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.     

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.     

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.     

Perceptions of the impact of health-care services provided to palliative care clients and their carers

A wide range of services are provided to palliative care clients to alleviate pain and improve their quality of life. The purpose of this study was to explore the perceptions of clients and their carers regarding palliative care services in New South Wales, Austalia. Ten patients and their carers (n = 7) were randomly selected from a sample of palliative care clients and were informed of the study and interviewed. Interview data were coded independently by three researchers and thematic analysis was undertaken. The themes identified were similar for both clients and carers and included: access to services; service provision; impact on way of life; usefulness of services; and staffing. An additional theme identified by clients was the burden of caregiving on carers. Knowledge of perceptions and concerns of client and carers is important to consider when planning palliative care services.     

An evaluation of dependency assessment: experiences of staff, patients and carers in a UK hospice

AIM: To evaluate the experiences of health-care professionals, service users and carers of service users from a UK hospice in relation to dependency assessment. DESIGN: Qualitative evaluation. SAMPLE: Purposive, convenience sample of hospice staff, patients receiving hospice services and carers of patients receiving hospice services. METHODS: Focus group interviews with hospice staff and carers of hospice service users. Individual interviews with patients. RESULTS: Staff felt the tool used produced inaccurate results, in part because of omissions in content. They did not perceive the data produced affected working practice, e.g. staffing levels. Patients described unobtrusive assessment and stated their needs were met. Carers reported feelings of isolation. They also described differing information and support needs from the patients. CONCLUSION: Further research is required to improve the validity of dependency data collection. Further investigation of carer assessment is also justified.     

Perceptions of goal setting in a neurological rehabilitation unit: a qualitative study of patients, carers and staff

OBJECTIVE: To explore perceptions of goal setting from the perspective of patients, lay carers and rehabilitation staff. DESIGN: Semi-structured interviews analysed independently by 2 researchers using content analysis. SETTING: Neurological rehabilitation inpatient unit for adults. SUBJECTS: Four samples of 10 subjects each, comprising: (i) inpatients, (ii) patients discharged within the last 2 years, (iii) lay carers, (iv) staff. Patients, carers and staff had participated in at least 2 goal setting meetings, patients had any non-progressive neurological condition causing disability and need for inpatient rehabilitation. INTERVENTION: Goal setting meeting. Main outcome measures: Themes identified independently before results triangulated to produce consensus list presented as frequency tables across 4 subject groups. Quotations from narratives used to clarify themes. RESULTS: All 4 groups considered goal setting to be beneficial, increasing motivation and providing reassurance for patients and carers. Carers found goal setting alleviated some anxieties and assisted active problem-solving coping strategies. Staff believed that goal setting made their practice more focused and collaborative because they were working towards stated and shared goals. Specific improvements were suggested regarding education, nature of goals, conduct of meetings and feedback. CONCLUSION: Goal setting appears to provide psychological benefits to patients and carers.     

Caring for patients with terminal delirium: palliative care unit and home care nurses' experiences

AIM: To explore palliative care unit and home care nurses' experiences of caring for patients with terminal delirium. DESIGN: A qualitative exploratory design using individual interviews. SAMPLE: Participants included five nurses working in an interdisciplinary palliative care unit located in a large Canadian city hospital, and four nurses from a palliative home care nursing team located in the same city. RESULTS: Nurses in both sites experienced multiple challenges caring for delirious patients. Additional education on delirium and collaborative teamwork were viewed as key factors in enhancing their ability to care for and support this patient and family population. Four core themes reflected the participants' perceptions and experiences: experiencing distress; the importance of presence; valuing the team; and the need to know more. CONCLUSION: Findings suggest the need for interdisciplinary educational initiatives focused on the identification and management of terminal delirium, and targeted to the specific context in which nurses practise.     

Advanced heart failure: impact on older patients and informal carers

AIM: This paper reports a study exploring the impact of advanced heart failure on the lives of older patients and their informal carers. BACKGROUND: Prognosis is poor in heart failure, with more than a third of patients dying within 12 months of diagnosis, and end-of-life symptoms are distressing and poorly controlled. Although end-of-life care for people with heart failure has received increased attention in recent years, there are still few data on the impact of advanced heart failure on the lives of patients and their informal carers. METHODS: Focused interviews were conducted with 10 older people with advanced heart failure and their nominated informal carer identified from one district general hospital in the United Kingdom (UK). Joint interviews were conducted with patients and carers in their own home. Thematic analysis was used to identify themes and subthemes. FINDINGS: Heart failure affected all aspects of the lives of patients and carers and, in particular, curtailed everyday activities. Patients were very concerned about the 'burden' their illness placed on their carer, who in all cases was their partner, although carers did not conceptualize the situation in this way. The socially isolating influence of the condition on both patients and carers was compounded by lack of professional input, and confusion about diagnosis was evident. Concerns about the future were common and, although few participants reported having been explicitly told about their prognosis, many made realistic statements about their limited life expectancy. CONCLUSIONS: This older cohort of people suffering from heart failure appears to have needs not unlike those of patients with 'terminal diseases'. When people are diagnosed with more familiar terminal illnesses, in particular cancer, they are given ongoing explanations, reassurance and support. Similar professional input is needed for patients with advanced heart failure and their carers.     

Patient aggression in intensive care: A qualitative study of staff experiences

BackgroundWorkplace violence comprises abuse, assaults, threats, and harassment. Reaching epidemic proportions in healthcare, workplace violence compromises staff and patient safety and service efficiency and effectiveness. Although workplace violence is a nontrivial problem in intensive care, little is known about circumstances in which violence occurs in this setting.ObjectiveThe objective of this study was to describe and reflect upon aggression towards staff in the intensive care unit (ICU) from the perspectives of staff members.MethodsWe investigated workplace violence in a qualitative study with data collected from semistructured interviews with 19 staff members of a 10-bed ICU, analysed using a framework approach.FindingsAll participants reported witnessing or experiencing physical and/or verbal aggression. While acknowledging that ‘any patient’ could become aggressive, participants differentiated ‘any patients admitted for treatment of somatic illnesses’ from ‘dangerous’ patients and interpreted violence differently dependent on characteristics of perpetrators. ‘Dangerousness’ was associated with patients who had a comorbid mental illness. Aggression of ‘dangerous patients’ was construed as intentional and/or ‘normal aberrant’ behaviour for the individual. Staff reported feeling ill-prepared to work effectively with this cohort and having difficulty responding empathically. Mental health services were considered ‘responsible’ for managing patients' drug use, personality, and psychiatric problems.ConclusionPerceived knowledge and skill deficits, as well as stigma when engaging with certain subpopulations, contribute to workplace violence in the ICU setting. ICU staff members seek education and support to improve management of patients and reduce risk of violence. However, effectiveness depends on robust service and organisational commitment and strategies to promote workplace health and safety.     

Attitudes of patients and staff to research in a specialist palliative care unit

Many randomized trials in specialist palliative care (SPC) have failed to recruit sufficient numbers of patients. A questionnaire was designed to assess the attitudes of inpatients of a SPC unit to taking part in research. Only 50% of patients were considered physically and mentally fit for interview. Forty patients and 13 nurses were asked to indicate their willingness to take part, or for their patients to take part, in research in general and then in three hypothetical trials. Reasons for their responses were analysed. The patients were generally agreeable to trial participation (66% 'quite happy' or 'very happy'). The nurses were strongly in favour of research participation for the same group of patients (92% 'quite happy' or 'very happy'). The most invasive study involving venepuncture and random drug allocation had the least favourable response (46% of patients and 54% of nurses 'quite happy' or 'very happy'). A trial of reflexology attracted 77% of patients, while 62% were happy to take part in a study involving mood assessment and interview. Factors deterring willingness to participate included the need for record keeping by the patient and concern about potential emotional strain. The nurses correctly identified some of the factors deterring patients, but often their willingness for trial participation did not match that of the patient. Although there is support for research among the small number of potential trial entrants in specialist palliative care units, their limited physical and emotional reserves make careful attention to appropriate trial design essential to the success of future studies.     

Evaluating psycho-educational interventions for informal carers of patients receiving cancer care or palliative care: strengths and limitations of different study designs

Despite evidence of negative psychological sequelae and unmet needs, there are few evaluated interventions for informal caregivers in cancer and palliative care. The aim of this article is to debate the strengths and limitations of randomized controlled trials (RCTs) and other designs that can be used to evaluate the effectiveness of these interventions. Psycho-educational interventions are used as example for this debate article, as a number of studies of various designs evaluating this type of intervention have been published. Systematic searching in Medline and the bibliography of a relevant systematic review identified five RCTs, one pre-test/post-test study with a control group and six one-group pre-test/post-test studies of psycho-educational interventions for caregivers. The methodological strengths and weaknesses were assessed. RCTs are seen as the gold standard, but can have important limitations in the context of carer intervention research, including biased recruitment and low generalizability, problems with blinding and attrition. Pre-test/post-test studies with a control group may be more feasible and more generalizable. Their crucial limitation is selection bias. Before-after studies are compromised by additional specific biases and therefore are the weakest of all discussed designs. After analysing the strengths and weaknesses of the mentioned study designs, this paper presents strategies to address the limitations of RCTs evaluating psycho-educational interventions for carers in cancer or palliative care.     

Evaluation of a short-term group intervention for informal carers of patients attending a home palliative care service

Despite evidence of high psychological distress and unmet needs, evaluated interventions for informal caregivers in palliative care are few. This study involved an observational outcome evaluation of attendees, and a comparison group, in specialist home palliative care. The measures included carer psychological status and patient physical status at baseline, 8 weeks, and 20 weeks. Qualitative data were collected regarding content, satisfaction with, and impact of intervention. Process data described the uptake, resources, and group activity. The intervention combined informal multiprofessional teaching with facilitated peer exchange and support, and was delivered over 6 sessions of 90 minutes per week. The uptake rate was 25%; carers were less likely to accept if they were in paid employment (OR=0.26, P=0.06), and more likely to accept if they utilized avoidance coping (OR=1.13, P=0.04) or their patient had worse physical status (OR=2.1, P=0.03). Attendees described significant support and knowledge gains from the multiprofessional input and peer group. Most relied on social comparison processes to appraise their situation. Potential detection of significant effects on global psychological scores (i.e. anxiety, depression, and burden) using multivariate analysis was disallowed due to attrition. This acceptable and accessible intervention provided information and support; further outcome studies are needed for a range of interventions. Short-term interventions are unlikely to affect global psychological scores, and future evaluations should include additional time points of data collection to demonstrate support during attendance.     

Exploring the value of shiatsu in palliative care day services

This qualitative study sought to evaluate the effects of shiatsu therapy on clients attending hospice day services. Eleven clients with advanced progressive disease received five therapy sessions each at weekly intervals. Data about the effects was collected through five unstructured interviews with each client. Four of these were conducted before, during, and shortly after the therapy regime, and the fifth was undertaken four weeks after treatment ended. All the interviews were tape-recorded, transcribed and subject to content analysis. The results of the analysis revealed significant improvements in energy levels, relaxation, confidence, symptom control, clarity of thought and mobility. These benefits were of variable duration - in some instances lasting a few hours but in others extending beyond the 5-week treatment regime. Action to ensure research trustworthiness included keeping research journals to provide an audit trail, conducting member checks and using peer debriefing. The study involved three overlapping cohorts of participants in a data collection period that took approximately 6 months.     

A qualitative analysis of the information needs of informal carers of terminally ill cancer patients

This article discusses issues relating to information arising from a qualitative study of the experiences of informal carers of terminally ill cancer patients. Qualitative data analysis, drawing on methods of literary criticism, revealed that information was a key area in carers' experience. The findings are presented in the context of needing to provide individualized care to every family and deal with information needs relating to the illness and prognosis. The question of who is in possession of what information is raised, and the effect that this can have on couples is discussed, together with the issue of false information which carers may receive. The discussion centres on the complexity of understanding carers' information needs and considers how these are affected by the context within which carers operate. The work of Glaser and Strauss on awareness contexts is discussed in this respect. Finally, the importance of the nurse's role as a sensitive mediator of information is considered.     

The outcomes of palliative care day services: a systematic review

This systematic review evaluates the evidence underpinning the provision of palliative day care services (PDS) to determine whether such services have a measurable effect on attendees' wellbeing. The majority of studies reviewed were qualitative and elicited individual perceptions of the benefits PDS. Although it was difficult to determine the quality of many studies, it would appear that attendance at PDS had a positive impact on attendees' quality of life. Fewer studies utilized validated outcome measures to determine the effect of PDS on attendees' wellbeing and small sample sizes combined with high attrition rates influenced the significance of some the results. However little quantitative evidence was offered to prove that PDS had an impact on attendees' quality of life or wellbeing. The review concludes that dying people find attending PDS a valuable experience that allows them to engage with others and to be supported in a restorative environment. However, further well-powered empirical studies are required to provide quality evidence to determine whether or not attendance at PDS does indeed have a positive impact on the wellbeing of attendees.