and e-learning support to young people following cancer treatment. However, the feasibility and potential barriers to this as a post treatment option should be considered. A mixed methods approach was adopted that included an online survey, focus groups and interviews with cancer survivors, their parents, and information technology, clinical and social work professionals to consider the potential of a web-based self-management resource. Barriers were identified to the delivery of care using this method. Developing such a self-management system requires close working between IT and clinical staff, alongside patient representation and usability expertise. As computer access and use amongst this group is commonplace, there is an expectation that self-management needs will be met at least partially in this way in the future.