Social adaptation following intestinal stoma formation in people living at home: a longitudinal phenomenological study.

PURPOSE: Intestinal stoma formation profoundly changes the relationship between a person and their social world. The aim of this study was to understand the experience of living with a new stoma; this paper explores the theme "disrupted social world," highlighting how stoma-forming surgery impacts on individuals' abilities to participate and interact socially over time. METHOD: A longitudinal phenomenological approach. Twelve participants with a new stoma were recruited using purposeful sampling. Data were collected at three, nine and 15 months following surgery through in-depth, unstructured interviews and analysed using a bespoke iterative framework. RESULTS: Three categories were identified: participation in the social environment; interpersonal relationships: changes and challenges; and setting and achieving goals. CONCLUSIONS: Stoma-forming surgery changes the ways people relate to their social environment and connect with others, creating self-consciousness and impeding social confidence and autonomy. Understanding the social implications of stoma-forming surgery can help clinicians to provide responsive and appropriate support to facilitate social rehabilitation. Implications for Rehabilitation Assisting people with a stoma to develop competent stoma self-care skills will promote social adaptation and self-acceptance. Clinicians should promote access to others with a stoma, an important source of support for many people adjusting to a new stoma. Graded exposure to social participation can engender feelings of control and confidence for people with a stoma. Clinicians can help individuals with a stoma to set realistic goals for their recovery, while encouraging a range of positive coping strategies.

Adjusting to bodily change following stoma formation: a phenomenological study.

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 12 participants who had undergone faecal stoma-forming surgery. In-depth, unstructured interviews were conducted at 3, 9 and 15 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. Implications for Rehabilitation Awareness and understanding of the diverse ways in which stoma formation disrupts the unconscious relationship between body and self can help clinicians to provide responsive, person-centred care. Supporting strategies that facilitate bodily mastery following stoma formation will facilitate rehabilitation and promote adjustment and self-acceptance. A concept of embodiment can help clinicians to deepen their understanding of the experiences of people living with a new stoma and the support they may require during the rehabilitation process. This paper provides clinicians with actionable insight that allows them to better support patients to a smoother adjustment process after stoma formation.

Narratives reflecting the lived experiences of people with brain disorders: common psychosocial difficulties and determinants.

BACKGROUND: People with brain disorders - defined as both, mental disorders and neurological disorders experience a wide range of psychosocial difficulties (PSDs) (e.g., concentrating, maintaining energy levels, and maintaining relationships). Research evidence is required to show that these PSDs are common across brain disorders. OBJECTIVES: To explore and gain deeper understanding of the experiences of people with seven brain disorders (alcohol dependency, depression, epilepsy, multiple sclerosis, Parkinson's disease, schizophrenia, stroke). It examines the common PSDs and their influencing factors. METHODS: Seventy seven qualitative studies identified in a systematic literature review and qualitative data derived from six focus groups are used to generate first-person narratives representing seven brain disorders. A theory-driven thematic analysis of these narratives identifies the PSDs and their influencing factors for comparison between the seven disorders. RESULTS: First-person narratives illustrate realities for people with brain disorders facilitating a deeper understanding of their every-day life experiences. Thematic analysis serves to highlight the commonalities, both of PSDs, such as loneliness, anger, uncertainty about the future and problems with work activities, and their determinants, such as work opportunities, trusting relationships and access to self-help groups. CONCLUSIONS: The strength of the methodology and the narratives is that they provide the opportunity for the reader to empathise with people with brain disorders and facilitate deeper levels of understanding of the complexity of the relationship of PSDs, determinants and facilitators. The latter reflect positive aspects of the lives of people with brain disorders. The result that many PSDs and their influencing factors are common to people with different brain disorders opens up the door to the possibility of using cross-cutting interventions involving different sectors. This strengthens the message that 'a great deal can be done' to improve the lived experience of persons with brain disorders when medical interventions are exhausted.

Patient safety in healthcare preregistration educational curricula: multiple case study-based investigations of eight medicine, nursing, pharmacy and physiotherapy university courses.

BACKGROUND: We sought to investigate the formal and informal ways preregistration students from medicine, nursing, pharmacy and the allied healthcare professions learn about patient safety. METHODS: We drew on Eraut's framework on formal and informal acquisition of professional knowledge to undertake a series of phased theoretically informed, in-depth comparative qualitative case studies of eight university courses. We collected policy and course documentation; interviews and focus groups with educators, students, health service staff, patients and policy makers; and course and work placement observations. Data were analysed thematically extracting emerging themes from different phases of data collection within cases, and then comparing these across cases. RESULTS: We conducted 38 focus groups with a total of 162 participants, undertook 82 observations of practice placements/learning activities and 33 semistructured interviews, and analysed 44 key documents. Patient safety tended to be either implicit in curricula or explicitly identified in a limited number of discrete topic areas. Students were predominantly taught about safety-related issues in isolation, with the consequence of only limited opportunities for interprofessional learning and bridging the gaps between educational, practice and policy contexts. Although patient safety role models were key to student learning in helping to develop and maintain a consistent safety ethos, their numbers were limited. CONCLUSIONS: 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.

Social support needs for equity in health and social care: a thematic analysis of experiences of people with chronic fatigue syndrome/myalgic encephalomyelitis.

BACKGROUND: Needs-based resource allocation is fundamental to equitable care provision, which can meet the often-complex, fluctuating needs of people with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME). This has posed challenges both for those providing and those seeking support providers, in building shared understanding of the condition and of actions to address it. This qualitative study reports on needs for equity in health and social care expressed by adults living with CFS/ME. METHODS: The participants were 35 adults with CFS/ME in England, purposively selected to provide variation in clinical presentations, social backgrounds and illness experiences. Accounts of experienced needs and needs-related encounters with health and social services were obtained through a focus group (n = 6) and semi-structured interviews (n = 35). These were transcribed and needs related topics identified through data-led thematic analysis. FINDINGS: Participants emphasised needs for personalised, timely and sustained support to alleviate CFS/ME impacts and regain life control, in three thematic areas: (1) Illness symptoms, functional limitations and illness management; (2) practical support and social care; (3) financial support. Access of people with CFS/ME to support from health and social services was seen to be constrained by barriers stemming from social, cultural, organisational and professional norms and practices, further heightened for disadvantaged groups including some ethnic minorities. These reduced opportunities for their illness to be explained or associated functional limitations and social disadvantages to be addressed through social support. Participants sought more understanding of bio-psycho-social aspects of CFS/ME, of felt needs of people with CFS/ME and of human rights and disability rights, for providing person-centred, equitable care. CONCLUSIONS: Changes in attitudes of health practitioners, policy makers and general public and more flexibly organised health and social care provision are needed to address equity issues in support needs expressed by people with CFS/ME, to be underpinned by research-based knowledge and communication, for public and professional education. Policy development should include shared decision-making and coordinated action across organizations working for people with CFS/ME, human rights and disadvantaged groups. Experiences of people with CFS/ME can usefully inform an understanding of equity in their health and social care.

Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) in adults: a qualitative study of perspectives from professional practice.

BACKGROUND: Chronic 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. METHODS: The 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. RESULTS: Five 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. CONCLUSIONS: While 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.

The expressed needs of people with chronic fatigue syndrome/myalgic encephalomyelitis: a systematic review.

BACKGROUND: We 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) METHODS: We 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. RESULTS: Thirty 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. CONCLUSIONS: Although 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.

The effect of osteogenic protein-1 in an in vivo physeal injury model.

The physis has limited ability to undergo repair, and injury may result in growth arrest. Osteogenic protein-1 promotes bone formation in diaphyseal defects, chondrocyte proliferation, and matrix synthesis. The authors' goal was to determine if the presence of osteogenic protein-1 in a defect involving the physis would promote cartilage repair, and in doing so, to determine the effect of osteogenic protein-1 on physeal growth. An ovine model of growth plate damage was used, in which the proximal medial physis of the tibia was partially ablated. The defect was filled with a Type I collagen paste containing osteogenic protein-1 (350 microg) or collagen alone. Growth rate was measured at 4, 14, and 56 days, and the defects were analyzed histologically at 4, 14, and 56 days. Bone bridge formation occurred within the defect site. However, osteogenic protein-1 promoted outgrowth of the adjacent physeal cartilage. The physeal cartilage underwent expansion until the mineral forming within the defect site blocked its progress. The effect was localized because only that portion of the physis at the defect margin appeared to be affected.