Longitudinal qualitative exploration of cancer information-seeking experiences across the disease trajectory: the INFO-SEEK protocol

Introduction Α substantial corpus of literature has sought to describe the information-seeking behaviour of patients with cancer. Yet, available evidence comes mainly from cross-sectional studies, which provide ‘snapshots’ of patients’ information needs and information-seeking styles at a single time point. Only a few longitudinal studies currently exist; however, these are quantitative in nature and, despite successfully documenting changes in patients’ information needs throughout the clinical course of cancer, they have failed to provide an evidence-based interpretation of the causes and consequences of change. The goal of this study is threefold: First, we wish to provide a holistic understanding of how cancer information-seeking behaviour may evolve across different stages of the patient journey. Second, we will seek to elucidate the contextual and intervening conditions that may affect possible changes in information seeking. Third, we will attempt to identify what the consequences of these changes are, while heightening their implications for clinical practice and policy. Methods and analysis We will carry out a longitudinal qualitative study, based on face-to-face, in-depth interviews with approximately 25 individuals diagnosed with cancer. Patients will be recruited from 2 oncology hospitals located in Ticino, Switzerland, and will be interviewed at 3 different time points: (1) within 2 weeks after receiving the cancer diagnosis; (2) within 2 weeks after their initial treatment; and (3) 6 months after their initial treatment. All interviews will be recorded and transcribed verbatim. A grounded theory approach will be used for the analysis of the data. Ethics and dissemination The study protocol has been approved by the Ethics Committee of Canton Ticino (CE 2813). Participation in the study will be voluntary, and confidentiality and anonymity ensured. Prior to study participation, patients will be asked to provide signed informed consent. Findings will be disseminated in international peer-reviewed journals and presented in relevant conferences

An evaluation of the 'Living with Cancer' project: Using neuro-linguistic programming techniques to maximise the coping strategies of carers and patients living with cancer in Ellesmere Port

The 'Living with cancer' project aimed to improve communication, relationship, and coping skills of health professionals, cancer patients and their carers in Ellesmere Port. The project delivered NLP Diploma training to 55 health professionals between April 2001-March 2004.Commissioned by Chester and Halton NHS Trust and funded through the New Opportunities Fund

Exploring colorectal cancer patients' perceptions of the quality of their care

This report discusses the local situation in Halton with regard to colorectal cancer care by exploring how patients perceived the quality of their care.Widnes Primary Care Grou

Harnessing Information Technology to Inform Patients Facing Routine Decisions: Cancer Screening as a Test Case

PURPOSE Technology could transform routine decision making by anticipating patients’ information needs, assessing where patients are with decisions and preferences, personalizing educational experiences, facilitating patient-clinician information exchange, and supporting follow-up. This study evaluated whether patients and clinicians will use such a decision module and its impact on care, using 3 cancer screening decisions as test cases. METHODS Twelve practices with 55,453 patients using a patient portal participated in this prospective observational cohort study. Participation was open to patients who might face a cancer screening decision: women aged 40 to 49 who had not had a mammogram in 2 years, men aged 55 to 69 who had not had a prostate-specific antigen test in 2 years, and adults aged 50 to 74 overdue for colorectal cancer screening. Data sources included module responses, electronic health record data, and a postencounter survey. RESULTS In 1 year, one-fifth of the portal users (11,458 patients) faced a potential cancer screening decision. Among these patients, 20.6% started and 7.9% completed the decision module. Fully 47.2% of module completers shared responses with their clinician. After their next office visit, 57.8% of those surveyed thought their clinician had seen their responses, and many reported the module made their appointment more productive (40.7%), helped engage them in the decision (47.7%), broadened their knowledge (48.1%), and improved communication (37.5%). CONCLUSIONS Many patients face decisions that can be anticipated and proactively facilitated through technology. Although use of technology has the potential to make visits more efficient and effective, cultural, workflow, and technical changes are needed before it could be widely disseminated

Mapping the information-coping trajectory of young people coping with long term illness: An evidence based approach

Purpose - Purpose: We explore the relationship between information and coping information from the experiences of young people coping with long term illness. Design/methodology/approach - Methodology: Situational Analysis was used as a methodological approach. It has roots in the Chicago Symbolic Interactionism School. Cartographic approaches enabled the analysis, mapping the complexities emerging from the data. Findings - Findings: As the young people became more informed about their health conditions, and gained knowledge and understanding both about their illnesses, their own bodies and boundaries, their confidence and capacity to cope increased. Gaining confidence, the young people often wanted to share their knowledge becoming information providers themselves. From the data we identified five positions on an information-coping trajectory (1) Information deficiency (2) Feeling ill-informed (3) Needing an injection of information (4) Having information health and (5) Becoming an information donor. Research limitations/implications - Research limitations/implications: The research was limited to an analysis of thirty narratives. The research contributes to information theory by mapping clearly the relationship between information and coping. Originality/value - Originality/value: The information theories in this study have originality and multi-disciplinary value in the management of health and illness, and information studies

Hospice and Palliative Care - Access for All

Published to coincide with World Hospice and Palliative Care Day 2006, this report showcases the success stories of how hospice and palliative care has been provided in the most difficult settings. It also explores how services can be made more accessible and reflects the diversity of our society and the different beliefs and attitudes to care that people have. It focuses on a number of barriers to good care provision including geography, complex needs, culture and perception, and social exclusion

Preferences for cancer investigation:a vignette-based study of primary-care attendees

SummaryBackgroundThe UK lags behind many European countries in terms of cancer survival. Initiatives to address this disparity have focused on barriers to presentation, symptom recognition, and referral for specialist investigation. Selection of patients for further investigation has come under particular scrutiny, although preferences for referral thresholds in the UK population have not been studied. We investigated preferences for diagnostic testing for colorectal, lung, and pancreatic cancers in primary-care attendees.MethodsIn a vignette-based study, researchers recruited individuals aged at least 40 years attending 26 general practices in three areas of England between Dec 6, 2011, and Aug 1, 2012. Participants completed up to three of 12 vignettes (four for each of lung, pancreatic, and colorectal cancers), which were randomly assigned. The vignettes outlined a set of symptoms, the risk that these symptoms might indicate cancer (1%, 2%, 5%, or 10%), the relevant testing process, probable treatment, possible alternative diagnoses, and prognosis if cancer were identified. Participants were asked whether they would opt for diagnostic testing on the basis of the information in the vignette.Findings3469 participants completed 6930 vignettes. 3052 individuals (88%) opted for investigation in their first vignette. We recorded no strong evidence that participants were more likely to opt for investigation with a 1% increase in risk of cancer (odds ratio [OR] 1·02, 95% CI 0·99–1·06; p=0·189), although the association between risk and opting for investigation was strong when colorectal cancer was analysed alone (1·08, 1·03–1·13; p=0·0001). In multivariable analysis, age had an effect in all three cancer models: participants aged 60–69 years were significantly more likely to opt for investigation than were those aged 40–59 years, and those aged 70 years or older were less likely. Other variables associated with increased likelihood of opting for investigation were shorter travel times to testing centre (colorectal and lung cancers), a family history of cancer (colorectal and lung cancers), and higher household income (colorectal and pancreatic cancers).InterpretationParticipants in our sample expressed a clear preference for diagnostic testing at all risk levels, and individuals want to be tested at risk levels well below those stipulated by UK guidelines. This willingness should be considered during design of cancer pathways, particularly in primary care. The public engagement with our study should encourage general practitioners to involve patients in referral decision making.FundingThe National Institute for Health Research Programme Grants for Applied Research programme

Healing conversations: Developing a practical framework for clinical communication between Aboriginal communities and healthcare practitioners

In recognition of the ongoing health disparities experienced by Aboriginal and Torres Strait Islander peoples (hereafter Aboriginal), this scoping review explores the role and impact of the clinical communication process on Aboriginal healthcare provision. A medical education lens is applied, looking at the utility of a tailored clinical communication framework to assist health practitioners work more effectively with Aboriginal peoples and communities. The initial framework, building on existing communication guides, proposes four domains: content, process, relational and environmental. It places emphasis on critical self-reflection of the health practitioner’s own cultural identity and will be guided by collective Aboriginal world-views in select Australian settings. Using a two-eyed seeing approach the framework will be developed and tested in health professional education. The aim of this research journey is to enable health practitioners to have more effective healthcare conversations with Aboriginal peoples, working toward more socially just and equitable healthcare interactions and outcome

Approaching the end of life and dying with dementia in care homes : the accounts of family carers.

Research into end of life and dying with dementia in care homes from the family carer's perspective is limited. From the available evidence, it appears that family carers find themselves in an unfamiliar situation about which they lack knowledge and experience. Whilst dementia tends not to be acknowledged as a terminal illness by many family carers, they are expected to make end of life decisions on behalf of their relatives. Family carer decision-making is underpinned by values of quality of life, previously expressed wishes, comfort provision and dignity preservation. This is often approached when family carers are grieving for the anticipated loss of their relative and have their own personal needs that require to be addressed. Within a care home setting, a curative care–palliative care split is unhelpful in resolving these tensions and a model of comprehensive care appears a more appropriate approach. This requires ongoing communication between the person with dementia, family members and professionals from the early stages of the condition

Enhancing Care Transitions for Older People through Interprofessional Simulation: A Mixed Method Evaluation

Introduction: The educational needs of the health and social care workforce for delivering effective integrated care are important. This paper reports on the development, pilot and evaluation of an interprofessional simulation course, which aimed to support integrated care models for care transitions for older people from hospital to home. Theory and methods: The course development was informed by a literature review and a scoping exercise with the health and social care workforce. The course ran six times and was attended by health and social care professionals from hospital and community (n=49). The evaluation aimed to elicit staff perceptions of their learning about care transfers of older people and to explore application of learning into practice and perceived outcomes. The study used a sequential mixed method design with questionnaires completed pre (n=44) and post (n=47) course and interviews (n=9) 2-5 months later. Results:Participants evaluated interprofessional simulation as a successful strategy. Post-course, participants identified learning points and at the interviews, similar themes with examples of application in practice were: Understanding individual needs and empathy; Communicating with patients and families; Interprofessional working; Working across settings to achieve effective care transitions. Conclusions and discussion:An interprofessional simulation course successfully brought together health and social care professionals across settings to develop integrated care skills and improve care transitions for older people with complex needs from hospital to home