‘And then you can decide’ – antenatal foetal diagnosis decision making in South Africa

Health Expectations, Volume 18, No. 6, Year 2015

Interpretation

Background: Decision making is integral to genetic counselling and the premise is that autonomous decisions emerge if patients are provided with information in a non-directive manner. The pivotal activity in antenatal diagnosis counselling with at-risk pregnant women is decision making regarding invasive procedures. This process is not well understood in multicultural settings. Objective: This study examined multicultural genetic counselling interactions with women of advanced maternal age (AMA). It aimed to investigate the participants’ orientation towards the amniocentesis decision. Design: Data were collected during 14 video-recorded consultations between six genetic counsellors and 14 women of AMA in a genetic counselling clinic in South Africa. The design was qualitative and conversation analysis was used for analysis. Results: Analysis revealed that counsellors used several strategies to facilitate discussions and decision making. However, the invitation to make a decision regarding amniocentesis was not perceived as being neutral. Both the counsellors and the women appeared to treat the offer as one which should be accepted. This resulted in a paradox, as strategies intended to allow neutral discussion seem to achieve the opposite. It is suggested that these results may be linked to the local health-care setting. Conclusion: The results suggest that the understanding of decision-making processes and enhancing autonomy may require a more detailed investigation into psychosocial, political and historical factors in the local health-care setting. Models of practice as well as the training of genetic counsellors need to be sensitive to these influences. A closer examination of interactional variables may yield new and relevant insights for the profession. In total, 14 genetic counselling sessions were recorded. The 14 women were between 35 and 43 years of age, and their first language was one of the South African indigenous languages (Sesotho, IsiZulu, Setswana, IsiXhosa or Afrikaans) except for one woman, from the Democratic Republic of Congo, whose first language was Ibo. Six genetic counsellors conducted the sessions (two to four sessions each); their age ranged from 27 to 51 years, and their first language was English. The 14 sessions were with women of advanced maternal age who attended a genetic counselling consultation conducted by a Master’s trained registered genetic counsellor in one of the state‐funded hospitals in Johannesburg. In these settings, advanced maternal age (AMA) was defined as being at or over the age of 35 years. The women were in their second trimester of pregnancy and were referred to the genetics clinics by sonographers, nursing staff, obstetricians or foetal medicine specialists. The women were recruited during their genetic counselling clinic appointment and attended the session alone, with the exception of one woman who was accompanied by her partner. Although the clinic was based on pre‐bookings, the number of women who attended on a specific day varied. Due to logistical constraints, only one session per day was recorded. The patient participants were considered a vulnerable group as they received a service and could have felt compelled to give consent. Being mindful of this potential vulnerability, the recruitment for the study was mediated by a culturally matched research assistant. It is hoped that this helped minimize coercion, but it is acknowledged that the setting, because of its medicalized context, is inherently asymmetrical. The data consisted of video‐recorded genetic counselling interactions (45–60 min) between the genetic counsellors and the women. All 14 sessions were conducted in English. During the genetic counselling sessions, the counsellors and women talked about the genetic risk, the amniocentesis procedure, the procedure related abortion risk, having a baby with abnormalities and having an abnormal test result. This information giving process culminated in the counsellor inviting the women to make a decision. Relevant ethical clearance was obtained via the University of the Witwatersrand Research Ethics committee (Ethics clearance number M070222). The first author continued to practise as a genetic counsellor throughout the project and was constantly aware of the effect the two activities, the practising of and analysing the practice of genetic counselling, had on each other. Self‐reflection occurred throughout the research. Keeping notes, engaging in discussions with the research supervisor, mentor and other colleagues provided opportunities for challenging ideas. In addition, valuable comments were received when presenting the data that further challenged and shaped research ideas. It is however acknowledged that at some level, bias would continue to be present. The genetic counselling sessions were video‐recorded, transcribed using transcription conventions by Jefferson33 and (see appendix) analysed using qualitative approaches. The sessions were examined using principles of conversation analysis (CA).34, 35 CA, as a method for analysing interactions, is based on the observation that participants in interaction can only communicate through what they make observable for each other.34, 35 They have no direct access to the other’s intentions or interpretations and are only able to communicate successfully by displaying to each other how they want to be understood (in the ways they design their utterances) and how they understand the other (in the ways they respond). The aim was to investigate the practices by which participants achieve common, intersubjective understandings and how actions are organized in sequences, such as questions and answers, and offers and their acceptance/rejection. The analysis focused on describing how the decision of undergoing an amniocentesis is negotiated between the counsellor and the woman.

AI Digest

Study Justification:

– The study aims to examine multicultural genetic counselling interactions with women of advanced maternal age (AMA) in South Africa.
– Decision making regarding invasive procedures in antenatal diagnosis counselling is not well understood in multicultural settings.
– The study seeks to understand the participants’ orientation towards the amniocentesis decision and the strategies used by genetic counsellors to facilitate discussions and decision making.

Highlights:

– The study found that the invitation to make a decision regarding amniocentesis was not perceived as being neutral.
– Both the genetic counsellors and the women appeared to treat the offer as one which should be accepted, resulting in a paradox.
– The results suggest that a more detailed investigation into psychosocial, political, and historical factors in the local health-care setting is needed to understand decision-making processes and enhance autonomy.
– Models of practice and the training of genetic counsellors need to be sensitive to these influences.
– A closer examination of interactional variables may yield new and relevant insights for the profession.

Recommendations:

– Conduct a more detailed investigation into the psychosocial, political, and historical factors in the local health-care setting to better understand decision-making processes and enhance autonomy.
– Develop models of practice and training programs for genetic counsellors that are sensitive to the influences of the local health-care setting.
– Further examine interactional variables to gain new insights for the profession.

Key Role Players:

– Genetic counsellors
– Women of advanced maternal age
– Research assistant
– Sonographers
– Nursing staff
– Obstetricians
– Foetal medicine specialists

Cost Items for Planning Recommendations:

– Research assistant’s salary
– Video recording equipment
– Transcription services
– Ethical clearance fees
– Research supervisor’s salary
– Mentor’s fees
– Travel expenses for presenting the data
– Analysis software or tools for qualitative approaches

Strength of Evidence

The strength of evidence for this abstract is 7 out of 10.
The evidence in the abstract is qualitative and based on a small sample size. While the study provides valuable insights into decision-making processes in genetic counseling, the findings may not be generalizable to a larger population. To improve the strength of the evidence, future research could include a larger and more diverse sample, as well as quantitative measures to complement the qualitative analysis. Additionally, conducting the study in multiple healthcare settings could provide a more comprehensive understanding of the factors influencing decision-making in multicultural contexts.

Abstract

In total, 14 genetic counselling sessions were recorded. The 14 women were between 35 and 43 years of age, and their first language was one of the South African indigenous languages (Sesotho, IsiZulu, Setswana, IsiXhosa or Afrikaans) except for one woman, from the Democratic Republic of Congo, whose first language was Ibo. Six genetic counsellors conducted the sessions (two to four sessions each); their age ranged from 27 to 51 years, and their first language was English. The 14 sessions were with women of advanced maternal age who attended a genetic counselling consultation conducted by a Master’s trained registered genetic counsellor in one of the state‐funded hospitals in Johannesburg. In these settings, advanced maternal age (AMA) was defined as being at or over the age of 35 years. The women were in their second trimester of pregnancy and were referred to the genetics clinics by sonographers, nursing staff, obstetricians or foetal medicine specialists. The women were recruited during their genetic counselling clinic appointment and attended the session alone, with the exception of one woman who was accompanied by her partner. Although the clinic was based on pre‐bookings, the number of women who attended on a specific day varied. Due to logistical constraints, only one session per day was recorded. The patient participants were considered a vulnerable group as they received a service and could have felt compelled to give consent. Being mindful of this potential vulnerability, the recruitment for the study was mediated by a culturally matched research assistant. It is hoped that this helped minimize coercion, but it is acknowledged that the setting, because of its medicalized context, is inherently asymmetrical. The data consisted of video‐recorded genetic counselling interactions (45–60 min) between the genetic counsellors and the women. All 14 sessions were conducted in English. During the genetic counselling sessions, the counsellors and women talked about the genetic risk, the amniocentesis procedure, the procedure related abortion risk, having a baby with abnormalities and having an abnormal test result. This information giving process culminated in the counsellor inviting the women to make a decision. Relevant ethical clearance was obtained via the University of the Witwatersrand Research Ethics committee (Ethics clearance number M070222). The first author continued to practise as a genetic counsellor throughout the project and was constantly aware of the effect the two activities, the practising of and analysing the practice of genetic counselling, had on each other. Self‐reflection occurred throughout the research. Keeping notes, engaging in discussions with the research supervisor, mentor and other colleagues provided opportunities for challenging ideas. In addition, valuable comments were received when presenting the data that further challenged and shaped research ideas. It is however acknowledged that at some level, bias would continue to be present. The genetic counselling sessions were video‐recorded, transcribed using transcription conventions by Jefferson33 and (see appendix) analysed using qualitative approaches. The sessions were examined using principles of conversation analysis (CA).34, 35 CA, as a method for analysing interactions, is based on the observation that participants in interaction can only communicate through what they make observable for each other.34, 35 They have no direct access to the other’s intentions or interpretations and are only able to communicate successfully by displaying to each other how they want to be understood (in the ways they design their utterances) and how they understand the other (in the ways they respond). The aim was to investigate the practices by which participants achieve common, intersubjective understandings and how actions are organized in sequences, such as questions and answers, and offers and their acceptance/rejection. The analysis focused on describing how the decision of undergoing an amniocentesis is negotiated between the counsellor and the woman.

Materials

https://efashare.b-cdn.net/materials/52867a3300f6dbc301678f12437dddce684a37390939e70a979f822a0e68c69f/HEX-18-3313-s001.docx

Innovations

Based on the provided information, here are some potential innovations that could improve access to maternal health:

1. Multilingual Genetic Counselling: Develop resources and training programs to ensure that genetic counsellors are proficient in multiple languages spoken by the local population. This would help to overcome language barriers and improve communication between counsellors and pregnant women.

2. Culturally Sensitive Decision-Making Tools: Create decision-making tools and resources that are culturally sensitive and take into account the unique cultural beliefs, values, and preferences of pregnant women. This would help to ensure that decision-making processes are inclusive and respectful of diverse cultural backgrounds.

3. Patient Education and Empowerment: Develop educational materials and programs that empower pregnant women to make informed decisions about antenatal diagnosis procedures. This could include providing clear and unbiased information about the benefits, risks, and alternatives to invasive procedures like amniocentesis.

4. Training for Genetic Counsellors: Enhance the training of genetic counsellors to include modules on cultural competency, communication skills, and shared decision-making. This would enable counsellors to better understand and address the unique needs and concerns of pregnant women from multicultural backgrounds.

5. Collaborative Decision-Making: Promote a collaborative approach to decision-making between genetic counsellors and pregnant women. This could involve using shared decision-making tools and techniques that facilitate open and honest discussions, allowing women to actively participate in the decision-making process.

6. Integration of Psychosocial Support: Incorporate psychosocial support services into genetic counselling clinics to address the emotional and psychological needs of pregnant women. This could include providing access to counselling services, support groups, and resources for coping with the decision-making process.

7. Continuous Quality Improvement: Implement mechanisms for continuous quality improvement in genetic counselling services. This could involve regular evaluation and feedback from pregnant women to identify areas for improvement and ensure that services are meeting their needs effectively.

It is important to note that these recommendations are based on the specific context and findings of the study mentioned in the description. Further research and consultation with experts in the field would be necessary to fully develop and implement these innovations.

AI Innovations Description

Based on the description provided, the recommendation to improve access to maternal health would be to develop a culturally sensitive and non-directive decision-making framework for antenatal foetal diagnosis counseling. This framework should take into account the multicultural setting in South Africa and aim to enhance autonomy and understanding of the decision-making process.

Some specific suggestions for developing this innovation could include:

1. Training genetic counselors: Provide training to genetic counselors on cultural sensitivity and the importance of non-directive counseling techniques. This will help them better understand and address the unique needs and perspectives of women from different cultural backgrounds.

2. Multilingual resources: Develop multilingual educational materials and resources that explain the process of antenatal foetal diagnosis and the available options in a clear and accessible manner. These resources should be available in the indigenous languages spoken by the women attending the counseling sessions.

3. Inclusive decision-making: Promote a more inclusive and collaborative decision-making process between the genetic counselors and the women. Encourage open discussions, active listening, and respect for the women’s autonomy in making decisions about invasive procedures like amniocentesis.

4. Psychosocial support: Recognize the psychosocial factors that may influence decision-making and provide appropriate support to women throughout the counseling process. This may include addressing fears, concerns, and emotional well-being, as well as providing referrals to additional support services if needed.

5. Research and evaluation: Conduct further research to better understand the local health-care setting, including the psychosocial, political, and historical factors that may impact decision-making processes. This research can inform the development of evidence-based models of practice and the ongoing training of genetic counselors.

By implementing these recommendations, it is hoped that access to maternal health services will be improved, and women will feel empowered to make informed decisions about antenatal foetal diagnosis.

AI Innovations Methodology

Based on the provided description, here are some potential recommendations to improve access to maternal health:

1. Multilingual Genetic Counselling: Implementing genetic counselling services in multiple languages spoken by the local population can improve access to maternal health for women from diverse cultural backgrounds. This can help ensure that women fully understand the information and options available to them.

2. Culturally Sensitive Decision-Making Support: Develop decision-making support tools and resources that are culturally sensitive and take into account the psychosocial, political, and historical factors in the local healthcare setting. This can help empower women to make informed decisions about invasive procedures like amniocentesis.

3. Training for Genetic Counsellors: Provide training for genetic counsellors that includes sensitivity to cultural influences and interactional variables. This can help counsellors better understand and address the unique needs and perspectives of women seeking genetic counselling.

To simulate the impact of these recommendations on improving access to maternal health, a methodology could include the following steps:

1. Data Collection: Collect data on the current access to maternal health services, including the availability of genetic counselling, language barriers, and cultural considerations.

2. Stakeholder Engagement: Engage with key stakeholders, such as healthcare providers, genetic counsellors, community leaders, and women themselves, to gather insights and perspectives on the potential impact of the recommendations.

3. Development of Simulation Model: Develop a simulation model that incorporates the identified recommendations and factors influencing access to maternal health. This model should consider variables such as language availability, cultural sensitivity, and training for genetic counsellors.

4. Data Analysis: Analyze the simulation model to assess the potential impact of the recommendations on improving access to maternal health. This analysis can include measuring changes in the number of women accessing genetic counselling, improvements in decision-making processes, and overall satisfaction with maternal health services.

5. Validation and Refinement: Validate the simulation model by comparing the simulated results with real-world data. Refine the model based on feedback from stakeholders and further analysis.

6. Policy and Implementation: Use the simulation results to inform policy decisions and implementation strategies aimed at improving access to maternal health. This may involve advocating for multilingual genetic counselling services, developing culturally sensitive decision-making support tools, and providing training for genetic counsellors.

By following this methodology, stakeholders can gain insights into the potential impact of the recommendations and make informed decisions to improve access to maternal health services.

Author


Dima Health

Statistics:

Citations: 7

Identifiers:

DOI: 10.1111/hex.12322

ISSN: 13696513

Research Areas:

Genetics and Genomics, Health System and Policy, Maternal and Child Health, Sexual and Reproductive Health, Social Determinants, Workforce

Study Countries:

Congo, Multi-Countries, South Africa

Study Approach:

Qualitative

Participants Gender:

Female