Karen Cox

After you: conversations between patients and healthcare professionals in planning for end of life care

BackgroundThis study explores with patients, carers and health care professionals if, when and how Advance Care Planning conversations about patients’ preferences for place of care (and death) were facilitated and documented.MethodsThe study adopted an exploratory case study design using qualitative interviews, across five services delivering palliative care to cancer and non-cancer patients within an urban and rural English region. The study recruited 18 cases made up of patients (Nu2009=u200918; 10 men; 8 women; median age 75); nominated relatives (Nu2009=u200911; 7 women; 4 men; median age 65) and healthcare professionals (Nu2009=u200915) caring for the patient. Data collection included: 18 initial interviews (nine separate interviews with patients and 9 joint interviews with patients and relatives) and follow up interviews in 6 cases (involving a total of 5 patients and 5 relatives) within one year of the first interview. Five group interviews were conducted with 15 healthcare professionals; 8 of whom also participated in follow up interviews to review their involvement with patients in our study.ResultsPatients demonstrated varying degrees of reticence, evasion or reluctance to initiate any conversations about end of life care preferences. Most assumed that staff would initiate such conversations, while staff were often hesitant to do so. Staff-identified barriers included the perceived risks of taking away hope and issues of timing. Staff were often guided by cues from the patient or by intuition about when to initiate these discussions.ConclusionsThis study provides insights into the complexities surrounding the initiation of Advance Care Planning involving conversations about end of life care preferences with patients who are identified as having palliative care needs, in particular in relation to the risks inherent in the process of having conversations where mortality must be acknowledged. Future research is needed to examine how to develop interventions to help initiate conversations to develop person centred plans to manage the end of life.

A modified systematic review of research evidence about education for pre-registration nurses in palliative care

BackgroundWe undertook a modified systematic review of research regarding educational approaches to and effectiveness of pre-registration palliative care nursing, to inform the development of a short course in palliative care for pre-registration nursing students in Cameroon. The aim of this review was to examine educational approaches applied to pre-registration palliative care nursing education and their effectiveness, and to discuss implications for the development of palliative care curricula in resource-poor countries.MethodA modified systematic review of research on palliative care educational interventions, conducted with pre-registration student nurses was undertaken. Relevant literature was gathered from CINAHL, EMBASE, MEDLINE and PsychINFO databases for the period 2000–2013. Inclusion was limited to studies of educational interventions evaluating the effectiveness and outcomes of palliative and end of life care education with pre-registration student nurses.Results17 studies were found, all of which were conducted in resource-rich countries: United States of America, Canada, Australia, and United Kingdom. Palliative care nursing education at pre-registration level is either delivered as a discrete course within the curriculum or palliative care content is embedded into other nursing specialty courses throughout the wider curriculum. Palliative care education is delivered to students at a variety of stages in their nursing program, using a mix of both didactic and experiential educational strategies. Course facilitators span palliative care specialists, educators who have attended ‘train-the-trainer’ courses in palliative care, and nurses with hospice experience. Education is underpinned by transformative and experiential learning theories and reported as effective in improving students’ attitudes towards care of the dying.ConclusionThe educational strategies identified in this review may be applicable to resource-poor countries. However, there are challenges in transferability because of the lack of availability of specialist palliative care practitioners who can serve as educators, specialist palliative care units/institutions for experiential learning, funds to design and use high fidelity simulations, and palliative care textbooks and other educational materials. There is thus a need for innovative educational strategies that can bridge these barriers in resource-poor countries. There is also a need for further research into how palliative care education impacts on pre-registration student nurses’ knowledge and practice.

Longitudinal, mixed method study to look at the experiences and knowledge of non melanoma skin cancer from diagnosis to one year.

BackgroundSkin cancer is the most common type of cancer in humans and the incidence is increasing worldwide. Our objective was to understanding the needs, experiences and knowledge of individuals with Non Melanoma Skin Cancer (NMSC) from diagnosis up until one year.MethodsPatients with NMSC completed questionnaires at diagnosis, treatment, 8xa0weeks post treatment and 12xa0months post diagnosis. Body image, psychological morbidity and Quality of Life (QOL) were assessed at each time point, with the exception of QOL that was not assessed at diagnosis. Knowledge of NMSC was assessed at baseline and 8xa0weeks. A sub-sample of participants was also interviewed to allow a more in-depth exploration of patients’ experiences.Results76 participants completed the initial questionnaire, of which 15 were interviewed. Patients were anxious about a diagnosis of skin cancer, however they were no more depressed or anxious than the general population. QOL significantly improved from diagnosis to 8xa0weeks and from diagnosis to one year. Knowledge of NMSC was poor and did not improve after treatment. Hairdressers were highlighted as playing an important role in raising awareness and encouraging individuals to seek medical help. Most participants were aware of the need to check their skin for suspicious lesions but were not sure what to look for. At one year participants had forgotten their experience and were not overly concerned about skin cancer.ConclusionThere is a need to raise awareness of the signs and symptoms of NMSC. Information on skin cancer needs to be tailored to the individual both at the start of treatment and during the follow up months, ensuring that participants’ needs and expectations are met. Targeting education at individuals in the community who regularly come into contact with skin should help in early identification of NMSC. This is important since skin cancer caught early is easily treatable and delay in presentation leads to larger and more complex lesions which impacts in terms of increased morbidity and increased health care costs.

The potential value of comprehensive geriatric assessment in evaluating older women with primary operable breast cancer undergoing surgery or non-operative treatment--a pilot study.

OBJECTIVESnBreast cancer in older women raises a number of discrete issues, including how healthcare professionals can best decide which patients are candidates for surgery. A pilot study involving women aged ≥70years newly diagnosed with early operable primary breast cancer was conducted aiming to explore the potential value of comprehensive geriatric assessment (CGA).nnnMATERIALS AND METHODSnDecision of primary treatment followed consultation with the clinical team and was not guided by any aspect of this study. CGA, using a validated cancer-specific tool, was conducted within 6weeks and 6months after diagnosis, complemented by formal measures of quality of life (QOL) (using EORTC QLQ-C30 and QLQ-BR23) and semi-structured interviews. A total of 47 female patients with a new diagnosis of clinically early (stage 1 or 2; cT0-2N0-1M0) operable primary breast cancer proven histologically, were recruited.nnnRESULTSnCGA determined that increasing age (≥80years) (p=0.001), greater (≥4) comorbidity (p=0.022), greater number (≥4) of daily medications (p=0.002), and slower (≥19s) timed up and go (TUG) (p=0.016) score were significantly related to non-surgical treatment at 6weeks after diagnosis. Baseline QOL scores were generally good and they remained stable at 6months follow-up. As opposed to CGA, there was no correlation between QOL scores and the treatment modality identified. Semi-structured interviews identified themes consistent with findings from QOL assessment.nnnCONCLUSIONnThe pilot study confirmed the feasibility of conducting CGA in a research setting which appeared to have value in assessing this patient population. More data will be required to definitively identify the components for geriatric assessment in this setting. The study has now extended into two more centres.

The psychological impact of undergoing genetic-risk profiling in men with a family history of prostate cancer

The ability to identify men at genetically high‐risk of prostate cancer (PrCa) would enable screening to be targeted at those most in need. This study explored the psychological impact (in terms of general and PrCa‐specific worry and risk perceptions) on men with a family history of PrCa, undergoing prostate screening and genetic‐risk profiling, within a research study.

A qualitative evaluation of the impact of a palliative care course on preregistration nursing students’ practice in Cameroon

BackgroundCurrent evidence suggests that palliative care education can improve preregistration nursing students’ competencies in palliative care. However, it is not known whether these competencies are translated into students’ practice in the care of patients who are approaching the end of life. This paper seeks to contribute to the palliative care evidence base by examining how nursing students in receipt of education report transfer of learning to practice, and what the barriers and facilitators may be, in a resource-poor country.MethodsWe utilised focus groups and individual critical incident interviews to explore nursing students’ palliative care learning transfer. Three focus groups, consisting of 23 participants and 10 individual critical incident interviews were conducted with preregistration nursing student who had attended a palliative care course in Cameroon and had experience caring for a patient approaching the end of life. Data was analysed thematically, using the framework approach.ResultsThe results suggest that nursing students in receipt of palliative care education can transfer their learning to practice. Students reported recognizing patients with palliative care needs, providing patients with physical, psychosocial and spiritual support and communicating patient information to the wider care team. They did however perceive some barriers to this transfer which were either related to themselves, qualified nurses, the practice setting or family caregivers and patients.ConclusionThe findings from this study suggest that nursing student in receipt of palliative care education can use their learning in practice to provide care to patients and their families approaching the end of life. Nevertheless, these findings need to be treated with some caution given the self-reported nature of the data. Demonstrating the link between preregistration palliative care education and patient care is vital to ensuring that newly acquired knowledge and skills are translated and embedded into clinical practice. This study also has implications for advocating for palliative care policies and adequately preparing clinical placement sites for students’ learning and transfer of learning.

Can Healthcare Assistant Training (CHAT) improve the relational care of older people? Study protocol for a pilot cluster randomised controlled trial

BackgroundPeople aged 75xa0years and over account for 1 in 4 of all hospital admissions. There has been increasing recognition of problems in the care of older people, particularly in hospitals. Evidence suggests that older people judge the care they receive in terms of kindness, empathy, compassion, respectful communication and being seen as a person not just a patient. These are aspects of care to which we refer when we use the term ‘relational care’. Healthcare assistants deliver an increasing proportion of direct care to older people, yet their training needs are often overlooked.Methods/DesignThis study will determine the acceptability and feasibility of a cluster randomised controlled trial of ‘Older People’s Shoes’ a 2-day training intervention for healthcare assistants caring for older people in hospital. Within this pilot, 2-arm, parallel, cluster randomised controlled trial, healthcare assistants within acute hospital wards are randomised to either the 2-day training intervention or training as usual. Registered nurses deliver ‘Older People’s Shoes’ over 2xa0days, approximately 1xa0week apart. It contains three components: experiential learning about ageing, exploration of older people’s stories, and customer care. Outcomes will be measured at the level of patient (experience of emotional care and quality of life during their hospital stay), healthcare assistant (empathy and attitudes towards older people), and ward (quality of staff/patient interaction). Semi-structured interviews of a purposive sample of healthcare assistants receiving the intervention, and all trainers delivering the intervention, will be undertaken to gain insights into the experiences of both the intervention and the trial, and its perceived impact on practice.DiscussionFew training interventions for care staff have been rigorously tested using randomised designs.xa0This study willxa0establish the viability of a definitive cluster randomised controlled trial of a new training intervention to improve the relational care proided by healthcare assistants working with older people in hospital.Trial registrationThe study was registered as an International Standard Randomised Controlled Trial (ISRCTN10385799) on 29 December 2014.