Stigma, lost opportunities, and growth: Understanding experiences of caregivers of persons with mental illness in Tamil Nadu, India.

This study aimed to address gaps in understanding of the lived experiences of caregivers of persons with mental illness in low-income countries. It was conducted among caregivers of persons with mental illness making use of a free non-governmental clinic in and around Chennai, India. The study adopted a qualitative methodology, with semi-structured interviews and life history exercises (n = 29) and six focus group discussions with caregivers (n = 21) and mental health professionals and community-based workers (n = 39). The experiences of caregivers were analyzed in the framework of "The Banyan model of caregiving," which identifies six phases. Major themes in caregivers' experience were: embarrassment and losing honor; fear; awareness; stigma and social exclusion; and reduced social interaction and loneliness. Posttraumatic growth considered as the result of caregiver experiences was found to consist mainly of personal growth and focusing on positive life experiences. Lost opportunities particular to the context of Tamil Nadu were described as the inability to get married, obtaining less education than desired, and loss of employment. Siblings faced lower levels of burden, while elderly mothers experienced especially high levels of burden and lack of happiness in life. Caregiver gains were identified as greater compassion for other people with disabilities, resulting in a desire to help others, as well as increased personal strength and confidence. Understanding the nuances of the caregiving experiences over time can provide a framework to devise more fine-tuned support structures that aim to prevent reductions in social interaction and lost opportunities, and improve a sense of meaning, in order to assist caregivers to continue providing care for their relatives with mental illness in a context with scarce mental health resources.

The challenges of living with bipolar disorder: a qualitative study of the implications for health care and research.

BACKGROUND: In mental health care, clinical practice is often based on the best available research evidence. However, research findings are difficult to apply to clinical practice, resulting in an implementation gap. To bridge the gap between research and clinical practice, patients' perspectives should be used in health care and research. This study aimed to understand the challenges people with bipolar disorder (BD) experience and examine what these challenges imply for health care and research needs. METHODS: Two qualitative studies were used, one to formulate research needs and another to formulate healthcare needs. In both studies focus group discussions were conducted with patients to explore their challenges in living with BD and associated needs, focusing on the themes diagnosis, treatment and recovery. RESULTS: Patients' needs are clustered in 'disorder-specific' and 'generic' needs. Specific needs concern preventing late or incorrect diagnosis, support in search for individualized treatment and supporting clinical, functional, social and personal recovery. Generic needs concern health professionals, communication and the healthcare system. CONCLUSION: Patients with BD address disorder-specific and generic healthcare and research needs. This indicates that disorder-specific treatment guidelines address only in part the needs of patients in everyday clinical practice.

A research agenda for bipolar disorder developed from a patients' perspective.

BACKGROUND: Diagnosis and treatment of bipolar disorder is complex. Health care is supported by clinical guidelines, which are highly based on scientific evidence. However, such care does not necessarily correspond to preferred care according to patients. In order to narrow the gap between scientifically based guidelines and the patient's perceptions of the best clinical practice, additional research is needed. The aim of this study was to create a patient based research agenda for bipolar disorder to enhance the alignment between patients' needs and care system. METHODS: A mixed method study design was employed consisting of two phases: consultation and prioritization. In the consultation phase, six focus group discussions with patients (n = 35) were conducted to explore research needs according to patients, resulting in 23 research topics. Subsequently, these topics were prioritized by means of a questionnaire with patients (n = 219). RESULTS: Patients with bipolar disorder mentioned a variety of research topics covered by the following five themes: causes of disorder; pharmacotherapy; non-pharmacological treatment; diagnosis; and recovery & recovery oriented care. 'Etiology' was the topic with highest priority. DISCUSSION: The theme 'causes of disorder' is prioritized highest. We argue that this can be explained by the added value of an explanatory framework for appropriate treatment and recovery. The theme 'recovery & recovery oriented care' is currently underrepresented in actual research. It is argued that in order to bridge the knowledge and implementation gap, social science and health system research is needed in addition to biomedical research.

Cultural validation of a new instrument to measure leprosy-related stigma: the SARI Stigma Scale.

Background: There is a need for comprehensive, valid and reliable instruments to assess leprosy-related stigma. This paper presents the process of the cross-cultural validation of an instrument in Cirebon District, Indonesia initiated by the Stigma Assessment and Reduction of Impact (SARI) project. Methods: The Berger Scale was initially developed to assess HIV/AIDS-related stigma. This study explores the conceptual, item, semantic, operational and measurement equivalence of this scale for leprosy. The process included a qualitative study, translation and back-translation, training of interviewers, a pilot and the main data collection. We aimed for a sample of 154 people affected by leprosy with 60 repeat interviews. They were selected through convenience sampling. Results: The original scale showed acceptable conceptual equivalence, but insufficient item, semantic and operational equivalences. For instance, there were irrelevant HIV-related items and the respondents found it difficult to indicate their level of agreement with the given statements. Major adjustments were necessary, leading to a new version of the scale. The measurement properties of the new version showed good internal consistency (Cronbach's alpha 0·88); no floor or ceiling effects; and a good reliability (intra-class correlation coefficient 0·75).

From end of life to chronic care: the provision of community home-based care for HIV and the adaptation to new health care demands in Zambia.

Aim We present the evolution of primary-level HIV and AIDS services, shifting from end of life to chronic care, and draw attention to the opportunities and threats for the future of Zambia's nascent chronic care system. BACKGROUND: Although African governments struggled to provide primary health care services in the context of a global economic crisis, civil society organisations (CSO) started mobilising settlement residents to respond to another crisis: the HIV and AIDS pandemic. These initiatives actively engaged patients, families and settlement residents to provide home-based care to HIV-infected patients. After 30 years, CHBC programmes continue to be appropriate in the context of changing health care needs in the population. METHODS: The study took place in 2011 and 2012 and was part of a multi-country study. It used a mixed method approach involving semi-structured interviews, focus group discussions, structured interviews, service observations and a questionnaire survey. Findings Our research revealed long-standing presence of extensive mutual support amongst residents in many settlements, the invocation of cultural values that emphasise social relationships and organisation of people by CSO in care and support programmes. This laid the foundation for a locally conceived model of chronic care capable of addressing the new care demands arising from the country's changing burden of disease. However, this capacity has come under threat as the reduction in donor funding to community home-based care programmes and donor and government interventions, which have changed the nature of these programmes in the country. Zambia's health system risks losing valuable capacity for fulfilling its vision 'to bring health care as close to the family as possible' if government strategies do not acknowledge the need for transformational approaches to community participation and continuation of the brokering role by CSO in primary health care.

Health professionals' perspectives on children's and young people's participation in health care: a qualitative multihospital study.

AIMS AND OBJECTIVES: To investigate healthcare professionals' perspectives on child participation in paediatric hospital care and their opinions on improving participation practices. BACKGROUND: Some scholars argue that the decision-making capacities of children largely depend on the attitudes of healthcare professionals rather than on the children's own competences. Healthcare professionals' perspectives on children's participation in hospital care remain largely unexplored. DESIGN: Qualitative descriptive design. METHODS: Healthcare professionals (n = 32) from 10 paediatric wards in the Netherlands participated in semi-structured interviews. Shier's Pathways to Participation model (2001) was used to guide the interviews. RESULTS: Participation is not a term that is frequently used by professionals; however, they feel familiar with the ideas underlying the term, and it is perceived as being at the core of their work. Professionals believe that high levels of participation are possible in basic care for children. Participation in medical decision-making is considered to be more complex and subject to a number of reservations and restrictions. The participants expressed a strong need to enhance child participation in service evaluation and to increase the respect for and understanding of the rights of children to participate outside of the paediatric unit, including in the surgery and emergency departments. CONCLUSION: Children do not currently participate in the assessment of hospital services. Creative methods that support the role of children in evaluating and improving the quality of paediatric hospital care and services should be developed. Hospital-wide policies could help to promote understanding of child participation among all professionals caring for children in hospitals. RELEVANCE TO CLINICAL PRACTICE: Based on international agreements that the Netherlands has ratified, professionals have the duty to facilitate child participation in hospital care. Concrete opportunities and ideas on how to accomplish this goal in practice are provided, and areas for improvement are identified.

A Cluster-Randomized Controlled Intervention Study to Assess the Effect of a Contact Intervention in Reducing Leprosy-Related Stigma in Indonesia.

BACKGROUND: Can deliberate interaction between the public and persons affected by leprosy reduce stigmatization? The study described in this paper hypothesises that it can and assesses the effectiveness of a 'contact intervention'. METHODS/PRINCIPAL FINDINGS: This cluster-randomized controlled intervention study is part of the Stigma Assessment and Reduction of Impact (SARI) project conducted in Cirebon District, Indonesia. Testimonies, participatory videos and comics given or made by people affected by leprosy were used as methods to facilitate a dialogue during so-called 'contact events'. A mix of seven quantitative and qualitative methods, including two scales to assess aspects of stigma named the SDS and EMIC-CSS, were used to establish a baseline regarding stigma and knowledge of leprosy, monitor the implementation and assess the impact of the contact events. The study sample were community members selected using different sampling methods. The baseline shows a lack of knowledge about leprosy, a high level of stigma and contrasting examples of support. In total, 91 contact events were organised in 62 villages, directly reaching 4,443 community members (mean 49 per event). The interview data showed that knowledge about leprosy increased and that negative attitudes reduced. The adjusted mean total score of the EMIC-CSS reduced by 4.95 points among respondents who had attended a contact event (n = 58; p < 0.001, effect size = 0.75) compared to the score at baseline (n = 213); for the SDS this was 3.56 (p < 0.001, effect size = 0.81). About 75% of those attending a contact event said they shared the information with others (median 10 persons). CONCLUSIONS/SIGNIFICANCE: The contact intervention was effective in increasing knowledge and improving public attitudes regarding leprosy. It is relatively easy to replicate elsewhere and does not require expensive technology. More research is needed to improve scalability. The effectiveness of a contact intervention to reduce stigma against other neglected tropical diseases and conditions should be evaluated.

Lay and peer counsellors to reduce leprosy-related stigma--lessons learnt in Cirebon, Indonesia.

OBJECTIVE: Counselling has been identified as a promising strategy to reduce stigma. Lay and peer counsellors have provided counselling in various fields, but this has not yet been studied in the field of leprosy. The Stigma Assessment and Reduction of Impact (SARI) project in Cirebon District, Indonesia took up this endeavour. This paper describes the initial experiences based on the perspectives of the lay and peer counsellors and aims to provide lessons learnt for future initiatives. METHODS: The selection of lay and peer counsellors was based upon pre-defined criteria such as completed junior high school and level of confidence. This study draws on the notes of seven monitoring and evaluation meetings and 21 group discussions the main researcher facilitated with the lay and peer counsellors and the notes written by the lay and peer counsellors on the sessions with their clients. RESULTS: In total, 198 people affected by leprosy were offered counselling by the 11 lay and 12 peer counsellors; 145 accepted this offer. The other 53 either did not need counselling or did not want to participate for example due to worries about disclosure. Effective communication skills such as listening and asking effective questions were important, but also difficult to acquire for the lay and peer counsellors. Sharing personal experiences was highly appreciated by clients and stimulated a deepened reflection. CONCLUSION: Challenges related to concealment and effective skills exist, but some people affected by leprosy and others can become effective counsellors making it at the outset a challenging but nevertheless promising intervention.

Dealing with stigma: experiences of persons affected by disabilities and leprosy.

Persons affected by leprosy or by disabilities face forms of stigma that have an impact on their lives. This study seeks to establish whether their experiences of stigma are similar, with a view to enabling the two groups of people to learn from each other. Accounts of experiences of the impact of stigma were obtained using in-depth interviews and focus group discussion with people affected by leprosy and by disabilities not related to leprosy. The analysis shows that there are a lot of similarities in impact of stigma in terms of emotions, thoughts, behaviour, and relationships between the two groups. The main difference is that those affected by leprosy tended to frame their situation in medical terms, while those living with disabilities described their situation from a more social perspective. In conclusion, the similarities offer opportunities for interventions and the positive attitudes and behaviours can be modelled in the sense that both groups can learn and benefit. Research that tackles different aspects of stigmatization faced by both groups could lead to inclusive initiatives that help individuals to come to terms with the stigma and to advocate against exclusion and discrimination.

Gender, mental illness and the Hindu Marriage Act, 1955.

INTRODUCTION: Section 5(ii) of The Hindu Marriage Act, 1955 (HMA) states that under certain circumstances, mental illness is accepted as a ground for the annulment of marriage, while Section 13(1) (iii) states that mental illness is a ground for divorce. There is little data on how this provision is used and applied in matrimonial petitions. This paper assesses judicial practices in divorce cases, exploring the extent to which gender and the diagnosis of mental illness affect the decision to grant annulment or divorce. METHODS: The paper analyses judgments related to annulment and divorce at the Family Court in Pune and at the High Courts in India. RESULTS: In the Family Court at Pune, 85% of the cases were filed by husbands, who alleged that their spouse was mentally ill. Medical evidence of mental illness was presented in only 36% of the cases and in many cases, divorce/nullity was granted even in the absence of medical evidence. In 14% of the cases, nullity/divorce was granted even when both spouses were not present. Of the Family Court cases reaching the High Court, 95% were filed by male petitioners. The High Courts reversed the lower courts' judgments in 50% of the cases. DISCUSSION: Our analysis highlights the need for standardised guidelines for lower courts on what constitutes adequate medical proof of mental illness when hearing a petition related to nullity or divorce under HMA. It also provides a critical review of Section 5(ii) of HMA.

'I'm happy that I can still walk'--Participation of the elderly in home care as a specific group with specific needs and wishes.

BACKGROUND: Taking the needs, wishes and experiential knowledge of clients into account is considered to result in a better fit between the supply and demand of modern health care, contributing to the improvement of individual care, organizations, institutions and policy. However, the current generation of the elderly have had little experience of consumer-oriented public services. They are said to be less likely to discuss their needs and wishes with individual caregivers and health-care organisations. As a result, they might not receive care matching their needs and wishes. AIM: To examine how the elderly themselves refer to their age and their needs and wishes for individual and collective participation in home-based care to get a better understanding of their participation in their own health care. METHODS: Content analysis of 20 semi-structured in-depth interviews with elderly recipients of care in the Netherlands. RESULTS: The need and ability of the elderly to discuss their experiences are strongly affected by physical and mental limitations, social cultural characteristics and their experiences of life. As a result, the elderly encounter many limitations in discussing their experiences with their individual caregivers and their home-care organisation. However, this does not mean that the elderly do not have needs and wishes that they want taken into account. CONCLUSION: The challenge is to create a more responsive environment and to find new, creative ways of facilitating the expression of the needs and wishes of the elderly, according to the specific values and norms of their generation.

'[I would like] a place to be alone, other than the toilet'--Children's perspectives on paediatric hospital care in the Netherlands.

BACKGROUND: Although it is widely recognized that children are willing, capable and legally entitled to be active participants in their health care, parents are generally invited to evaluate paediatric hospital care and services rather than children themselves. This is problematic because parents cannot serve as the only spokespersons for the perspectives and experiences of children. OBJECTIVE: To investigate children's experiences with and perspectives on the quality of hospital care and services in the Netherlands, and how they think care and services could be improved. DESIGN: A qualitative study incorporating different participatory data collection methods, including photovoice and children writing a letter to the chief executive of the hospital. SETTING: Paediatric departments of eight hospitals in the Netherlands (two teaching and six regional). PARTICIPANTS: Children and adolescents (n = 63) with either acute or chronic disorders, aged between 6 and 18 years. RESULTS: The research results provide insights into children's health and social well-being in hospitals. Important aspects of health, like being able to sleep well and nutrition that fits children's preferences, are structurally being neglected. CONCLUSION: The participatory approach brought children's ideas 'alive' and generated concrete areas for improvement that stimulated hospitals to take action. This demonstrates that participatory methods are not merely tools to gather children's views but can serve as vehicles for creating health-care services that more closely meet children's own needs and wishes.

Farm-based interventions for people with mental disorders: a systematic review of literature.

PURPOSE: Farms are increasingly used in mental healthcare. This study aimed to systematically review the evidence on the effectiveness of farm-based interventions for patients with mental disorders. METHODS: Controlled and uncontrolled studies of farm-based interventions were included. Within- and between group effect sizes were calculated. Qualitative data were summarized using thematic synthesis. The review followed the PRISMA, Cochrane and COREQ standards. RESULTS: The eleven articles included reported results of five studies, three of which were randomized control trials (RCTs). Overall, 223 patients with depressive disorders, schizophrenia or heterogeneous mental disorders attended three types of farms-based interventions. Favourable effects on clinical status variables were found in one study in patients with depressive disorders that did not respond to medication and/or psychotherapy, and in one RCT in patients with schizophrenia. Assessment of rehabilitative effects (functioning and quality of life) was limited and yielded conflicting results. Patients' experiences revealed that social and occupational components of interventions were perceived as beneficial, and provided insights into how farm-based interventions may facilitate recovery. CONCLUSIONS: Our results suggest that the farm environment should be considered, especially for patients with mental disorders who do not achieve an adequate response with other treatment options. Further research is needed to clarify potential social and occupational benefits.

Outsourcing mental health care services? The practice and potential of community-based farms in psychiatric rehabilitation.

Psychiatric rehabilitation supports individuals with mental disorders to acquire the skills needed for independent lives in communities. This article assesses the potential of outsourcing psychiatric rehabilitation by analysing care farm services in the Netherlands. Service characteristics were analysed across 214 care farms retrieved from a national database. Qualitative insights were provided by five case descriptions, selected from 34 interviews. Institutional care farms were significantly larger and older than private care farms (comprising 88.8% of all care farms). Private, independent care farms provide real-life work conditions to users who are relatively less impaired. Private, contracted care farms tailor the work activities to their capacities and employ professional supervisors. Institutional care farms accommodate for the most vulnerable users. We conclude that collaborations with independent, contracted and institutional care farms would provide mental health care organizations with a diversity in services, enhanced community integration and a better match with users' rehabilitation needs.

The cultural validation of two scales to assess social stigma in leprosy.

BACKGROUND: Stigma plays in an important role in the lives of persons affected by neglected tropical diseases, and assessment of stigma is important to document this. The aim of this study is to test the cross-cultural validity of the Community Stigma Scale (EMIC-CSS) and the Social Distance Scale (SDS) in the field of leprosy in Cirebon District, Indonesia. METHODOLOGY/PRINCIPLE FINDINGS: Cultural equivalence was tested by assessing the conceptual, item, semantic, operational and measurement equivalence of these instruments. A qualitative exploratory study was conducted to increase our understanding of the concept of stigma in Cirebon District. A process of translation, discussions, trainings and a pilot study followed. A sample of 259 community members was selected through convenience sampling and 67 repeated measures were obtained to assess the psychometric measurement properties. The aspects and items in the SDS and EMIC-CSS seem equally relevant and important in the target culture. The response scales were adapted to ensure that meaning is transferred accurately and no changes to the scale format (e.g. lay out, statements or questions) of both scales were made. A positive correlation was found between the EMIC-CSS and the SDS total scores (r=0.41). Cronbach's alphas of 0.83 and 0.87 were found for the EMIC-CSS and SDS. The exploratory factor analysis indicated for both scales an adequate fit as unidimensional scale. A standard error of measurement of 2.38 was found in the EMIC-CSS and of 1.78 in the SDS. The test-retest reliability coefficient was respectively, 0.84 and 0.75. No floor or ceiling effects were found. CONCLUSIONS/SIGNIFICANCE: According to current international standards, our findings indicate that the EMIC-CSS and the SDS have adequate cultural validity to assess social stigma in leprosy in the Bahasa Indonesia-speaking population of Cirebon District. We believe the scales can be further improved, for instance, by adding, changing and rephrasing certain items. Finally, we provide suggestions for use with other neglected tropical diseases.

Practicalities and challenges in re-orienting the health system in Zambia for treating chronic conditions.

BACKGROUND: The rapid evolution in disease burdens in low- and middle income countries is forcing policy makers to re-orient their health system towards a system which has the capability to simultaneously address infectious and non-communicable diseases. This paper draws on two different but overlapping studies which examined how actors in the Zambian health system are re-directing their policies, strategies and service structures to include the provision of health care for people with chronic conditions. METHODS: Study methods in both studies included semi-structured interviews with government health officials at national level, and governmental and non-governmental health practitioners operating from community-, primary health care to hospital facility level. Focus group discussions were conducted with staff, stakeholders and caregivers of programmes providing care and support at community- and household levels. Study settings included urban and rural sites. RESULTS: A series of adaptations transformed the HIV programme from an emergency response into the first large chronic care programme in the country. There are clear indications that the Zambian government is intending to expand this reach to patients with non-communicable diseases. Challenges to do this effectively include a lack of proper NCD prevalence data for planning, a concentration of technology and skills to detect and treat NCDs at secondary and tertiary levels in the health system and limited interest by donor agencies to support this transition. CONCLUSION: The reorientation of Zambia's health system is in full swing and uses the foundation of a decentralised health system and presence of local models for HIV chronic care which actively involve community partners, patients and their families. There are early warning signs which could cause this transition to stall, one of which is the financial capability to resource this process.

A systematic review of the literature on self-management interventions and discussion of their potential relevance for people living with HIV in sub-Saharan Africa.

OBJECTIVE: This study systematically reviews the literature on self-management interventions provided by health care teams, community partners, patients and families and discusses the potential relevance of these interventions for people living with HIV in sub-Saharan Africa. METHODS: We searched major databases for literature published between 1995 and 2012. 52 studies were included in this review. RESULTS: The review found very few studies covering people living with HIV and generally inconclusive evidence to inform the development of chronic care policy and practice in sub-Saharan Africa. CONCLUSION: Chronic care models and self-management interventions for sub-Saharan Africa has not been a research priority. Furthermore, the results question the applicability of these models and interventions in sub-Saharan Africa. There is a need for studies to fill this gap in view of the rapidly increasing number of people needing chronic care services in Africa. PRACTICE IMPLICATIONS: The established practices for long-term support for HIV patients are still the most valid basis for promoting self-management. This will be the case until there are more studies which assess those practices and their effect on self-management outcomes and other studies which assess the utility and feasibility of applying chronic care models that have been developed in high-income countries.

Mental health recovery on care farms and day centres: a qualitative comparative study of users' perspectives.

PURPOSE: Mental health services increasingly incorporate the vision of recovery. This qualitative study analysed and compared experiences of recovery on prevocational services, in order to assess if users make progress towards recovery, relative to a staged recovery model. METHOD: Data were collected through semi-structured interviews with participants on care farms (n = 14), work (n = 7) and creative projects (n = 5). RESULTS: The transition from past to current lives was described as a progressive, non-linear process, with different stages guided by different goals. Participants on creative projects lacked clear goals, presented less interest in peers and high need for emotional support. Participants on work projects aimed for occupational rehabilitation, but struggled with the patient culture of the peer community. Participants on care farms aimed for daytime occupations and closer contact with society. They experienced care farms as open, real-life work settings where they could exercise responsibility and connect with people. CONCLUSIONS: Participants progressed towards recovery, as care farms, work- and creative projects empowered them to leave behind inactive, isolated or disorganized living. In day centres, users focused on self-reflection and personal development (creative projects) or on occupational performance (work projects), whereas on care farms, users fulfilled worker roles in a real-life, open community environment. IMPLICATIONS FOR REHABILITATION: Organized as open communities in real-life settings, care farms facilitate the reflection on personal and social responsibility, and therefore have the potential to help users internalize worker identities and improve their motivation to progress towards recovery. Supervisors on care farms are regarded by users as close contacts within the social networks they develop on the service, a position that allows supervisors to actively engage and promote users' progress towards recovery. Elements of the farm environment (such as the "normal life", presence of family members and visitors, and nature) can serve as anchors for supporting the progress towards recovery.

The meaning of leprosy and everyday experiences: an exploration in cirebon, indonesia.

It is imperative to consider the meaning of leprosy and everyday experiences of people affected by leprosy and key persons in the community if one aims to make leprosy services more effective, which appears necessary in Indonesia given the large numbers of new cases detected annually. However, little is written in the international literature about the experiences of people currently being treated for leprosy, those cured, or other key informants. This paper analyses the narratives of the people by drawing upon in-depth interviews with 53 participants and 20 focus groups discussions. The participants were purposively selected. We provide insights into the experiences of people and the meaning they give to leprosy and highlight aspect of aetiology, spirituality, religion, darkening of the skin, and sorcery. We also examine experiences of seeking care and focused on the impact of the disease in particular on the elderly and children. In conclusion, the continued need for implementation of leprosy services in Indonesia is very evident. The diversities in people's experiences with leprosy indicate a demand for responsive leprosy services to serve the diverse needs, including services for those formally declared to be "cured."

Public perception of prenatal genetic testing: arguments put forward by the public during a participatory policy project in the Netherlands.

In early 2002, the Dutch Ministry of Public Health, Welfare and Sport piloted the application of an interactive process to policy development in the field of medical biotechnology. In such an approach, relevant societal actors, including the public at large, are actively involved in an open exchange, planning, action and reflection process. This paper reports on the findings of one of the activities of the ministry within this initiative, the consultation of the public on dilemmas with respect to prenatal genetic testing by means of citizen panels. Participants were asked to reflect on questions with respect to whether and under which conditions pregnant women may have freedom of choice to use prenatal genetic testing. In a structured way, arguments in favour and against various positions were identified and prioritized. The paper closes with a discussion on the implications of the use of citizen panels and summarizes the 2 actual policy changes of the ministry that resulted from this process.