Consideration needs to be given to the appointment of curriculum leads for patient safety who should be encouraged to work strategically across disciplines and topic areas; development of stronger links with organisational systems to promote student engagement with organisation-based patient safety practice; and role models should help students to make connections between theoretical considerations and routine clinical care.

BackgroundWe aimed to review systematically the needs for support in managing illness and maintaining social inclusion expressed by people with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME)MethodsWe carried out a systematic review of primary research and personal ('own') stories expressing the needs of people with CFS/ME. Structured searches were carried out on Medline, AMED, CINAHL, EMBASE, ASSIA, CENTRAL, and other health, social and legal databases from inception to November 2007. Study inclusion, data extraction and risk of bias were assessed independently in duplicate. Expressed needs were tabulated and a conceptual framework developed through an iterative process.ResultsThirty two quantitative and qualitative studies, including the views of over 2500 people with CFS/ME with mainly moderate or severe illness severity, met the inclusion criteria. The following major support needs emerged: 1) The need to make sense of symptoms and gain diagnosis, 2) for respect and empathy from service providers, 3) for positive attitudes and support from family and friends, 4) for information on CFS/ME, 5) to adjust views and priorities, 6) to develop strategies to manage impairments and activity limitations, and 7) to develop strategies to maintain/regain social participation.ConclusionsAlthough the studies were heterogeneous, there was consistent evidence that substantial support is needed to rebuild lives. Gaining support depends - most importantly - on the ability of providers of health and social care, colleagues, friends and relatives, and those providing educational and leisure services, to understand and respond to those needs.

BackgroundChronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) can cause profound and prolonged illness and disability, and poses significant problems of uncertainty for healthcare professionals in its diagnosis and management. The aim of this qualitative study was to explore the nature of professional 'best practice' in working with people with CFS/ME.MethodsThe views and experiences of health care practitioners (HCPs) were sought, who had been judged by people with CFS/ME themselves to have been particularly helpful and effective. Qualitative semi-structured interviews following a topic guide were carried out with six health care practitioners. Interviews were audio-recorded, transcribed and subject to thematic analysis.ResultsFive main themes were developed: 1) Diagnosis; 2) Professional perspectives on living with CFS/ME; 3) Interventions for treatment and management; 4) Professional values and support for people with CFS/ME and their families; 5) Health professional roles and working practices. Key findings related to: the diagnostic process, especially the degree of uncertainty which may be shared by primary care physicians and patients alike; the continued denial in some quarters of the existence of CFS/ME as a condition; the variability, complexity, and serious impact of the condition on life and living; the onus on the person with CFS/ME to manage their condition, supported by HCPs; the wealth of often conflicting and confusing information on the condition and options for treatment; and the vital role of extended listening and trustful relationships with patients.ConclusionsWhile professional frustrations were clearly expressed about the variability of services both in primary and specialist care and continuing equivocal attitudes to CFS/ME as a condition, there were also strong positive messages for people with CFS/ME where the right services are in place. Many of the findings from these practitioners seen by their patients as helping them more effectively, accord with the existing literature identifying the particular importance of listening skills, respect and trust for establishing a therapeutic relationship which recognises key features of the patient trajectory and promotes effective person-centred management of this complex condition. These findings indicate the need to build such skills and knowledge more systematically into professional training informed by the experience of specialist services and those living with the condition.

Purpose: Scant research has been undertaken to explore in-depth the meaning of bodily change for individuals following stoma formation. The aim of this study was to understand the experience of living with a new stoma, with a focus on bodily change.Method: The study adopted a longitudinal phenomenological approach. Purposeful sampling was used to recruit twelve participants who had undergone faecal stoma-forming surgery. Indepth, unstructured interviews were conducted at three, nine and fifteen months following surgery. A five-stage framework facilitated iterative data analysis.Results: Stoma formation altered the taken-for-granted relationship individuals had with their bodies in terms of appearance, function and sensation, undermining the unity between body and self. Increasing familiarity with and perceived control over their stoma over time diminished awareness of their changed body, facilitating adaptation and self-acceptance.Conclusions: Stoma formation can undermine an individual's sense of embodied self. A concept of embodiment is proposed to enable the experience of living with a new stoma to be understood as part of a wider process of re-establishing a unity between body, self and world. In defining a framework of care, individuals with a new stoma can be assisted to adapt to and accept a changed sense of embodied self.