Older people's preferences for involvement in their own care: a qualitative study in primary health care in 11 European countries

OBJECTIVE: The aim of the study was to explore the views of people aged over 70 years on involvement in their primary health care in 11 different European countries. METHODS: Older patients were asked about their views on patient involvement in a face-to-face interview. All interviews were audio-recorded, transcribed and analysed in accordance with the principles of 'qualitative content analysis'. An international code list was used. RESULTS: Four hundred and six primary care patients aged between 70 and 96 years were interviewed. Their views could be categorized into four major groups: doctor-patient interaction, GP related topics, patient related issues and contextual factors. CONCLUSION: People over 70 do want to be involved in their care but their definition of involvement is more focussed on the 'caring relationship', 'person-centred approach' and 'receiving information' than on 'active participation in decision making'. PRACTICE IMPLICATIONS: The desire for involvement in decision making is highly heterogeneous so an individual approach for each patient in the ageing population is needed. Future research and medical education should focus on methods and training to elicit older patients' preferences. The similar views in 11 countries suggest that methods for enhancing patient involvement in older people could be internationally developed and exchanged.     

Implementing the role of the primary care mental health worker: a qualitative study

BACKGROUND: Primary care mental health workers are a new role recently introduced into primary care in England to help manage patients with common mental health problems. AIM: To explore the views of GPs, primary care teams and patients on the value and development of the new role of primary care mental health workers in practice. DESIGN OF STUDY: Qualitative study. SETTING: The Heart of Birmingham Primary Care Teaching Trust in the West Midlands, UK. METHOD: Thirty-seven semi-structured interviews involving seven primary care mental health workers, 21 patients and 11 focus groups involving 38 members of primary care teams were held with six teams with a worker. Two teams asked for the worker to be removed. Six practice managers also took part in the study. RESULTS: A number of different approaches were used to implement this new role. Strategies that incorporated the views of primary care trust senior management, primary care teams and workers' views appeared most successful. Rapid access to a healthcare professional at times of stress and the befriending role of the worker were also highly valued. Workers felt that their role left them professionally isolated at times. A number of workers described tension around ownership of the role. CONCLUSION: Primary care mental health workers appear to provide a range of skills valued by patients and the primary care teams and can increase patient access and choice in this area of health care. Successful implementation strategies highlighted in this study may be generalisable to other new roles in primary care.     

Prioritising referrals to a community mental health team.

BACKGROUND: Current national policies encourage prioritisation of people with severe mental illness (SMI) as well as the development of a primary care-led National Health Service. Where resources for mental health are limited, there is a potential conflict between the needs of people with SMI and the much more common depressive and anxiety disorders that form the bulk of the mental health workload in primary care. AIM: To describe the re-organisation of a community mental health team in order to prioritise people with SMI. METHOD: The number and type of referrals received in the 12 months before and after re-organisation were compared, and general practitioners' (GP) views on the changes sought. RESULTS: There was a significant reduction in GP referrals of patients with less severe disorders in the second year. In both years the proportion of patients with a possible psychotic diagnosis or risk of self-harm was much higher among referrals from within the psychiatry department (92% of referrals) than among GP referrals (20% of referrals). Using data from a postal survey, 46% of referring GPs reported a significant improvement in the service provided to patients with SMI, but 34% reported a deterioration in services for other patient groups. GPs were more likely to be satisfied with the service for people with SMI than with the service for other patient groups. CONCLUSIONS: Improvements in the service provided for those with SMI can be achieved, but this may be at the expense of services for other patient groups. Primary care groups will need to consider this potential conflict in setting priorities for mental health.     

Next of kin’s experiences of involvement during involuntary hospitalisation and coercion

Background

Norway has extensive and detailed legal requirements and guidelines concerning involvement of next of kin (NOK) during involuntary hospital treatment of seriously mentally ill patients. However, we have little knowledge about what happens in practice. This study explores NOK’s views and experiences of involvement during involuntary hospitalisation in Norway.

Methods

We performed qualitative interviews-focus groups and individual-with 36 adult NOK to adults and adolescents who had been involuntarily admitted once or several times. The semi-structured interview guide included questions on experiences with and views on involvement during serious mental illness and coercion.

Results

Most of the NOK were heavily involved in the patient’s life and illness. Their conceptions of involvement during mental illness and coercion, included many important aspects adding to the traditional focus on substitute decision-making. The overall impression was, with a few exceptions, that the NOK had experienced lack of involvement or had negative experiences as NOK in their encounters with the health services. Not being seen and acknowledged as important caregivers and co sufferers were experienced as offensive and could add to their feelings of guilt. Lack of involvement had as a consequence that vital patient information which the NOK possessed was not shared with the patient’s therapists.

Conclusions

Despite public initiatives to improve the involvement of NOK, the NOK in our study felt neglected, unappreciated and dismissed. The paper discusses possible reasons for the gap between public policies and practice which deserve more attention: 1. A strong and not always correct focus on legal matters. 2. Little emphasis on the role of NOK in professional ethics. 3. The organisation of health services and resource constraints. 4. A conservative culture regarding the role of next of kin in mental health care. Acknowledging these reasons may be helpful to understand deficient involvement of the NOK in voluntary mental health services.

     

Breast and cervical cancer screening for women with mental illness: patient and provider perspectives on improving linkages between primary care and mental health

Summary Objective: Previous research suggests that women with mental illness may be at increased risk for breast and cervical cancer. This qualitative study of patients and primary care and mental health providers explored challenges to accessing and providing breast and cervical cancer screening for women with mental illness. Method: Key informant patient and provider participants were recruited from a community health setting and teaching hospital. Narrative data from 1) interviews with women in a community primary care setting (n = 16); 2) telephone interviews with women with mental illness (n = 16); and 3) focus groups with primary care providers (n = 9) and mental health providers (n = 26) were collected. Results: Patient, provider, and system factors that may contribute to suboptimal cancer screening among women with mental illness were identified. Communication between primary care and mental health providers was noted as a key area for intervention to enhance screening. Barriers to and possibilities for a more proactive role for mental health providers were also considered. Conclusions: Both patient and provider study participants emphasized the need to address communication gaps between primary care and mental health providers and to promote the active collaboration of mental health providers in preventive cancer screening for women with mental illness.     

A randomised controlled trial to test the feasibility of a collaborative care model for the management of depression in older people

BACKGROUND: Depression is the most common mental health disorder in people aged over 65 years. Late-life depression is associated with chronic illness and disability. AIM: To investigate the feasibility of a collaborative care model for depression in older people in a primary care setting. DESIGN OF STUDY: Randomised controlled trial with 16-weeks follow up. SETTING: A primary care trust in Manchester. METHOD: Participants were 105 people aged 60 years or older who scored 5 or more on the Geriatric Depression Scale; 53 were randomly allocated to an intervention group and 52 to a usual care group. The intervention group received care managed by a community psychiatric nurse who delivered an intervention comprising a facilitated self-help programme with close liaison with primary care professionals and old-age psychiatry according to a defined protocol. The usual care group received usual GP care. A nested qualitative study explored the views of the health professionals and patients regarding the acceptability and effectiveness of the intervention. RESULTS: The main outcome measure was recovery from depression. Patients in the intervention group were less likely to suffer from major depressive disorder at follow up compared with usual care (0.32, 95% confidence = interval = 0.11 to 0.93, P = 0.036). The qualitative component of the study demonstrated the acceptability of the intervention to patients. CONCLUSION: A model of collaborative care for older people with depression, used in a primary care setting with a facilitated self-help intervention is more effective than usual GP care. This study demonstrates that the implementation of a collaborative care model is feasible in UK primary care and that the intervention is effective and acceptable to patients.     

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.

     

Swedish health care professionals' diverse understandings of diabetes care

Knowledge of health care professionals' different understandings of diabetes care is important when preparing such professionals in patient education. For patients to manage illness effectively, the actions of health care professionals are crucial. Patients' understanding of their condition should be taken as the point of departure when creating a learning situation. The professionals' understandings of diabetes care were mapped using a survey including 169 primary care doctors, nurses, assistant nurses and chiropodists in Stockholm, Sweden. The responses were analysed using a phenomenographic approach. Five understandings were identified: the professionals treat the patients, the professionals give information, the professionals focus relation and organisation, the professionals seek the patient's agreement, and the professionals focus the patient's understanding of the situation. Only 20 (12%) of the 169 professional caregivers focused the patient's understanding. Professionals need to develop their understandings of health care and the professional-patient interaction in order to support the patients' learning.     

What depressive symptoms are associated with the use of care services? Results from the Netherlands Mental Health Survey and Incidence Study (NEMESIS)

Background: Depression is generally regarded as a serious, incapacitating illness. Although effective treatment strategies are available, timely recognition remains a stumbling block. We investigated the rates of health service uptake among depressed people and the specific depressive symptoms associated with service use, after adjustment for other illness characteristics and sociodemographic variables. Methods: In a representative sample (n=7076) of the Dutch adult population, we identified 1572 subjects with lifetime major or minor depression, using the Composite International Diagnostic Interview. Results: The majority (73%) of subjects with depression had sought specialised mental health care, or to a lesser extent primary care. As expected, those with more severe (vegetative), complex (anxiety-comorbid) or dangerous symptoms (suicidal ideation) were more likely to be treated in the specialised mental health sector. However, subjects with comorbid substance use dependence were less likely to receive care, especially primary care, and those with more education were more likely to receive specialised care, even after adjustment for illness characteristics. Limitations: The use of lifetime measures of depression and service use may have introduced slight recall bias, but it made the assessments less vulnerable to selection bias for chronic cases and to misclassification of subjects with some lifetime treatment experience. Conclusions: Although care for people with depression is readily accessible in the Netherlands, people with less education and people with comorbid substance use dependence remain unnecessarily out of reach of the care services. Primary care services need to be strengthened to enable the broad-scale application of stepped-care strategies.     

Are specialist mental health services being targeted on the most needy patients? The effects of setting up special services in general practice.

BACKGROUND: Around 25% of patients with psychoses lose contact with specialist psychiatric services, despite the government's policy to focus the efforts of community teams on this group. AIM: To identify patient and practice factors associated with continuing contact and loss of contact with specialist services. METHOD: Cross-sectional comparison was made of patients in and out of specialist contact, through detailed interviews with 102 patients among 26 south west London practices. Associations were sought between contact with specialist services and patient factors (illness severity, social functioning, quality of life, needs for care, and satisfaction with general practitioner [GP] services) and practice factors (size, location, fundholding status, training status, and the presence of mental health professionals on site). RESULTS: Thirty-one (30%) patients were currently out of specialist contact. No significant differences were found between those in and out of contact on any measures of diagnosis or psychiatric history. Those in contact had significantly more symptoms, poorer social functioning, poorer quality of life, and more needs for care. The proportion out of contact was significantly higher in two practices that had employed their own mental health professionals to provides services on site for severe mental illnesses. Two factors remained significant predictors of contact in a logistic regression model: whether or not the patient's practice offered a special service on site, and greater patient needs for care. CONCLUSIONS: Secondary mental health services are being targeted towards the more needy patients. The provision of special services in practices can shift care further away from secondary care while still meeting patients' needs.     

Attitudes of mental health professionals about mental illness: a review of the recent literature

A large body of research has documented public attitudes toward people with mental illness. The current attitudes of the people who provide services to those with psychiatric disorders are important to understand, as well. The authors review what studies over the past 5 years reveal about the attitudes of psychiatric professionals. Empirical studies of the attitudes of mental health professionals, published since 2004, were identified and reviewed. Only 19 such studies were found. Most of these studies revealed overall positive attitudes among mental health professionals. However, evidence of negative attitudes and expectations was also found, particularly with respect to social acceptance of people with mental illness. Results indicate a need for greater research attention to mental health professionals' views and for improved attitudes among caregivers. © 2009 Wiley Periodicals, Inc.     

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.     

"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.     

Quality care provision for older people: an interview study with patients and primary healthcare professionals

Background

In recent years, primary health care for the ageing population has become increasingly complex.

Aim

This study sought to explore the views and needs of healthcare professionals and older patients relating to primary care in order to identify focal areas for improving primary health care for older people.

Design and setting

This research was structured as a mixed interview study with focus groups and individual interviews. Participants were made up of primary healthcare professionals and older patients. Patients were recruited from five elderly care homes in a small city in the southern part of the Netherlands.

Method

All interviews were transcribed verbatim and analysed by two individual researchers applying constant comparative analysis. Data collection proceeded until saturation was reached.

Results

Participants in the study agreed about the need for primary care for older patients, and showed sympathy with one another’s perspectives. They did note, however, a number of obstacles hindering good healthcare provision. The major themes that arose were: ‘autonomy and independence’, ‘organisational barriers’, and ‘professional expertise’. Participants generally noted that it is important to clarify differences in perspectives about good care between patients and healthcare professionals.

Conclusion

Effective primary care intervention for older patients requires mutual understanding of the expectations and goals of all parties involved. There are a number of important requirements, especially accessible patient information in the form of care plans; specialist training for nurses and GPs on complex care and multimorbidity; and training on discussing autonomy, goal setting, and shared care. Further improvement in health care for older people and its evaluation research should focus on these requirements.     

The association between illness representation profiles and use of unscheduled urgent and emergency health care services

Objectives. Provision of unscheduled health care (e.g., emergency department, family doctor consultations, pharmacist) is aided by matching patients with the ‘right service, first time’. However, service choice is usually made by patients and carers rather than service providers. The self‐regulation model (SRM) posits that people cope in ways consistent with their illness understanding. The SRM was used to examine differences in people's use of primary, secondary, and community health care services according to their illness representation, whilst also examining associations with chronic illness. Research historically treats illness representations at the level of independent components; this research focused on components as sets (profiles). Design and methods. A general population postal survey obtained usable data from 588 respondents on service usage and illness representation. Results. Cluster analysis detected three illness representation profiles (participant groups) comprising people who regarded their illness as serious, unambiguous, distressing, and difficult to manage (group 1); chronic and concerning, but believing they understood and could manage it (group 2); short‐term, of limited impact or concern but ambiguous in nature (group 3). Overall, group 1 used secondary care more than the other groups. When considering illness chronicity, group 1 showed more use of primary care with non‐chronic conditions and secondary care with chronic conditions. Conclusions. Findings highlighted differences in use of unscheduled services that were related to illness representation profiles. Interventions for moderating service use such as patient information campaigns may need to be tuned towards specific groups of service users to optimize impact.     

Perceived interprofessional barriers between community pharmacists and general practitioners: a qualitative assessment.

BACKGROUND: There have been calls for greater collaboration between general practitioners (GPs) and community pharmacists in primary care. AIM: To explore barriers between the two professions in relation to closer interprofessional working and the extension of prescribing rights to pharmacists. DESIGN OF STUDY: Qualitative study. SETTING: Three locality areas of a health and social services board in Northern Ireland. METHOD: GPs and community pharmacists participated in uniprofessional focus groups; data were analysed using interpretative phenomenology. RESULTS: Twenty-two GPs (distributed over five focus groups) and 31 pharmacists (distributed over six focus groups) participated in the study. The 'shopkeeper' image of community pharmacy emerged as the superordinate theme, with subthemes of access, hierarchy and awareness. The shopkeeper image and conflict between business and health care permeated the GPs' discussions and accounted for their concerns regarding the extension of prescribing rights to community pharmacists and involvement inextended services. Community pharmacists felt such views influenced their position in the hierarchy of healthcare professionals. Although GPs had little problem in accessing pharmacists, they considered that patients experienced difficulties owing to the limited opening hours of pharmacies. Conversely, pharmacists reported great difficulty in accessing GPs, largely owing to the gatekeeper role of receptionists. GPs reported being unaware of the training and activities of community pharmacists and participating pharmacists also felt that GPs had no appreciation of their role in health care. CONCLUSION: A number of important barriers between GPs and community pharmacists have been identified, which must be overcome if interprofessional liaison between the two professions is to be fully realised.     

Facilitating community connections among people with mental illnesses: Perspectives from grassroots community leaders

We conducted focus groups comprising 20 grassroots community leaders to identify social and structural elements that affect community engagement among people with serious mental illnesses. Community leaders not affiliated with mental health systems have been mostly left out of the discussions about inclusion and engagement, even though they possess unique information about the places where they live and can be essential partners in making community connections. The findings from the focus groups point to elements that both facilitate and inhibit connections, as well as roles community mental health practitioners may take on, to engage with community leaders and people with mental illness to minimize barriers and foster connections in community settings. Additionally, the focus groups elucidated the interplay between the right to be a member of one's community and a community's responsibility to create a welcoming environment. The current study garnered information regarding the broader needs and implications of community connections, as well as some specific suggestions to enhance community engagement among people with serious mental illness. Hesitation and stigma around engaging individuals with mental illnesses were identified as barriers to inclusion. Further study about how community leaders and groups may be involved in facilitating meaningful community connections is recommended.     

Primary health care professionals' views on barriers and facilitators to the implementation of the Ottawa Decision Support Framework in practice

OBJECTIVE: To describe primary health care professionals' views on barriers and facilitators for implementing the Ottawa Decision Support Framework (ODSF) in their practice. METHODS: Thirteen focus groups with 118 primary health care professionals were performed. A taxonomy of barriers and facilitators to implementing clinical practice guidelines was used to content-analyse the following sources: reports from each workshop, field notes from the principal investigator and written materials collected from the participants. RESULTS: Applicability of the ODSF to the practice population, process outcome expectation, asking patients about their preferred role in decision making, perception that the ODSF was modifiable, time issues, familiarity with the ODSF and its practicability were the most frequently identified both as barriers as well as facilitators. Forgetting about the ODSF, interpretation of evidence, challenge to autonomy and total lack of agreement with using the ODSF in general were identified only as barriers. Asking about values, health professional's outcome expectation, compatibility with the patient-centered approach or the evidence-based approach, ease of understanding and implementation, and ease of communicating the ODSF were identified only as facilitators. CONCLUSION: These results provide insight on the type of interventions that could be developed in order to implement the ODSF in academic primary care practice. PRACTICE IMPLICATIONS: Interventions to implement the ODSF in primary care practice will need to address a broad range of factors at the levels of the health professionals, the patients and the health care system.