Understanding Non-Vaccinating Parents' Views to Inform and Improve Clinical Encounters: A Qualitative Study in an Australian Community

"If the importance of clinical empathy is accepted, this suggests there is value in clinicians understanding the perspective that they may encounter from non-vaccinating parents."

An encounter between a non-vaccinating parent and a health professional places both parties in a situation in which their beliefs and ability to communicate effectively may be challenged. Research has found that clinicians may find these encounters to be complex and challenging. Vaccine refusal has potentially negative health consequences for the individual child and for his or her community, especially when there is geographic clustering of low vaccination uptake. The community in which this study took place represents one of these clusters. The study's purpose is to share non-vaccinating parents' reports of helpful and hindering experiences with health professionals, both to fill gaps in the literature and to minimise adversarial behaviour in clinical encounters.

Semi-structured face-to-face interviews were conducted from October 2015 to October 2017 with 32 parents (9 fathers, 22 mothers, and 1 pregnant woman), purposively selected for their decision to discontinue or decline all vaccinations for their children. Parents were recruited via local advertising and then snowball sampling from the Byron Shire Local Government Area of New South Wales, Australia, a community of approximately 30,000 residents with vaccination refusal that are higher than national average rates.

Thematic analysis focused on explaining decision-making pathways of parents who refuse vaccination. Common patterns in parents' accounts included:

• Most of the non-vaccinating parents (27/32) made comments indicating that their decision was made on the background of a perception that overall health and well-being in Western societies is deteriorating. On this basis, they concluded that Western medicines and lifestyles have the potential to cause harm and therefore require questioning, despite their apparently scientific basis.
• 24 of the parents cited an experience of their own child, a child they knew personally, or they themselves becoming unwell following vaccination as the primary reason for their initial doubt about the safety of vaccination.
• When consent to vaccination was perceived to be incomplete or achieved through coercive measures, it undermined health provider and system trust.
• When a health professional dismisses a parent's genuine concerns about their child's well-being following a vaccination, it may undermine trust more broadly than in the single encounter, providing a basis for parents to doubt the accuracy of data on adverse events following immunisations (AEFIs).
• Parents reported their perception that some health professionals did not or were not able to engage in a respectful encounter with them. In their view, this would entail avoiding excessively emotional or coercive language, and discussing both a thorough risk/benefit analysis and possible alternative courses of action. The perceived failure to communicate with them in this way led them to seek other information sources such as other parents, alternative health providers, and online forums. On the other hand, positive encounters with health professionals were described as those where the doctor, nurse, or midwife listened to them, maintaining clear and empathetic communication that was individualised to their specific concerns.
• Most participants undertook what several described as a "journey" to uncover the "real truth" about vaccination. Trusted information appeared to come from someone with 2 characteristics: (i) no perceived vested interest (e.g., financial gain); and (ii) willingness to sit comfortably with their existing views on health and well-being, broadly conceived. Some parents stated that when members of the medical profession claim to have disproven certain alternative remedies, this did not weaken their trust in these treatments. Rather, it further diminished the parents' respect for allopathic medicine.
• Some parents sought, for example, tetanus or polio as a sole vaccine. When this was not an option due to inflexibility in enabling or allowing modification to the recommended vaccination schedule, they declined the full schedule and explored dietary, lifestyle, and alternative remedies to achieve their health goals.
• When asked if any conditions may inspire them to reconsider vaccination, some parents conceded that modified schedules such as single dose or delayed vaccines, access to high-quality products "without toxic ingredients", or heightened risk due to their child to a disease outbreak or overseas travel may prompt uptake of some vaccines.

Reflecting on the findings, the researchers draw out implications for clinical practice and policy, particularly in relation to: counterproductive practices such as labelling parents as "anti-vaxxers"; avoidance of coercive language and policy settings; careful adherence to consent procedures; efforts to increase the quality of vaccine information offered to parents; the need for more transparent adverse event reporting and management; and the role of empathic, non-judgmental communication in clinical engagement. For example, most parents reported reading intensively (e.g., peer-reviewed literature) - both in initial decision-making phases and for some as an ongoing strategy to re-evaluate and confirm their decision. Showing recognition for the care and diligence that some non-vaccinating parents apply to the decision, and the location of the decision within their broader life experiences and parenting values, could help healthcare providers maintain an empathetic connection.

Specific recommendations for clinicians encountering parents who have chosen not to vaccinate include:

• Acknowledge the difficulties in making this decision.
• Respond to individual concerns and emotional cues, which may point to fear or anxiety.
• Attend carefully to clinical history-taking, which may reveal an event that triggered doubt.
• Report every suspected or perceived AEFI.
• Adequately reimburse longer consultations for clinicians.
• Adhere to the principles of valid consent - e.g., (i) be given by a person with legal capacity and of sufficient intellectual capacity to understand the implications of being vaccinated; (ii) be given voluntarily in the absence of undue pressure, coercion, or manipulation; (iii) cover the specific procedure that is to be performed; and (iv) be given only after the potential risks and benefits of the relevant vaccine, risks of not having it, and any alternative options have been explained to the individual.
• Refer hesitant parents to a specialist immunisation service or clinician where available.

In conclusion, the researchers suggest responses tailored to the perspectives of non-vaccinating parents. "Building trust and lasting engagement through positive encounters may foster opportunities to encourage vaccination uptake, with the accompanying individual and community benefits, at some point in the course of their parenting."