Telecare could greatly facilitate chronic disease management in the community, but despite government promotion and positive demonstrations its implementation has been limited. This study aimed to identify factors inhibiting the implementation and integration of telecare systems for chronic disease management in the community.
Large scale comparative study employing qualitative data collection techniques: semi-structured interviews with key informants, task-groups, and workshops; framework analysis of qualitative data informed by Normalization Process Theory. Drawn from telecare services in community and domestic settings in England and Scotland, 221 participants were included, consisting of health professionals and managers; patients and carers; social care professionals and managers; and service suppliers and manufacturers.
Key barriers to telecare integration were uncertainties about coherent and sustainable service and business models; lack of coordination across social and primary care boundaries, lack of financial or other incentives to include telecare within primary care services; a lack of a sense of continuity with previous service provision and self-care work undertaken by patients; and general uncertainty about the adequacy of telecare systems. These problems led to poor integration of policy and practice.
Telecare services may offer a cost effective and safe form of care for some people living with chronic illness. Slow and uneven implementation and integration do not stem from problems of adoption. They result from incomplete understanding of the role of telecare systems and subsequent adaption and embeddedness to context, and uncertainties about the best way to develop, coordinate, and sustain services that assist with chronic disease management. Interventions are therefore needed that (i) reduce uncertainty about the ownership of implementation processes and that lock together health and social care agencies; and (ii) ensure user centred rather than biomedical/service-centred models of care.
People with intellectual disability have a higher prevalence of physical health problems but often experience disparities in accessing health care. In England, a number of legislative changes, policies and recommendations have been introduced to improve health care access for this population. The aim of this qualitative study was to examine the extent to which patients with intellectual disability and their carers experience discrimination or other barriers in accessing health services, and whether health care experiences have improved over the last decade years.
Method and Main Findings
Twenty nine participants (14 patient and carer dyads, and one carer) took part in semi-structured interviews. The interviews were audio-taped and transcribed and analysed using thematic analysis. Eight themes were identified. Half the participants thought that the patient had been treated unfairly or had been discriminated against by health services. There were accounts of negative staff attitudes and behaviour, and failure of services to make reasonable adjustments. Other barriers included problems with communication, and accessing services because of lack of knowledge of local services and service eligibility issues; lack of support and involvement of carers; and language problems in participants from minority ethnic groups. Most participants were able to report at least one example of good practice in health care provision. Suggestions for improving services are presented.
Despite some improvements to services as a result of health policies and recommendations, more progress is required to ensure that health services make reasonable adjustments to reduce both direct and indirect discrimination of people with intellectual disability.
The Spanish National Health System recognised multidisciplinary care as a health priority in 2006, when a national strategy for promoting quality in cancer care was first published. This institutional effort is being implemented on a co-operative basis within the context of Spain's decentralised health care system, so a high degree of variability is to be expected. This study was aimed to explore the views of professionals working with multidisciplinary cancer teams and identify which barriers to effective team work should be considered to ensure implementation of health policy.
Qualitative interview study with semi-structured, one-to-one interviews. Data were examined inductively, using content analysis to generate categories and an explanatory framework. 39 professionals performing their tasks, wholly or in part, in different multidisciplinary cancer teams were interviewed. The breakdown of participants' medical specialisations was as follows: medical oncologists (n = 10); radiation oncologists (n = 8); surgeons (n = 7); pathologists or radiologists (n = 6); oncology nurses (n = 5); and others (n = 3).
Teams could be classified into three models of professional co-operation in multidisciplinary cancer care, namely, advisory committee, formal co-adaptation and integrated care process. The following barriers to implementation were posed: existence of different gateways for the same patient profile; variability in development and use of clinical protocols and guidelines; role of the hospital executive board; outcomes assessment; and the recording and documenting of clinical decisions in a multidisciplinary team setting. All these play a key role in the development of cancer teams and their ability to improve quality of care.
Cancer team development results from an specific adaptation to the hospital environment. Nevertheless, health policy plays an important role in promoting an organisational approach that changes the way in which professionals develop their clinical practice.
To examine views of patients and carers on the process of care for people with head and neck cancer; to assess whether focus groups are useful in this setting; to compare priorities and standards identified with those published by healthcare professionals; and to incorporate the expressed views into existing national standards.
Multicentre study of nine regional focus groups.
Area covered by two regional health authorities.
40 patients who had had head and neck cancer and 18 carers.
Main outcome measures
Views of individuals and groups on standards. Applicability of the method for patients whose appearance and ability to communicate was altered and for recently bereaved carers. Ease of incorporation of views into national and regional standards.
Patients and carers participated in discussions on all the principal questions. Opinions were expressed on waiting times, information available to patients, coordination of care, and crisis management. Professionally derived standards were substantially improved by the incorporation of the views of patients and carers. There were no technical problems in carrying out this study on patients with communication difficulties or altered appearance nor with recently bereaved carers. Occasionally, participants said that the meetings were therapeutic.
Professionally facilitated and analysed focus groups are effective in assessing views of patients with cancer and carers on professionally derived standards for care and can be applied in settings traditionally viewed as difficult. Views expressed by patients and carers are powerful motivators for change in the delivery of cancer care.
What is already known on this topicPatients with head and neck cancer require complex multidisciplinary careProfessional standards exist for much of thisIncorporating the views of patients and carers is often recommendedWhat this study addsFocus groups are an effective and efficient means of assessing views of patients and carers on professionally derived standards of care in oncologyFocus groups can be used to assess the views of patients traditionally viewed as difficult—for instance, those with communication difficulties and altered appearanceSatisfaction with the method among participants is high, even in groups of recently bereaved carers
The integration of mental health and social services for people diagnosed with severe mental illness (SMI) has been a key aspect of attempts to reform mental health services in the UK and aims to minimise user and carer distress and confusion arising from service discontinuities. Community mental health teams (CMHTs) are a key component of UK policy for integrated service delivery, but implementing this policy has raised considerable organisational challenges. The aim of this study was to identify and explore facilitators and barriers perceived to influence continuity of care by health and social care professionals working in and closely associated with CMHTs.
This study employed a survey design utilising in-depth, semi-structured interviews with a proportionate, random sample of 113 health and social care professionals and representatives of voluntary organisations. Participants worked in two NHS Mental Health Trusts in greater London within eight adult CMHTs and their associated acute in-patient wards, six local general practices, and two voluntary organisations.
Team leadership, decision making, and experiences of teamwork support were facilitators for cross boundary and team continuity; face-to-face communication between teams, managers, general practitioners, and the voluntary sector were facilitators for information continuity. Relational, personal, and longitudinal continuity were facilitated in some local areas by workforce stability. Barriers for cross boundary and team continuity were specific leadership styles and models of decision making, blurred professional role boundaries, generic working, and lack of training for role development. Barriers for relational, personal, and longitudinal continuity were created by inadequate staffing levels, high caseloads, and administrative duties that could limit time spent with users. Incompatibility of information technology systems hindered information continuity. Flexible continuity was challenged by the increasingly complex needs of service users.
Substantive challenges exist in harnessing the benefits of integrated CMHT working to deliver continuity of care. Team support should be prioritised in terms of IT provision linked to a review of current models of administrative support. Investment in education and training for role development, leadership, workforce retention, and skills to meet service users' complex needs are recommended.
Objective: To develop a framework for understanding factors affecting the use of patient survey data in quality improvement.
Design: Qualitative interviews with senior health professionals and managers and a review of the literature.
Setting: A quality improvement collaborative in Minnesota, USA involving teams from eight medical groups, focusing on how to use patient survey data to improve patient centred care.
Participants: Eight team leaders (medical, clinical improvement or service quality directors) and six team members (clinical improvement coordinators and managers).
Results: Respondents reported three types of barriers before the collaborative: organisational, professional and data related. Organisational barriers included lack of supporting values for patient centred care, competing priorities, and lack of an effective quality improvement infrastructure. Professional barriers included clinicians and staff not being used to focusing on patient interaction as a quality issue, individuals not necessarily having been selected, trained or supported to provide patient centred care, and scepticism, defensiveness or resistance to change following feedback. Data related barriers included lack of expertise with survey data, lack of timely and specific results, uncertainty over the effective interventions or time frames for improvement, and consequent risk of perceived low cost effectiveness of data collection. Factors that appeared to have promoted data use included board led strategies to change culture and create quality improvement forums, leadership from senior physicians and managers, and the persistence of quality improvement staff over several years in demonstrating change in other areas.
Conclusion: Using patient survey data may require a more concerted effort than for other clinical data. Organisations may need to develop cultures that support patient centred care, quality improvement capacity, and to align professional receptiveness and leadership with technical expertise with the data.
Homeless populations have complex and diverse end-of-life care needs. However, they typically die outside of the end-of-life care system. To date, few studies have explored barriers to the end-of-life care system for homeless populations. This qualitative study involving health and social services professionals from across Canada sought to identify barriers to the end-of-life care system for homeless populations and generate recommendations to improve their access to end-of-life care.
Semi-structured qualitative interviews were conducted with 54 health and social services professionals involved in end-of-life care services delivery to homeless persons in six Canadian cities (Halifax, Hamilton, Ottawa, Thunder Bay, Toronto and Winnipeg). Participants included health administrators, physicians, nurses, social workers, harm reduction specialists, and outreach workers. Interviews were audio-recorded, transcribed verbatim and analysed thematically.
Participants identified key barriers to end-of-life care services for homeless persons, including: (1) insufficient availability of end-of-life care services; (2) exclusionary operating procedures; and, (3) poor continuity of care. Participants identified recommendations that they felt had the potential to minimize these barriers, including: (1) adopting low-threshold strategies (e.g. flexible behavioural policies and harm reduction strategies); (2) linking with population-specific health and social care providers (e.g. emergency shelters); and, (3) strengthening population-specific training.
Homeless persons may be underserved by the end-of-life care system as a result of barriers that they face to accessing end-of-life care services. Changes in the rules and regulations that reflect the health needs and circumstances of homeless persons and measures to improve continuity of care have the potential to increase equity in the end-of-life care system for this underserved population.
Objective To identify common difficult decisions made by family carers on behalf of people with dementia, and facilitators of and barriers to such decisions, in order to produce information for family carers about overcoming barriers.
Design Qualitative study to delineate decision areas through focus groups and complexity of decision making in individual interviews.
Setting Community settings in London.
Participants 43 family carers of people with dementia in focus groups and 46 carers who had already made such decisions in individual interviews.
Results Family carers identified five core problematic areas of decision making: accessing dementia related health and social services; care homes; legal-financial matters; non-dementia related health care; and making plans for the person with dementia if the carer became too ill to care for them. They highlighted the difficulties in making proxy decisions, especially against active resistance, and their altered role of patient manager while still a family member. Families devised strategies to gain agreement in order to ensure that the person with dementia retained dignity.
Conclusions The following strategies helped with implementation of decisions: introducing change slowly; organising legal changes for the carer as well as the patient; involving a professional to persuade the patient to accept services; and emphasising that services optimised, not impeded, independence. To access services, carers made patients’ general practice appointments, accompanied them to the surgery, pointed out symptoms, gained permission to receive confidential information, asked for referral to specialist services, and used professionals’ authority to gain patients’ agreement. End of life decisions were particularly difficult. They were helped by knowledge of the person with dementia’s previous views, clear prognostic information, and family support. Information sheets to help carers to overcome barriers to proxy decision making have been developed; their impact in practice has yet to be evaluated.
Objectives To examine the experiences of men after treatment for colorectal cancer, identify barriers to accessing services, and suggest improvements to providing information in primary and secondary care.
Design Semistructured, qualitative interview study with purposive sampling and thematic analysis.
Participants 28 patients treated for colorectal cancer.
Setting West Midlands.
Results Most men treated for colorectal cancer experience erectile dysfunction as a consequence. Not all, however, want the same response from health professionals. Although, erectile dysfunction is profoundly stressful for most men, affecting self image, behaviour, and relationships, some do not regard it as a health priority. Many of the men were uninformed about erectile dysfunction and were unprepared for it, and the majority neither helped themselves nor asked for help. Almost none were receiving adequate, effective, and affordable care. Evidence of ageism was strong.
Conclusions Unlike patients with prostate cancer, men with colorectal cancer are not routinely offered information and treatment for erectile dysfunction. Greater coordination of care and consistent strategies are needed to tackle the unmet needs of this widely diverse patient group. Currently, clinicians are inadvertently neglecting, misleading, and offending such patients; better training could improve this situation, as might the reorganisation of services. Further research is needed to determine whether trained clinical nurse specialists in colorectal cancer units could coordinate ongoing care.
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.
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.
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.
Improving the coordination of cancer care is a priority area for service improvement. However, quality improvement initiatives are hindered by the lack of accurate and reliable measures of this aspect of cancer care. This study was conducted to develop a questionnaire to measures patients' experience of cancer care coordination and to assess the psychometric properties of this instrument.
Questionnaire items were developed on the basis of literature review and qualitative research involving focus groups and interviews with cancer patients, carers and clinicians. The draft instrument was completed 686 patients who had been recently treated for a newly diagnosed cancer, including patients from metropolitan, regional and rural areas of New South Wales, Australia. To assess test-retest reliability, 119 patients completed the questionnaire twice. Unreliable items those with limited variability or high levels of missing data were eliminated. Exploratory factor analysis was conducted to define the underlying factor structure of the remaining items and subscales were constructed. Correlations between these and global measures of the experience of care coordination and the quality of care were assessed.
Of 40 items included in the draft questionnaire, 20 were eliminated due to poor test-retest reliability (n = 4), limited response distributions (n = 8), failure to load onto a factor (n = 7) or detrimental effect on the internal consistency of the scale (n = 1). The remaining 20 items loaded onto two factors named 'Communication' and 'Navigation', which explained 91% of the common variance. Internal consistency was with high for the instrument (Cronbach's alpha 0.88) and each subscale (Cronbach's alpha 0.87 and 0.73 respectively). There was no apparent 'floor' or 'ceiling' effect for the total score or the Communication subscale, but evidence of a ceiling effect for the Navigation subscale with 21% of respondents achieving the highest possible score. There were moderate positive associations between the total score and global measures of care coordination (r = 0.57) and quality of care (r = 0.53).
The instrument developed in this study demonstrated consistency and robust psychometric properties. It may provide a useful tool to measure patients' experience of cancer care coordination in future surveys and intervention studies.
cancer; coordination of cancer care; questionnaire; psychometrics
To explore terminally ill patients’ perceptions of their own suffering in
order to describe, from these patients’ perspective, some elements of health
care providers’ response to suffering.
Qualitative study using content analysis methods suited to a grounded theory
Teaching and nonteaching hospital oncology clinics, palliative care services
(both ambulatory and in-unit), and family practices.
Twenty-six patients diagnosed with terminal cancer.
Interviews were audiotaped and transcribed verbatim. Data from each interview
were coded and categorized to identify and define themes. Themes were
discussed and refined until those rating them agreed on them. Data were
collected until saturation of emerging issues was reached.
In our health care system, patients are caught in a pervasive pattern of
suffering avoidance, which in turn contributes to increased suffering.
Health care services are perceived as a battlefield where physicians and
patients are engaged in a losing struggle to ward off illness and death.
Both physicians and patients engage in avoiding skepticism and muffling
distress. The unavoidable avowal of powerlessness in the face of terminal
disease is perceived as capitulation and therapeutic abandonment. Budgetary
restraints and understaffing, along with a pervasive culture that implicitly
denies death, produce an environment conducive to the avoidance of
suffering. To counter this, health care practices that foster increased
overlap and continuity between the spheres of oncology, palliative care, and
family medicine seem worth developing.
The suffering of gravely ill patients might be hard to alleviate in the
context of modern health care organizations. In some cases, health care
delivery directly contributes to increased suffering. Providing support
while also helping patients and their families to face upcoming harsh
realities is a delicate balancing act that needs to be further explored.
An increasing number of older people reach the end of life in care homes. The aim of this study is to explore the perceived benefits of, and barriers to, implementation of the Gold Standards Framework for Care Homes (GSFCH), a quality improvement programme in palliative care.
Nine care homes involved in the GSFCH took part. We conducted semi-structured interviews with nine care home managers, eight nurses, nine care assistants, eleven residents and seven of their family members. We used the Framework approach to qualitative analysis. The analysis was deductive based on the key tasks of the GSFCH, the 7Cs: communication, coordination, control of symptoms, continuity, continued learning, carer support, and care of the dying. This enabled us to consider benefits of, and barriers to, individual components of the programme, as well as of the programme as a whole.
Perceived benefits of the GSFCH included: improved symptom control and team communication; finding helpful external support and expertise; increasing staff confidence; fostering residents' choice; and boosting the reputation of the home. Perceived barriers included: increased paperwork; lack of knowledge and understanding of end of life care; costs; and gaining the cooperation of GPs. Many of the tools and tasks in the GSFCH focus on improving communication. Participants described effective communication within the homes, and with external providers such as general practitioners and specialists in palliative care. However, many had experienced problems with general practitioners. Although staff described the benefits of supportive care registers, coding predicted stage of illness and advance care planning, which included improved communication, some felt the need for more experience of using these, and there were concerns about discussing death.
Most of the barriers described by participants are relevant to other interventions to improve end of life care in care homes. There is a need to investigate the impact of quality improvement programmes in care homes, such as the GSFCH, on a wider range of outcomes for residents and their families, and to monitor the sustainability of any resulting improvements. It is also important to explore the impact of the different components of these complex interventions.
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.
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.
Urban, semi-urban and rural communities in three areas of Scotland.
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.
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.
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.
palliative care; cancer care; out-of-hours medical care; qualitative research; primary health care
To examine in depth the views and experiences of continence service leads in England on key service and continence management characteristics in order to identify and to improve our understanding of barriers to a good-quality service and potential facilitators to develop and to improve services for older people with urinary incontinence (UI).
Qualitative semistructured interviews using a purposive sample recruited across 16 continence services.
3 acute and 13 primary care National Health Service Trusts in England.
16 continence service leads in England actively treating and managing older people with UI.
In terms of barriers to a good-quality service, participants highlighted a failure on the part of commissioners, managers and other health professionals in recognising the problem of UI and in acknowledging the importance of continence for older people and prevalent negative attitudes towards continence and older people. Patient assessment and continence promotion regardless of age, rather than pad provision, were identified as important steps for a good-quality service for older people with UI. More rapid and appropriate patient referral pathways, investment in service capacity, for example, more trained staff and strengthened interservice collaborations and a higher profile within medical and nurse training were specified as being important facilitators for delivering an equitable and high-quality continence service. There is a need, however, to consider the accounts given by our participants as perhaps serving the interests of their professional group within the context of interprofessional work.
Our data point to important barriers and facilitators of a good-quality service for older people with UI, from the perspective of continence service leads. Further research should address the views of other stakeholders, and explore options for the empirical evaluation of the effectiveness of identified service facilitators.
Family carers of patients with amyotrophic lateral sclerosis (ALS) are presumed to have frequent involvement in decision-making for symptom management and quality of life. To better understand and improve decision-making, we investigated the range and extent of carer participation in decision-making. By focusing on the perspectives of ALS support carers, the study aimed to explore carer participation in decision-making, to identify carer roles, and determine the facilitators and barriers to carer participation in decision-making for ALS multidisciplinary care.
Participants and methods
An exploratory, in-depth study was conducted with eight carers of ALS patients from two specialized ALS multidisciplinary clinics. Carers participated in semi-structured interviews that were audio recorded and transcribed then coded and analyzed for emergent themes.
Carers made a significant contribution to ALS decision-making. Their roles were: promoting the patient voice, promoting patient health literacy, and providing emotional support and logistical assistance. Facilitators of carer participation in decision-making were perceived to be: health professional endorsement of patients’ decision-making style; access to credible information sources; evidence-based information from the ALS clinic, ALS support association, and health practitioners; supportive relationships with family and friends; spiritual faith; ease of contact with ALS services; and availability of physical and practical support for carers. Barriers to carer participation included: changes to patient communication and cognition; conflict between respect for patients’ independence and patients’ best interest; communication breakdown between patient, carer, and service providers; the confronting nature of disease information; credibility of Internet sites; carer coping strategies; lack of support for the carer; and the burden of care.
Carers enhance ALS patient-centered care through their participation in decision-making. They collaborate with patients and health professionals to form a decision-making triad within specialized multidisciplinary ALS clinical care. Nevertheless, health professional engagement with carers as collaborative partners is acknowledged to be a significant challenge.
motor neuron disease; carer experience; patient-centered care; health literacy; health care triad; barriers and facilitators
Studies have shown that effective discharge planning is one of the key factors related to the quality of inpatient care and unnecessary hospital readmission. The perception and understanding of hospital discharge by health professionals is important in developing effective discharge planning. The aims of this present study were to explore the perceived quality of current hospital discharge from the perspective of health service providers and to identify barriers to effective discharge planning in Hong Kong.
Focus groups interviews were conducted with different healthcare professionals who were currently responsible for coordinating the discharge planning process in the public hospitals. The discussion covered three main areas: current practice on hospital discharge, barriers to effective hospital discharge, and suggested structures and process for an effective discharge planning system.
Participants highlighted that there was no standardized hospital-wide discharge planning and policy-driven approach in public health sector in Hong Kong. Potential barriers included lack of standardized policy-driven discharge planning program, and lack of communication and coordination among different health service providers and patients in both acute and sub-acute care provisions which were identified as mainly systemic issues. Improving the quality of hospital discharge was suggested, including a multidisciplinary approach with clearly identified roles among healthcare professionals. Enhancement of health professionals' communication skills and knowledge of patient psychosocial needs were also suggested.
A systematic approach to develop the structure and key processes of the discharge planning system is critical in ensuring the quality of care and maximizing organization effectiveness. In this study, important views on barriers experienced in hospital discharge were provided. Suggestions for building a comprehensive, system-wide, and policy-driven discharge planning process with clearly identified staff roles were raised. Communication and coordination across various healthcare parties and provisions were also suggested to be a key focus.
To compare the illness trajectories, needs, and service use of patients with cancer and those with advanced non-malignant disease.
Qualitative interviews every three months for up to one year with patients, their carers, and key professional carers. Two multidisciplinary focus groups.
20 patients with inoperable lung cancer and 20 patients with advanced cardiac failure and their main informal and professional carers.
Main outcome measures
Perspectives of patients and carers about their needs and available services.
219 qualitative interviews were carried out. Patients with cardiac failure had a different illness trajectory from the more linear and predictable course of patients with lung cancer. Patients with cardiac failure also had less information about and poorer understanding of their condition and prognosis and were less involved in decision making. The prime concern of patients with lung cancer and their carers was facing death. Frustration, progressive losses, social isolation, and the stress of balancing and monitoring a complex medication regimen dominated the lives of patients with cardiac failure. More health and social services including financial benefits were available to those with lung cancer, although they were not always used effectively. Cardiac patients received less health, social, and palliative care services, and care was often poorly coordinated.
Care for people with advanced progressive illnesses is currently prioritised by diagnosis rather than need. End of life care for patients with advanced cardiac failure and other non-malignant diseases should be proactive and designed to meet their specific needs.
What is already known on this topicThe model of care for cancer patients that encompasses diagnosis, treatment, and palliative care is well developedWhat this study addsPatients with advanced cardiac failure have a different illness trajectory from those with inoperable lung cancerSuch patients and their carers have different concerns, a poorer understanding of the illness and prognosis, and less opportunity to address end of life issues than patients with lung cancerHealth, social, and palliative care services are less readily available to those with a non-cancer diagnosisCare for patients with advanced cardiac failure should be proactive and designed to meet their specific needs
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.
Older people are increasingly retaining their natural teeth but at higher risk of oral disease with resultant impact on their quality of life. Socially deprived people are more at risk of oral disease and yet less likely to take up care. Health organisations in England and Wales are exploring new ways to commission and provide dental care services in general and for vulnerable groups in particular. This study was undertaken to investigate barriers to dental care perceived by older people in socially deprived inner city area where uptake of care was low and identify methods for minimising barriers in older people in support of oral health.
A qualitative dual-methodological approach, utilising both focus groups and individual interviews, was used in this research. Participants, older people and carers of older people, were recruited using purposive sampling through day centres and community groups in the inner city boroughs of Lambeth, Southwark and Lewisham in South London. A topic guide was utilised to guide qualitative data collection. Informants' views were recorded on tape and in field notes. The data were transcribed and analysed using Framework Methodology.
Thirty-nine older people and/or their carers participated in focus groups. Active barriers to dental care in older people fell into five main categories: cost, fear, availability, accessibility and characteristics of the dentist. Lack of perception of a need for dental care was a common 'passive barrier' amongst denture wearers in particular. The cost of dental treatment, fear of care and perceived availability of dental services emerged to influence significantly dental attendance. Minimising barriers involves three levels of action to be taken: individual actions (such as persistence in finding available care following identification of need), system changes (including reducing costs, improving information, ensuring appropriate timing and location of care, and good patient management) and societal issues (such as reducing isolation and loneliness). Older people appeared to place greater significance on system and societal change than personal action.
Older people living within the community in an inner city area where NHS dental care is available face barriers to dental care. Improving access to care involves actions at individual, societal and system level. The latter includes appropriate management of older people by clinicians, policy change to address NHS charges; consideration of when, where and how dental care is provided; and clear information for older people and their carers on available local dental services, dental charges and care pathways.
Collaboration between general practice and mental health care has been recognised as necessary to provide good quality healthcare services to people with mental health problems. Several studies indicate that collaboration often is poor, with the result that patient' needs for coordinated services are not sufficiently met, and that resources are inefficiently used. An increasing number of mental health care workers should improve mental health services, but may complicate collaboration and coordination between mental health workers and other professionals in the treatment chain. The aim of this qualitative study is to investigate strengths and weaknesses in today's collaboration, and to suggest improvements in the interaction between General Practitioners (GPs) and specialised mental health service.
This paper presents a qualitative focus group study with data drawn from six groups and eight group sessions with 28 health professionals (10 GPs, 12 nurses, and 6 physicians doing post-doctoral training in psychiatry), all working in the same region and assumed to make professional contact with each other.
GPs and mental health professionals shared each others expressions of strengths, weaknesses and suggestions for improvement in today's collaboration. Strengths in today's collaboration were related to common consultations between GPs and mental health professionals, and when GPs were able to receive advice about diagnostic treatment dilemmas. Weaknesses were related to the GPs' possibility to meet mental health professionals, and lack of mutual knowledge in mental health services. The results describe experiences and importance of interpersonal knowledge, mutual accessibility and familiarity with existing systems and resources. There is an agreement between GPs and mental health professionals that services will improve with shared knowledge about patients through systematic collaborative services, direct cell-phone lines to mental health professionals and allocated times for telephone consultation.
GPs and mental health professionals experience collaboration as important. GPs are the gate-keepers to specialised health care, and lack of collaboration seems to create problems for GPs, mental health professionals, and for the patients. Suggestions for improvement included identification of situations that could increase mutual knowledge, and make it easier for GPs to reach the right mental health care professional when needed.
The use of health information technology (IT) to resolve the crisis in communication inherent within the fragmented service environment of medical care in the United States is a strategic priority for the Department of Health and Human Services. Yet the deployment of health IT alone is not sufficient to improve quality in health service delivery; what is needed is a human factors approach designed to optimize the balance between health-care users, health-care providers, policies, procedures, and technologies. An evaluation of interface issues between primary and specialist care related to cancer reveals opportunities for human factors improvement along the cancer care continuum. Applications that emphasize cognitive support for prevention recommendations and that encourage patient engagement can help create a coordinated health-care environment conducive to cancer prevention and early detection. An emphasis on reliability, transparency, and accountability can help improve the coordination of activities among multiple service providers during diagnosis and treatment. A switch in emphasis from a transaction-based approach to one emphasizing long-term support for healing relationships should help improve patient outcomes during cancer survivorship and end-of-life care. Across the entire continuum of care, an emphasis on “meaningful use” of health IT—rather than on IT as an endpoint—should help put cancer on a path toward substantive continuous quality improvement. The accompanying research questions will focus on reducing the variance between the social and technical subsystems as IT is used to improve patient outcomes across the interfaces of care.
As the complexity of cancer treatment increases so too has the need for coordination between health care professionals. Multidisciplinary meetings are a useful tool in treating patients with cancer and are shown to improve survival and adherence to evidence based-guidelines.
Multidisciplinary cancer care is a standard feature of high quality care. In many centers, the multidisciplinary meeting (MDM) is an integral component. A qualitative study was performed to explore health professionals' attitudes towards this model of care, the decision making processes, and dynamics among team members.
A series of focus groups was conducted with health professionals who attend MDMs at our institution. Focus groups followed a semistructured format with open-ended questions. A thematic analysis was performed.
Four focus groups were held, attended by 23 participants including allied health professionals, specialist nurses, medical oncologists, and surgeons. All participants believed the primary objective of the MDM was to develop an individualized treatment plan. Several other key themes emerged. The MDM provided opportunities to improve communication, efficiency, and education as well as enhance professional relationships. Medical information was prioritized ahead of psychosocial details, with allied health professionals describing difficulty contributing to MDM discussion. Patient attendance at MDMs was opposed by health professionals because of concerns about the patient's ability to cope with the information discussed and the effect their presence would have on the dynamics of the decision-making process.
Health professionals endorse MDMs as a useful tool in treating patients with cancer. Within this forum, both opportunities and constrains exist, with many benefits extending beyond the meeting itself into other clinical areas. Further study is warranted to establish an evidence base to ensure that both the possibilities and the limitations of this model of care are fully understood.
Approximately 1.5 to 2 million homeless young persons live on the streets in the United States. With the current economic situation, research is needed on quality of services geared toward homeless young adults.
The objective of this study was to explore homeless young adults' perspectives on barriers and facilitators of health-care-seeking behavior and their perspectives on improving existing programs for homeless persons.
This article is a descriptive qualitative study using focus groups, with a purposeful sample of 24 homeless drug-using young adults.
Identified themes were failing access to care based on perceived structural barriers (limited clinic sites, limited hours of operation, priority health conditions, and long wait times) and social barriers (perception of discrimination by uncaring professionals, law enforcement, and society in general).
Results provide insight into programmatic and agency resources that facilitate health-seeking behaviors among homeless young adults and include implications for more research with providers of homeless health and social services.
health care; health-seeking behaviors; homeless; young adults
To identify doctors' perceptions of the need for palliative care for heart failure and barriers to change.
Qualitative study with focus groups.
North west England.
General practitioners and consultants in cardiology, geriatrics, palliative care, and general medicine.
Doctors supported the development of palliative care for patients with heart failure with the general practitioner as a central figure. They were reluctant to endorse expansion of specialist palliative care services. Barriers to developing approaches to palliative care in heart failure related to three main areas: the organisation of health care, the unpredictable course of heart failure, and the doctors' understanding of roles. The health system was thought to work against provision of holistic care, exacerbated by issues of professional rivalry and control. The priorities identified for the future were developing the role of the nurse, better community support for primary care, and enhanced communication between all the health professionals involved in the care of patients with heart failure.
Greater consideration should be given to the care of patients dying with heart failure, clarifying the roles of doctors and nurses in different specialties, and reshaping the services provided for them. Many of the organisational and professional issues are not peculiar to patients dying with heart failure, and addressing such concerns as the lack of coordination and continuity in medical care would benefit all patients.
What is already known on this topicPatients with heart failure have unmet needs for health care at the end of lifeSpecialist palliative care services see few patients with heart failureThe national service framework for coronary heart disease endorses the provision of palliative care for heart failureLittle evidence exists on how this care should be provided, and doctors' views are not knownWhat this study addsBarriers to adopting a palliative care approach in heart failure care relate to the current organisation of health services, the difficulties of prognostication, and doctors' understanding of roles and responsibilitiesDoctors believe that the general practitioner should be the central figure in palliative care for heart failure, supported by specialistsDoctors' future priorities are developing the role of nurses, increasing essential community services, such as district nursing, and improving communication with colleagues