Living with Parkinson's in England during and beyond COVID-19 restrictions: a longitudinal qualitative study.

OBJECTIVES: Government-enforced lockdown restrictions associated with preventing the spread of the COVID-19 virus had a series of unintended, negative effects. One group of individuals whose physical and mental health was significantly and disproportionately impacted were those with Parkinson's. However, research has been mainly cross-sectional, with no previous study qualitatively following up participants through both lockdowns and the easing of restrictions. Consequently, this study aimed to provide a detailed understanding of the experience of lockdowns and the easing of restrictions on the physical and mental health of people with Parkinson's. METHOD: Data from semi-structured interviews collected at four time points across an 18-month period (May 2020 - September 2021) from the same participants (six men and four women) were analysed using interpretative phenomenological analysis. RESULTS: Three themes were derived: (1) Wrestling with a Parkinson's identity, agency and control during the pandemic; (2) The encroachment and acceleration of a Parkinson's future; and (3) Recalibrating priorities from COVID-19 to Parkinson's. CONCLUSION: As currently the only published study to provide an in-depth longitudinal analysis with this population, we used a more dynamic theoretical account, Strauss and Corbin's theory of illness trajectories, to understand the findings and suggest ways of supporting individuals with Parkinson's in this stage of the pandemic. The scale and breadth of the support needed is a significant challenge for current statutory systems.

EXPERTS II - How are patient and caregiver participation in health and social care shaped by experienced burden of treatment and social inequalities? Protocol for a qualitative synthesis.

Background: The workload health and social care service users and caregivers take on, and their capacity to do this work is important. It may play a key part in shaping the implementation of innovations in health service delivery and organisation; the utilisation and satisfaction with services; and the outcomes of care. Previous research has often focused on experiences of a narrow range of long-term conditions, and on factors that shape adherence to self-care regimes. Aims: With the aim of deriving policy and practice implications for service redesign, this evidence synthesis will extend our understanding of service user and caregiver workload and capacity by comparing how they are revealed in qualitative studies of lived experience of three kinds of illness trajectories: long-term conditions associated with significant disability (Parkinson's disease, schizophrenia); serious relapsing remitting disease (Inflammatory Bowel Disease, bipolar disorder); and rapidly progressing acute disease (brain cancer, early onset dementia). Methods: We will review and synthesise qualitative studies of lived experience of participation in health and social care that are shaped by interactions between experienced treatment burdens, social inequalities and illness trajectories. The review will involve:   1.  Construction of a theory-informed coding manual; systematic search of bibliographic databases to identify, screen and quality assess full-text papers.   2.  Analysis of papers using manual coding techniques, and text mining software; construction of taxonomies of service user and caregiver work and capacity.   3.  Designing a model of core components and identifying common factors across conditions, trajectories, and contexts.   4.  Work with practitioners, and a Patient and Public Involvement (PPI) group, to explore the validity of the models produced; to develop workload reduction strategies; and to consider person-centred service design. Dissemination: We will promote workload reduction models to support service users and caregivers and produce policy briefs and peer-reviewed publications for practitioners, policy-makers, and researchers.

Our experiences of illness are often complex. We may have to work hard too. We may need to monitor and record symptoms: take up different diets and physical activity; use different drugs and medical devices; develop expertise in using websites and information technology; coordinate input from health and care services; sometimes we have to work out how to pay for the services we need. How we get through this work is affected by our capacity to do it, and that is shaped by personal and wider resources, we can draw on. All of this is also affected by the services that are available to us, and by the ways our chances in life are shaped by income, ethnicity, education, gender, and age. The kinds of illnesses we have and how they progress, mean that these factors change over time. We call these changes trajectories. To better understand service user work and capacity, we will review published studies that tell us about people's everyday experiences of living with illnesses. We focus on three rarely studied trajectories. These are long-term conditions associated with significant disability; serious relapsing remitting disease; and rapidly progressing acute disease. We will first use existing research to build a framework in which we can describe and understand relevant aspects of the published studies. We will use this framework to extract relevant information from the studies. This will enable us to make a model of common features of service user work and capacity across different conditions, their trajectories, service organisation and delivery, and patterns of social and economic disadvantage. Finally, we will work with groups of service users and caregivers, and with health and social care professionals to apply the model to the development of strategies to reduce workload and improve service design for people with complex health problems.

Navigating uncertain illness trajectories for young children with serious infectious illness: a modified grounded theory study.

BACKGROUND: Infectious illness is the biggest cause of death in children due to a physical illness, particularly in children under five years. If mortality is to be reduced for this group of children, it is important to understand factors affecting their pathways to hospital. The aim of this study was to retrospectively identify organisational and environmental factors, and individual child, family, and professional factors affecting timing of admission to hospital for children under five years of age with a serious infectious illness (SII). METHODS: An explanatory modified grounded theory design was used in collaboration with parents. Two stages of data collection were conducted: Stage 1, interviews with 22 parents whose child had recently been hospitalised with a SII and 14 health professionals (HPs) involved in their pre-admission trajectories; Stage 2, focus groups with 18 parents and 16 HPs with past experience of SII in young children. Constant comparative analysis generated the explanatory theory. RESULTS: The core category was 'navigating uncertain illness trajectories for young children with serious infectious illness'. Uncertainty was prevalent throughout the parents' and HPs' stories about their experiences of navigating social rules and overburdened health services for these children. The complexity of and lack of continuity within services, family lives, social expectations and hierarchies provided the context and conditions for children's, often complex, illness trajectories. Parents reported powerlessness and perceived criticism leading to delayed help-seeking. Importantly, parents and professionals missed symptoms of serious illness. Risk averse services were found to refer more children to emergency departments. CONCLUSIONS: Parents and professionals have difficulties recognising signs of SII in young children and can feel socially constrained from seeking help. The increased burden on services has made it more difficult for professionals to spot the seriously ill child.

A pilot study of new approaches to exploring illness trajectories and patterns of comorbidity in major mental disorders.

AIMS: We explored lifetime comorbidities in clinical subsamples with a diagnosis of Psychosis (N = 143), bipolar (BD = 511), and unipolar disorders (UP = 861). METHODS: We analyzed trajectories and patterns of comorbidities using novel metrics, namely bubble plots and density of antecedent events per year of illness exposure per individual. RESULTS: Age at onset (AAO) of most comorbidities was similar to epidemiological studies, but cumulative rates were higher in clinical cases. There were some between group differences in patterns or burden of comorbidities, for example, Psychosis showed the earliest AAO of any mental disorder; UP showed the latest AAO of the index diagnosis. The relative risk of multimorbidity was lower in UP compared with other diagnoses, however, the goodness of fit for the illness trajectory path was lowest for BD. CONCLUSIONS: Bubble plots offer a useful representation of timing, sequence, cumulative probability and of comorbidities, the added value of reporting density measures was less obvious.

Understanding quality of life across different clinical subtypes of multiple sclerosis: a thematic analysis.

PURPOSE: Multiple sclerosis (MS) is a neurological disease that has different clinical presentations and illness trajectories. The aim of this study was to explore factors that are important for quality of life (QoL) of people with MS (pwMS), and to understand how they may differ across three subtypes. METHODS: Both convenience and purposive sampling were employed. Semi-structured interviews were conducted with people with relapsing-remitting MS (n = 16), secondary progressive MS (n = 14), and primary progressive MS (n = 13). All interviews were audio recorded and then transcribed verbatim for thematic analysis involving both inductive and deductive processes. A separate analysis for each subtype was made during the inductive process before examining for similarities and differences across the three subtypes in the deductive process. FINDINGS: Four factors were identified to have an important influence on QoL of pwMS: restricted and disrupted enjoyment, disturbed future, challenged sense of self, and well-being of significant others. The themes reflect how pwMS commonly perceived enjoyment as a purpose of life, while also illustrating how their QoL may be questioned because of new perspectives going forward with MS, challenges to their sense of self, and increased concerns for their significant others as a result of MS. Subtype differences were attributed to different illness trajectories: relapsing or progressive. CONCLUSIONS: There are subtype differences in the negative impact of MS on QoL. Clinicians are encouraged to understand the challenges of different illness trajectories, in particular the traumatic nature of relapses and steady worsening of symptoms among those with progressive subtypes of MS.

Integrating Palliative Care Assessment Tools to Enhance Understanding of Illness Trajectory in Post-Acute Care and Long-Term Care.

OBJECTIVES: To determine whether education and integration of the Gold Standard Framework Proactive Identification Guidance (GSF-PIG) and the Palliative Performance Scale (PPS) into care rounds, in post-acute care settings, can facilitate communication between the interprofessional care team to enhance understanding of illness trajectories, identifying those who would benefit from a palliative approach to care. METHODS: Interprofessional care teams received training on the GSF-PIG and PPS which were integrated into weekly care rounds and completed a post-evaluation survey. A chart review was conducted for the 40 patients and residents reviewed with the GSF-PIG and PPS. Data analysis included descriptive statistics and comparisons of characteristics between patients and residents who were grouped as positive or negative on the GFS-PIG surprise question using chi square analyzes and t-tests. RESULTS: The GSF-PIG and PPS were found to enhance communication within care teams and enhance understanding of patient and resident's illness burden. The chart review revealed that patients and residents whom the team would not be surprised if they died within 1 year were older (p = .002), had a lower PPS score (p = .002) and had more indicators of decline (p < .001) compared to patients and residents the team would be surprised if they died within the year. CONCLUSION: Training interprofessional care teams on the utilization and integration of the GSF-PIG and PPS during weekly care rounds helped increase the understanding of patient and resident illness burden and illness trajectory to identify those who may benefit from a palliative approach to care.

Addressing end-of-life care in the chronically ill: Conversations in the emergency department.

Patients present to the emergency department in various stages of chronic illness. Advance directives (ADs) aid emergency physicians in making treatment decisions, but only a minority of Americans have completed an AD, and the percentage of those who have discussed their end-of-life wishes may be even lower. This article addresses the use of common ADs and roadblocks to their use from the perspectives of families, patients, and physicians. Cases to examine new approaches to optimizing end-of-life conversations in patients who are chronically ill, such as the Improving Palliative Care in Emergency Medicine Project, a decision-making framework that opens discussion for patients to gain understanding and determine preferences, and the Brief Negotiated Interview, a 7-minute, scripted, motivational interview that determines willingness for behavior change and initiates care planning, are used.

Care home residents who die in hospital: exploring factors, processes and experiences.

BACKGROUND: Care home residents are increasingly frail with complex health and social care needs. Their transfer to hospital at the end-of-life can be associated with unwanted interventions and distress. However, hospitals do enable provision of care that some residents wish to receive. We aimed to explore the factors that influence hospital admission of care home residents who then died in hospital. METHODS: This study combined in-depth case note review of care home residents dying in two Scottish teaching hospitals during a 6-month period and semi-structured interviews with a purposive sample of 26 care home staff and two relatives. RESULTS: During the 6-month period, 109 care home residents died in hospital. Most admissions occurred out-of-hours (69%) and most were due to a sudden event or acute change in clinical condition (72%). Length of stay in hospital before death was short, with 42% of deaths occurring within 3 days. Anticipatory Care Planning (ACP) regarding hospital admission was documented in 44%.Care home staff wanted to care for residents who were dying; however, uncertain trajectories of decline, acute events, challenges of ACP, relationship with family and lack of external support impeded this. CONCLUSIONS: Managing acute changes on the background of uncertain trajectories is challenging in care homes. Enhanced support is required to improve and embed ACP in care homes and to provide rapid, 24 hours-a-day support to manage difficult symptoms and acute changes.

Rethinking End-of-Life Care and Palliative Care: Learning From the Illness Trajectories and Lived Experiences of Terminally Ill Patients and Their Family Carers.

Lynn conceptualized end-of-life (EoL) care for patients with advanced chronic-progressive illnesses as a combination of life-preserving/palliative care, the palliative aspect gradually becoming the main focus as death approaches. We checked this concept by exploring the advanced-terminal illness trajectories of 50 patients. Strategies heralding active therapy exhaustion were the catalyst for a participant's awareness of terminality, but were not a decisive factor in the divergent EoL care pathways we detected. The terms life-preserving and palliative do not adequately capture EoL care pathways due to their conceptual ambiguity. Conversely, the concept of EoL care encompassing three palliative care modalities ( life-prolonging palliative therapy, restorative palliative care, and symptom-oriented [only] palliative care), each harboring a different blend of life-preserving and symptom-comforting aspects, proved adequate. These modalities could run serially, oscillatorily, or parallelly, explaining the divergent EoL care pathways. We suggest an adjustment of the model of Lynn and reconsider the traditional palliative care concept.

#Deathbedlive: the end-of-life trajectory, reflected in a cancer patient's tweets.

BACKGROUND: Understanding physical and psycho-social illness trajectories towards the end of life can help in the planning of palliative and supportive care. With terminal patients increasingly seeking and sharing health information and support via social media, it is timely to examine whether these trajectories are reflected in their digital narratives. In this exploratory study, we analysed the Twitter feed of prominent cancer sufferer and physician, Kate Granger, over the final 6 months of her life. METHODS: With the consent of Kate's widower, Chris Pointon, 1628 Twitter posts from @GrangerKate were manually screened. The 550 tweets judged relevant to her disease were qualitatively content analysed with reference to the six modifiable dimensions of the patient experience in Emanuel and Emanuel's 'framework for a good death'. The frequency of each tweet category was charted over time and textual content was examined and cross-referenced with key events, to obtain a deeper understanding of its nature and significance. RESULTS: Tweets were associated with physical symptoms (N = 270), psychological and cognitive symptoms (N = 213), social relationships and support (N = 85), economic demands and care giving needs (N = 85), hopes and expectations (N = 51) and spiritual beliefs (N = 7). While medical treatments and procedures were discussed in detail, medical information-seeking was largely absent, likely reflecting Kate clinical expertise. Spirituality was expressed more as hope in treatments or "someone out there listening", than in religious terms. The high value of Kate's palliative care team was a dominant theme in the support category, alongside the support she received from her online community of fellow sufferers, friends, family and colleagues. Significant events, such as medical procedures and hospital stays generated the densest Twitter engagement. Transitions between trajectory phases were marked by changes in the relative frequency of tweet-types. CONCLUSIONS: In Kate's words, "the power of patient narrative cannot be underestimated". While this analysis spanned only 6 months, it yielded rich insights. The results reflect theorised end-of-life dimensions and reveal the potential of social media data and digital bio-ethnography to shine a light on terminal patients' lived experiences, coping strategies and support needs, suggesting new opportunities for enhancing personalised palliative care and avenues for further research.

"What matters to you?" A longitudinal qualitative study of Norwegian patients' perspectives on their pathways with colorectal cancer.

PURPOSE: Person-centred care (PCC) is a well-acknowledged goal throughout the western world both within the health care services sector and for the patients themselves. To be able to create a future health care system that includes improved PCC, we need more in-depth knowledge of what matters to patients, how "what matters" might change over time, and tentative descriptions of commonalities across patients' perspectives. The aim of this study is to contribute to this knowledge base. METHODS: We conducted a qualitative interview series over one year with nine Norwegian patients who were recently diagnosed with rectal cancer tumor-node-metastasis stage I-III. RESULTS: We found that: (1) patients have an initial focus on "biological goals" and conventional treatment; (2) pathways are unique and dynamic; (3) family and friends affected patient pathways positively with respect to meaningfulness and quality of life, but for some participants also negatively because there were heavy burdens of caretaking; (4) receiving help in the health care system depended on the patients' navigation skills; (5) pluralism in health-seeking behaviour was important in all patient pathways. CONCLUSION: Long lasting illness may be a dynamic and complex journey. These results represent some features of a pathway with cancer and are important because they contribute with knowledge about what matters most seen from the cancer patients' point of view.

Gradual physical decline characterises the illness trajectories of care home residents.

BACKGROUND: Three archetypal trajectories of physical decline have been identified: a short period of rapid decline; long-term limitations with intermittent acute periods; and a prolonged gradual decline. An understanding of illness trajectories can help clarify the evolving needs of people with progressive conditions, and inform the development of palliative care services to meet their needs. Many frail older people live and die in care homes; the present study is the first to explore the illness trajectories of residents in care home settings. AIMS: To determine the prevailing trajectories of physical decline in care home residents; and to identify the dominant illness trajectories of residents in care homes in Lothian, Scotland. METHOD: Data were collected as part of a service development project to improve palliative care in eight care homes in south Edinburgh that provided 24-hour onsite nursing care. RESULTS: Data on 120 residents were collected. The dominant illness trajectory, found in 78% of residents, was prolonged gradual decline. The majority of residents (67%) had two or more long-term conditions. Overall, 74% had dementia. Only 11% of residents died in hospital; of these, most died within 1 week of admission. CONCLUSION: Interventions to improve palliative care in care homes need to be modelled on the needs of residents who experience prolonged gradual decline characterised by frailty, dementia, multimorbidity and an uncertain prognosis.

Illness trajectories in patients with amyotrophic lateral sclerosis: How illness progression is related to life narratives and interpersonal relationships.

AIMS AND OBJECTIVES: To identify illness trajectories in amyotrophic lateral sclerosis by analysing personal, social and functional dimensions related to amyotrophic lateral sclerosis progression. BACKGROUND: Previous studies have considered some psychological distinct variables that may moderate illness progression, but no research has combined an extensive qualitative understanding of amyotrophic lateral sclerosis patients' psychological characteristics and illness progression. DESIGN: A mixed-methods approach was used to combine quantitative and qualitative measures. Illness progression was assessed through a longitudinal design. METHODS: Eighteen patients with amyotrophic lateral sclerosis attending a Neurology Department in northern Italy participated in the study. Semi-structured interviews to explore personal experience, and dependency grids to assess the distribution of dependency; ALSFRS-R and neuropsychological screening were, respectively, used to measure physical and cognitive impairment. To assess the progression of the disease, ALSFRS-R was re-administered after 8 months and mortality rate was considered. Data were analysed using the grounded theory approach. RESULTS: Illness progression changed according to the perception of the disease, the trust placed in medical care, self-construction and the distribution of dependency. Based on these categories, cases that had similar experiences were grouped, and four illness trajectories were identified: aggressiveness, threat, constriction and guilt. CONCLUSION: The findings suggest that it is possible to identify different illness trajectories in amyotrophic lateral sclerosis. RELEVANCE TO CLINICAL PRACTICE: Personalised intervention strategies may be construed based on the different trajectories identified.

Decision Trajectories in Dementia Care Networks: Decisions and Related Key Events.

This prospective multiperspective study provides insight into the decision trajectories of people with dementia by studying the decisions made and related key events. This study includes three waves of interviews, conducted between July 2010 and July 2012, with 113 purposefully selected respondents (people with beginning to advanced stages of dementia and their informal and professional caregivers) completed in 12 months (285 interviews). Our multilayered qualitative analysis consists of content analysis, timeline methods, and constant comparison. Four decision themes emerged-managing daily life, arranging support, community living, and preparing for the future. Eight key events delineate the decision trajectories of people with dementia. Decisions and key events differ between people with dementia living alone and living with a caregiver. Our study clarifies that decisions relate not only to the disease but to living with the dementia. Individual differences in decision content and sequence may effect shared decision-making and advance care planning.

Illness trajectories in patients suffering from leg ulcers: A qualitative study.

The aim of this study was to identify illness trajectories in leg ulcers by analysing personal, social and relational dimensions related to leg ulcer onset and to the care process. Semi-structured interviews were conducted with 21 patients, one physician and four nurses. Patients' medical records were also examined. Data were analysed using the grounded theory approach. Four illness trajectories were identified: possibility, denial, focus on illness and tragedy. The findings highlighted that leg ulcers can be experienced in different ways depending on the personal characteristics of the people suffering from them and the kind of relationship that exists between patients and healthcare professionals.

Exploring the barriers to health care and psychosocial challenges in cervical cancer management in Kenya.

Cervical cancer is the most frequent cancer among women aged between 15 years and 44 years in Kenya, resulting in an estimated 4,802 women being diagnosed with cervical cancer and 2,451 dying from the disease annually. It is often detected at its advanced invasive stages, resulting in a protracted illness upon diagnosis. This qualitative study looked at the illness trajectories of women living with cervical cancer enrolled for follow-up care at Kenyatta National Hospital cancer treatment center and the Nairobi Hospice, both in Nairobi county, Kenya. Using the qualitative phenomenological approach, data were collected through 18 in-depth interviews with women living with cervical cancer between April and July 2011. In-depth interviews with their caregivers, key informant interviews with health care workers, and participant observation field notes were used to provide additional qualitative data. These data were analyzed based on grounded theory's inductive approach. Two key themes on which the data analysis was then anchored were identified, namely, psychosocial challenges of cervical cancer and structural barriers to quality health care. Findings indicated a prolonged illness trajectory with psychosocial challenges, fueled by structural barriers that women were faced with after a cervical cancer diagnosis. To address issues relevant to the increasing numbers of women with cervical cancer, research studies need to include larger samples of these women. Also important are studies that allow in-depth understanding of the experiences of women living with cervical cancer.

Timing of POLST Form Completion by Cause of Death.

CONTEXT: The physician orders for life-sustaining treatment (POLST) paradigm allows health care professionals to document the treatment preferences of patients with advanced illness or frailty as portable and actionable medical orders. National standards encourage offering POLST orders to patients for whom clinicians would not be surprised if they died in the next year. OBJECTIVES: To determine the influence of cause of death on the timing of POLST form completion and on changes to POLST orders as death approaches. METHODS: This was a cohort study of 18,285 Oregon POLST Registry decedents who died in 2010-2011 matched to Oregon death certificates. RESULTS: The median interval between POLST completion and death was 6.4 weeks. Those dying of cancer had forms completed nearer death (median 5.1 weeks) than those with organ failure (10.6 weeks) or dementia (14.5 weeks; P < 0.001). More than 90% of final POLST forms indicated orders for no resuscitation and 65.1% listed orders for comfort measures only. Eleven percent of the sample had multiple registered forms during the two years preceding their death, with the form completed nearest to death more likely than earlier forms to have orders for no resuscitation and comfort measures only, although some later forms did have orders for more treatment. CONCLUSION: More than half of POLST forms were completed in the final two months of life. Cause of death influenced when POLST forms were completed. POLST forms changed in the two years preceding death, more frequently recording fewer life-sustaining treatment orders than the earlier form(s).

Different Experiences and Goals in Different Advanced Diseases: Comparing Serial Interviews With Patients With Cancer, Organ Failure, or Frailty and Their Family and Professional Carers.

CONTEXT: Quality care for people living with life-limiting illnesses is a global priority. A detailed understanding of the varied experiences of people living and dying with different conditions and their family and professional caregivers should help policymakers and clinicians design and deliver more appropriate and person-centered care. OBJECTIVES: To understand how patients with different advanced conditions and their family and professional caregivers perceive their deteriorating health and the services they need. METHODS: We used a narrative framework to synthesize eight methodologically comparable, longitudinal, and multiperspective interview studies. We compared the end-of-life experiences of people dying from cancer (lung, glioma, and colorectal cancer), organ failure (heart failure, chronic obstructive pulmonary disease, and liver failure), and physical frailty and those of their family and professional caregivers in socioeconomically and ethnically diverse populations in Scotland. RESULTS: The data set comprised 828 in-depth interviews with 156 patients, 114 family caregivers, and 170 health professionals. Narratives about cancer typically had a clear beginning, middle, and an anticipated end. Cancer patients gave a well-rehearsed account of their illness, hoping for recovery alongside fear of dying. In contrast, people with organ failure and their family caregivers struggled to pinpoint when their illness began, or to speak openly about death, hoping instead to avoid further deterioration. Frail older people tended to be frustrated by their progressive loss of independence, fearing dementia or nursing home admission more than dying. CONCLUSION: These contrasting illness narratives affect and shape the experiences, thoughts, and fears of patients and their carers in the last months of life. Palliative care offered by generalists or specialists should be provided more flexibly and equitably, responding to the varied concerns and needs of people with different advanced conditions.