Supporting people with active and advanced disease: a rapid review of the evidence

1.1 Background: the NCSI AAD group The National Cancer Survivorship Initiative (NCSI, 2010) was set up in response to the NHS Cancer Reform Strategy (Department of Health, 2007) as a collaboration between Macmillan Cancer Support, the Department of Health and NHS Improvement, with the goal to achieve a better understanding of the experiences of cancer survivors and to advocate for the provision of services to support them. Within this broad remit, it was recognised that there was a particular group of patients whose needs were commonly neglected; people who were experiencing the ongoing effects of cancer beyond first-line treatment but who were not at end of life. The Active and Advanced Disease (AAD) working group was created to consider issues of relevance to such people. 1.2 Aims of this review This project set out to meet the following aim: To review the literature on selected cancers in order to identify implications for the development of services to support patients experiencing difficulties associated with active and advanced disease

Illness identity as an important component of candidacy: Contrasting experiences of help-seeking and access to care in cancer and heart disease

How and when we use health services or healthcare provision has dominated exploration of and debates around healthcare access. Levels of utilisation are assumed as a proxy for access. Yet, focusing on utilisation conceals an important aspect of the access conundrum: the relationships that patients and potential patients have with the healthcare system and the professionals within those systems. Candidacy has been proposed as an antidote to traditional utilisation models. The Candidacy construct offers the ability to include patient-professional aspects alongside utilisation and thus promotes a deeper understanding of access. Originally applied to healthcare access for vulnerable populations, additional socio-demographic factors, including age and ethnicity, have also been shown to influence the Candidacy process. Here we propose a further extension of the Candidacy construct and illustrate the importance of illness identities when accessing healthcare. Drawing on a secondary data analysis of three data sets of qualitative interviews from colorectal cancer and heart failure patients we found that though similar access issues are apparent pre-diagnosis, diagnosis marks a critical juncture in the experience of access. Cancer patients describe a person-centred responsive healthcare system where their patienthood requires only modest assertion. Cancer speaks for itself. In marked contrast heart failure patients, describe struggling within a seemingly impermeable system to understand their illness, its implications and their own legitimacy as patients. Our work highlights the pressing need for healthcare professionals, systems and policies to promote a person centred approach, which is responsive and timely, regardless of illness category. To achieve this, attitudes regarding the importance or priority afforded to different categories of illness need to be tackled as they directly influence ideas of Candidacy and consequently access and experiences of care

Distress in couples coping with cancer: A meta-analysis and critical review of role and gender effects

Research concerning distress in couples coping with cancer was integrated using meta-analysis and narrative critical appraisal. Individual levels of distress were determined more by gender than by the role of being the person with cancer versus that person's partner. That is, women reported consistently more distress than men regardless of their role (standardized mean difference = 0.31). The association between patient and partner distress within couples was only moderate (r = .29) but is sufficient to warrant further consideration of the notion that these couples react as an emotional system rather than as individuals. It is noteworthy that this association is not moderated by gender. With a general lack of comparison groups, the question of how much distress can be ascribed to the cancer experience cannot be answered decisively; elevations in distress are probably modest. We critically discuss these results, identify important unanswered questions, and indicate directions for future research. Attention needs to be directed toward factors other than cancer as direct influences of distress in these couples and to mediators and moderators of the cancer experience. (PsycINFO Database Record (c) 2008 APA, all rights reserved)

Protocol for a longitudinal qualitative interview study: maintaining psychological well-being in advanced cancer - what can we learn from patients' and carers' own coping strategies?

IntroductionPeople with advanced cancer and their carers experience stress and uncertainty which affects the quality of life and physical and mental health. This study aims to understand how patients and carers recover or maintain psychological well-being by exploring the strategies employed to self-manage stress and uncertainty.Methods and analysisA longitudinal qualitative interview approach with 30 patients with advanced cancer and 30 associated family or informal carers allows the exploration of contexts, mechanisms and outcomes at an individual level. Two interviews, 4–12?weeks apart, will not only enable the exploration of individuals’ evolving coping strategies in response to changing contexts but also how patients’ and carers’ strategies inter-relate. Patient and Carer focus groups will then consider how the findings may be used in developing an intervention. Recruiting through two major tertiary cancer centres in the North West and using deliberately broad and inclusive criteria will enable the sample to capture demographic and experiential breadth.Ethics and disseminationThe research team will draw on their considerable experience to ensure that the study is sensitive to a patient and carer group, which may be considered vulnerable but still values being able to contribute its views. Public and patient involvement (PPI) is integral to the design and is evidenced by: a research advisory group incorporating patient and carers, prestudy consultations with the PPI group at one of the study sites and a user as the named applicant. The study team will use multiple methods to disseminate the findings to clinical, policy and academic audiences. A key element will be engaging health professionals in patient and carer ideas for promoting self-management of psychological well-being. The study has ethical approval from the North West Research Ethics Committee and the appropriate NHS governance clearance.RegistrationNational Institute for Health Research (NIHR) Clinical Studies Portfolio, UK Clinical Research Network (UKCRN) Study number 11725

Resilience in middle-aged partners of patients diagnosed with incurable cancer : a thematic analysis

Background : Providing care for patients with advanced cancer is often the responsibility of the partner. Being confronted with an incurable cancer diagnosis can be highly disruptive for the patient's partner and can be considered a potentially traumatic event. However, most caregivers seem to adapt well during the process of providing care. This finding is in line with the concept of resilience in literature: a dynamic process of adapting well, resulting from the interplay between intrinsic and extrinsic resources and risks. Resilience is age-related, with the elderly population being higher in resilience as compared to the younger generation. However, resilience has been understudied in middle-aged caregivers. Aim : To explore what intrinsic and extrinsic resources facilitate or hamper resilience in the middle-aged partner of a patient with incurable cancer. Methods : Nine middle-aged partners of patients who died at home of cancer were selected and interviewed in depth within the first year following the death of their partner. A thematic analysis utilizing an inductive approach was conducted. Findings : Resilience was challenged by the partner's diagnosis of incurable cancer. All participants made use of a set of interacting, caregiver-specific and context-related resources, facilitating a resilient process and leading to positive feelings and even personal growth. The partners demonstrated individual competences: adaptive flexibility, positivism, a sense of self-initiative and adaptive dependency. Furthermore, they relied on their context: cancer-related professionals and relatives. Context and situation interact continuously. The resulting dynamics were based on the context-availability, meaningful relationships and the patient's role. Conclusion : A resilient trajectory results from an interplay between individual and contextual resources. To build resilience in middle-aged partners of patients with incurable cancer, health care professionals should address all available resources. Moreover, they should be aware of being part of the caregiver's context, a complex adaptive system that can be either resilience-supporting or -threatening

Developing longitudinal qualitative designs: lessons learned and recommendations for health services research

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Content shared on social media for national cancer survivors day 2018.

BACKGROUND:Studies estimate that the number of cancer survivors will double by 2050 due to improvements in diagnostic accuracy and treatment efficacy. Despite the growing population of cancer survivors, there is a paucity of research regarding how these individuals experience the transition from active treatment to long-term surveillance. While research has explored this transition from more organized venues, such as support groups for cancer survivors, this paper explores the discourses surrounding cancer survivorship on social media, paying particular attention to how individuals who identify as cancer survivors represent their experience. METHODS:We identified social media posts relating to cancer survivorship on Twitter and Instagram in early June 2018, in order to coincide with National Cancer Survivorship Day on June 3, 2018. We used nine pre-selected hashtags to identify content. For each hashtag, we manually collected the 150 most recent posts from Twitter and the 100 most recent plus the top 9 posts from Instagram. Our preliminary sample included 1172 posts; after eliminating posts from one hashtag due to irrelevance, we were left with 1063 posts. We randomly sampled 200 of these to create a subset for analysis; after review for irrelevant posts, 193 posts remained for analysis (118 from Instagram and 75 from Twitter). We utilized a grounded theory approach to analyze the posts, first open-coding a subset to develop a codebook, then applying the codebook to the rest of the sample and finally memo writing to develop themes. RESULTS:Overall, there is substantial difference in the tone and thematic content between Instagram and Twitter posts, Instagram takes on a more narrative form that represents journeys through cancer treatment and subsequent survivorship, whereas Twitter is more factual, leaning towards advocacy, awareness and fundraising. In terms of content type, 120 posts (62%) of the sample were images, of which 42 (35%) were images of the individual posting and 28 (23%) were images of patients posted by family or friends. Of the remaining images, 14 (12%) were of support groups and 7 (6%) were of family or friends. We identified four salient themes through analysis of the social media posts from Twitter and Instagram: social support, celebrating milestones and honoring survivors, expressing identity, and renewal vs. rebirth. DISCUSSION:We observed a marked relationship between physical appearance, functional status and survivorship. Additionally, our findings suggest the importance of social support for cancer patients and survivors as well as the role social media can pay in identity formation. CONCLUSION:Our findings suggest that individuals who identify as survivors on social media define their identity fluidly, incorporating elements of physical, emotional and psychological health as well as autonomy

Optimizing Survivorship Care Services for Asian Adolescent and Young Adult Cancer Survivors: A Qualitative Study.

Purpose: With an increasing focus on developing survivorship services tailored for adolescent and young adult (AYA) cancer survivors, incorporation of viewpoints from both survivors and health care professionals (HCPs) is important. This study aims to explore the perceptions of current and prospective survivorship services from both groups in Singapore to propose service design and delivery strategies. Methods: Focus group discussions with 23 AYA cancer survivors between the ages of 16 and 39 years at diagnosis and 18 HCPs were conducted in National Cancer Centre Singapore (NCCS) and Singapore Cancer Society (SCS). All focus group discussions were transcribed verbatim. Deductive thematic analysis was performed according to the components of a design thinking model: empathizing with AYA survivors, defining care gaps, proposing services, and implementation strategies. Results: AYA survivors preferred age-specific services that are aligned with their personal goals. Current survivorship care failed to address the needs of survivors' dependents (caregivers and children) and to consider the utility of each service temporally. Prospective services should clarify disease disclosure obligation in job search and introduce a care navigator. Key implementation strategies included (1) training HCPs on communication techniques with AYA, (2) selecting engagement platforms that complement survivors' information-seeking behavior, (3) improving outreach to survivors through appropriate branding and publicity, and (4) consolidating services from multiple providers. Conclusions: The design of survivorship care services for AYA survivors should be systematic in its conceptualization process and employ implementation strategies. The coordination of the wide spectrum of services warrants a concerted effort by cancer centers, community partners, and the government

Unsolicited written narratives as a methodological genre in terminal illness: challenges and limitations

Stories about illness have proven invaluable in helping health professionals understand illness experiences. Such narratives have traditionally been solicited by researchers through interviews and the collection of personal writings, including diaries. These approaches are, however, researcher driven; the impetus for the creation of the story comes from the researcher and not the narrator. In recent years there has been exponential growth in illness narratives created by individuals, of their own volition, and made available for others to read in print or as Internet accounts. We sought to determine whether it was possible to identify such material for use as research data to explore the subject of living with the terminal illness amyotrophic lateral sclerosis/motor neuron disease—the contention being that these accounts are narrator driven and therefore focus on issues of greatest importance to the affected person. We encountered and sought to overcome a number of methodological and ethical challenges, which is our focus here

Integrated out-of-hours care arrangements in England: observational study of progress towards single call access via NHS Direct and impact on the wider health system

Objectives: To assess the extent of service integration achieved within general practice cooperatives and NHS Direct sites participating in the Department of Health’s national “Exemplar Programme” for single call access to out-of-hours care via NHS Direct. To assess the impact of integrated out-of-hours care arrangements upon general practice cooperatives and the wider health system (use of emergency departments, 999 ambulance services, and minor injuries units). Design: Observational before and after study of demand, activity, and trends in the use of other health services. Setting: Thirty four English general practice cooperatives with NHS Direct partners (“exemplars”) of which four acted as “case exemplars”. Also 10 control cooperatives for comparison. Main Outcome Measures: Extent of integration achieved (defined as the proportion of hours and the proportion of general practice patients covered by integrated arrangements), patterns of general practice cooperative demand and activity and trends in use of the wider health system in the first year. Results: Of 31 distinct exemplars 21 (68%) integrated all out-of-hours call management by March 2004. Nine (29%) established single call access for all patients. In the only case exemplar where direct comparison was possible, cooperative nurse telephone triage before integration completed a higher proportion of calls with telephone advice than did NHS Direct afterwards (39% v 30%; p<0.0001). The proportion of calls completed by NHS Direct telephone advice at other sites was lower. There is evidence for transfer of demand from case exemplars to 999 ambulance services. A downturn in overall demand for care seen in two case exemplars was also seen in control sites. Conclusion: The new model of out-of-hours care was implemented in a variety of settings across England by new partnerships between general practice cooperatives and NHS Direct. Single call access was not widely implemented and most patients needed to make at least two telephone calls to contact the service. In the first year, integration may have produced some reduction in total demand, but this may have been accompanied by shifts from one part of the local health system to another. NHS Direct demonstrated capability in handling calls but may not currently have sufficient capacity to support national implementation