Promoting integrated care in prostate cancer through online prostate cancer-specific holistic needs assessment: a feasibility study in primary care.

PURPOSE: This study assessed the feasibility of implementing a novel model of integrated prostate cancer care involving an online prostate cancer-specific holistic needs assessment (sHNA) and shared digital communication between patients and their healthcare professionals (HCPs). The sHNA produces a semi-automated care plan that is finalised in consultation between the patient and their practice nurse. METHODS: Men living with and beyond prostate cancer were invited to participate in a 9-month non-randomised cluster controlled feasibility study. The intervention group was asked to complete the sHNA on three occasions. Data were collected using Patient Reported Outcome Measures (PROMs) at baseline, 10 and 24 weeks, and 9 months. Outcomes included recruitment, retention, acceptability, and engagement with the sHNA and PROMs. RESULTS: Fourteen general practices (8 intervention and 6 control), and 41 men (29 intervention and 12 control) participated. Initial patient engagement with the sHNA was high, with all but one receiving practice nurse-led follow-up and an individualised care plan. The sHNA proved useful in identifying 'red flag' symptoms, and helping practice nurses decide when to seek further medical care for the patients. There was a high level of acceptability for patients and HCPs. However, integration of care did not occur as intended because of problems linking hospital and general practice IT systems. CONCLUSION: While the study demonstrated the feasibility of implementing the sHNA, it did not meet the a priori progression criteria; as such, undertaking a definitive randomised controlled trial is not appropriate until the identified methodological and technical issues have been addressed.

"My gut feeling is we could do more..." a qualitative study exploring staff and patient perspectives before and after the implementation of an online prostate cancer-specific holistic needs assessment.

BACKGROUND: Men surviving prostate cancer report a wide range of unmet needs. Holistic needs assessments (HNA) are designed to capture these, but are traditionally paper-based, generic, and only carried out in secondary care despite national initiatives advocating a "shared care" approach. We developed an online prostate cancer-specific HNA (sHNA) built into existing IT healthcare infrastructure to provide a platform for service integration. Barriers and facilitators to implementation and use of the sHNA were explored from both the patients and healthcare professionals (HCPs) perspectives. METHODS: This qualitative study consisted of two phases. Phase 1 used semi-structured interviews to explore HCPs (n = 8) and patients (n = 10) perceptions of the sHNA, prior to implementation. Findings were used to develop an implementation strategy. Phase 2 used semi-structured interviews to explore HCPs (n = 4) and patients (n = 7) experienced barriers and motivators to using the sHNA, 9 to 12 months after implementation. Interviews were audio-recorded, transcribed verbatim and thematically analysed. Themes were mapped to the Theoretical Domains Framework. RESULTS: HCPs and patients anticipated many benefits from using the sHNA. Barriers to implementation included: confidence to work in depth with prostate cancer patients, organisational and cultural change, and patient factors. Our implementation strategy addressed these barriers by the provision of disease specific training delivered in part by a clinical nurse specialist; and a peer-led IT supporter. Following implementation HCPs and patients perceived the sHNA as beneficial to their practice and care, respectively. However, some patients experienced barriers in using the sHNA related predominately to symptom perception and time since treatment. HCPs suggested minor software refinements. CONCLUSIONS: This work supports the importance of identifying barriers and motivators to implementation, and using targeted action via the development of an implementation strategy to address these. Whilst this process should be on-going, undertaking this work at an early stage will help to optimise the implementation of the sHNA for future trials.

A Scoping Review of Stigma Related to Prostate Cancer in Black Men.

BACKGROUND: Prostate cancer (CaP) disproportionately affects 1-in-4 Black men and is a stigmatised disease within their communities. Yet, Black men are underrepresented in CaP research concerning stigma, which necessitates a scoping review to map available evidence on this topic to inform future research. AIMS: To map published literature on stigma related to CaP in Black men to understand their experiences and/or perceptions and identify directions for future research. METHODS: A scoping review was conducted using the five-step framework by Arksey and O'Malley. Studies published in English addressing stigma related to CaP from the perspectives of Black men and/or their families were included. We searched six databases including Medline, Embase, PsycInfo, CINAHL, Web of Science Core Collection and Google Scholar, from inception to April 2023. Citation searches were also conducted. Two independent reviewers conducted screening and data extraction. Data was synthesised using descriptive content analysis. RESULTS: Thirty-four eligible studies conducted in the USA, UK, Trinidad and Tobago, South Africa, Cameroon and Canada from 1995 to 2023 were included. A total of 1867 Black men with/without a CaP diagnosis and 145 adult partners were included. Review findings showed a complex intersection of self-stigma, public stigma and structural stigma impacted Black men's perceptions of their masculinity. While men's experiences/perceptions of stigma varied depending on their illness status, there were commonalities in their masculinity concerns (underpinned by stigma), which influenced their attitude towards digital rectal examination, post-treatment side effects and social interactions on CaP. These have implications for public health messaging on CaP within Black communities, as well as patient-provider interactions with the men. CONCLUSIONS: This novel review highlights the need to pay attention to how CaP is presented to Black men and their communities using avenues and languages that are culturally acceptable and empower them to negotiate self-stigma, public stigma and structural stigma related to CaP. Directions for further research were also identified.

High early mortality following percutaneous nephrostomy in metastatic cancer: a national analysis of outcomes.

OBJECTIVES: To assess the outcomes of percutaneous nephrostomy in England for renal decompression, in the context of metastatic cancer. METHODS: Retrospective observational study of all patients undergoing nephrostomy with a diagnosis of metastatic cancer from 2010 to 2019 in England, identified and followed up within Hospital Episode Statistics.The primary outcome measure was mortality (14-day and 30-day postprocedure). Secondary outcomes included subsequent chemotherapy or surgery and direct complications of nephrostomy. RESULTS: 10 932 patients were identified: 58.0% were male, 51.0% were >70 years old and 57.7% had no relevant comorbidities (according to Charlson's criteria, other than cancer).1 in 15 patients died within 14 days of nephrostomy and 1 in 6 died within 30 days. Factors associated with higher 30-day mortality were the presence of comorbidities (Charlson score 1-4 (OR 1.27, 95% CI 1.08 to 1.50, p=0.003), score 5+ (OR 1.29, 95% CI 1.14 to 1.45), p<0.001)); inpatient nephrostomy (OR 3.76, 95% CI 2.75 to 5.14, p<0.001) and admitted under the care of specialities of internal medicine (OR 2.10, 95% CI 1.84 to 2.40, p<0.001), oncology (OR 1.80, 95% CI 1.51 to 2.15, p<0.001), gynaecology/gynaeoncology (OR 1.66, 95% CI 1.21 to 2.28, p=0.002) or general surgery (OR 1.62, 95% CI 1.32 to 1.98, p<0.001)), compared with urology.25.4% received subsequent chemotherapy. Receiving chemotherapy was associated with younger patients (eg, age 18-29 (OR 4.04, 95% CI 2.66 to 6.12, p<0.001) and age 30-39 (OR 3.07, 95% CI 2.37 to 3.97, p<0.001)) and under the care of oncology (OR 1.60, 95% CI 1.40 to 1.83, p<0.001) or gynaecology/gynaeoncology (OR 1.64, 95%CI 1.28 to 2.10, p<0.001) compared with urology.43.8% had subsequent abdominopelvic surgery. Not receiving surgery was associated with inpatient nephrostomy (OR 0.82, 95%CI 0.72 to 0.95,p=0.007): non-genitourinary cancers (eg, gynaecology/gynaeoncology cancer (OR 0.86, 95% CI 0.74 to 0.99, p=0.037)); and under the care of a non-surgical specialty (medicine (OR 0.69, 95% CI 0.63 to 0.77, p<0.001), oncology (OR 0.58, 95% CI 0.51 to 0.66, p<0.001)).24.5% of patients had at least one direct complication of nephrostomy: 12.5% required early exchange of nephrostomy, 8.1% had bleeding and 6.7% had pyelonephritis. CONCLUSIONS: The decision to undertake nephrostomy in patients with poor prognosis cancer is complex and should be undertaken in a multidisciplinary team setting. Complication rates are high and minimal survival benefit is derived in many patients, especially in the context of emergency inpatient care.

Uptake and Use of Care Companion, a Web-Based Information Resource for Supporting Informal Carers of Older People: Mixed Methods Study.

BACKGROUND: Informal carers play a major role in supporting relatives and friends who are sick, disabled, or frail. Access to information, guidance, and support that are relevant to the lives and circumstances of carers is critical to carers feeling supported in their role. When unmet, this need is known to adversely affect carer resilience and well-being. To address this problem, Care Companion was co-designed with current and former carers and stakeholders as a free-to-use, web-based resource to provide access to a broad range of tailored information, including links to local and national resources. OBJECTIVE: This study aimed to investigate the real-world uptake and use of Care Companion in 1 region of England (with known carer population of approximately 100,000), with local health, community, and social care teams being asked to actively promote its use. METHODS: The study had a convergent parallel, mixed methods design and drew on the RE-AIM (Reach, Effectiveness, Adoption, Implementation, and Maintenance) framework. Data included metrics from carers' use of Care Companion, surveys completed by users recruited through general practice, and interviews with carers and health and social care providers regarding their views about Care Companion and their response to it. Quantitative data were analyzed using descriptive statistics. Interview data were analyzed thematically and synthesized to create overarching themes. The qualitative findings were used for in-depth exploration and interpretation of quantitative results. RESULTS: Despite awareness-raising activities by relevant health, social care, and community organizations, there was limited uptake with only 556 carers (0.87% of the known carer population of 100,000) registering to use Care Companion in total, with median of 2 (mean 7.2; mode 2) visits per registered user. Interviews with carers (n=29) and stakeholders (n=12) identified 7 key themes that influenced registration, use, and perceived value: stakeholders' signposting of carers to Care Companion, expectations about Care Companion, activity levels and conflicting priorities, experience of using Care Companion, relevance to personal circumstances, social isolation and networks, and experience with digital technology. Although many interviewed carers felt that it was potentially useful, few considered it as being of direct relevance to their own circumstances. For some, concerns about social isolation and lack of hands-on support were more pressing issues than the need for information. CONCLUSIONS: The gap between the enthusiastic views expressed by carers during Care Companion's co-design and the subsequent low level of uptake and user experience observed in this evaluation suggests that the co-design process may have lacked a sufficiently diverse set of viewpoints. Numerous factors were identified as contributing to Care Companion's level of use, some of which might have been anticipated during its co-design. More emphasis on the development and implementation, including continuing co-design support after deployment, may have supported increased use.

A Web-Based Prostate Cancer-Specific Holistic Needs Assessment (CHAT-P): Multimethod Study From Concept to Clinical Practice.

BACKGROUND: Men with prostate cancer experience immediate and long-term consequences of the disease and its treatment. They require both long-term monitoring for recurrence or progression and follow-up to identify and help manage psychosocial and physical impacts. Holistic Needs Assessment aims to ensure patient-centered continuing cancer care. However, paper-based generic tools have had limited uptake within cancer services, and there is little evidence of their impact. With the expansion of remote methods of care delivery and to enhance the value of generic tools, we developed a web-based Composite Holistic Needs Assessment Adaptive Tool-Prostate (CHAT-P) specifically for prostate cancer. OBJECTIVE: This paper described the context, conceptual underpinning, and approach to design that informed the development of CHAT-P, starting from the initial concept to readiness for deployment. Through this narrative, we sought to contribute to the expanding body of knowledge regarding the coproduction process of innovative digital systems with potential for enhanced cancer care delivery. METHODS: The development of CHAT-P was guided by the principles of coproduction. Men with prostate cancer and health care professionals contributed to each stage of the process. Testing was conducted iteratively over a 5-year period. An initial rapid review of patient-reported outcome measures identified candidate items for inclusion. These items were categorized and allocated to overarching domains. After the first round of user testing, further items were added, improvements were made to the adaptive branching system, and response categories were refined. A functioning version of CHAT-P was tested with 16 patients recruited from 3 outpatient clinics, with interviewers adopting the think-aloud technique. Interview transcripts were analyzed using a framework approach. Interviews and informal discussions with health care professionals informed the development of a linked care plan and clinician-facing platform, which were incorporated into a separate feasibility study of digitally enhanced integrated cancer care. RESULTS: The findings from the interview study demonstrated the usability, acceptability, and potential value of CHAT-P. Men recognized the benefits of a personalized approach and the importance of a holistic understanding of their needs. Preparation for the consultation by the completion of CHAT-P was also recognized as empowering. The possible limitations identified were related to the importance of care teams responding to the issues selected in the assessment. The subsequent feasibility study highlighted the need for attention to men's psychological concerns and demonstrated the ability of CHAT-P to capture red flag symptoms requiring urgent investigation. CONCLUSIONS: CHAT-P offers an innovative means by which men can communicate their concerns to their health care teams before a physical or remote consultation. There is now a need for a full evaluation of the implementation process and outcomes where CHAT-P is introduced into the clinical pathway. There is also scope for adapting the CHAT-P model to other cancers.

Correction: A Web-Based Prostate Cancer-Specific Holistic Needs Assessment (CHAT-P): Multimethod Study From Concept to Clinical Practice.

[This corrects the article DOI: 10.2196/32153.].

Comparing an Imaging-guided Pathway with the Standard Pathway for Staging Muscle-invasive Bladder Cancer: Preliminary Data from the BladderPath Study.

Transurethral resection of bladder tumour (TURBT) is central to the diagnosis of muscle-invasive bladder cancer (MIBC). With the oncological safety of TURBT unknown, staging inaccuracies commonplace, and correct treatment of MIBC potentially delayed, multiparametric magnetic resonance imaging (mpMRI) may offer rapid, accurate, and noninvasive diagnosis of MIBC. BladderPath is a randomised trial comparing risk-stratified (5-point Likert scale) image-directed care with TURBT for patients with newly diagnosed BC. To date, we have screened 279 patients and randomised 113. Here we report on the first 100 participants to complete staging: 48 in pathway 1 (TURBT) and 52 in pathway 2 (mpMRI for possible MIBC, Likert 3-5). Fifty of 52 participants designated Likert 1-2 (probable NMIBC) from both pathways were confirmed as having NMIBC (96%). Ten of 11 cases diagnosed as NMIBC by mpMRI have been pathologically confirmed as NMIBC, and 10/15 cases diagnosed as MIBC by mpMRI have been treated as MIBC (5 participants underwent TURBT). The specificity of mpMRI for identification of MIBC remains a limitation. These initial experiences indicate that it is feasible to direct possible MIBC patients to mpMRI for staging instead of TURBT. Furthermore, a 5-point Likert scale accurately identifies patients with low risk of MIBC (Likert 1-2), and flexible cystoscopy biopsies appear sufficient for diagnosing BC. PATIENT SUMMARY: We are conducting a clinical trial to assess whether some bladder tumour surgery can be replaced by magnetic resonance imaging scans to determine the stage of the cancer in patients whose tumours appear to be invasive. Our early data suggest that this approach is feasible. The data also show that using a visual score ('Likert scale') can help to identify bladder tumours that are very unlikely to be invasive, and that taking a biopsy in the outpatient clinic when first inspecting the bladder via a camera (diagnostic flexible cystoscopy) is useful for confirming bladder cancer.

"Good care" throughout the prostate cancer pathway: Perspectives of patients and health professionals.

PURPOSE: Men in follow up for prostate cancer represent the largest proportion of patients with the illness. In the United Kingdom, primary care is increasingly involved in caring for these patients. Little is known however regarding the factors that determine men's evaluation of their care and primary healthcare professionals' perceptions of the care they provide. This study aimed to investigate patient and primary care based health professionals' perspectives of what constitutes 'good care' for men with prostate cancer, including limiting or facilitating factors. METHOD: Semi-structured interviews were conducted with ten patients and eight primary care based healthcare professionals and thematically analysed in collaboration with a patient representative group. RESULTS: Good care was identified by patient participants, with aspects of communication, including information, active participation, sensitivity of approach and context being highlighted. Healthcare professionals also prioritised communication as the basis of good care and recognised the benefits of locally based services. CONCLUSIONS: Treatments in prostate and other cancers continue to improve with corresponding increases in survival. To further develop and sustain the good care that patients require to help them cope with diagnosis, treatment and long term adjustment, investment in resources, training and innovative communication systems between patients, generalist and specialist services are required.

Exploring the Perceived Usefulness and Ease of Use of a Personalized Web-Based Resource (Care Companion) to Support Informal Caring: Qualitative Descriptive Study.

BACKGROUND: Informal carers play an increasingly vital role in supporting the older population and the sustainability of health care systems. Care Companion is a theory-based and coproduced Web-based intervention to help support informal carers' resilience. It aims to provide personalized access to information and resources that are responsive to individuals' caring needs and responsibilities and thereby reduce the burdens associated with caregiving roles. Following the development of a prototype, it was necessary to undertake user acceptability testing to assess its suitability for wider implementation. OBJECTIVE: This study aimed to undertake user acceptance testing to investigate the perceived usefulness and ease of use of Care Companion. The key objectives were to (1) explore how potential and actual users perceived its usefulness, (2) explore the barriers and facilitators to its uptake and use and (3) gather suggestions to inform plans for an area-wide implementation. METHODS: We conducted user acceptance testing underpinned by principles of rapid appraisal using a qualitative descriptive approach. Focus groups, observations, and semistructured interviews were used in two phases of data collection. Participants were adult carers who were recruited through local support groups. Within the first phase, think-aloud interviews and observations were undertaken while the carers familiarized themselves with and navigated through the platform. In the second phase, focus group discussions were undertaken. Interested participants were then invited to trial Care Companion for up to 4 weeks and were followed up through semistructured telephone interviews exploring their experiences of using the platform. Thematic analysis was applied to the data, and a coding framework was developed iteratively with each phase of the study, informing subsequent phases of data collection and analysis. RESULTS: Overall, Care Companion was perceived to be a useful tool to support caregiving activities. The key themes were related to its appearance and ease of use, the profile setup and log-in process, concerns related to the safety and confidentiality of personal information, potential barriers to use and uptake and suggestions for overcoming them, and suggestions for improving Care Companion. More specifically, these related to the need for personalized resources aimed specifically at the carers (instead of care recipients), the benefits of incorporating a Web-based journal, the importance of providing transparency about security and data usage, minimizing barriers to initial registration, offering demonstrations to support uptake by people with low technological literacy, and the need to develop a culturally sensitive approach. CONCLUSIONS: The findings identified ways of improving the ease of use and usefulness of Care Companion and demonstrated the importance of undertaking detailed user acceptance testing when developing an intervention for a diverse population, such as informal carers of older people. These findings have informed the further refinement of Care Companion and the strategy for its full implementation.

Coproduction of a Theory-Based Digital Resource for Unpaid Carers (The Care Companion): Mixed-Methods Study.

BACKGROUND: Family and other unpaid carers are crucial to supporting the growing population of older people that are living outside residential care with frailty and comorbidities. The burden associated with caring affects carers' well-being, thus limiting the sustainability of such care. There is a need for accessible, flexible, and responsive interventions that promote carers' coping and resilience, and hence support maintenance of the health, well-being, and independence of the cared-for person. OBJECTIVE: This study aimed to coproduce a digital program for carers to promote resilience and coping through supporting effective use of information and other Web-based resources. Its overlapping stages comprised the following: understanding the ways in which Web-based interventions may address challenges faced by carers, identifying target behaviors for the intervention, identifying intervention components, and developing the intervention prototype. METHODS: The study was informed by person-based theories of coproduction and involved substantial patient and public involvement. It drew on the Behavior Change Wheel framework to support a systematic focus on behavioral issues relevant to caring. It comprised scoping literature reviews, interviews, and focus groups with carers and organizational stakeholders, and an agile, lean approach to information technology development. Qualitative data were analyzed using a thematic approach. RESULTS: Four behavioral challenges were identified: burden of care, lack of knowledge, self-efficacy, and lack of time. Local health and social care services for carers were only being accessed by a minority of carers. Carers appreciated the potential value of Web-based resources but described difficulty identifying reliable information at times of need. Key aspects of behavior change relevant to addressing these challenges were education (increasing knowledge and understanding), enablement (increasing means and reducing barriers for undertaking caring roles), and persuasion (changing beliefs and encouraging action toward active use of the intervention). In collaboration with carers, this was used to define requirements for the program. A resources library was created to link to websites, Web-based guidance, videos, and other material that addressed condition-specific and generic information. Each resource was classified according to a taxonomy itemizing over 30 different subcategories of need under the headings Care Needs (of the cared-for person), General Information and Advice, and Sustaining the Carer. In addition, features such as a journal and mood monitor were incorporated to address other enablement challenges. The need for proactive, personalized prompts emerged; the program regularly prompts the carer to revisit and update their profile, which, together with their previous use of the intervention, drives notifications about resources and actions that may be of value. CONCLUSIONS: The person-based approach allowed an in-depth understanding of the biopsychosocial context of caring to inform the production of an engaging, relevant, applicable, and feasible Web-based intervention. User acceptance and feasibility testing is currently underway.

Integrated Care in Prostate Cancer (ICARE-P): Nonrandomized Controlled Feasibility Study of Online Holistic Needs Assessment, Linking the Patient and the Health Care Team.

BACKGROUND: The potential of technology to aid integration of care delivery systems is being explored in a range of contexts across a variety of conditions in the United Kingdom. Prostate cancer is the most common cancer in UK men. With a 10-year survival rate of 84%, there is a need to explore innovative methods of care that are integrated between primary health care providers and specialist teams in order to address long-term consequences of the disease and its treatment as well as to provide continued monitoring for recurrence. OBJECTIVE: Our aim was to test the feasibility of a randomized controlled trial to compare a model of prostate cancer continuing and follow-up care integration, underpinned by digital technology, with usual care in terms of clinical and cost-effectiveness, patient-reported outcomes, and experience. METHODS: A first phase of the study has included development of an online adaptive prostate specific Holistic Needs Assessment system (HNA), training for primary care-based nurses, training of an IT peer supporter, and interviews with health care professionals and men with prostate cancer to explore views of their care, experience of technology, and views of the proposed intervention. In Phase 2, men in the intervention arm will complete the HNA at home to help identify and articulate concerns and share them with their health care professionals, in both primary and specialist care. Participants in the control arm will receive usual care. Outcomes including quality of life and well-being, prostate-specific concerns, and patient enablement will be measured 3 times over a 9-month period. RESULTS: Findings from phase 1 indicated strong support for the intervention among men, including those who had had little experience of digital technology. Men expressed a range of views on ways that the online system might be used within a clinical pathway. Health care professionals gave valuable feedback on how the output of the assessment might be presented to encourage engagement and uptake by clinical teams. Recruitment to the second phase of the study, the feasibility trial, commenced March 2017. CONCLUSIONS: To our knowledge, this study is the first in the United Kingdom to trial an online holistic needs assessment for men with prostate cancer, with data shared between patients and primary and secondary care providers. This study addresses recommendations in recent policy documents promoting the importance of data sharing and enhanced communication between care providers as a basis for care integration. We anticipate that this model of care will ultimately provide important benefits for both patients and the National Health Service. TRIAL REGISTRATION: International Standard Randomized Controlled Trial Number (ISRCTN): 31380482; http://www.isrctn.com/ISRCTN31380482 (Archived by WebCite at http://www.webcitation.org/6s8I42u5N).

The threatened self: Considerations of time, place, and uncertainty in advanced illness.

OBJECTIVES: Loss of self and the transition to patient-hood have been widely discussed in relation to the experience of advanced illness. Individuals however often maintain identities or selves beyond those demanded by the circumstances of being a patient. This study explores the presentation of this personal identity and interactions between intrinsic and extrinsic elements that support or threaten its maintenance. In particular, this study examined the impact of uncertainty on the representations of self and the part played by the patient's health care professionals and the systems in which they are embedded, in limiting or reinforcing its effects. METHODS: Complementary methods of ethnographic observation and serial narrative interviews were adopted to explore both the lo"cal social and health care context and the changing presentation of self by patients with advanced multimorbidity, chronic illness, and cancer. In total, 36 interviews were undertaken with 16 patients. Analysis was guided by concepts of time and place, combining contextual data with the unfolding patient narrative. RESULTS: Good pain and symptom control was a necessary, but not sufficient, condition for the maintenance of a personal identity. Essential agentic elements included knowledge of appropriate and immediate sources of help. Also important were a sense of control achieved through a shared understanding with health care professionals of the condition and active management of uncertainty. In addition, the maintenance of self depended on keeping a connection with aspects of life associated with a pre-illness identity. Critically, this self was contingent on external recognition, acknowledgement, and validation. CONCLUSION: Professional relationships that focus solely on the 'person as patient' may be insufficient for patients' needs. Health care professionals should seek to recognize and acknowledge the personal identity that may be critical to their sense of self-worth. Through an ongoing relationship guiding the patient through the uncertainties they face, health care professionals may play an essential role in sustaining the 'patient as person'. STATEMENT OF CONTRIBUTION: What is already known on this subject? Loss of self or personal identity occurs in a range of serious conditions. The sick self is incorporated in a process of identity reconstruction. Uncertainty is an inherent aspect of serious and advanced illness. Unmanaged uncertainty results in a range of negative psychological consequences that contribute to the loss of personal identity. Information and communication with health care professionals help patients manage uncertainty. What does this study add? Sufferers may retain a personal identity continuous with a pre-illness self using internal and external resources. The pre-illness self may be subsumed by the patient self especially at times of transition and maximum uncertainty. Acknowledgement and facilitation by health care professionals can enable the preservation of the pre-illness self.

'My body's falling apart.' Understanding the experiences of patients with advanced multimorbidity to improve care: serial interviews with patients and carers.

OBJECTIVE: Multimorbidity is increasingly common in the last year of life, and associated with frequent hospital admissions. The epidemiology is well described, but patient perspectives are less understood. We report the experiences and perceptions of people with advanced multimorbidity to inform improvements in palliative and end-of-life care. DESIGN: Multicentre study including serial, multiperspective interviews with patients and their family carers; an interpretive analysis of experiences and understanding of living with advanced multimorbidity. PARTICIPANTS: We recruited patients and their family carers using established UK clinical guidance for the identification of people anticipated to be in their last year of life. SETTINGS: An acute admissions unit in a Scottish regional hospital; a large English general practice; a London respiratory outpatient clinic. RESULTS: We analysed 87 interviews with 37 patients and 17 carers. They struggled with multiple changing medications, multiple services better aligned with single conditions such as cancer, and a lack of coordination and continuity of care. Family carers spoke of physical, mental and emotional exhaustion and feeling undervalued by professionals. Patients and carers frequently saw deteriorating health as part of 'growing old'. Many used a 'day-to-day' approach to self-management that hindered engagement with advance care planning and open discussions about future care. 'Palliative care' and 'dying soon' were closely related concepts for many patients, carers and professionals, so rarely discussed. CONCLUSIONS: Patients with advanced multimorbidity received less care than their illness burden would appear to merit. Some people did restrict their interactions with care providers to preserve autonomy, but many had a limited understanding of their multiple conditions, medications and available services, and found accessing support impersonal and challenging. Greater awareness of the needs associated with advanced multimorbidity and the coping strategies adopted by these patients and carers is necessary, together with more straightforward access to appropriate care.

The provision of emotional labour by health care assistants caring for dying cancer patients in the community: a qualitative study into the experiences of health care assistants and bereaved family carers.

BACKGROUND: While previous research has suggested that health care assistants supporting palliative care work in the community regard the provision of emotional labour as a key aspect of their role, little research has explored the experiences of family carers who are the recipients of such support. OBJECTIVE: To explore the emotional labour undertaken by health care assistants working in community palliative care from the perspectives of both health care assistants and bereaved family carers. DESIGN: We conducted a qualitative interview study in 2011-2012 with bereaved family carers of cancer patients who had received the services of health care assistants in the community, and health care assistants who provided community palliative care services. Transcripts were coded and analysed for emergent themes using a constant comparative technique. SETTINGS: Three different research sites in the United Kingdom, all providing community palliative care. PARTICIPANTS AND METHODS: Semi-structured interviews were conducted with 33 bereaved family carers and eight health care assistants. RESULTS: Health care assistants view one of their key roles as providing emotional support to patients and their family carers, and family carers recognise and value this emotional support. Emotional support by health care assistants was demonstrated in three main ways: the relationships which health care assistants developed and maintained on the professional-personal boundary; the ability of health care assistants to negotiate clinical/domestic boundaries in the home; the ways in which health care assistants and family carers worked together to enable the patient to die at home. CONCLUSION: Through their emotional labour, health care assistants perform an important role in community palliative care which is greatly valued by family carers. While recent reports have highlighted potential dangers in the ambiguity of their role, any attempts to clarify the 'boundaries' of the health care assistant role should acknowledge the advantages health care assistants can bring in bridging potential gaps between healthcare professionals and family carers.