Childhood vaccine refusal and what to do about it: a systematic review of the ethical literature.

BACKGROUND: Parental refusal of routine childhood vaccination remains an ethically contested area. This systematic review sought to explore and characterise the normative arguments made about parental refusal of routine vaccination, with the aim of providing researchers, practitioners, and policymakers with a synthesis of current normative literature. METHODS: Nine databases covering health and ethics research were searched, and 121 publications identified for the period Jan 1998 to Mar 2022. For articles, source journals were categorised according to Australian Standard Field of Research codes, and normative content was analysed using a framework analytical approach. RESULTS: Most of the articles were published in biomedical journals (34%), bioethics journals (21%), and journals that carry both classifications (20%). Two central questions dominated the literature: (1) Whether vaccine refusal is justifiable (which we labelled 'refusal arguments'); and (2) Whether strategies for dealing with those who reject vaccines are justifiable ('response arguments'). Refusal arguments relied on principlism, religious frameworks, the rights and obligations of parents, the rights of children, the medico-legal best interests of the child standard, and the potential to cause harm to others. Response arguments were broadly divided into arguments about policy, arguments about how individual physicians should practice regarding vaccine rejectors, and both legal precedents and ethical arguments for vaccinating children against a parent's will. Policy arguments considered the normative significance of coercion, non-medical or conscientious objections, and possible reciprocal social efforts to offset vaccine refusal. Individual physician practice arguments covered nudging and coercive practices, patient dismissal, and the ethical and professional obligations of physicians. Most of the legal precedents discussed were from the American setting, with some from the United Kingdom. CONCLUSIONS: This review provides a comprehensive picture of the scope and substance of normative arguments about vaccine refusal and responses to vaccine refusal. It can serve as a platform for future research to extend the current normative literature, better understand the role of cultural context in normative judgements about vaccination, and more comprehensively translate the nuance of ethical arguments into practice and policy.

Stigmatized for standing up for my child: A qualitative study of non-vaccinating parents in Australia.

BACKGROUND: Vaccine refusal is highly polarizing in Australia, producing a challenging social landscape for non-vaccinating parents. We sought to understand the lived experience of non-vaccinating parents in contemporary Australia. METHODS: We recruited a national sample of non-vaccinating parents of children <18 yrs, advertising on national radio, in playgrounds in low vaccination areas, and using snowballing. Grounded Theory methodology guided data collection (via semi-structured interviews). Inductive analysis identified stigmatization as a central concept; stigma theory was adopted as an analytical lens. RESULTS: Twenty-one parents from regional and urban locations in five states were interviewed. Parent's described experiences point to systematic stigmatization which can be characterized using Link & Phelan's five-step process. Parents experienced (1) labelling and (2) stereotyping, with many not identifying with the "anti-vaxxers" portrayed in the media and describing frustration at being labelled as such, believing they were defending their child from harm. Participants described (3) social "othering", leading to relationship loss and social isolation, and (4) status loss and discrimination, feeling "brushed off" as incompetent parents and discriminated against by medical professionals and other parents. Finally, (5) legislative changes exerted power over their circumstances, rendering them unable to provide their children with the same financial and educational opportunities as vaccinated children, often increasing their steadfastness in refusing vaccination. CONCLUSION: Non-vaccinating Australian parents feel stigmatized for defending their child from perceived risk of harm, reporting a range of social and psychological effects, as well as financial effects from policies which disadvantaged their children through differential financial treatment, and diminished early childhood educational opportunities. While it might be argued that social stigma and exclusionary policies directed a small minority for the greater good are justified, other more nuanced approaches based on better understandings of vaccine rejection could achieve comparable public health outcomes without the detrimental effect on unvaccinated families.

Midwifery care of non-vaccinating families - Insights from the Byron Shire.

PROBLEM: Midwives may feel ill-equipped to manage clinical encounters with non-vaccinating parents. BACKGROUND: Pregnancy is a peak time in the formation of parents' vaccination views and intention. Midwives are central to maternity care in Australia. While most midwives will have infrequent contact with families who intend not to vaccinate, when they do, they must feel equipped to communicate with them in a manner which fulfils their professional responsibilities, acknowledges parental autonomy and facilitates continued engagement. AIM: To understand how midwives can most effectively communicate with non-vaccinating parents. METHODS: We conducted in-depth interviews with 32 non-vaccinating parents and six key informant health professionals, and a focus group of six midwives. Data collection occurred in the Byron Shire of New South Wales, where childhood vaccination rates are persistently lower than national averages. FINDINGS: This study explores four central codes. The first, 'hold on…I'm not sure about this' providing insights into moments of doubt preceding parents' decisions not to vaccinate. The second 'Pregnancy: a decision-making focal point' reinforces the importance of effective vaccination recommendations in the antenatal period. 'Manipulation and ambivalence' examines why overzealous or unclear recommendations about vaccination are unhelpful, and the fourth central code 'engage, inform and encourage' summarise recommendations from health professionals who are experienced in communicating, apparently effectively, with non-vaccinating families. DISCUSSION: Insights from this study are used to recommend practical strategies which may be employed by midwives and maternity units to successfully and professionally manage clinical encounters with non-vaccinating parents. CONCLUSION: Midwives are well positioned to provide clear recommendations to parents regarding childhood vaccination whilst maintaining engagement and meeting the goals of woman-centred care.

Parenting and the vaccine refusal process: A new explanation of the relationship between lifestyle and vaccination trajectories.

Recent research illuminates the characteristics of non-vaccinating parents in well-defined geographic communities, however the process by which they came to reject vaccines is less clearly understood. Between September 11th, 2017 and February 20th, 2019, we recruited a nationally derived sample of Australian parents of children under 18 years who rejected some or all vaccines for semi-structured interviews. We used various strategies, including advertising on national radio, in community centres and playgrounds in low coverage areas, and snowballing. Grounded Theory methodology guided data collection and analysis. Twenty-one parents from regional and urban locations were interviewed. All spoke of wanting happy, healthy, robust children. All endorsed parenting values and approaches aligned with modern societal expectations of taking responsibility for their child's health. They varied, however, in their lifestyle and vaccination trajectories. Participants self-identified as situated along an 'alternative' to 'mainstream' lifestyle spectrum and had moved both away from and toward vaccination over time. Some had decided before birth that they never would vaccinate their children and had not changed. Others stopped vaccinating after perceived post-vaccine reactions in their children. Still others initially rejected vaccines, but eventually accepted them. The variation and dynamic nature of the vaccination trajectories described in this study suggests that vaccine refusal is not a static trait but rather the result of ever-changing experience and continual risk assessment; not all non-vaccinating parents fit the 'alternative lifestyle' stereotype. This suggests that nuanced personalised engagement with non-vaccinating parents is more appropriate than a one-size-fits-all approach.

Understanding non-vaccinating parents' views to inform and improve clinical encounters: a qualitative study in an Australian community.

OBJECTIVES: To explain vaccination refusal in a sample of Australian parents. DESIGN: Qualitative design, purposive sampling in a defined population. SETTING: A geographically bounded community of approximately 30 000 people in regional Australia with high prevalence of vaccination refusal. PARTICIPANTS: Semi structured interviews with 32 non-vaccinating parents: 9 fathers, 22 mothers and 1 pregnant woman. Purposive sampling of parents who had decided to discontinue or decline all vaccinations for their children. Recruitment via local advertising then snowballing. RESULTS: Thematic analysis focused on explaining decision-making pathways of parents who refuse vaccination. Common patterns in parents' accounts included: perceived deterioration in health in Western societies; a personal experience introducing doubt about vaccine safety; concerns regarding consent; varied encounters with health professionals (dismissive, hindering and helpful); a quest for 'the real truth'; reactance to system inflexibilities and ongoing risk assessment. CONCLUSIONS: We suggest responses tailored to the perspectives of non-vaccinating parents to assist professionals in understanding and maintaining empathic clinical relationships with this important patient group.

"It just forces hardship": impacts of government financial penalties on non-vaccinating parents.

Despite strong evidence confirming vaccination is safe and effective, some parents choose not to vaccinate their children. In 2016, the Australian Government introduced legislation strengthening links between vaccination compliance and some government payments. We interviewed thirty-one non-vaccinating parents about the impacts of this policy. Data analysis produced three key themes: 'questioning policy integrity', 'minimising impact' and 'holding my ground'. Affected parents offset reduced income by removing children from early childhood learning, reducing work commitments, moving residence to reduce living costs and accessing informal childcare arrangements. Parents reported a greater commitment to their decision not to vaccinate and an increased desire to maintain control over health choices for their children including an unprecedented willingness to become involved in protest action. Our study identifies why financial penalties have not been an effective policy measure for this sample of non-vaccinating parents, an understanding which may assist in the development of future legislation.

Aboriginal women in rural Australia; a small study of infant feeding behaviour.

BACKGROUND: Aboriginal women in rural areas have lower rates of breastfeeding than Australian averages. The reasons for this are poorly understood. Aboriginal people experience higher morbidity and increased rates of chronic disease throughout the life cycle. The protective effects of sustained breastfeeding could benefit rural Aboriginal communities. OBJECTIVE: To explore the factors impacting upon infant feeding choices in a rural Aboriginal Community. METHODS: Semi-structured interviews were conducted with eight Aboriginal rural dwelling first time mothers. These women received a continuity of midwife and Aboriginal Health Worker model of care. Interviews were also undertaken with five Aboriginal Health Workers and two Aboriginal community breastfeeding champions. The analysis was integrated with a conventional literature review and was further developed and illustrated with historical literature. Indigenist methodology guided the study design, analysis and the dissemination of results. RESULTS: Three key themes were identified. These were "I'm doing the best thing for..." which encompasses the motivations underpinning infant feeding decisions; "this is what I know..." which explores individual and community knowledge regarding infant feeding; and "a safe place to feed" identifying the barriers that negative societal messages pose for women as they make infant feeding decisions. It appears loss of family and community breastfeeding knowledge resulting from colonisation still influences the Aboriginal women of today. DISCUSSION: Aboriginal women value and trust knowledge which is passed to them from extended family members and women within their Community. Cultural, historical and socioeconomic factors all strongly influence the infant feeding decisions of individuals in this study. CONCLUSIONS: Efforts to normalise breastfeeding in the culture of rural dwelling Aboriginal women and their supporting community appear to be necessary and may promote breastfeeding more effectively than optimal professional care of individuals can do.