A national survey of health professionals and volunteers working in voluntary hospices in the UK. II. Staff and volunteers' experiences of working in hospices

In this paper we report findings of a 1999 nationally representative survey of independent hospices in the UK, focusing on hospice staff and volunteers' experiences of working in hospices. Nineteen of 25 sampled services participated, and these differed little in terms of service provision, size and region from the total sample of 175 services. A response rate of 70% for randomly sampled hospice staff and volunteers was achieved (n=504). There were significant intergroup differences (doctors, nurses, nursing auxiliaries, other staff and volunteers) in participants' reported experience of working in the hospice with, for example, doctors being more likely than other groups to feel appreciated and to report receiving adequate support from hospice management. Overall, 31% of respondents wanted more support from management. Half had considered leaving the hospice (65% nurses, 60% other staff, 55% nursing auxiliaries, 40% doctors and 37% volunteers). Nurses who had considered leaving were less satisfied than other nurses with, for example, support from hospice management, and less likely to feel valued by the hospice. These results raise questions about the quality of the relationship between hospice trustees, managers and staff, and about the realities of enhancing multiprofessional teamwork in organizations where there are significant differences between staff groups in perception of, and satisfaction with, the working environment. Voluntary hospice trustees and managers face a difficult task in managing and supporting staff whilst also negotiating relationships with the NHS at a time of rapid change, and ensuring hospices' financial viability. Access to high quality leadership programmes may play an important role in ensuring voluntary hospices are characterized by effective, supportive working relationships.     

Minimum dataset activity for hospice and hospital palliative care services in the UK 1997/98

This study reports on the third in an annual series of surveys covering England, Wales, Scotland and Northern Ireland on the activity of palliative care services. This report concentrates on inpatient (hospice and hospital) services. All 640 known UK palliative services were sent a standardized questionnaire asking about the characteristics and numbers of patients cared for. Results were analysed for those services primarily for adults. From the 189 inpatient units (2955 beds) there was an 84% response rate in total, but the response to many of the questions was lower than this. Sixty per cent of services recorded 24,362 new patients, and about 50% provided details showing that 96.7% patients had cancer, and one-third were aged under 65 years. This is higher than the national distribution of cancer deaths where 24% are under 65 years. Conversely, only 7% were in the over 84 age group, which has 14% of cancer deaths. Most patients (73%) were admitted from their own home. Half of the admissions ended in death, and the majority of discharges were to the patient's own home. The mean length of stay was 13.1 days, with larger units tending to have a longer length of stay. Forty per cent of admissions were for one week or less (2.3% of patients died on the day of admission) and 15% were for more than three weeks. Bed occupancy varied between 99.7 and 48.9%. Responses were received from 74% of the 326 hospital support services, although again many questions were answered by less than half of those eligible to do so. Details of 37,194 new patients were reported (5.9% did not have cancer, although there was a wide range between services). Patients typically had four contacts with the service, although almost a quarter were single contacts. Three-quarters of the contacts were by a clinical nurse specialist. National estimates suggest that of the 155,000 patients dying of cancer in the UK each year 27,600 (18%) die in a hospice. There are 39,000 new hospice admissions each year and about 100,000 patients have contact with a hospital support service. Overall, the national provision of palliative care is increasing but there are groups who still appear to be missing out on palliative care, especially older people. Increasingly, patients appear to be admitted to a hospice earlier in care and are discharged home.     

A qualitative study assessing mental health issues in two hospices in the UK

This study is a qualitative investigation into the experiences of assessing mental health issues by members of staff from two hospices in the UK. Nine individual interviews were held with doctors and nurses from the two hospices using semi-structured interviews. The research method used was grounded theory and the emerging data were analysed using the computer software Atlas.ti. The analysis was conducted around the four main research questions: 'How is mental health assessed in the hospices?', 'What are the staff members' feelings about doing these assessments?', 'How does assessment information inform clinical practice?' and 'What are the perceived training needs of staff?' The findings show that mental health is, to some extent, being assessed within these two hospices; however, no formal assessment strategy is in place. The majority of staff interviewed had very limited experience and/or training in the field of mental health and expressed a lack of confidence when dealing with mental health-related issues. A list of training needs has been identified. On the basis of these findings, recommendations have been made to improve the assessment procedures currently used within these two hospices.     

Mental health training and the hospice community: A national survey

This article summarizes a national survey of the hospice community. Respondents provided detailed information in the following areas: (a) What formal mental health training is provided for staff members? (b) Who conducts this training? (c) What areas are covered and where would more training be useful? (d) How is the training conducted—what formats and teaching materials are used? and (e) How much training do staff members receive?

The results of the survey indicate that the hospice community is making a concerted effort to meet the mental health training needs of its paid staff members and volunteers. However, more than half of the hospices surveyed expressed a need for further training in 26 of the 33 issues and skills covered in the questionnaire, and many reported a need for a more systematic and comprehensive mental health curriculum. The findings point to several areas of particularly great need and provide a basis for the development of future mental health training in the hospice community.     

Mental health training and the hospice community: A national survey

Abstract

This article summarizes a national survey of the hospice community. Respondents provided detailed information in the following areas: (a) What formal mental health training is provided for staff members? (b) Who conducts this training? (c) What areas are covered and where would more training be useful? (d) How is the training conducted—what formats and teaching materials are used? and (e) How much training do staff members receive?

The results of the survey indicate that the hospice community is making a concerted effort to meet the mental health training needs of its paid staff members and volunteers. However, more than half of the hospices surveyed expressed a need for further training in 26 of the 33 issues and skills covered in the questionnaire, and many reported a need for a more systematic and comprehensive mental health curriculum. The findings point to several areas of particularly great need and provide a basis for the development of future mental health training in the hospice community.     

A survey of methicillin-resistant Staphylococcus aureus (MRSA) management in hospices/palliative care units

A questionnaire-based survey was performed of the protocols adopted by specialist palliative care in-patient units in southern England for the management of methicillin-resistant Staphylococcus aureus (MRSA). An 87% response rate was obtained from a total of 63 units. Ninety-five percent of the responding units had a protocol for MRSA management, but staff training in its contents was provided in only 59%. Some form of screening for MRSA was carried out by 13% of units. Infection control precautions taken varied between units and according to whether a patient was colonized or infected with MRSA. Although 86% carried out some form of isolation of patients with known or suspected MRSA infection, only 46% restricted their activity within the unit. However, 41 % of respondents felt that protocols to eradicate MRSA colonization were not relevant to hospices. The impact of MRSA infection or colonization on a palliative care population in terms of quality of life and morbidity remains unknown.     

A survey of the views of palliative care healthcare professionals towards referring cancer patients to participate in randomized controlled trials in palliative care

Goals of work  Clinical trials in palliative care (PC), especially randomised controlled trials (RCTs), are notoriously difficult to complete. One perceived challenge is gatekeeping, the reluctance of some healthcare professionals (HCPs) to refer patients for research studies. This study aimed to identify the extent of gatekeeping from palliative RCTs. Materials and methods  An anonymous questionnaire was sent to 597 HCPs with an interest in PC in Australia and New Zealand to assess their willingness to refer patients for RCTs. Respondents considered key issues that might affect their decision, documented willingness to refer to RCTs of increasing complexity in a hypothetical pain situation and documented the degree of patient inconvenience considered acceptable. Demographic data were collected. Main results  One hundred ninety-eight questionnaires were returned (33%), 122 from doctors and 76 from other HCPs. Very few were willing to refer to complicated studies involving many extra tests and/or hospital visits. Non-medical HCPs were less interested than doctors in studies that involved randomisation, placebo controls or double-blind methodology. The majority would refer patients for non-pharmacological studies, but were less willing to refer for pharmacological studies with possible side effects. Non-medical HCPs were less willing than doctors to refer to trials that involved patient inconvenience. Two factors predicted for greater willingness to refer: previous research experience and male gender. Conclusion  The survey revealed an unwillingness on the part of many HCPs to refer patients for RCTs in PC. It identifies trial-related factors that may encourage or discourage referral. Gatekeeping has the potential block recruitment and introduce a selection bias.     

The current status of bereavement follow-up in hospice and palliative care in Japan

In order to explore the implementation of bereavement care in hospice/palliative care settings in Japan, a self-administered questionnaire was sent to all 54 government-approved hospice/palliative care units (PCUs) in May of 1999 (recovery rate 93%). Results showed that bereavement follow-up is performed in 37 institutes (74%) and memorial cards and services are most frequently provided. Memorial cards are provided mainly by nurses, and memorial services involve many health care professionals as well as volunteers. Religious workers tended to be involved in memorial services and social group meetings. Individually oriented interventions such as telephone contacts, personal visits and personal counselling were reportedly used less often. The need for individual-oriented programmes was recognized, and many institutes were considering the expansion of their programmes to include them. However, the difficulties of implementing such care at hospice/PCUs were also raised. Two socio-cultural factors possibly affecting bereavement care in Japan, namely, the roles of family and religious (Buddhist) ceremonies were discussed. It was pointed out that the spirit of bereavement care may be embodied in existing religious ceremonies. We conclude that it is necessary to develop bereavement care programmes based on common, basic hospice care tenets while making full use of existing local resources and taking into account regional values.     

Systematic review of the problems and issues of accessing specialist palliative care by patients, carers and health and social care professionals

OBJECTIVES: To determine the problems and issues of accessing specialist palliative care by patients, informal carers and health and social care professionals involved in their care in primary and secondary care settings. DATA SOURCES: Eleven electronic databases (medical, health-related and social science) were searched from the beginning of 1997 to October 2003. Palliative Medicine (January 1997-October 2003) was also hand-searched. STUDY SELECTION: Systematic search for studies, reports and policy papers written in English. DATA EXTRACTION: Included papers were data-extracted and the quality of each included study was assessed using 10 questions on a 40-point scale. RESULTS: The search resulted in 9921 hits. Two hundred and seven papers were directly concerned with symptoms or issues of access, referral or barriers and obstacles to receiving palliative care. Only 40 (19%) papers met the inclusion criteria. Several barriers to access and referral to palliative care were identified including lack of knowledge and education amongst health and social care professionals, and a lack of standardized referral criteria. Some groups of people failed to receive timely referrals e.g., those from minority ethnic communities, older people and patients with nonmalignant conditions as well as people that are socially excluded e.g., homeless people. CONCLUSIONS: There is a need to improve education and knowledge about specialist palliative care and hospice care amongst health and social care professionals, patients and carers. Standardized referral criteria need to be developed. Further work is also needed to assess the needs of those not currently accessing palliative care services.     

Drugs given by a syringe driver: a prospective multicentre survey of palliative care services in the UK

The use of a syringe driver to administer drugs by continuous subcutaneous infusion is common practice in the UK. Over time, drug combinations used in a syringe driver are likely to change and the aim of this survey was to obtain a more recent snapshot of practice. On four separate days, at two-week intervals, a questionnaire was completed for every syringe driver in use by 15 palliative care services. Of 336 syringe drivers, the majority contained either two or three drugs, but one-fifth contained only one drug. The median (range) volume of the infusions was 15 (9.5-48) mL, and duration of infusion was generally 24 hours. Only one combination was reported as visually incompatible, and there were 13 site reactions (4% of total). Laboratory physical and chemical compatibility data are available for less than half of the most frequently used combinations.     

Responses of primary health care professionals to UK national guidelines on the management and referral of women with breast conditions

Rationale, aims and objectives To explore the responses of primary health care professionals to guidelines in general, and to the UK national guidelines on the management and referral of women with breast conditions in particular. Methods Qualitative study using practice‐based, semistructured group discussions with primary health care professionals. All practices were involved in a study evaluating the effect of the national breast symptom management guidelines on clinical practice. Discussion groups were conducted in the practice; fifteen of the 34 study practices were audio‐taped. Groups comprised the available partners and practice nurses at each practice. All members of each group were well known to one another. There was good attendance by all doctors, with 75% of male partners and 90% of female partners present at the meetings. Of the practice nurses 51% attended. In all, 86 professionals attended the meetings. Results A number of areas for comment arose consistently in each discussion. Guidelines in general were welcomed, although there was more support for evidence‐based than consensus‐based guidelines. The breast lump guideline was also welcomed, participants commenting that it was concordant with current practice. The breast pain guideline was more contentious, participants reflecting that it recommended more primary care management than was usual, and fell outside the experience and confidence of doctors or the expectations of patients. Participants felt it did not incorporate psychosocial factors into recommended management, despite this being an important part of primary care management. Conclusions There are concerns about consensus guidelines and doubts about the applicability of the breast pain guideline in this complex management area. The failure of these guidelines to address patient anxiety may limit their implementation.     

Creative forces for retention of home health aides in hospice and palliative care

Qualities of character and physical capability are essential for the success of a home health aide. The aide needs to be prepared by the organization to provide expert care in various home settings, with patients and families whose personalities, lifestyles, ages, cultural background, and socioeconomic status may be vastly different from those the aide has experienced. This article explores the history of home health aide services as a backdrop to understanding the creative forces in recruitment and education methods, as well as support and team efforts that contribute to having successful careers as aides in the home care setting.