Community specialist palliative care: experiences of patients and carers

Specialist palliative care provides a range of services for patients and their carers who have complex needs. There is a need to identify what patients and carers gain from contact with the specialist palliative care nurse (SPCN) and what aspects of that care have a positive impact on their quality of life (QoL). The aims of the study were to gain insightful and credible accounts of participants' experiences of the SPCN; to consider those dimensions of care which impact on satisfaction; to discover whether the SPCN provides improvements in QoL and to explore whether experiences match expectations. A qualitative approach focused on the experience and individual meaning; it is the individual narratives produced by each participant that are the rich and interesting outcomes of this study. Both patients and carers reported satisfaction at being given time and being listened to, with the interviewees using words and phrases such as 'confidence', 'trust', knowledge', 'listens to' and 'a sense of being there'. The study shows the patient and carers' lack of knowledge about specialist palliative care while confirming the positive influence of the SPCN.     

Assessing palliative care needs: views of patients, informal carers and healthcare professionals

AIM: This paper reports a study to assess the palliative care needs of the adult population served by a healthcare provider organization in Northern Ireland from the perspectives of patients, informal carers and healthcare providers. BACKGROUND: Assessing palliative care need is a key factor for health service planning. Traditionally, palliative care has been associated with end-of-life care and cancer. More recently, the concept has been extended to include care for both cancer and non-cancer populations. Various approaches have been advocated for assessing need, including the exploration of professional provider and user perspectives of need. METHOD: Semi-structured qualitative interviews were undertaken with a purposive sample of patients and lay carers receiving palliative care services (n = 24). Focus groups were also conducted with multi-professional palliative care providers (n = 52 participants) and face to face interviews were undertaken with key managerial stakeholders in the area (n = 7). The focus groups and interviews concentrated on assessment of palliative care need. All the interviews were transcribed verbatim and analysed using Burnard's framework. FINDINGS: Professional providers experienced difficulty in defining the term palliative care. Difficulties in communication and information exchange, and fragmented co-ordination between services were identified. The main areas of need identified by all participants were social and psychological support; financial concerns; and the need for choice and information. All participants considered that there was inequity between palliative care service provision for patients with cancer and non-cancer diseases. CONCLUSION: All patients, regardless of diagnosis, should be able to access palliative care appropriate to their individual needs. For this to happen in practice, an integrated approach to palliative care is essential. The study methodology confirms the value of developing a comprehensive approach to assessing palliative care need.     

Pediatric palliative care online: the views of health care professionals

The purpose of the study was to evaluate the role of an online resource for dying children, their family members, and health care providers from the perspective of pediatric palliative care experts. Semistructured interviews with 12 leaders in pediatric palliative care in North America were conducted, exploring their perceptions and attitudes towards various aspects of Web-based resources for dying children and their care providers. Informants felt that an online resource may allow for a different form of expression, a connection between people undergoing a rare event, and an increase in education and support. Major challenges, such as accessibility, monitoring, and remaining current, would be ongoing. Other key themes included access, information, and anonymity. The data suggest that developing Web-based resources for dying young patients and their families may have merit. Should this take place, a feasibility study will be necessary to further determine the value of such a Web site for these vulnerable populations.     

Systematic review of specialist palliative day-care for adults with cancer

Goal of work To inform future practice, research and policy in specialist palliative day-care by systematically reviewing the evidence for how the structure and process of this form of care relate to outcomes for adults with cancer.Patients and methods Medical, nursing and social science computerized databases were searched up until December 2003 for studies of palliative day-care reporting information on service structure, care processes or outcomes including symptom control, quality of life, social and psychological support, and patient and relative satisfaction with care. Qualitative and quantitative studies were assessed for methodological quality and graded, and the findings synthesized into the review.Main results Twelve observational studies were found that showed the difficulties of evaluating a service already operating and of recruiting a vulnerable population of patients as they deteriorated. Most services are nurse-led, but varied in the facilities, staff mix, care models, activities and places they offered. Patients attending seemed a selected group of those already receiving palliative care who were mostly white, aged over 60 years and retired, with needs for emotional and social support and pain control. There were insufficient studies to provide conclusive evidence of improved symptom control or health-related quality of life, but all qualitative studies found patients valued the social support and opportunity to take part in activities that day-care provided.Conclusions There is evidence for high satisfaction among patients selected into day-care, but not yet sufficient to judge whether this improves symptom control or health-related quality of life. Further research should explore selection and access into care, the most effective models of care, its cost, and potential benefits for relatives and carers. Comparison with models of care for older adults and those with mental illness would also be informative.     

Measures of spiritual issues for palliative care patients: a literature review

Members of the Quality of Life Group (QLG) of the European Organisation for Research and Treatment of Cancer (EORTC) are developing a stand-alone functional measure of spiritual well being for palliative care patients, which will have both a clinical and a measurement application. This article discusses data from a literature review, conducted at two time points as part of the development process of this instrument. The review identified 29 existing measures of issues relating to patients' spirituality or spiritual well being. Twenty two are stand-alone measures of which 15 can be categorised as substantive (investigating the substance of respondents' beliefs) and seven as functional (exploring the function those beliefs serve). However, perhaps owing to the lack of consensus concerning spirituality or spiritual well being, the functional measures all have different (although sometimes overlapping) dimensions. In addition, they were all developed in a single cultural context (the United States), often with predominantly Christian participants, and most were not developed with palliative care patients. None is, therefore, entirely suitable for use with palliative care patients in the United Kingdom or continental Europe.     

Yoga for patients and carers in a palliative day care setting

This study suggests that yoga can be of benefit to patients (and carers) in palliative care settings. Complementary therapies have been employed in our day care unit for several years--aromatherapy, reflexology and massage--and have grown in popularity, enabling relaxation and a feeling of well-being. For patients striving to remain physically fit and, in consultation with our physiotherapist, we felt there may be a role for a gentle form of yoga. A study of the literature yielded information on yoga and cancer but little evidence of its use in palliative care. Having identified a form of yoga that could be adapted for those with physical frailties-- Dru yoga--a 12-week pilot project was introduced into the day care unit. This proved to be highly successful and has now been incorporated as part of our therapeutic service.     

Palliative care provision for people with intellectual disabilities: a questionnaire survey of specialist palliative care professionals

There is a growing interest in the palliative care needs of people with intellectual disabilities (ID). There are indications that palliative care staff face particular problems providing care to this group, but empirical data about the extent of the problem are lacking. This study aims to gain insight into the current use of palliative care services by people with ID in London, to identify the prevalence and severity of problems faced by palliative care professionals and to identify strategies that will facilitate an improvement in access and delivery of palliative care services to people with ID. A postal questionnaire was developed for this study and returned by 543 professionals working in 53 specialist palliative care services in London (57% response rate). Sixty-seven percent of respondents had supported a patient with ID at some point in their palliative care career. Problems arising from the patient's difficulty in understanding the illness and treatment were reported as the most pertinent. Other prevalent problems included difficulty around communication, assessment and patient fear. Respondents emphasised the need for collaboration with carers and other services. Link worker schemes, training and access to background information were seen as most helpful. The authors conclude that palliative care services appear to be under-used by people with ID. There is a distinct set of problems related to the provision of palliative care for people with ID. Palliative care services should assess the nature and level of their service provision for people with ID. Future research should include epidemiological studies to assess need and include people with ID as informants to evaluate the effectiveness of palliative care provision.     

Medication issues experienced by patients and carers after discharge from the intensive care unit

Purpose

Medication-related problems (MRPs) frequently occur at the interfaces of care settings. We examined this further because little has been published about MRPs experienced by patients/carers after discharge from the intensive care unit (ICU).

Methods and Materials

Medication history data were collected before, during, and after ICU admission and by face-to-face semistructured interviews with 21 patients and 13 carers attending the ICU Follow-up Clinic (FC) of our 35-bed adult ICU.

Results

A total of 122 drugs were prescribed regularly before ICU admission, 168 on ICU discharge, 132 at hospital discharge, and 128 at the FC. Medication-related problems were identified with hypnotics/anxiolytics, antidepressants, proton pump inhibitors, and analgesics. Good follow-up was observed in all 4 cases where the antidysrhythmic agent amiodarone was initiated on ICU. Patients/carers described 20 cases of difficulty in obtaining appropriate and timely supplies and 19 of insufficient information.

Conclusions

These results show that our incidence of MRPs after ICU discharge was encouragingly infrequent, in which we attribute it to targeted medicine reconciliation and the availability of our FC. However, MRPs were perceived to stem from inadequate communication at the interfaces of care and the lack of opportunity for patients/carers to obtain relevant information. We recommend that FC should focus on MRPs during their consultation and that further research in this area should be performed to examine our observations further.     

Surviving severe COVID-19: Interviews with patients,informal carers and health professionals

Background

The COVID-19 pandemic has been associated with an unprecedented number of critical care survivors. Their experiences through illness and recovery are likely to be complex, but little is known about how best to support them.

Aim

This study aimed to explore experiences of illness and recovery from the perspective of survivors, their relatives and professionals involved in their care.

Study design

In-depth qualitative interviews were conducted with three stakeholder groups during the first wave of the pandemic. A total of 23 participants (12 professionals, 6 survivors and 5 relatives) were recruited from 5 acute hospitals in England and interviewed by telephone or video call. Data analysis followed the principles of Reflexive Thematic Analysis.

Findings

Three themes were generated from their interview data: (1) Deteriorating fast—a downhill journey from symptom onset to critical care; (2) Facing a new virus in a hospital—a remote place; and (3) Returning home as a survivor, maintaining normality and recovering slowly.

Conclusions

Our findings highlight challenges in accessing care and communication between patients, hospital staff and relatives. Following hospital discharge, patients adopted a reframed ‘survivor identity’ to cope with their experience of illness and slow recovery process. The concept of survivorship in this patient group may be beneficial to promote and explore further.

Relevance to clinical practice

All efforts should be made to continue to improve communication between patients, relatives and health professionals during critical care admissions, particularly while hospital visits are restricted. Adapting to life after critical illness may be more challenging while health services are restricted by the impacts of the pandemic. It may be beneficial to promote the concept of survivorship, following admission to critical care due to severe COVID-19.     

‘Quite an awkward situation to be in’: perceptions of patients, carers and health and social care professionals of the supportive cancer care in British military personnel stationed in Germany

Goals of work  

This paper reports findings from a study which identified the nature and volume of supportive care received by British military services personnel and their dependents who experience cancer and are based in Germany. The objectives were to (1) identify any gaps in the provision of supportive care, (2) determine the potential for additional supportive care services (local or remote), and (3) identify any educational or development issues for DMWS personnel.     

Integrated education of health care professionals applied to social medicine in primary health care

A Regional Health University is planned at the University of Link?ping, Sweden. To evaluate new educational principles, a trial project was carried out in which medical and nursing students trained together in a two-week full-time course aimed at patient-oriented clinical social medicine and epidemiological field work in primary health care and involving a high degree of group activity and responsibility. The students' expectations concerning improvement in theoretical and applied knowledge and motivation for co-operation in future work situations were fulfilled. The students also enjoyed the way of working. The programme requires more time in planning and supervision than a traditional one.     

Development of the palliative care needs assessment tool (PC-NAT) for use by multi-disciplinary health professionals

Needs assessment strategies can facilitate prioritisation of resources. To develop a needs assessment tool for use with advanced cancer patients and caregivers, to prompt early intervation. A convenience sample of 103 health professionals viewed three videotaped consultations involving a simulated patient, his/her caregiver and a health professional, completed the Palliative Care Needs Assessment Tool (PC-NAT) and provided feedback on clarity, content and acceptability of the PC-NAT. Face and content validity, acceptability and feasibility of the PC-NAT were confirmed. Kappa scores indicated adequate inter-rater reliability for the majority of domains; the patient spirituality domain and the caregiver physical and family and relationship domains had low reliability. The PC-NAT can be used by health professionals with a range of clinical expertise to identify individuals' needs, thereby enabling early intervention. Further psychometric testing and an evaluation to assess the impact of the systematic use of the PC-NAT on quality of life, unmet needs and service utilisation of patients and caregivers are underway.     

Priorities in primary health care. The views of patients, politicians and health care professionals

A written inquiry was undertaken to explore the expectations towards primary care physicians (general practitioners), as expressed by patients, local health board members and health centre staff members. Treatment without delay was given top priority both by patients and board members, while continuity of care was considered most important by the health care professionals. Great similarity of opinions was expressed by patients and health board members, while staff members differed significantly in their views. A low degree of participation in the study by the politicians coincided with the authors' experience of lack of interest in the content of primary health care shown by health board members.     

Identifying the concerns of informal carers in palliative care.

The purpose of this preliminary study was to identify the perceived support needs of informal carers (families and friends) of cancer patients receiving palliative care in the community. Changes in policy mean that increasing numbers of palliative care patients receive the majority of their care at home. This potentially places heavy demands on families and friends. Thirty-nine informal carers were recruited from two areas in southern England. Data were obtained on psychological morbidity (General Health Questionnaire), and caregiving burden (Carer Strain Index), and a semistructured interview was used to elicit data on perceptions of caring. Results indicate that 33 (84%) reported above normal levels of psychological distress and 16 (41%) experienced high levels of strain related to caregiving. Younger age and being female were found to be correlated with psychological morbidity and strain. Participants also reported life restrictions, emotional distress and limited support.