A qualitative study of older people''s views of out-of-hours services.

BACKGROUND: Out-of-hours primary care services continues to change with the growth of general practitioner (GP) co-operatives and the more recent development of NHS Direct. While older people are more likely to have increased needs for such services, evidence suggests that they are reluctant users of GP out-of-hours services. AIM: To explore older people's experiences and perceptions of different models of general practice out-of-hours services. DESIGN OF STUDY: Focus group methodology, with qualitative data analysis undertaken using a grounded theory (Framework) approach. SETTING: Thirty people aged between 65 and 81 years old from community groups based in south east London. METHOD: Four focus groups were held, each with between five and 12 participants. Each focus group session lasted 90 minutes and was audiotape-recorded with the permission of the participants. The tapes were transcribed verbatim. RESULTS: Two related themes were identified. First, attitudes to health and healthcare professionals with reference to the use of health services prior to the establishment of the NHS, a stoical attitude towards health, and not wanting to make excessive demands on health services. Second, the experience of out-of-hours care and the perceived barriers to its use, including the use of the telephone and travelling at night. Participants preferred contact with a familiar doctor and were distrustful of telephone advice, particularly from nurses. CONCLUSIONS: Older people appear reluctant to make use of out-of-hours services and are critical of the trend away from out-of-hours care being delivered by a familiar GP. With increasing numbers of older people in the population it is important to consider steps to address their reluctance to use out-of-hours and telephone advice services, particularly those based around less personal models of care.     

Accessing out-of-hours care following implementation of the GMS contract: an observational study.

BACKGROUND: There is widespread concern that the quality of out-of-hours primary care for patients with complex needs may be at risk now that the new general medical services contract (GMS) has been implemented. AIM: To explore changes in the use of out-of-hours services around the time of implementation of the new contract for patients with complex needs, using patients with cancer as an example. DESIGN OF STUDY: Longitudinal observational study. SETTING: Out-of-hours primary care provider covering Devon (adult population 900,000), UK. METHOD: Two, 1-year periods corresponding to pre- (April 2003 to March 2004) and post-contract implementation (October 2004 to September 2005) were sampled. Call rates per 1000 of the adult population (age>or=16 years) were calculated for all calls (any cause) and cancer-related calls. Anonymised outcome and process measures data were extracted. RESULTS: Although overall call rates per 1000 population had increased by 26% (185 pre-contract to 233 post-contract), the proportion of cancer-related calls remained relatively constant (2.08% versus 1.96%). Around half (56%) of these callers had advanced cancer needs (including palliative care). By post-contract, the time taken to triage had significantly increased (P<0.001). Although the proportions admitted to hospital or receiving a home visit remained constant, calls where a special message was sent by the out-of-hours clinician to the in-hours team had decreased (P<0.001). CONCLUSION: The demand for out-of-hours care for patients with cancer did not alter disproportionately after implementation of the contract. While potential quality indicators (for example, hospital admissions, home visiting rates) remained constant, potentially adverse changes to triage time and communication between out-of-hours and in-hours clinicians were observed. Quality standards and provider databases require further refinement to capture elements of care relevant to patients with complex needs.     

Streamline triage and manage user expectations: lessons from a qualitative study of GP out-of-hours services

Background

Several models of GP out-of-hours provision exist in the UK but there is little detail about their effectiveness to meet users'' needs and expectations.

Aim

To explore users'' needs, expectations, and experiences of out-of-hours care, and to identify proposals for service redesign.

Setting

Service providers in urban (GP cooperative), mixed (hospital based), rural (private) locations in Wales.

Participants

Sixty recent service users or carers (20 in each location).

Method

Semi-structured telephone interviews; thematic analysis.

Results

Users'' concerns were generally consistent across the three different services. Efficiency was a major concern, with repetitive triage procedures and long time delays at various stages in the process being problematic. Access to a doctor when required was also important to users, who perceived an obstructive gatekeeping function of preliminary contacts. Expectations moderated the relationship between user concerns and satisfaction. Where expectations of outcome were unfulfilled, participants reported greater likelihood of reconsulting with the same or alternative services for the same illness episode. Accurate expectations concerning contacts with the next administrative, nursing, or medical staff professional were managed by appropriate information provision.

Conclusion

Users require more streamlined and flexible triage systems. Their expectations need to be understood and incorporated into how services advise and provide services for users, and actively managed to meet the aims of both enhancing satisfaction and enabling users to cope with their condition. Better information and education about services are needed if users are to derive the greatest benefit and satisfaction. This may influence choices about using the most appropriate forms of 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.     

Supporting South Asian carers and those they care for: the role of the primary health care team.

BACKGROUND: Demographic and socioeconomic changes have increased policy interest in informal carers. However, despite the multicultural nature of British society, most research in this field has been in majority communities. AIM: To explore the role of the primary health care team (PHCT) in supporting carers from British South Asian communities. DESIGN OF STUDY: Qualitative study. SETTING: Four South Asian communities in Leicestershire and West Yorkshire. METHODS: Focus groups and in-depth interviews were used to assess male and female carers, supported by a literature review. RESULTS: Failure to recognise carers' needs, gaps in service provision, and communication and language issues compromised carers' ability to care. While some carers were positive about the PHCT role, the main weaknesses concerned poor consultation, PHCT attitudes towards carers, and access to appropriate services. CONCLUSION: South Asian carers' experiences largely parallel those of others, but there are some issues that are distinct, namely, language and communication barriers, culturally inappropriate services, and implicit or explicit racism. The multi-ethnic nature of Great Britain requires that professional practice enhances the ability of minority ethnic communities to provide informal care. The findings underline the important role of the PHCT in ensuring that carers' needs are taken seriously and that appropriate services reach them.     

Integrating palliative care within acute stroke services: developing a programme theory of patient and family needs,preferences and staff perspectives

Background

Palliative care should be integrated early into the care trajectories of people with life threatening illness such as stroke. However published guidance focuses primarily on the end of life, and there is a gap in the evidence about how the palliative care needs of acute stroke patients and families should be addressed. Synthesising data across a programme of related studies, this paper presents an explanatory framework for the integration of palliative and acute stroke care.

Methods

Data from a survey (n=191) of patient-reported palliative care needs and interviews (n=53) exploring experiences with patients and family members were explored in group interviews with 29 staff from 3 United Kingdom stroke services. A realist approach to theory building was used, constructed around the mechanisms that characterise integration, their impacts, and mediating, contextual influences.

Results

The framework includes two cognitive mechanisms (the legitimacy of palliative care and individual capacity), and behavioural mechanisms (engaging with family; the timing of intervention; working with complexity; and the recognition of dying) through which staff integrate palliative and stroke care. A range of clinical (whether patients are being ‘actively treated’, and prognostic uncertainty) and service (leadership, specialty status and neurological focus) factors appear to influence how palliative care needs are attended to.

Conclusions

Our framework is the first, empirical explanation of the integration of palliative and acute stroke care. The specification in the framework of factors that mediate integration can inform service development to improve the outcomes and experiences of patients and families.

     

Palliative care in advanced dementia; A mixed methods approach for the development of a complex intervention

Background  

There is increasing interest in improving the quality of care that patients with advanced dementia receive when they are dying. Our understanding of the palliative care needs of these patients and the natural history of advanced disease is limited. Many people with advanced dementia have unplanned emergency admissions to the acute hospital; this is a critical event: half will die within 6 months. These patients have complex needs but often lack capacity to express their wishes. Often carers are expected to make decisions. Advance care planning discussions are rarely performed, despite potential benefits such more consistent supportive healthcare, a reduction in emergency admissions to the acute hospital and better resolution of carer bereavement.     

Coordination of care for individuals with advanced progressive conditions: a multi-site ethnographic and serial interview study

Background

Coordination of care for individuals with advanced progressive conditions is frequently poor.

Aim

To identify how care is coordinated in generalist settings for individuals with advanced progressive conditions in the last year of life.

Design and setting

A mixed methods study of three UK generalist clinical settings producing three parallel case studies: an acute admissions unit in a regional hospital, a large general practice, and a respiratory outpatient service.

Method

Ethnographic observations in each setting, followed by serial interviews of patients with advanced progressive conditions and their family carers in the community. A spectrum of clinicians and healthcare workers were also interviewed.

Results

Ethnographic observations were conducted for 22 weeks. A total of 56 patients, 25 family carers and 17 clinicians yielded 198 interviews. Very few participants had been identified for a palliative approach. Rapid throughput of hospital patients and time pressures in primary care hindered identification of palliative care needs. Lack of care coordination was evident during emergency admissions and discharges. Patient, families, and professionals identified multiple problems relating to lack of information, communication, and collaboration at care transitions. Family carers or specialist nurses, where present, usually acted as the main care coordinators.

Conclusion

Care is poorly coordinated in generalist settings for patients in the last year of life, although those with cancer have better coordinated care than other patients. A model to improve coordination of care for all individuals approaching the end of life must ensure that patients are identified in a timely way, so that they can be assessed and their care planned accordingly.     

Exploring the community pharmacist's role in palliative care: focusing on the person not just the prescription

Objective

Changes in health care provision have led to an emphasis on providing end of life care within the home. community pharmacists are well positioned to provide services to community-based palliative care patients and carers.

Methods

A multiple qualitative case study design was adopted. A total of 16 focus groups and 19 interviews with pharmacists, nurses, general practitioners and carers were undertaken across metropolitan and regional settings in Western Australia, New South Wales, Queensland and Victoria. Data were analysed thematically using a framework that allowed similarities and differences across stakeholder groups and locations to be examined and compared.

Results

Three main themes emerged: effective communication; challenges to effective communication; and: towards best practice, which comprised two themes: community pharmacists’ skills and community pharmacists’ needs.

Discussion

A key component of the provision of palliative care was having effective communication skills. Although community pharmacists saw an opportunity to provide interpersonal support, they suggested that they would need to develop more effective communication skills to fulfil this role.

Conclusion

There is clear need for continuing professional development in this area - particularly in communicating effectively and managing strong emotions.

Practice implications

Community pharmacists are willing to support palliative care patients and carers but need education, support and resources.     

Problems with a ‘target’ approach to access in primary care: a qualitative study

We report an analysis of the qualitative phase of a study of patients' and carers' views of primary care services, focusing on their experiences of access to face-to-face general practitioner (GP) consultations during the period when new access policies were being implemented. Practices interpreted the new policy in various ways; restricted interpretations, including restriction of access to telephone booking, could cause distress to patients. Patients and carers welcomed flexible interpretations of the policy that offered choice, such as a choice of GP, or of booking in advance.     

Challenges for co-morbid chronic illness care and policy in Australia: a qualitative study

Background

In response to the escalating burden of chronic illness in Australia, recent health policies have emphasised the promotion of patient self-management and better preventive care. A notable omission from these policies is the acknowledgment that patients with chronic illness tend to have co-morbid conditions. Our objectives were: to identify the common challenges co-morbidity poses to patients and carers in their experiences of self-management; to detail the views and perceptions of health professionals about these challenges; and to discuss policy options to improve health care for people with co-morbid chronic illness. The method included semi-structured interviews and focus groups with 129 purposively sampled participants. Participants were people with Type 2 diabetes, chronic obstructive pulmonary disease and/or chronic heart failure as well as carers and health care professionals. Content analysis of the interview data was conducted using NVivo7 software.

Results

Patients and their carers found co-morbidity influenced their capacity to manage chronic illness in three ways. First, co-morbidity created barriers to patients acting on risk factors; second, it complicated the process of recognising the early symptoms of deterioration of each condition, and third, it complicated their capacity to manage medication.

Conclusion

Findings highlight challenges that patients with multiple chronic conditions face in relation to preventive care and self-management. Future clinical policy initiatives need to move away from single illness orientation toward strategies that meet the needs of people with co-morbid conditions and strengthen their capacity to self-manage. These patients will benefit directly from specialised education and services that cater to the needs of people with clusters of co-morbidities.

     

The transition experience of rural older persons with advanced cancer and their families: a grounded theory study

Background

Transitions often occur suddenly and can be traumatic to both patients with advanced disease and their families. The purpose of this study was to explore the transition experience of older rural persons with advanced cancer and their families from the perspective of palliative home care patients, bereaved family caregivers, and health care professionals. The specific aims were to: (1) describe the experience of significant transitions experienced by older rural persons who were receiving palliative home care and their families and (2) develop a substantive theory of transitions in this population.

Methods

Using a grounded theory approach, 27 open-ended individual audio-taped interviews were conducted with six older rural persons with advanced cancer and 10 bereaved family caregivers. Four focus group interviews were conducted with 12 palliative care health care professionals. All interviews were transcribed verbatim, coded, and analyzed using Charmaz's constructivist grounded theory approach.

Results

Within a rural context of isolation, lack of information and limited accessibility to services, and values of individuality and community connectedness, older rural palliative patients and their families experienced multiple complex transitions in environment, roles/relationships, activities of daily living, and physical and mental health. Transitions disrupted the lives of palliative patients and their caregivers, resulting in distress and uncertainty. Rural palliative patients and their families adapted to transitions through the processes of "Navigating Unknown Waters". This tentative theory includes processes of coming to terms with their situation, connecting, and redefining normal. Timely communication, provision of information and support networks facilitated the processes.

Conclusion

The emerging theory provides a foundation for future research. Significant transitions identified in this study may serve as a focus for improving delivery of palliative and end of life care in rural areas. Improved understanding of the transitions experienced by advanced cancer palliative care patients and their families, as well as the psychological processes involved in adapting to the transitions, will help health care providers address the unique needs of this vulnerable population.     

Primary care support for tackling obesity: a qualitative study of the perceptions of obese patients

BACKGROUND: Obesity has become a major public health issue and there is concern about the response of health services to patients who are obese. The perceptions of obese patients using primary care services have not been studied in depth. AIM: To explore obese patients' experiences and perceptions of support in primary care. DESIGN OF STUDY: Qualitative study with semi-structured interviews conducted in participants' homes. SETTING: Five general practices contrasting in socioeconomic populations in Sheffield. METHOD: Purposive sampling and semi-structured interviewing of 28 patients with a diverse range of ages, backgrounds, levels of obesity and experiences of primary care services. RESULTS: Participants typically felt reluctance when presenting with concerns about weight and ambivalence about the services received. They also perceived there to be ambivalence and a lack of resources on the part of the health services. Participants showed a strong sense of personal responsibility about their condition and stigma-related cognitions were common. These contributed to their ambivalence about using services and their sensitivity to its features. Good relationships with primary care professionals and more intensive support partly ameliorated these effects. CONCLUSION: The challenges of improving access to and quality of primary care support in tackling obesity are made more complex by patients' ambivalence and other effects of the stigma associated with obesity.     

Experiences of patients,family and professional caregivers with Integrated Palliative Care in Europe: protocol for an international,multicenter, prospective,mixed method study

Background

The number of people living with advanced cancer and chronic disease has increased worldwide. Many of these patients could benefit from palliative care, focusing on optimising the quality of life of patients and their families facing problems resulting from life-threatening diseases. However, fragmentation and discontinuity of palliative care services often result in suboptimal palliative care. In order to overcome these problems, models using an integrated care approach are increasingly advocated in palliative care services. Although several models and definitions of Integrated Palliative Care (IPC) have been developed, the effects of integrated care are still under-investigated. Knowledge of the key components that constitute successful palliative care integration is still lacking. This mixed methods study will examine the experiences of patients, family caregivers and professional caregivers in order to provide insight into the mechanisms that constitute successful palliative care integration.

Methods/Design

Prospective multiple embedded case study. Three to five integrated palliative care initiatives will be selected in Belgium, Germany, Hungary, The Netherlands and the United Kingdom. Data collection will involve Social Network Analysis (SNA), a patient diary, semi-structured interviews, and questionnaires: Palliative care Outcome Scale (POS), Canhelp Lite, Caregiver Reaction Assessment (CRA). Patients and family caregivers will be followed in 4 consecutive contact moments over 3 months. The diary will be kept weekly by patients. One focus group per initiative will be conducted with professional caregivers. Interviews and focus groups will be tape recorded, transcribed and qualitatively analysed using NVivo 10. SPSS Statistics 20 will be used for statistical analysis.

Discussion

This study will provide valuable knowledge about barriers, opportunities and good practices in palliative care integration in the selected initiatives across countries. This knowledge can be used in the benchmark of integrated palliative care initiatives across Europe. It will add to the scientific evidence for IPC services internationally and will contribute to improvements in the quality of care and the quality of living and dying of severely ill patients and their relatives in Europe.

     

Enhancing integrated palliative care: what models are appropriate? A cross-case analysis

Background

Effective integration between hospices, palliative care services and other local health care services to support patients with palliative care needs is an important international priority. A previous model suggests that integration involves a cumulative stepped process of engagement with other organisations labelled as ‘support, supplant or supplement’, but the extent to which this model currently applies in the United Kingdom is unknown. We aimed to investigate accounts of hospice integration with local health care providers, using the framework provided by the model, to determine how service users and healthcare professionals perceived palliative care services and the extent of integration experienced.

Methods

Longitudinal organisational case study methods were employed using qualitative serial interviews (interval 3 months) with patients and family carers focusing on how services responded to their needs; and group interviews with health professionals. Data were audio-recorded, transcribed verbatim, and analysed by qualitative content analysis and combined across data sources.

Results

The study focused on four hospices in northern England, including 34 patients (diagnosis: 17 cancer, 10 COPD, 7 heart failure), 65% female, mean age 66 (range 44–89), 13 family carers of these patients (48% partners), and 23 health care professionals. While some care fell short of expectations, all patients reported high levels of satisfaction and valued continuity of care and efficient information sharing. All hospices supported and supplemented local providers, with three hospices also supplanting local provision by providing in-patient facilities.

Conclusion

UK hospices predominantly operate in ways that support and supplement other providers. In addition, some also supplant local services, taking over direct responsibility and funding in-patient care. They all contributed to integration with local services, with greater blurring of boundaries than defined by the original model. Integrated care offers the necessary flexibility to respond to changes in patient needs, however, constraints from funding drivers and a lack of clear responsibilities in the UK can result in shortfalls in optimal service delivery. Integrating hospice care with local healthcare services can help to address demographic changes, predominantly more frail older people, and disease factors, including the needs of those with non-malignant conditions. This model, tested in the UK, could serve as an example for other countries.

     

Patients, prisoners, or people? Women prisoners' experiences of primary care in prison: a qualitative study

BACKGROUND: The development of primary care services within prisons has been central to improvements in the provision of health care in this setting over the past decade. Despite national imperatives to involve patients in the development of services and numerous policy initiatives, there has been no systematic evaluation of changes in the delivery of primary care and little published evidence of consultation with prisoners. AIM: To explore women prisoners' experiences of primary healthcare provision in prison. DESIGN OF STUDY: Qualitative study using focus groups and interviews. SETTING: Two women's prisons in southern England. METHOD: Six focus groups involving 37 women were conducted, as well as 12 semi-structured individual interviews. Focus groups and interviews were recorded, transcribed, and analysed thematically. RESULTS: Women prisoners' perceptions of the quality of prison health care were mixed. There were accounts of good-quality care where practitioners were regarded as knowledgeable and respectful, but many perceived that the quality of care was poor. They complained about difficulties accessing care or medication, disrespectful treatment, and breaches of confidentiality by practitioners. They voiced the belief that staff were less qualified and competent than their counterparts in the community. CONCLUSION: The prison environment presents unique challenges to those providing health care, and much work has been done recently on modernising prison health care and improving professional standards of practice. However, the accounts of women prisoners in this study suggest that there is a gap between patient experience and policy aspirations.     

From support to boundary: A qualitative study of the border between self-care and professional care

Objective

While healthcare systems globally are promoting self-care, patients’ perceptions of the policy shift remain relatively unexplored. Our qualitative study explored how organisation of care shaped patients’ perceptions and experiences of self-care in dealing with their respiratory illnesses.

Methods

We recruited 31 people, representing a range of ages and respiratory conditions and generated data using illness diaries, telephone interviews and focus group discussions. Data were transcribed, analysed and triangulated using the framework approach.

Results

Patients were aware of the increasing focus on self-care, but felt that the term was incongruous as it described what they were already doing. While many respondents appreciated increased clinical responsibility some felt ‘abandoned’ by professionals. To be active partners in care, they needed flexible access to trusted healthcare professionals who respected patients’ knowledge about their condition and preferences for management.

Conclusion

The shift to self-care needs to be underpinned by a whole system change. Professionals need communication skills to engage with patients as partners in care, working within systems that offer flexible access to supportive care.

Practice implications

Systems of care for people with long-term conditions need to ensure flexible access between self-care and professional support. Simplification of systems, clear sign-posting and co-ordination of individual patient care by a key trusted professional are essential.