ABSTRACT
Background Changes made by palliative care services in response to the pandemic have been reported by service leaders, describing organisation-level decisions and solutions (Bradshaw, Dunleavy, Walshe, et al., 2021;Dunleavy, Preston, Bajwah, et al., 2021;Oluyase, Hocaoglu, Cripps, et al., [preprint], 2020). The impact of the pandemic on direct care provision as experienced by multidisciplinary team members has not been explored. Aims To understand hospice multidisciplinary staff 's views on care provision during COVID-19 and the effect of providing care on staff wellbeing, burnout levels and spiritual health and the consequent influence on workforce sustainability. Methods A survey of clinical staff in an independent hospice providing adult and paediatric inpatients and lymphoedema, bereavement and day services during the pandemic including validated wellbeing, burnout, and spirituality questions. Qualitative data from the survey was analysed using the Human Learning Systems Framework (Lowe & Plimmer, 2019). Results 29% of staff completed the survey. Staff 's responses demonstrated that the pandemic had a significant negative effect on their wellbeing with high levels of all domains of burnout whilst spiritual health was less affected. Qualitative analysis revealed human themes including the impact of isolation and visiting restrictions on patients and family whilst staff described their ability to maintain a sense of positivity and purpose despite anxiety and frustration. Learning themes focussed on adapting and learning through adversity. System themes described the barriers to providing holistic care and how these were overcome and the importance of accessible communication and ensuring appropriate assessment including the provision of remote, domiciliary, and ambulatory care. Conclusions Hospice staff 's psychological wellbeing and expertise in providing holistic care has been tested to the limit during the pandemic, however, they have responded with positivity, producing innovative solutions. Hospice staff 's opinions and support for their wellbeing must be incorporated into current and new care models to ensure they can continue to be empathic carers, patient and family advocates and inspirational innovators (Marie Curie, 2021).
ABSTRACT
Background and Aims People of African and Caribbean descent experienced the highest mortality rates during the pandemic, yet often have the poorest access to palliative care. This study aims to identify how palliative care services can better meet the needs of people of African and Caribbean descent, by exploring patients' (by proxy), families' and health, social care and community workers' experiences of end-of-life-care during the pandemic. Methods Bereaved relatives, and professionals were recruited using social media, community networks and direct advertising to over 100 organisations. Semi-structured interviews explored experiences of end-of-life-care using a topic guide, developed with patient and public involvement partners. Participants' suggestions for care improvement were foregrounded throughout. The theoretical framework combined Critical Race Theory and Saurman's model of access. Thematic analysis was used. Results Over 40 participants were recruited. Results indicate that people of African and Caribbean descent are poorly served by current services. Interviewees identified distinct differences between the culture of care, and that of the patent. Participants reported institutional racism. Processes were insensitive to diversity in family and community support structures in different cultures. Themes describing end of life care services included: Unavailable: spiritual support, paid carers, specialist care, visitation and choice Inadequate: advertisement of services, cultural diversity and the appreciation of the importance of extended families Unacceptable: communication surrounding death and bereavement (upstream/proactive early discussions would improve engagement) and mental health and bereavement support. Conclusions People of African and Caribbean descent are often termed a 'hard to reach' group. Yet our study suggests that current configuration mean it is services that are hard to reach. Prioritisation of person-centred, culturally competent spiritual, psychological and social interventions remains an aspiration for palliative care. A focus on cultural sensitivity and communication may be a good start to enhance palliative and end of life care for all.
ABSTRACT
Introduction: Chimeric Antigen Receptor T-cell therapy (CAR-T) is a potentially life-saving treatment for refractory haematological malignancies. Many UK CAR-T services are in their infancy. Patient perspectives on service delivery, treatment toxicity and impact on health related quality of life (HRQoL) are lacking. This qualitative evaluation aimed to explore the patient and carer experience of CAR-T and identify areas for service improvement. Methods: Patients who received CAR-T between April 2019 and March 2021 at the Freeman Hospital, Newcastle-upon-Tyne, who attended primary or follow-up appointments between December 2020 and March 2021 were asked if they wanted to take part in the evaluation. 16 semi-structured qualitative interviews were carried out with 10 patients and 4 carers at specific time points in the patient journey: hospital admission prior to CAR T-cell infusion, day 28 postinfusion and routine follow-up appointments after treatment (8, 9, 12 and 18 months). Five patients completed 2 interviews (pre-infusion and day 28). Results: The mean age of the patients was 54 and 60% were female. Nine patients had diffuse large B-cell lymphoma and one had primary mediastinal B-cell lymphoma. Inductive thematic analysis identified three main themes. The importance of the CAR-T nurse specialist as a point of contact was consistently identified by patients and carers as vital to navigating the treatment process. The continuity of care and approachability associated with this role were linked to patient satisfaction and perceived level of support received. Reported treatment toxicity centred on fatigue, poor appetite/weight loss and problems with memory and cognition. Patients and carers were well prepared for side effects in the acute treatment phase but some felt less prepared for prolonged impact on physical function and cognition after discharge. CAR-T therapy was viewed as a 'lifeline,' but the uncertainty of treatment outcome caused significant anxiety, disruption to employment and family life, and made it difficult to make future plans. Many responses were framed by the COVID-19 pandemic which increased feelings of isolation and vulnerability and had a significant, negative impact on HRQoL. Conclusions: To our knowledge this is the first qualitative work exploring the views of CAR-T patients and carers at multiple points in the patient journey, including perspectives on long-term treatment impact. Considerations for service creation and development nationally and internationally include: the importance of a dedicated nurse specialist, preparing patients for and supporting them with prolonged treatment side effects, and the psychological challenges associated with prognostic uncertainty. Expanding indications of CAR-T therapy mean there is an urgent need for multi-centre studies incorporating patient-reported outcome data to inform patient centred care and service delivery.