Sarah G. Brearley

Background: GPs are instrumental to palliative care in the UK and most practices maintain a register of patients with palliative care needs. However, many people with incurable cancer who could benefit from palliative care are not included on this register, making this a potential source of end-of-life inequity. Aim: To identify barriers and facilitators to recognising the palliative care needs of patients with cancer in the UK and understand how these factors may have an impact on those vulnerable to end-of-life inequity. Design and setting: A mixed-methods systematic review. Method: Eight electronic databases (Alternative Medicine, CINAHL, Embase, Medline, PsycINFO, Scopus, SocINDEX, and Web of Science) and two preprint servers (medRXiv and Open Science Framework) were searched in November 2024. Qualitative, quantitative, and mixed-methods studies were included. Narrative synthesis was used to integrate study findings, with resulting barriers and facilitators mapped onto the COM-B model domains of capablity, opportunity, and motivation. The impact on equity was evaluated using the PROGRESS-Plus framework. Results: Searches returned 7190 citations, with 24 studies included in the review. Seven themes were identified, with barriers and facilitators mapped onto COM-B domains: conceptualisation of palliative care; navigating challenging conversations; healthcare organisation; patient help-seeking; time and resource constraints; perceptions shaping practice; and cognitive associations. There was insufficient evidence about the barriers and facilitators that may be having an impact on those vulnerable to end-of-life inequities. Conclusion: GPs experience many barriers to recognising palliative care needs. There is a need for greater understanding of the extent and nature of inequities in recognising such needs, to ensure strategies to increase recognition do not widen inequities.

Objectives Little is known about the early stress experiences of parents of infants with serious life-limiting/life-threatening conditions during the initial months after discharge from hospital. The aim of the study was to measure change, and predictors of change, in parenting stress at the time of transition from hospital to home (T1) with a medically fragile infant, and after a 3-month period (T2). Methods Parents of infants identified as meeting ≥ 1 palliative care referral criterion were recruited in a Midwestern United States tertiary pediatric hospital (2012–2014) within 2 weeks of hospital discharge. A repeated measures design was used to assess change on a validated parenting stress inventory over the two timepoints (T1 and T2). Fifty-two parents (61 infants) participated at T1 and 44 (85%) at T2. Results On discharge (T1) stress was moderately high 3 months post discharge (T2) overall and domain-specific stress scores improved, except stress related to parent role functioning and participation in their child’s medical care. Independent predictors of improvement in overall parenting stress scores (T2-T1) were being a younger parent and having experienced prior pregnancy-related loss. Conclusions for Practice The time of discharge from hospital to home is often stressful for parents of medically fragile infants. Improvements were found during the first 3 months at home, but improvement was minimal for stress related to role function and providing medical care. Past experience with pregnancy-related loss and being younger were associated with improvement in stress across theoretical domains. Screening for stress should be included as part of routine pre- and post-neonatal intensive care unit discharge psychosocial assessments of parents caring for infants with serious illness to ensure their unique support needs continue to be met over time.

Background: Healthcare usage patterns change for people with life limiting illness as death approaches, with increasing use of out-of-hours services. How best to provide care out of hours is unclear. Aim: To evaluate the effectiveness and effect of enhancements to 7-day specialist palliative care services, and to explore a range of perspectives on these enhanced services. Design: An exploratory longitudinal mixed-methods convergent design. This incorporated a quasi-experimental uncontrolled pre-post study using routine data, followed by semi-structured interviews with patients, family carers and health care professionals. Setting/participants: Data were collected within specialist palliative care services across two UK localities between 2018 and 2020. Routine data from 5601 unique individuals were analysed, with post-intervention interview data from patients ( n = 19), family carers ( n = 23) and health care professionals ( n = 33; n = 33 time 1, n = 20 time 2). Results: The mean age of people receiving care was 73 years, predominantly white (90%) and with cancer (42%). There were trends for those in the intervention (enhanced care) period to stay in hospital 0.16 days fewer, but be hospitalised 2.67 more times. Females stayed almost 3.5 more days in the hospital, but were admitted 2.48 fewer times. People with cancer had shorter hospitalisations (4 days fewer), and had two fewer admission episodes. Themes from the qualitative data included responsiveness (of the service); reassurance; relationships; reciprocity (between patients, family carers and staff) and retention (of service staff). Conclusions: Enhanced seven-day services provide high quality integrated palliative care, with positive experiences for patients, carers and staff.

Summary: Adequate postoperative analgesia is a key element of enhanced recovery programmes. Thoracic epidural analgesia is associated with superior postoperative analgesia but can lead to complications. Rectus sheath catheter analgesia may provide an alternative. In a nested qualitative study (within a two‐year randomised controlled trial) focussing on the acceptability, expectations and experiences of receiving the interventions, participants (n = 20) were interviewed 4 weeks post‐intervention using a grounded theory approach. Constant comparative analysis, with patient and public involvement, enabled emerging findings to be pursued through subsequent data collection. We found no notable differences regarding postoperative acceptability or the experience of pain management. Pre‐operatively, however, thoracic epidural analgesia was a source of anticipatory fear and anxiety. Both interventions resulted in some experienced adverse events (proportionately more with thoracic epidural analgesia). Participants had negative experiences of the insertion of thoracic epidural analgesia; others receiving the rectus sheath catheter lacked confidence in staff members' ability to manage the local anaesthetic infusion pump. The anticipation of the technique of thoracic epidural analgesia, and concerns about its impact on mobility, represented an additional, unpleasant experience for patients already managing an illness experience, anticipating a life‐changing operation and dealing with concerns about the future. The anticipation of rectus sheath catheter analgesia was not associated with such anxieties. Patients' experiences start far earlier than the experience of the intervention itself through anticipatory anxieties and fears about receiving a technique and its potential implications. Complex pain packages can take on greater meaning than their actual efficacy in relieving postoperative pain. Future research into patient acceptability and experience should not focus solely on efficacy of pain relief but should include anticipatory fears, anxieties and experiences.

Purpose Advances in cancer treatment have led to longer cancer-free periods and overall survival. This study aimed to understand patients’ experiences of transitioning out of a state of believing to be cancer free into incurable recurrence with advanced disease. Methods Using constructivist grounded theory with in-depth interviews patients (n = 15) with solid tumors from a major US cancer center participated. Theoretical sampling enabled concepts to be developed until theme saturation. Constant comparative analysis used initial and focused coding to develop themes and concepts to describe this specific period from extended time cancer free and transition to advanced incurable disease. Results Three interrelated concepts were identified: reluctant acceptance, seeking survival through continuous treatment, and hope in the face of an uncertain future. A conceptual model of the experience was developed encompassing anger and sadness, at initial recurrence, to reluctant acceptance, and, finally, a cycle of seeking continuous treatment to prolong life leading to a sense of hope in the face of an uncertain future. Conclusion The cycle between treatment and hope creates a state of personal equilibrium, which provides insights into the importance of treatment for this population. This study provides direction for future research to understand the expectations of people experiencing advanced cancer recurrence. Implications for cancer survivors Many cancer survivors live with advanced cancer. Assessing their needs as they transition from survivor with no disease to survivor with advanced disease requires a new conceptualization of the experience which recognizes expectations and priorities for care of this patient group.

Cancer-related fatigue and loss of physical functioning are distressing symptoms which negatively impact the quality of life of people with advanced cancer. Physical activity has been shown to have positive effects on these symptoms in early-stage cancer, but previous research demonstrated an incongruence between people with advanced cancer’s expressed interest and actual participation in a physical activity intervention. To gain an in-depth understanding of the experience of activity and quality of life in people with advanced cancer, using a classic grounded theory approach. Through the post-positivist lens of subtle realism, and informed by classic grounded theory methods, a two-phase, cross-sectional, qualitative study was conducted. For 7 days duration, participants wore an activPAL™ activity monitor and completed a daily record sheet, which were then used as qualitative probes for face-to-face, semi-structured interviews. A total of 15 people with advanced cancer, aged 18 years or older, and with a median survival of 100 days from time of study consent, were recruited from an outpatient department of a tertiary cancer centre in Alberta, Canada. Maintaining their responsibilities, no matter how small, was the prime motive for participants’ behaviour. For people with advanced cancer, the minimum level of responsibility was dynamic and unique. It was achieved through a multifaceted interaction between the perceived benefits, prevailing conditions and mechanisms. This grounded theory enables understanding of activity as a mechanism through which responsibility is managed and may inform future behavioural interventions in people with advanced cancer.

Background: Breast cancer is the most common cancer in women globally. Its negative effects on a woman’s quality of life are related to the individual and socio-cultural factors. This review aimed to identify and synthesise the reported experiences and quality of life of women with breast cancer in Arab countries. Methods: PubMed, Embase, Web of Science, SCOPUS, PsychInfo, CINAHL, Allied and Complementary Medicine Database, and Index Medicus for the Eastern Mediterranean Region were searched for articles published from start to March 2019 using PRISMA guidelines. These searches were complimented by citation tracking and hand searching of relevant journals. A thematic synthesis was carried out on the ‘findings/results’ sections from the identified papers. Results: Of 5228 records identified, 19 were included in the review which represented 401 women from 11 Arab countries. All used qualitative methods of data collection to produce rich descriptions of experiences. Thematic synthesis of the extracted data identified three major themes, Perceptions and reactions, Coping or enduring and Changing roles. Conclusions: This review provides a rich description of the reported quality of life and experiences of women with breast cancer in Arab countries. These are influenced by the women’s and society’s views of cancer, the women’s role in society and family, religious faith and the healthcare context and access to treatment choices and information.

Internationally, evidence on the support needs of family carers who look after a terminally ill adult in home settings is incomplete. To illustrate the relevance of ‘relevant background worries’ in family carers’ accounts of caring at home for a dying adult. A qualitative cross-sectional observational study was conducted in England, United Kingdom, in 2011–2013 on the experiences of adult family carers (n = 59) of older dying adults (aged 50+ years) with malignant and/or non-malignant conditions. Interviews occurred post-bereavement. This article reports on a subset of participants’ interview transcripts (n = 30) where narrative analysis was undertaken. Carers were interviewed in their home setting, having been purposively recruited via general practitioner practices in two study sites in England. The subset of participants (n = 30) was purposively selected from the parent sample with reference to carers’ age, relationship to the patient, family circumstances and study sites. Evidence is provided on the importance of what we conceptualise as carers’ ‘relevant background worries’; these varied in nature, significance and impact. Four case studies are presented where these worries constituted psychosocial factors that impacted on caregivers’ actions and emotional well-being. Two themes are discussed: (1) whether relevant background worries are important enough to be identified and responded to and (2) how such worries could be picked up and managed by professionals. It is argued that the quality of clinical practice could be improved if specialist palliative care teams in community contexts both identified and responded to significant support needs associated with family carers’ relevant background worries.

The National Institute for Health and Care Excellence (NICE) promotes evidence-based medicine throughout contemporary health care. Its guidelines are employed in the United Kingdom and elsewhere, influencing the type and quality of health care provided. NICE considers a range of evidence in the process of creating guidelines; however, the research accepted as evidence greatly relies on positivist methodologies. At times, it is unnecessarily restricted to quantitative methods of data collection. Using the Clinical Guideline 140, opioids in palliative care, as an example, it is demonstrated that the research accepted as evidence is unable to provide answers to complex problems. In addition, several inherent biases are discussed, such as age inequality and pharmaceutical company influence. In order to provide coherent and useful guidelines relevant to complex problems in a real world setting, NICE must move away from focusing on data from randomised controlled trials. Its epistemological foundation must be questioned, paving the way for alternative research paradigms to be considered as evidence and thereby enriching subsequent guidelines.

At the end of life, silence often takes increasing prominence in caregiving encounters. Valued in spiritual and religious traditions, silence lends itself to the spiritual and existential dimensions of healthcare but lack of familiarity with the phenomenon can lead to anxiety or avoidance. Greater understanding of the contribution of silence to care may support professional caregiving practice. This paper reports research that explored the nature, meaning and value of silence in palliative spiritual care. In a two-phase phenomenological approach, data were gathered through self-inquiry and unstructured interviews with 15 palliative care chaplains. A descriptive and hermeneutic analysis facilitated explication of the lived experience to produce an interpretation of essential qualities of silence in this context. ‘Spiritual caregiving silence’ emerged as a person-centred phenomenon that supports patients and their relatives. It is described as a way of being with another person, complementary to speech and non-verbal communication, which evokes a sense of companionship and connection. The caregiver takes both active and participative roles in the silence to create an accompanied space that allows the other person in the relationship to be with her or himself in a way that may not be possible when alone. This demands engagement and commitment. Silence provides a means of, and a medium for, communication that is beyond the capacity of words and has the potential to enable change. This insight into the specialist experience of chaplains may resonate with the experience of other professional caregivers to stimulate reflection and discussion, and to benefit patient care.