Realising the potential : developing qualitative longitudinal methods for understanding the experience of metastatic colorectal cancer

Background Qualitative longitudinal research (QLR) has a long history in the social sciences, where its theoretical basis is well established. Qualitative longitudinal (QL) methods are gaining popularity in health care research for exploring the dynamic experience of illness. However, methodological development of QLR is limited within the health literature, and there are very few studies examining the experience of people with colorectal cancer (CRC). Moreover, such studies describe the experiences of those surviving CRC and the voices of those with advanced disease who are approaching the end of their lives remain largely unheard. Aim and objective This study explores the potential of QL interviewing to examine the experiences of those with advanced, metastatic, CRC. I investigate how QL interviews can be best utilised to explore the participants’ accounts of their experiences. I specifically examine the added value and costs of a flexible approach with regard to the frequency and timing of longitudinal interviews. Analytical approaches to QL data are examined to determine their overall value. Methods Sixteen patients with metastatic CRC and eight of their family carers participated in narrative interviews at three time points over the course of a year. The study was designed to include two groups of participants. The first, a routine interval group where interviews were carried out at regular intervals of six months; the second, a flexible interval group where there was an interview at baseline followed by monthly phone calls to track changes in the participants’ circumstances, with a view to conducting the interview as change was occurring. The data were analysed at each time point, and longitudinally using narrative and thematic techniques. Findings The QL design enabled a trusting relationship to evolve, such that private accounts of experience were disclosed. Thus, a nuanced and contextualised understanding of the experience of metastatic CRC materialised. Overall the accounts of CRC were characterised by uncertainty, yet at the same time death was a certainty. Over time, this dual narrative led to participants feeling themselves to be in an ambiguous and liminal state. Some participants described a loss of sense of self, yet others maintained their identity. The work that participants carried out to manage their sense of self changed, as they moved from a collective to an individual identity. In the flexible interval group, monthly telephone calls produced an even more profound research relationship and further enriched the accounts. However, early interviews were only conducted on two occasions and more ethical issues arose as a result of the increased contact. Conclusions By exploring the potential of QL methods, this study has developed the methodology for researching the experiences of those with serious illness. QL interviewing elicits a deep understanding of metastatic CRC that appreciates notions of temporality, process and change. Regular contact with participants between interviews can further enrich the accounts, and is a useful strategy for tracking changes given the unpredictable nature of advanced disease. This thesis showcases the cross-sectional and longitudinal opportunities that QL analysis presents; yet also highlights how longitudinal narrative analysis allows a story to unfold over time which reflects the beginning, the middle and for some the end of the illness experience. Although QL analysis is time consuming, and more contact can amplify ethical issues, the benefits outweigh the constraints

The end of life experiences of people living with socio-economic deprivation in the developed world:an integrative review

The roles of Emma Carduff and Maire O'Riordan are funded by Marie Curie. Emma Carduff is Co-Applicant on an Economic and Social Research Council grant (ES/S014373/1) entitled Dying in the Margins: uncovering the reasons for unequal access to home dying for the socio-economically deprived.Background: Those experiencing socioeconomic deprivation have poorer quality of health throughout their life course which can result in poorer quality of death - with decreased access to palliative care services, greater use of acute care, and reduced access to preferred place of care compared with patients from less deprived populations. Aim: To summarise the current global evidence from developed countries on end-of-life experience for those living with socio-economic deprivation. Design: Integrative review in accordance with PRISMA. A thorough search of major databases from 2010-2020, using clear definitions of end-of-life care and well-established proxy indicators of socio-economic deprivation. Empirical research describing experience of adult patients in the last year of life care were included. Results: Forty studies were included from a total of 3508 after screening and selection. These were deemed to be of high quality; from a wide range of countries with varying healthcare systems; and encompassed all palliative care settings for patients with malignant and non-malignant diagnoses. Three global themes were identified: 1) multi-dimensional symptom burden, 2) preferences and planning and 3) health and social care interactions at the end of life. Conclusions: Current models of healthcare services are not meeting the needs of those experiencing socioeconomic deprivation at the end-of-life. Further work is needed to understand the disparity in care, particularly around ensuring patients voices are heard and can influence service development and delivery.Publisher PDFPeer reviewe

The impact of poverty and deprivation at the end of life: a critical review

This critical review interrogates what we know about how poverty and deprivation impact people at the end of life and what more we need to uncover. While we know that people in economically resource-rich countries who experience poverty and deprivation over the life course are likely to die younger, with increased co-morbidities, palliative care researchers are beginning to establish a full picture of the disproportionate impact of poverty on how, when and where we die. This is something the Covid-19 pandemic has further illustrated. Our article uses a critical social science lens to investigate an eclectic range of literature addressing health inequities and is focused on poverty and deprivation at the end of life. Our aim was to see if we could shed new light on the myriad ways in which experiences of poverty shape the end of people’s lives. We start by exploring the definitions and language of poverty while acknowledging the multiple intersecting identities that produce privilege. We then discuss poverty and deprivation as a context for the nature of palliative care need and overall end-of-life circumstances. In particular, we explore: total pain; choice at the end of life; access to palliative care; and family caregiving. Overall, we argue that in addressing the effects of poverty and deprivation on end-of-life experiences, there is a need to recognise not just socio-economic injustice but also cultural and symbolic injustice. Too often, a deficit-based approach is adopted which both ‘Others’ those living with poverty and renders invisible the strategies and resilience they develop to support themselves, their families and communities. We conclude with some recommendations for future research, highlighting in particular the need to amplify the voices of people with lived experience of poverty regarding palliative and end-of-life care

Factors influencing adult carer support planning for unpaid caregiving at the end of life in Scotland:Qualitative insights from triangulated interviews and focus groups

Caring for a relative or friend at the end of life can be rewarding but all‐encompassing. These caregivers are often not identified, meaning their diverse needs remain unmet, and the lack of assessment, support and planning increases the likelihood of crisis and burnout. The Carers (Scotland) Act 2016 places responsibility on local authorities to implement such a plan, which will be fast‐tracked for carers supporting someone at the end of life. Our research described the factors which might influence this planning, triangulating primary focus groups with 15 carers and secondary qualitative data from transcripts with 30 carers, all of whom who had looked after someone with a terminal illness. Analysis was iterative, and constant comparative analysis of the secondary data informed the primary focus groups. Three main themes were identified; 1. The importance of early identification as a carer to enable timely assessment and support. 2. Carers experience isolation and loneliness which limits opportunities for support. 3. Responding in a timely fashion to carer assessment and support is vital to avoid crises. This research confirms that identifying carers early in the illness trajectory, ideally at diagnosis, is vital to avoid carer burnout. Health and social care providers have a key role in identification and should ensure, where possible, that carer needs are dynamically assessed, supported and documented. Finally, caring does not end after death, it extends into bereavement. Thus, we need to consider system and cultural change to ensure the experiences and needs of carers are addressed and valued

Dying in the margins: Experiences of dying at home for people living with financial hardship and deprivation

Home dying is a policy indicator of ‘quality dying’ in many high-income countries, but there is evidence that people living in areas of higher deprivation have a reduced likelihood of dying at home. However, there is limited research which centres the views and experiences of people living with both socioeconomic deprivation and serious advanced illness. We deployed visual methods to address this gap in knowledge, focusing on barriers to, and experiences of, home dying for people experiencing poverty and deprivation in the UK. We used photovoice and professional documentary photography between April 2021 and March 2023 with eight participants with serious advanced illness, six of whom had died by the end of the study. We also worked with four bereaved family members to create digital stories. This produced a large volume of multi-modal data which we analysed using a thematic, iterative, interpretive approach. Key findings included the high costs of dying at home, the nature and impact of which were conveyed by images such as a heating thermostat set to low. Images also expressed how for some participants, the environment inside and outside the home was experienced as oppressive and alienating because of cramped, materially poor social housing, as well as urban noise, crime, mould and damp, and a lack of access to outside space. Nevertheless, the home environment was important to all participants, particularly as a site to support the continuation of their identity and autonomy, and some were explicit about wanting to remain at home for as long as possible. This study provides unique insights regarding the significant policy shift needed to improve the extent and experience of home dying for the growing number of people dying in the context of financial hardship and deprivation both in the UK, and elsewhere

Dying in the Margins Exhibition Postcards Full Set

The Cost of Dying Exhibition: This research, funded by the Economic and Social Research Council, examined barriers to, and experiences of, dying at home for people experiencing financial hardship and deprivation in the UK. The project has generated impactful imagery designed to inform the public conversation around end of life care improvement specifically for people experiencing financial hardship and structural marginalisation

Dying in the Margins: The Cost of Dying Exhibition Guide

This exhibition contemplates research findings on experiences of dying at home for people facing financial hardship and deprivation in Scotland. The imagery and testimonies encountered here lay bare end-of-life experiences which are not always considered. Firstly, not everyone pictured in this room looks as if they are dying. Despite serious illness, pain, and discomfort, many people included in the study continued to go about their daily lives. This included continuing to care for their children, grandchildren, and partners. That the dying are still carers, or still live alongside us in our communities, passing us in the stairwell, the library, or on the bus, is not always recognised. The twelve stories represented depict people who were weighed down by the heavy financial costs of dying. Some of these individuals also lacked a material environment or a care package conducive to a dignified end of life experience. For those who had struggled on a low income their entire lives, terminal illness only plunged them further into hardship. For others just about getting by, terminal illness brought new and unanticipated hardship. While the state offers a partial safety net in such cases, there are questions over whether this is sufficient to meet the needs for a comfortable end of life. The exhibition comprises three different approaches to aid a deeper understanding of the issues. The photovoice images, made by participants themselves, frame their experiences from the inside demonstrating their resilience as well as their isolation. The digital stories give the perspectives of bereaved loved ones. Margaret Mitchell’s images speak to each individual’s strengths as well as their vulnerabilities. As you view this exhibition, we ask you to think about what the NHS, housing associations, social work, and the third sector, as well as communities in general, should and could offer people who perhaps haven’t had the best chances in life. What could be designed or distributed differently to ease people’s distress in the final months of their lives