Out-of-hours palliative care: a qualitative study of cancer patients, carers and professionals

BACKGROUND: New out-of-hours healthcare services in the UK are intended to offer simple, convenient access and effective triage. They may be unsatisfactory for patients with complex needs, where continuity of care is important. AIM: To explore the experiences and perceptions of out-of-hours care of patients with advanced cancer, and with their informal and professional carers. DESIGN OF STUDY: Qualitative, community-based study using in-depth interviews, focus groups and telephone interviews. SETTING: Urban, semi-urban and rural communities in three areas of Scotland. METHOD: Interviews with 36 patients with advanced cancer who had recently used out-of-hours services, and/or their carers, with eight focus groups with patients and carers and 50 telephone interviews with the patient's GP and other key professionals. RESULTS: Patients and carers had difficulty deciding whether to call out-of-hours services, due to anxiety about the legitimacy of need, reluctance to bother the doctor, and perceptions of triage as blocking access to care and out-of-hours care as impersonal. Positive experiences related to effective planning, particularly transfer of information, and empathic responses from staff. Professionals expressed concern about delivering good palliative care within the constraints of a generic acute service, and problems accessing other health and social care services. CONCLUSIONS: Service configuration and access to care is based predominantly on acute illness situations and biomedical criteria. These do not take account of the complex needs associated with palliative and end-of-life care. Specific arrangements are needed to ensure that appropriately resourced and integrated out-of-hours care is made accessible to such patient groups.     

The impact of NHS Direct on the demand for out-of-hours primary and emergency care.

In order to assess the impact of NHS Direct on out-of-hours primary and emergency care, we sought data on service demand from all GP cooperatives, ambulance services and emergency departments in England, Wales and Scotland. We analysed the impact of NHS Direct on demand, taking advantage of the fact that the service was introduced in waves over a period of 2 years. The results showed that the introduction of NHS Direct was associated with a reduction in calls to GP cooperatives, but with no evident effect on emergency services.     

General practice out-of-hours service, variations in use and equality in access to a doctor: a cross-sectional study.

BACKGROUND: There is increasing dissatisfaction among general practitioners (GPs) with their 24 hour commitment despite the demand for GP services outside ordinary working hours. The creation of out-of-hours co-operatives has been welcomed by participating GPs and their families and patient satisfaction is generally high. However, there have been concerns about the lack of patient consultation in their development and on the quality of care provided. OBJECTIVES: To examine geographical variation in the rates of out-of-hours calls and to see if there is any systematic variation in how the co-operative that covers the area responds to calls. DESIGN OF STUDY: A secondary data analysis of 110,357 calls received by the co-operative during the second year of its operation. SETTING: A co-operative with four centres providing out-of-hours care for one mostly rural Health Board in Northern Ireland. METHOD: Deprivation score and mortality and long-term illness ratios provided indicators of need at an area level. Proximity to the four co-operative centres was measured as the distance in kilometres and estimated travel time (in minutes) along the road network. RESULTS: Out-of-hours call ratios were proportional to the area deprivation score and proximity to the co-operative centres, though not to area indicators of ill health. Older patients were more likely to be seen by the GP and females over the age of 15 years were more likely to receive telephone advice only (adjusted odds ratio [OR] = 0.785, 95% confidence intervals [CI] 0.756-0.816, P < 0.001). Each kilometre from the centres reduced the likelihood of seeing the GP (OR = 0.978, 95% CI = 0.976-0.979, P < 0.001). Even after controlling for potential confounders a large difference remained in how centres responded to calls. CONCLUSIONS: It is not certain whether these inequalities in services delivery represent inequity as the apposite level or type of response cannot be determined until more is known about the appropriateness of the demand for out-of-hours medical care.     

Providing palliative care in primary care: how satisfied are GPs and district nurses with current out-of-hours arrangements?

The complex needs of palliative care patients require an informed, expert, and swift response from out-of-hours general medical services, particularly if hospital admission is to be avoided. Few general practitioners (GPs) reported routinely handing over information on their palliative care patients, particularly to GP co-operatives. District nurses and inner-city GPs were least satisfied with aspects of out-of-hours care. Most responders wanted 24-hour availability of specialist palliative care. This indicates a need to develop and evaluate out-of-hours palliative care procedures and protocols, particularly for GP co-operatives, and to improve inter-agency collaboration.     

Addressing the problems associated with general practitioners'' workload in nursing and residential homes: findings from a qualitative study.

BACKGROUND: Caring for older people in residential and nursing homes makes major demands on general practitioners (GPs). AIM: To investigate the perceptions and experiences of home managers and GPs of the provision of general medical services for older residents. DESIGN OF STUDY: In-depth qualitative study. SETTING: Forty-two nursing and residential homes in five locations in England, interviewing home managers and eight of their residents' GPs. METHOD: Semi-structured face-to-face and telephone interviews. RESULTS: Most homes endorse principles of continuity of care and patient choice. Although many homes therefore deal with a large number of GPs, with the inherent difficulties of coordinating care and duplication of GP effort, limitations in residents' choice of GP result in the majority of residents in many homes being registered with only one or two practices. Contracts between homes and GPs may provide opportunities for improving medical care but do not guarantee additional services and have implications for patient choice and residents' fees. Visits on request form the bulk of GPs' workload in homes but can be hard to obtain for residents and may not be appropriate. Regular weekly surgeries are preferred by many homes but may have additional workload implications for GPs. CONCLUSION: The assumption that patient choice and continuity in medical care are paramount for older people in nursing and residential homes is questioned. While recognition of the additional workload for GPs working in these settings is necessary, this should be accompanied by additional NHS remuneration. Further research is urgently required to identify which models of GP provision would most benefit both residents and GPs.     

Patient involvement in primary care mental health: a focus group study

BACKGROUND: Patient involvement in health care is a strong political driver in the NHS. However in spite of policy prominence, there has been only limited previous work exploring patient involvement for people with serious mental illness. AIM: To describe the views on, potential for, and types of patient involvement in primary care from the perspectives of primary care health professionals and patients with serious mental illness. DESIGN OF STUDY: Qualitative study consisting of six patient, six health professional and six combined focus groups between May 2002 and January 2003. SETTING: Six primary care trusts in the West Midlands, England. METHOD: Forty-five patients with serious mental illness, 39 GPs, and eight practice nurses participated in a series of 18 focus groups. All focus groups were audiotaped and fully transcribed. Nvivo was used to manage data more effectively. RESULTS: Most patients felt that only other people with lived experience of mental illness could understand what they were going through. This experience could be used to help others navigate the health- and social-care systems, give advice about medication, and offer support at times of crisis. Many patients also saw paid employment within primary care as a way of addressing issues of poverty and social exclusion. Health professionals were, however, more reluctant to see patients as partners, be it in the consultation or in service delivery. CONCLUSIONS: Meaningful change in patient involvement requires commitment and belief from primary care practitioners that the views and experiences of people with serious mental illness are valid and valuable.     

Council tax valuation bands and contacts with a GP out-of-hours service.

UK GPs are no longer responsible for the organisation of out-of-hours care for their patients, but resources remains capitation-based. This cross-sectional study tests whether council tax valuation bands can predict the demand for such services. All out-of-hours contacts made by patients in North Wiltshire over 4 months were classified by council tax band; frequencies compared with official population statistics. Council tax band predicts out-of-hours GP workload irrespective of age and sex: the more modest the home, the higher the GP contact rate. It may prove more difficult to sustain out-of-hours services in deprived parts of the UK.     

"Tu" or "Vous?" A European qualitative study of dignity and communication with older people in health and social care settings

OBJECTIVE: To examine the experiences of communication between older people and health and social care providers in six European countries. METHODS: Focus groups were carried out with groups of older people (91 focus groups, 391 participants), and health and social care professionals (85 focus groups, 424 participants), in order to gain insights into concepts of good communications. Data collection and analysis continued concurrently according to the method of constant comparison. RESULTS: Different styles of communication between professionals and older people were found to be capable of enhancing or jeopardising dignity. The use of appropriate forms of address, listening, giving people choice, including them, respecting their need for privacy and politeness, and making them feel valued emerged as significant ways to maintain older peoples' sense of self-worth and dignity. Despite being aware of good communication practices, health and social care professionals often failed to implement them. Lack of time, staff, resource scarcity, regulation and bureaucracy were cited as barriers, as was a lack of awareness and effort. CONCLUSIONS AND PRACTICE IMPLICATIONS: The findings have important implications for health and social care professionals when they engage with older people.     

Patients evaluate accessibility and nurse telephone consultations in out-of-hours GP care: determinants of a negative evaluation

OBJECTIVE: The shift towards large-scale organization of out-of-hours primary healthcare in different western countries has created an important role for the nurse telephone consultation. We explored the association between negative patient evaluation of nurse telephone consultations and characteristics of patients and GP cooperatives. METHODS: A cross-sectional study using postal patient questionnaires sent to patients receiving a nurse telephone consultation from one of 26 GP cooperatives in the Netherlands. RESULTS: The total response was 49.3% (2583/5239). Negative evaluations were most frequently encountered for the general information received on the GP cooperative (35%). When patients expected a centre consultation or home visit, but only received a nurse telephone consultation, they were more negative about the accessibility (OR 1.7, CI 1.4-2.1) and nurse telephone consultation (OR 4.2, CI 3.2-5.6). In the presence of a special supervising telephone doctor at the cooperative's call centre, nurse telephone consultation was evaluated significantly less negative (OR 0.4, CI 0.2-0.8). CONCLUSION: Expectation of care mode was most strongly associated with a negative evaluation of nurse telephone consultation. The presence of a supervising telephone doctor may lead to a better evaluation of nurse telephone consultations. PRACTICE IMPLICATIONS: More attention should be paid to the provision of patient information on the GP cooperative and discrepancies between the care expected and the care offered.     

Does distance matter? Geographical variation in GP out-of-hours service use: an observational study

BACKGROUND: GP cooperatives are typically based in emergency primary care centres, and patients are frequently required to travel to be seen. Geography is a key determinant of access, but little is known about the extent of geographical variation in the use of out-of-hours services. AIM: To examine the effects of distance and rurality on rates of out-of-hours service use. DESIGN OF STUDY: Geographical analysis based on routinely collected data on telephone calls in June (n=14 482) and December (n=19 747), and area-level data. SETTING: Out-of-hours provider in Devon, England serving nearly 1 million patients. METHOD: Straight-line distance measured patients' proximity to the primary care centre. At area level, rurality was measured by Office for National Statistics Rural and Urban Classification (2004) for output areas, and deprivation by The Index of Multiple Deprivation (2004). RESULTS: Call rates decreased with increasing distance: 172 (95% confidence interval [CI]=170 to 175) for the first (nearest) distance quintile, 162 (95% CI=159 to 165) for the second, and 159 (95% CI=156 to 162) per thousand patients/year for the third quintile. Distance and deprivation predicted call rate. Rates were highest for urban areas and lowest for sparse villages and hamlets. The greatest urban/rural variation was in patients aged 0-4 years. Rates were higher in deprived areas, but the effect of deprivation was more evident in urban than rural areas. CONCLUSION: There is geographical variation in out-of-hours service use. Patients from rural areas have lower call rates, but deprivation appears to be a greater determinant in urban areas. Geographical barriers must be taken into account when planning and delivering services.     

Evaluating a mental health assessment for older people with depressive symptoms in general practice: a randomised controlled trial.

BACKGROUND: There is a lack of evidence on the most effective primary care management of older people with minor depression. AIM: To evaluate a follow-up assessment by the community mental health team (CMHT) for older people with depressive symptoms identified by practice nurses at a health check for people over the age of 75 years. DESIGN OF STUDY: A pragmatic randomised controlled trial. SETTING: A single large general practice in Leicestershire. METHOD: Patients receiving a health check administered by a practice nurse and scoring 5 or more on the 15-item Geriatric Depression Scale (GDS15) were randomised to either follow-up by the CMHT or routine general practitioner (GP) care. The GDS15 score was measured at the subsequent health check 18 months later. RESULTS: Forty-seven patients were randomised to CMHT assessment and 46 to routine GP care. Uptake of the intervention was 72% (n = 34). At the follow-up health check a greater proportion of the control group had improved GDS15 scores (P = 0.08). Following assessment, the CMHT recommended their further involvement in the care of 12 patients and this was authorised by patients' GPs in six cases. CONCLUSIONS: A follow-up mental health assessment by a member of the local CMHT was not effective in improving outcomes for mildly depressed older people. Other than random error possible reasons for this include the length of follow-up and a failure to meet raised expectations among the intervention group. If complex referral procedures do not improve outcomes for this group, then specialist community services should play a more prominent part in the training of practice staff to care for their depressed older patients.     

Apprehensive parents: a qualitative study of parents seeking immediate primary care for their children

Background

Children are more frequent users of out-of-hours primary care than other age groups, although their medical problems are less urgent.

Aim

To gain insight into the health-seeking behaviour of parents who ask for immediate medical attention for their children.

Design of study

Qualitative analysis of interviews and telephone calls.

Setting

A general practice out-of-hours cooperative that caters for approximately 300 000 people in The Netherlands.

Method

A semi-structured interview was conducted with 27 parents who had consulted their own GP or an out-of-hours facility for primary care because they wanted urgent medical attention for their child who was sick. Forty-four telephone calls from parents seeking medical care for a child were analysed.

Results

Recognising symptoms in a child started with the observation of a deviation from the child''s normal appearance or behaviour. Parents decided to contact medical services when they felt they lost control of the situation. Most parents consulted because they wanted to rule out or prevent serious disease, not because of the condition itself; not wanting to take a risk with their child was an important motivation. In an attempt to rule out serious disease at home, parents also attempted diagnostic procedures they had copied from professionals.

Conclusion

Worry of parents and their health-seeking behaviour can be seen as an expression of the central role of risk regulation in modern society. Doctors need to realise their own contribution to the way parents want to rule out serious disease in their children. Improving parents'' knowledge will not solve the problem of inappropriate use of out-of-hours facilities.     

Ageing and mental health in a developing country: who cares? Qualitative studies from Goa, India

BACKGROUND: While there is a growing body of epidemiological evidence on the prevalence of mental illnesses in late-life in developing countries, there is limited data on cultural perceptions of mental illnesses and care arrangement for older people. METHOD: This qualitative study used focus group discussions with older people and key informants to investigate the status of older people and concepts of late-life mental health conditions, particularly dementia and depression, in Goa, India. RESULTS: Vignettes of depression and dementia were widely recognized. However, neither condition was thought to constitute a health condition. Dementia was construed as a normal part of ageing and was not perceived as requiring medical care. Thus, primary health physicians rarely saw this condition in their clinical work, but community health workers frequently recognized individuals with dementia. Depression was a common presentation in primary care, but infrequently diagnosed. Both late-life mental disorders were attributed to abuse, neglect, or lack of love on the part of children towards a parent. There was evidence that the system of family care and support for older persons was less reliable than has been claimed. Care was often conditional upon the child's expectation of inheriting the parent's property. Care for those with dependency needs was almost entirely family-based with little or no formal services. Unsurprisingly, fear for the future, and in particular 'dependency anxiety' was commonplace among older Goans. CONCLUSIONS: There is a need to raise awareness about mental disorders in late-life in the community and among health professionals, and to improve access to appropriate health care for the elderly with mental illness. The study suggests directions for the future development of locally appropriate support services, such as involving the comprehensive network of community health workers.     

A survey of access to medical services in nursing and residential homes in England.

BACKGROUND: Residential and nursing homes make major demands on NHS services. AIM: To investigate patterns of access to medical services for residents in homes for older people. DESIGN OF STUDY: Telephone survey. SETTING: All nursing and dual registered homes and one in four residential homes located in a stratified random sample of 72 English primary care group/trust (PCG/T) areas. METHOD: A structured questionnaire investigating home characteristics, numbers of general practitioners (GPs) or practices per home, homes' policies for registering new residents with GPs, existence of payments to GPs, GP services provided to homes, and access to specialist medical care. RESULTS: There were wide variations in the numbers of GPs providing services to individual homes; this was not entirely dependent on home size. Eight percent of homes paid local GPs for their services to residents; these were more likely to be nursing homes (33%) than residential homes (odds ratio [OR] = 10.82, [95% CI = 4.48 to 26.13], P<0.001) and larger homes (OR for a ten-bed increase = 1.51 [95% CI = 1.28 to 1.79], P<0.001). Larger homes were more likely to encourage residents to register with a 'home' GP (OR for a ten-bed increase = 1.16 [95% CI = 1.04 to 1.31], P = 0.009). Homes paying local GPs were more likely to receive one or more additional services, over and above GPs' core contractual obligations. Few homes had direct access to specialist clinicians. CONCLUSION: Extensive variations in homes' policies and local GP services raise serious questions about patient choice, levels of GP services and, above all, about equity between residents within homes, between homes and between those in homes and in the community.     

Community and social interventions at a geriatric medical OPD

Health and social services in Ireland tend to be relatively poorly coordinated. Surveys confirm the perceptions of older people with disability that access to and availability of both health and social services are limited. Multi-disciplinary geriatric medical clinics may provide a focus for better utilization and coordination of these services. The purpose of this study was to measure not only the existing service use but also the potential for community and social-care intervention with older people living in the community when using multi-disciplinary geriatric medical clinics. A sample of 60 consecutive patients aged over 65, attending our geriatric medical OPD for the first time, were interviewed using a semistructured questionnaire on the current and potential use of community and social care services. Our service arranged for 229 interventions or referral to services, an average of 3.8 interventions per patient. Ninety-six services were already in place (an average of 1.6 per patient) and 455 services were not applicable, an average of 7.6 per patient. A combined health and social care response is critical to a successful strategy to disease and disability in later life. Although this study describes a relative utilitarian approach to increase community and social care support, it shows there is significant scope to improve uptake of basic community and social care services by a focussed approach to the care needs of older people.     

Urinary incontinence in older people in the community: a neglected problem?

BACKGROUND: The prevalence and impact of urinary incontinence has been investigated much less in older men than in older women. It is suggested that those who perceive that their daily lives are affected should have priority for services. However, many people do not seek medical help, even though they may be severely affected. AIM: To investigate unmet need in relation to the prevalence and impact on everyday life of urinary incontinence in men and women over the age of 65 years. DESIGN OF STUDY: Cross-sectional survey to measure prevalence of urinary incontinence, the impact on people's lives, use of protection, and health services. SETTING: Stratified random sample of 2000 community-living elderly (equal numbers of men and women, aged 65 to 74 years and over 75 years) in 11 general practices in a British city. RESULTS: The response rate was 79%. The overall prevalence of incontinence in the previous month was 31% for women and 23% for men. Women generally had more severe frequency of incontinence and a greater degree of wetness than men. Protection use was greater in women than in men. Only 40% of men and 45% of women with incontinence had accessed health services. Significant predictors of the use of health services were: incontinence reported as a problem, increased frequency of incontinence, and greater degree of wetness. About one-third of people who leaked with severe frequency or who reported that it was a problem had not accessed NHS services for incontinence. CONCLUSIONS: Urinary incontinence is a common problem for older men and women living in the community and can have a deleterious effect on their lives. There is the opportunity to improve the lives of many older people with urinary incontinence, probably by a combination of increased public, patient, and professional awareness that should lead to earlier presentation and initiation of effective care.