How do online patient support communities affect the experience of inflammatory bowel disease?: an online survey

Objective: To explore how participation in an online support community may impact upon the experience of inflammatory bowel disease (IBD). Design: An online survey. Setting: Study participants recruited through 35 IBD online communities. Participants: A total of 249 males and females aged 16–69 years, living with either Crohn’s disease (65.9%) or ulcerative colitis (26.1%) or awaiting formal diagnosis (8%). Results: Patients reported being members for an average of two years, with the majority accessing the community on a daily (46.9%) or weekly (40%) basis. Spending on average four hours per week online, approximately two-thirds of members posted between one and five messages per week. Members joined to find others in a similar situation and to obtain and share information and emotional support. Through participation members accessed a wealth of knowledge about all aspects of living with IBD and this was helpful in terms of accepting their illness and learning to manage it. The community also helped members see their illness more positively as well as contributing to an improvement in subjective wellbeing. However, some negatives aspects were noted. Conclusions: Online support communities may provide a useful shared space through which IBD patients may seek and provide both informational and emotional support. Many of these benefits may not be available through traditional healthcare. Whilst online support communities may be beneficial for those who choose to participate in them, they are not without limitations. Health professionals should be aware of the potential benefits and limitations of online communities

Protocol for a systematic review and thematic synthesis of patient experiences of central venous access devices in anti-cancer treatment

Background: Three types of central venous access devices (CVADs)—peripherally inserted central catheters (PICCs), skin-tunnelled central catheters (Hickman-type devices), and implantable chest wall Ports (Ports)—are routinely used in the intravenous administration of anti-cancer treatment. These devices avoid the need for peripheral cannulation and allow for home delivery of treatment. Assessments of these devices have tended to focus on medical and economic factors, but there is increased interest in the importance of patient experiences and perspectives in this area. The aim of this systematic review is to synthesise existing research regarding patient experiences of these CVADs to help clinicians guide, prepare, and support patients receiving CVADs for the administration of anti-cancer treatment. Method: A systematic search of MEDLINE, Embase, and CINAHL research databases will be carried out along with a supplementary reference list search. This review will include quantitative, qualitative, and mixed methods studies published in peer-review journals, reporting some aspect(s) of patient experiences or perspectives regarding the use of PICC, Hickman, or Port CVADs for the administration of anti-cancer drugs. The methodological quality and risk of bias of included papers will be assessed using the Mixed Methods Appraisal Tool (MMAT). Relevant outcome data will be extracted from included studies and analysed using a thematic synthesis approach. Discussion: The results section of the review will comprise thematic synthesis of quantitative studies, thematic synthesis of qualitative studies, and the aggregation of the two. Results will aim to offer an account of current understandings of patient experiences and perspective regarding PICC, Hickman-type, and Port devices in the context of anti-cancer treatment. Confidence in cumulative evidence will be assessed using the Confidence in the Evidence from Reviews of Qualitative research (CERQual) approach

Dealing with daily emotions—supportive activities for the elderly in a municipal care setting

There are diverse descriptions of supportive activities in nursing to be found in the literature. What they have in common is their association with good care outcomes, but they may differ depending on the context in which the care is given. In a Swedish municipal elderly care setting, registered nurses (RN) work in a consultative way and they describe a part of their tasks as comprising supportive activities without specifying what kind of supportive activities they mean. The aim of the study was to explore the main concern of the support given by RN to a group of patients in an elderly home care setting. The study was conducted using Grounded Theory. Data were collected using nonparticipant observations regarding the supportive activities of 12 RN at the home of 36 patients between the ages of 80 and 102. Most of the home visit lasted about 40 min but some lasted for 90 min. The central category was about dealing with daily emotions. This was done by encouraging the situation and reducing the patient's limitations, but situations also occurred in which there was a gap of support. Support was about capturing the emotions that the patient expressed for a particular moment, but there were also situations in which RN chose not to give support. To develop a holistic eldercare, more knowledge is needed about the factors causing the RN to choose not to provide support on some occasions

A need for “good eyes”: Experiences told by patients diagnosed with psychosis

This study highlights experiences of psychiatric care described by patients diagnosed with psychosis. The aim was to investigate how patients, based on earlier experiences, described their wishes and needs regarding the psychiatric care system. Data comprised material from four focus groups; analysis used an inductive thematic approach. Relationships with staff emerged as a recurring theme. During periods of psychosis, patients needed staff to act as “parental figures,” providing care, safety, and help in dealing with overwhelming stimulation from the outside word. In the ensuing struggle to devise a livable life, the need for relationships recurred. In this phase, staff needed to give their time, provide support through information, and mirror the patient's capacity and hope. The patient's trials were described as threatened by a lack of continuity and non-listening professionals. It was important for staff to listen and understand, and to see and respect the patients' viewpoints

‘Berrypicking’ in the formation of ideas about problem drinking amongst users of alcohol online support groups

Beliefs held by individuals about the illnesses or problems that affect them have been shown to impact upon the health and other outcomes that they achieve. Online support groups (OSGs) are one source of information used by those with health problems which may influence or determine what they think about their particular issue and how to resolve it. Problem drinking remains a major source of significant costs to society. This article explores whether the discussion forums of alcohol OSGs that do not follow the 12-step philosophy of Alcoholics Anonymous influence the formation of these beliefs, reporting on the outcome of thematic analysis of interviews with 25 users from five groups. It argues that Bates’ ‘Berrypicking’ model of information searching is helpful in illuminating group members’ information seeking activities. It looks at the four key aspects of berrypicking identified by Bates – the nature of the search query, the information ‘domains’ drawn on, the information retrieved and the search techniques used. The study finds that users are typically berrypickers, selecting information from different sources and forming their own interpretations

On-line health companion contact among chronically ill in the Netherlands

A health companion is a patient who supports another patient or patient group with a similar health condition. Health companions deliver more and more support by the Internet. However, little is known about the characteristics of the users, their motivation, type of technology used and effects on health and the healthcare delivery process. The objective of the paper is to understand motivation, technology and effects of on-line health companion contact in the Netherlands concerning chronic diseases (DBM, COPD, CHF, CRD, CMD). The On-line Health Companion Contact Model was created to frame the research process. An extensive on-line questionnaire was taken from patients with various chronic disorders and using on-line health companion contact to obtain quantitative and qualitative data. Obtaining information was found the key motivation for applying on-line health companion contact and several characteristics play a role in the selection to use a specific website, including: closed access; the topics discussed; the easy use; the type of users and a clear structure. Respondents prefer website facilitated by a forum or social networking site. Other factors are the possibility to share experiences with other patients, to find recognition and understanding and to meet new people. These positive aspects are of greater importance than the perceived barriers including privacy concerns, negative stories and whining other users and concerns regarding the quality of information. On-line health companion contact can increase the quality of life and self-management because respondents perceived to be better informed, better able to accept their disease, better deal with their situation and to receive an increased amount of social support

Methods for the synthesis of qualitative research: a critical review

<p>Abstract</p> <p>Background</p> <p>In recent years, a growing number of methods for synthesising qualitative research have emerged, particularly in relation to health-related research. There is a need for both researchers and commissioners to be able to distinguish between these methods and to select which method is the most appropriate to their situation.</p> <p>Discussion</p> <p>A number of methodological and conceptual links between these methods were identified and explored, while contrasting epistemological positions explained differences in approaches to issues such as quality assessment and extent of iteration. Methods broadly fall into 'realist' or 'idealist' epistemologies, which partly accounts for these differences.</p> <p>Summary</p> <p>Methods for qualitative synthesis vary across a range of dimensions. Commissioners of qualitative syntheses might wish to consider the kind of product they want and select their method – or type of method – accordingly.</p

Challenges to access and provision of palliative care for people who are homeless : a systematic review of qualitative research

Background: People who are homeless or vulnerably housed are a marginalized group who often experience high rates of morbidity and die young as a result of complex problems. Access to health care and support can be challenging, with access to palliative care even more so. This review presents a synthesis of published qualitative research exploring from the perspective of homeless people and those working to support them, current challenges to palliative care access and provision, in addition to suggestions for what may improve palliative care for this population. Methods: Systematic review of qualitative research analysed using thematic synthesis. PsycINFO, Medline, Sociological Abstracts, Social Services Abstracts, Science citations index and CINAHL were searched up to September 2016. Thematic synthesis involved a three-step inductive process to develop a deeper understanding of the challenges to and suggestions for the access and provision of palliative care for homeless people. Results: Thirteen qualitative articles, reporting nine studies were identified. The challenges to access and provision to palliative care were drawn from the data covering three broad areas, namely “the chaotic lifestyles sometimes associated with being homeless”, “the delivery of palliative care within a hostel for homeless people” and provision within “mainstream health care systems”. Obstacles were related to homeless persons competing day-to-day priorities, their experience of stigma in mainstream settings, the high burden on hostel staff in supporting residents at the end of life and inflexibility in mainstream health care systems. Suggestions for improving access to palliative care include building trust between homeless persons and health professionals, increasing collaboration between and flexibility within services, and providing more training and support for all professionals. Conclusions: The provision of palliative care can be complicated for all populations, however delivering palliative care for people who are homeless is influenced by a potentially greater and more varied range of factors, on both individual and systemic levels, than providing palliative care for the housed population. Careful consideration and potentially great changes will be needed within health care systems to ensure homeless populations have equitable access to palliative care

How does the general public view posthumous organ donation? A meta-synthesis of the qualitative literature

<p>Abstract</p> <p>Background</p> <p>Many individuals are unwilling to become posthumous organ donors, resulting in a disparity between the supply and demand for organ transplants. A meta-synthesis of the qualitative literature was therefore conducted to determine how the general public views posthumous organ donation.</p> <p>Methods</p> <p>Three online databases (PubMed, PsycINFO, Scopus) were searched for articles published between January 1990 and May 2008 using the following search terms: organ donation, qualitative, interview. Eligibility criteria were: examination of beliefs about posthumous organ donation; utilization of a qualitative research design; and publication in an English peer-reviewed journal. Exclusion criteria were examining how health professionals or family members of organ donors viewed posthumous organ donation. Grounded theory was used to identify the beliefs emerging from this literature. Thematically-related beliefs were then grouped to form themes.</p> <p>Results</p> <p>27 articles from 24 studies met the inclusion criteria and were reviewed. The major themes identified were: religion, death, altruism, personal relevance, the body, the family, medical professionals, and transplant recipients. An altruistic motivation to help others emerged as the most commonly identified motivator for becoming an organ donor, although feeling a sense of solidarity with the broader community and believing that donated organs are put to good use may be important preconditions for the emergence of this motivation. The two most commonly identified barriers were the need to maintain bodily integrity to safeguard progression into the afterlife and the unethical recovery of organs by medical professionals. The influence of stakeholder groups on willingness to become an organ donor was also found to vary by the level of control that each stakeholder group exerted over the donation recovery process and their perceived conflict of interest in wanting organ donation to proceed.</p> <p>Conclusions</p> <p>These findings afford insights into how individuals perceive posthumous organ donation.</p