Ethical Dilemmas of Participation of Service Users With Serious Mental Illness: A Thematic Synthesis

Mental health professionals are expected to stimulate the participation of service users with serious mental illness. This not only changes what is expected from service users and professionals, it also changes the values underlying their relationship. The value of autonomy becomes more important as a result. This raises potential ethical dilemmas. This paper reports the findings of a thematic synthesis of 28 papers on the views of service users, professionals and family members on the care relationship in inpatient, outpatient and community services for people with serious mental illness. It puts forward various perspectives on participation of service users, foregrounding differing values, which in turn can lead to ethical dilemmas for professionals. The key implications for mental health professionals and future research are discussed

Changing patterns of home visiting in general practice: an analysis of electronic medical records

BACKGROUND: In most European countries and North America the number of home visits carried out by GPs has been decreasing sharply. This has been influenced by non-medical factors such as mobility and pressures on time. The objective of this study was to investigate changes in home visiting rates, looking at the level of diagnoses in1987 and in 2001. METHODS: We analysed routinely collected data on diagnoses in home visits and surgery consultations from electronic medical records by general practitioners. Data were used from 246,738 contacts among 124,791 patients in 103 practices in 1987, and 77,167 contacts among 58,345 patients in 80 practices in 2001. There were 246 diagnoses used. The main outcome measure was the proportion of home visits per diagnosis in 2001. RESULTS: Within the period studied, the proportion of home visits decreased strongly. The size of this decrease varied across diagnoses. The relation between the proportion of home visits for a diagnosis in 1987 and the same proportion in 2001 is curvilinear (J-shaped), indicating that the decrease is weaker at the extreme points and stronger in the middle. CONCLUSION: By comparison with 1987, the proportion of home visits shows a distinct decline. However, the results show that this decline is not necessarily a problem. The finding that this decline varied mainly between diagnoses for which home visits are not always urgent, shows that medical considerations still play an important role in the decision about whether or not to carry out a home visit

All in the Family:Headaches and Abdominal Pain as Indicators for Consultation Patterns in Families

PURPOSE Headaches and abdominal pain are examples of minor ailments that are generally self-limiting. We examined the extent to which patterns of visits to family physicians for minor ailments, such as headaches or abdominal pain, cluster within families. METHODS Using information from the Second Dutch National Survey of General Practice for 96 family practices, we analyzed the visits of families with at least 1 child aged 12 years or younger during a period of 12 months. RESULTS Family patterns were clearest in the visits of mothers and children. A large part of the similarity in the frequencies of contact by mothers and daughters could be attributed to shared family factors. This fi nding was especially true for families with a child who had a headache or abdominal pain as the presenting symptom, rather than physical trauma or chronic disease. Within families, we did not fi nd any specific patterns of diagnoses. Diagnoses were recorded by family physicians. In the case of young children, family similarity may have been overestimated because parents initiated the visits and put their child’s health problem into words. CONCLUSIONS Visits to family physicians for headaches or abdominal pain can be seen as indicators of consultation patterns in families. Family patterns related to minor ailments are likely to be a result of socialization. Family consultation patterns might point toward specifi c needs of families and consequently at a different approach to treatment

Striking variations in consultation rates with general practice reveal family influence

BACKGROUND: The reasons why patients decide to consult a general practitioner vary enormously. While there may be individual reasons for this variation, the family context has a significant and unique influence upon the frequency of individuals' visits. The objective of this study was to explore which family factors can explain the differences between strikingly high, and correspondingly low, family consultation rates in families with children aged up to 21. METHODS: Data were used from the second Dutch national survey of general practice. This survey extracted from the medical records of 96 practices in the Netherlands, information on all consultations with patients during 2001. We defined, through multilevel analysis, two groups of families. These had respectively, predominantly high, and low, contact frequencies due to a significant family influence upon the frequency of the individual's first contacts. Binomial logistic regression analyses were used to analyse which of the family factors, related to shared circumstances and socialisation conditions, can explain the differences in consultation rates between the two groups of families. RESULTS: In almost 3% of all families, individual consultation rates decrease significantly due to family influence. In 11% of the families, individual consultation rates significantly increase due to family influence. While taking into account the health status of family members, family factors can explain family consultation rates. These factors include circumstances such as their economic status and number of children, as well as socialisation conditions such as specific health knowledge and family beliefs. The chance of significant low frequencies of contact due to family influences increases significantly with factors such as, paid employment of parents in the health care sector, low expectations of general practitioners' care for minor ailments and a western cultural background. CONCLUSION: Family circumstances can easily be identified and will add to the understanding of the health complaints of the individual patient in the consulting room. Family circumstances related to health risks often cannot be changed but they can illuminate the reasons for a visit, and mould strategies for prevention, treatment or recovery. Health beliefs, on the other hand, may be influenced by providing specific knowledge

People with activity limitations' perceptions of their health condition and their relationships with social participation and experienced autonomy

Background: People with activity limitations participate less in society, which may be due to both societal barriers and personal factors. The aim of this study was to examine the role of one specific personal factor, namely the perceptions that people have of their health condition. We hypothesized that perceptions of more personal control and less negative consequences increase the likelihood of participation in social activities and of experiencing autonomy in participation. Methods: Survey data of 1681 people with activity limitations participating in a Dutch nationwide panel-study were analyzed by means of logistic and linear regression analyses. Perceptions of the health condition were assessed with the revised Illness Perception Questionnaire (IPQ-R). Social participation was operationalized as doing volunteer work, participating in club activities and meeting friends. Two scales of the Impact on Participation and Autonomy questionnaire were used to assess experienced autonomy regarding participation. Results: People who perceived more personal control over their health condition were more likely to participate in volunteer work (OR = 1.36) and club activities (OR = 1.35). People who believed their condition to be long-lasting were also more likely to do volunteer work (OR = 1.34), whereas people who reported a better understanding of their condition were more likely to frequently meet friends (OR = 1.19). Perceptions of the health condition explained 14% of the variance in experienced autonomy in participation, in addition to the severity of participants' activity limitations and their age, gender and education level. Especially a belief in more serious consequences, a perception of a long-lasting and less controllable condition, a perception of less understanding of the condition and a greater perceived impact on the emotional state were associated with experiencing less autonomy in participation. Conclusions: People with activity limitations who experience less control over their condition participate less in volunteer work and club activities than people who experience more control. Perceptions of the health condition are just as important to explain differences in participation as the severity of people's activity limitations and their socio-demographic characteristics. Health and social care professionals should pay attention to people's perceptions, to help people with activity limitations to participate according to their needs, circumstances, and preferences

People with activity limitations' perceptions of their health condition and their relationships with social participation and experienced autonomy

Background: People with activity limitations participate less in society, which may be due to both societal barriers and personal factors. The aim of this study was to examine the role of one specific personal factor, namely the perceptions that people have of their health condition. We hypothesized that perceptions of more personal control and less negative consequences increase the likelihood of participation in social activities and of experiencing autonomy in participation. Methods: Survey data of 1681 people with activity limitations participating in a Dutch nationwide panel-study were analyzed by means of logistic and linear regression analyses. Perceptions of the health condition were assessed with the revised Illness Perception Questionnaire (IPQ-R). Social participation was operationalized as doing volunteer work, participating in club activities and meeting friends. Two scales of the Impact on Participation and Autonomy questionnaire were used to assess experienced autonomy regarding participation. Results: People who perceived more personal control over their health condition were more likely to participate in volunteer work (OR = 1.36) and club activities (OR = 1.35). People who believed their condition to be long-lasting were also more likely to do volunteer work (OR = 1.34), whereas people who reported a better understanding of their condition were more likely to frequently meet friends (OR = 1.19). Perceptions of the health condition explained 14% of the variance in experienced autonomy in participation, in addition to the severity of participants' activity limitations and their age, gender and education level. Especially a belief in more serious consequences, a perception of a long-lasting and less controllable condition, a perception of less understanding of the condition and a greater perceived impact on the emotional state were associated with experiencing less autonomy in participation. Conclusions: People with activity limitations who experience less control over their condition participate less in volunteer work and club activities than people who experience more control. Perceptions of the health condition are just as important to explain differences in participation as the severity of people's activity limitations and their socio-demographic characteristics. Health and social care professionals should pay attention to people's perceptions, to help people with activity limitations to participate according to their needs, circumstances, and preferences

Tinkering as Collective Practice:: A Qualitative Study on Handling Ethical Tensions in Supporting People with Intellectual or Psychiatric Disabilities

The values of patient autonomy and community participation have become central in health care. However, care practices involve a plurality of possibly conflicting values. These values often transgress the borders of the individual professional–client relationship as they involve family members, other professionals and community organisations. Good care should acknowledge this relational complexity, which requires a collective handling of the tensions between values. To better understand this process, we draw on [Mol, A. 2008. The Logic of Care: Health and the Problem of Patient Choice. Routledge; Mol, A., I. Moser, and J. Pols. 2010a. Care in Practice: On Tinkering in Clinics, Homes and Farms. Transcript Verlag.) by developing the notion of collective tinkering. An ethnographic study was conducted in two teams in community housing services for people with Intellectual Disabilities and Severe Mental Illness. Collective tinkering is analysed (1) within teams; (2) between professionals, family members and professionals from different organisations providing care for the same client; and (3) in organising practices for a collective of clients. Collective tinkering involves assembling goods into a care practice, attentively experimenting with these care practices, and adjusting care accordingly within a collective of those involved in care for a particular client (group). When collective tinkering does not occur, the stakeholders excluded (e.g. clients or family members) may experience poor quality of care

Burden of support: a counter narrative of service users’ experiences with community housing services

Community housing services adopt care models such as rehabilitation, recovery-oriented care and person-centered planning to improve the quality of life of service users with an intellectual or psychiatric disability. However, the way these care models are implemented and practiced can negatively impact service users’ experience with the service as their complex needs go unmet. In this paper, we conceptualize these experiences through developing the counternarrative of burdens of support. For this we draw on burden of treatment theory. We conducted ethnographic fieldwork in a community service organization in the Netherlands. This included participant observation (84 h), interviews with service users (n = 20), experts-by-experience (n = 8), family members (n = 10) and photovoice workshops. Our analysis identifies four burdens of support: burden of self-determination; re-identification; responsibilisation and re-placement. The results show that burden of support is very much a relational concept: through their support, professionals can aggravate or alleviate burden. Points of interest People with intellectual or psychiatric disabilities often receive support with living in the community. Good support fits people’s needs (e.g. person-centered planning), builds on people’s strengths and contributes to recovery and community participation. Even when support is practiced or organized with such aims, service users can have negative experiences. In this research we call this: ‘burden of support’. Examples of burden of support identified include: Clients’ needs and wishes are sometimes not sufficiently attended too when working with a personal care plan. Too much responsibility is sometimes shifted to clients, which results in feelings of failing or abandonment. The focus on strengths and recovery sometimes leaves too little room for clients to voice support needs. Having to move to a different home or neighborhood as part of becoming more independent can result in many difficulties including loneliness. The research recommended that those who improve services should also alleviate these burdens

Ask us! Adjusting experience-based codesign to be responsive to people with intellectual disabilities, serious mental illness or older persons receiving support with independent living

Introduction: Experience-based codesign (EBCD) is a valuable tool for participatory quality improvement. However, the EBCD process needs to be adjusted to make it suitable for long-term care. The focus of the improvement process needs to shift to the care relationship, as this is an important part of the quality of care in these settings. Furthermore, the EBCD process needs to be made more accessible to vulnerable populations. Methods: Through a participatory research approach, EBCD was adjusted to long-term care. The research was conducted in two care organisations: one supporting people with serious mental illness and intellectual disabilities in independent living and one providing homecare services for older persons. Results: The participatory research resulted in the development of ‘Ask us!’—a method for critical reflective codesign. The research furthermore provided valuable lessons for participatory projects with vulnerable clients. A common problem with participatory research in long-term care is ensuring the involvement of clients and informal carers. We report on various strategies developed to include experiences of a diverse set of services users, such as combining interviews with participant observation, photo-voice and involving experts-by-experiences as co-ethnographers. In close collaboration with an inclusive theatre company, these experiences were translated into 42 short videos on complex situations in the care relationship from the perspective of clients, professionals or informal carers. These videos instigate critical reflection and accelerate the participatory quality improvement process. Moreover, practical tools were developed to overcome barriers regarding the involvement of people with disabilities. These include the use of photo-elicitation to enable participation of clients with disabilities in heterogeneous group discussions and involving experts-by-experience as proxies to share experiences of clients for whom participation in the ‘Ask us’ method remains inaccessible. Conclusion: The result of a robust participatory process, ‘Ask us!’ is a promising method for participatory quality improvement in long-term care. The research furthermore generated lessons for involving vulnerable populations in participatory research and codesign. Patient or Public Contribution: Clients were involved as informants, sharing their experiences with the care relationship in interviews, photovoice and observations. They were also involved as consultants, helping to analyse input for the film scripts during data validation sessions

Changes in patients' attitudes towards the management of minor ailments

Background: Patients' attitudes towards the management of minor ailments influence help-seeking behaviour. Up-to-date information about patients' attitudes is valuable for understanding changes in help-seeking behaviour. Aim: To describe changes in patients' attitudes between 1987 and 2001, and to explain the relationship between patients' attitudes and attributes of practices, practitioners and patients. Design: Two cross-sectional, Dutch National Surveys of General Practice (1987 and 2001; n = 9579 and n = 8405 patients, respectively). Setting: General practice in the Netherlands. Method: Patients' attitudes were evaluated in health interviews. Data were analysed using multilevel regression analysis. Results: In 2001, patients' attitudes showed a shift away from consulting their GP for minor ailments. Attitudes are uniform across different types of practice, and mainly differ between patients, in 1987 as well as in 2001 the factors associated with firm beliefs about the benefits of GP's care in case of minor ailments were male, older age, lower educational level, a non-Western cultural background, and a visit to the GP in the past 2 months. Furthermore, the association between health status and beliefs about GPs dealing with minor ailments is more marked in 2001. Compared to 1987, the influences of GPs and the practice are more intertwined in 2001. Conclusions: Patients' attitudes towards the management of minor ailments have changed over the years, which implies that strategic action by the profession and the government has affected the way the public uses primary care. However, a marginal group of patients (elderly, less-educated, non-Western) is lagging behind this trend, and continuing to consult GPs for minor ailments