Background: Palliative care patients are often described as complex but evidence on complexity is limited. We need to understand complexity, including at individual patient-level, to define specialist palliative care, characterise palliative care populations and meaningfully compare interventions/outcomes. Aim: To explore palliative care stakeholders' views on what makes a patient more or less complex and insights on capturing complexity at patient-level. Design: In-depth qualitative interviews, analysed using Framework analysis. Participants/setting: Semi-structured interviews across six UK centres with patients, family, professionals, managers and senior leads, purposively sampled by experience, background, location and setting (hospital, hospice and community). Results: 65 participants provided an understanding of complexity, which extended far beyond the commonly used physical, psychological, social and spiritual domains. Complexity included how patients interact with family/professionals, how services' respond to needs and societal perspectives on care. 'Pre-existing', 'cumulative' and 'invisible' complexity are further important dimensions to delivering effective palliative and end-of-life care. The dynamic nature of illness and needs over time was also profoundly influential. Adapting Bronfenbrenner's Ecological Systems Theory, we categorised findings into the microsystem (person, needs and characteristics), chronosystem (dynamic influences of time), mesosystem (interactions with family/health professionals), exosystem (palliative care services/systems) and macrosystem (societal influences). Stakeholders found it acceptable to capture complexity at the patient-level, with perceived benefits for improving palliative care resource allocation. Conclusion: Our conceptual framework encompasses additional elements beyond physical, psychological, social and spiritual domains and advances systematic understanding of complexity within the context of palliative care. This framework helps capture patient-level complexity and target resource provision in specialist palliative care.
Perspectives of patients, family caregivers and health professionals on the use of outcome measures in palliative care and lessons for implementation: a multi-method qualitative study.
Little is known of the usability of Eye Movement Desensitization and Reprocessing (EMDR) as an intervention for those experiencing psychosis. This study aimed to explore therapists’ experience of using EMDR with this population. A qualitative design was employed using an inductive approach and a thematic analysis. Twenty therapists, who had used EMDR with this client group, took part in a semi-structured interview to explore their experiences of the intervention. Key themes were generated from the data: (a) Familiarity with psychosis and EMDR, (b) Acceptability of EMDR, (c) The importance of systemic factors, and (d) Keeping key therapy principles in mind. Findings highlighted the importance of supervision to build therapist confidence, the value of the multidisciplinary team and the need for a shift in beliefs surrounding the usefulness of EMDR to the wider system. Recommendations for individuals and services are provided.
Background: Transitions between care settings (hospice, hospital and community) can be challenging for patients and family caregivers and are often an under-researched area of health care, including palliative care. Aim: To explore the experience of transitions between care settings for those receiving specialist palliative care. Design: Qualitative study using thematic analysis. Setting/participants: Semi-structured interviews were conducted with adult patients ( n = 15) and family caregivers ( n = 11) receiving specialist palliative care, who had undergone at least two transitions. Results: Four themes were identified. (1) Uncertainty about the new care setting. Most participants reported that lack of information about the new setting of care, and difficulties with access and availability of care in the new setting, added to feelings of uncertainty. (2) Biographical disruption. The transition to the new setting often resulted in changes to sense of independence and identity, and maintaining normality was a way to cope with this. (3) Importance of continuity of care. Continuity of care had an impact on feelings of safety in the new setting and influenced decisions about the transition. (4) Need for emotional and practical support. Most participants expressed a greater need for emotional and practical support, when transitioning to a new setting. Conclusions: Findings provide insights into how clinicians might better negotiate transitions for these patients and family caregivers, as well as improve patient outcomes. The complexity and diversity of transition experiences, particularly among patients and families from different ethnicities and cultural backgrounds, need to be further explored in future research.
IntroductionProvision of palliative care is inequitable with wide variations across conditions
and settings in the UK. Lack of a standard way to classify by case complexity is
one of the principle obstacles to addressing this. We aim to develop and validate
a casemix classification to support the prediction of costs of specialist
palliative care provision.Methods and analysisPhase I: A cohort study to determine the variables and potential classes to be
included in a casemix classification. Data are collected from clinicians in
palliative care services across inpatient hospice, hospital and community settings
on: patient demographics, potential complexity/casemix criteria and patient-level
resource use. Cost predictors are derived using multivariate regression and then
incorporated into a classification using classification and regression trees.
Internal validation will be conducted by bootstrapping to quantify any optimism in
the predictive performance (calibration and discrimination) of the developed
classification. Phase II: A mixed-methods cohort study across settings for
external validation of the classification developed in phase I. Patient and family
caregiver data will be collected longitudinally on demographics, potential
complexity/casemix criteria and patient-level resource use. This will be
triangulated with data collected from clinicians on potential complexity/casemix
criteria and patient-level resource use, and with qualitative interviews with
patients and caregivers about care provision across difference settings. The
classification will be refined on the basis of its performance in the validation
data set.Ethics and disseminationThe study has been approved by the National Health Service Health Research
Authority Research Ethics Committee. The results are expected to be disseminated
in 2018 through papers for publication in major palliative care journals; policy
briefs for clinicians, commissioning leads and policy makers; and lay summaries
for patients and public.Trial registration numberISRCTN90752212.
ObjectiveWe aimed to get an in-depth understanding of the emotions experienced by people with motor neurone disease (MND) and their caregivers, and to explore what impacts emotional distress and well-being.DesignQualitative study using semi-structured interviews with people with MND and caregivers.SettingParticipants were recruited from across the UK and took part in interviews conducted either face to face, by telephone or email to accommodate for varying levels of disability.Participants25 people with MND and 10 caregivers took part. Participants were purposively sampled based on their MND diagnosis, symptoms and time since diagnosis.Data analysisData were analysed using inductive reflexive thematic analysis.ResultsEight broad themes were generated (20 subthemes). Participants described the emotional distress of losing physical function and having a threatened future because of poor prognosis. Keeping up with constant changes in symptoms and feeling unsupported by the healthcare system added to emotional distress. Finding hope and positivity, exerting some control, being kinder to oneself and experiencing support from others were helpful strategies for emotional well-being.ConclusionThe study provides a broad understanding of what impacts emotional distress and well-being and discusses implications for psychological interventions for people with MND and caregivers. Any communication and support provided for people with MND and their caregivers, needs to pay attention to concepts of hope, control and compassion.
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