Australasian Genetic Counselors’ Perceptions of Their Role in Supporting Clients’ Behavior Change
2. Materials and Methods
2.4. Data Analysis
3.1. Behaviors Genetic Counselors Wanted Clients to Change following Genetic Counseling
- Attend recommended screening/health appointments and change health behavior. Examples of this behavior were: being vigilant about attending breast surveillance, reducing screening if not required, taking folic acid in preparation for a pregnancy and quitting smoking.
- Access information about the condition and management and communicate information to other agencies. Examples of this behavior were: re-contacting the genetics service and other reliable agencies, knowing where and how to access support services, and talking knowledgeably and confidently about own and family’s genetic information with, for example, partners, health professionals and teachers.
- Share accurate information with relevant family members. Examples of this behavior were: knowing what and how to disseminate risk and genetic testing information and sharing the information with relevant family members.
3.2. Strategies Used by Genetic Counselors to Help Clients Achieve These Behaviors and the Influences on Genetic Counselors’ Behavior
3.2.1. Assessing Needs and Capabilities
- Capability: Participants identified genetic counselors’ skills at working with families. They also described how genetic counselors are able to develop rapport with clients and families and the tendency to ‘support one person over the other based on the rapport’ they had developed during the consultation (FG2).
- Motivation: Beliefs about the extent to which clients should take ownership of their own healthcare was identified as a motivation influencing genetic counselors’ behavior. Participants commented that the ‘responsibility and ownership’ (FG3) of healthcare belonged to the client and that clients need to want to ‘help themselves’ (FG4). A further motivator influencing genetic counselors’ behavior was judgements of clients’ ability to manage their own healthcare. Participants spoke about how their decision to provide follow up, for example to monitor clients’ attendance at appointments, was influenced by their judgement of the clients’ vulnerability or capability to do so.
3.2.2. Providing Tailored Information, Resources and Support
- Capability: Participants highlighted that genetic counselor training equips them with the skills to understand, filter and convey relevant information and address misconceptions, ‘One of the things that genetic counselors do really well—is that translation of really complex genetic information’ (FG1). They talked about the challenges of helping people to understand the significance of genetic information. Some noted a rise within the last five years in the number of clients who are ‘over-literate’ or ‘mis-literate’ (FG1) and who attend clinic with information, terminology and expectations sourced from the internet, not all of which is reliable or relevant and much of which they do not understand, and which the genetic counselor needs to ‘disprove’ (FG1).
- Opportunity: Genetic counselors’ wealth of local knowledge and connections enables them to help clients access the health appointments, social services and support that they need, for example knowledge of local transport or ‘how to get a family in touch with the fuel rebate so they can get themselves to appointments‘ (FG3). The connectedness of genetic counselors with local agencies also influenced their ability to help with clients’ access and, when working with families from diverse cultural groups, drawing on key family knowledge and knowing how to contact services.
- Motivation: There was a belief that the professional role of genetic counselors involves coordinating all aspects of care for clients and families with genetic conditions, including facilitating access to information, support and resources. Participants noted that the genetic counselors’ role includes a ‘huge spectrum of responsibility’ ranging from providing practical information, helping navigate the healthcare system and the transport system and helping people to think about how the information will affect their ‘existence in the world’ and the way they assimilate it (FG3).
3.2.3. Enabling Behavior Change
- Capability: Genetic counselors’ training in the prevention and early detection of relatives’ risk was considered a facilitator in enabling behavior change: ‘We are quite good at helping patients with that, within our scope of practice (FG2)’. However, the lack of skills and training in behavior change techniques and a resulting lack of confidence to deliver behavior change was perceived as a barrier along with a lack the willingness or capacity amongst some genetic counselors to learn new skills.
- Motivation: Beliefs about changing clients’ behavior, non-directiveness and genetic counselors’ role motivated the genetic counselors’ behavior. Participants expressed beliefs about the directiveness of behavior change. They worried about being ‘too pushy’ (FG2, FG5) and questioned whether the ethos of non-directiveness was ‘a little bit at odds with behavior change’ (FG2). Contrasting views were expressed about whether genetic counseling should be directive or non-directive, for example, ‘you want to be non-directive as you don’t want to push people to say, go and have risk-reducing surgery’ (FG2) and ‘[non-directiveness] doesn’t actually align with what we do’ (FG5). Participants spoke about how ‘non-directiveness is from before, and now, with the mainstreaming we have to be much more directive’ (FG5). There was also a belief that whilst behavior change is ‘an integral part ‘of genetic counselors’ work (interview 1) and there is a ‘moral responsibility’ to support behavior change (FG5), it may not be the role or responsibility of genetic counselors to deliver behavior change.
3.2.4. Monitoring Behavior Change
- Opportunity: Genetic counselors’ ‘limited time’ and ‘giant workload’ (FG3), lack of available resources for some genetics services and the limited number of appointments with each client were identified as barriers to monitoring clients’ attendance at appointments or the outcome of family communication. Alongside this, limitations in the system for organising appointments, such as lack of access or long waiting times, and the lack of ‘structural follow up’ (FG4), were also considered to be barriers to monitoring clients’ behavior change.
5. Limitations and Future Research
7. Research Team
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Conflicts of Interest
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|Behavior change training|
|Influences on Genetic Counselors’ Ability to |
Deliver Behavior Change
|What Genetic Counselors Need to Know/Do to |
Deliver Behavior Change
||Lack of knowledge and skills to:
||Knowledge of how to |
apply behavior change theory and which
techniques and strategies are effective.
||Modification of existing practice to incorporate questions about |
capability, opportunity and motivation to change
behavior into existing
|Strategies to focus discussion with clients about |
behavior change, and
promote agency to change behavior
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Jacobs, C.; Turbitt, E.; McEwen, A.; Atkins, L. Australasian Genetic Counselors’ Perceptions of Their Role in Supporting Clients’ Behavior Change. J. Pers. Med. 2023, 13, 30. https://doi.org/10.3390/jpm13010030
Jacobs C, Turbitt E, McEwen A, Atkins L. Australasian Genetic Counselors’ Perceptions of Their Role in Supporting Clients’ Behavior Change. Journal of Personalized Medicine. 2023; 13(1):30. https://doi.org/10.3390/jpm13010030Chicago/Turabian Style
Jacobs, Chris, Erin Turbitt, Alison McEwen, and Lou Atkins. 2023. "Australasian Genetic Counselors’ Perceptions of Their Role in Supporting Clients’ Behavior Change" Journal of Personalized Medicine 13, no. 1: 30. https://doi.org/10.3390/jpm13010030