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Using the article attached: Do you think it is possible to protect this vulnerable population during a research study? How do the authors apply the four ethical principles when dealing with a vulnerable population such as incarcerated pregnant women?
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Aim: To stimulate discussion and debate about the inclusion of vulnerable populations in
primary research to inform practice change and improve health outcomes. Background: Current
research practices to safeguard vulnerable people from potential harms related to power
imbalances may in fact limit the generation of evidence‐based practice. Evaluation: The authors
draw on their experience working and researching with a recognized group of vulnerable
people, incarcerated pregnant women, to provide insight into the application of ethics in both
research and clinical practice. In a novel approach, the ethical principles are presented in both
contexts, articulating the synergies between them. Suggestions are presented for how
individuals, managers and organizations may improve research opportunities for clinical
practitioners and enhance the engagement of vulnerable people to contribute to meaningful
practice and policy change. Key Issues: Ethical practice guidelines may limit the ability to create
meaningful change for vulnerable populations, who need authentic system change to achieve
good health outcomes. Conclusion: Inclusive research and practice are essential to ensuring a
strengths‐based approach to healthcare and addressing health needs of the whole population.
Health systems and models of care recognizing the diverse lives and health needs of the
broader population demand practical, sustainable support from clinical managers. Implications
for Nursing Management: Practical suggestions for clinical managers to support point of care
research is provided, embedding vulnerable voices in policy, practice development and care
provision.
Keywords: case study; ethical nursing practice; research ethics; vulnerable populations
INTRODUCTION
Nursing and midwifery practice is framed by professional codes of conduct, ethics and
standards of practice. These frameworks seek to ensure the provision of care meets the
expectations of the community, the professions and individuals, contributing to the best possible
health outcomes for the recipient. The International Council of Nurses (ICN) and the
International Confederation of Midwives (ICM) provide the overarching ethical frameworks within
which all nurses and midwives must practise. Specifically, the ICN Code of Ethics for Nurses
(ICN, [21]) identifies four principal elements for ethical conduct: nurses and patients or other
people requiring care or services; nurses and practice; nurses and the profession; and nurses
and global health (p. 3). The ICM ([20]) International Code of Ethics for Midwives bases its core
ethical code on the recognition of women’s human rights and the role of the midwife in
supporting and advocating for women. Point 1c of the code states ‘Midwives empower
women/families to speak for themselves on issues affecting the health of women and families
within their culture/society’ (ICM, [20] p.1).
The concept of advocacy is foregrounded throughout both professional frameworks, explicitly as
per Element 1.7 of the ICN Code of Ethics (ICN, [21], p.7) or in a more nuanced manner
throughout the International Code of Ethics for Midwives (ICM, [20]). Accordingly, it is expected
that nurses and midwives build trusting relationships with the recipients of care, support them in
their healthcare decision making and advocate for change to provide the best possible health
outcomes.
People from disadvantaged or vulnerable backgrounds are over‐represented in poor health
statistics (Ford et al., [16]) and are often the most frequent seekers of care (Cruwys et al., [15]).
For many, engaging with health care providers is fraught with challenges, including, but not
limited to, access to care, understanding of need and adaptability of services (Byrne et al., [13];
Lewis et al., [25]). For many, non‐engagement with healthcare providers is reflective of an
overall disengagement with institutions more broadly and demonstrates a level of structural
vulnerability for the individual. Structural vulnerability is a term that describes the complex social
determinants that contribute to factors that result in poor health outcomes (Bourgois et al., [10]).
Further Bourgois et al describes structural vulnerability as ‘the outcome of a combination of
socioeconomic and demographic attitudes, in conjunction with assumed or attributed status’ (p.
4). Therefore, the vital role that nurses and midwives play in confronting these factors and in
facilitating patient engagement cannot be overstated.
Contemporary healthcare practice is based on evidence‐based knowledge (Boswell & Cannon,
[ 9]). However, in order to build an appropriate evidence base, rigorous and credible research
that meets a strict ethical criterion is essential. The fundamental importance of research
informing clinical practice is mentioned, albeit briefly, in both aforementioned codes of ethics.
Howe
ever, despite this, the role of nursing and midwifery researchers is often overlooked. Whilst
there is a strong focus on the ethics of providing quality clinical care, less consideration is given
to nurses and midwives involved in research. Hayes ([19]) clearly links the Code of Ethics
requirement that nurses should treat all people as equals, considering individual circumstances
to promote inclusivity and addressing ‘hidden coercive influences’ (p. 87). It is therefore
imperative that nurse and midwife researchers contribute to the building of a body of knowledge
in order to best advocate for all recipients of care.
The authors draw on their experiences of evaluating a project that included working alongside
and conducting research with a vulnerable population of pregnant women in prison (Baldwin et
al., [ 5]). Pregnant women in prison are considered vulnerable by their gender, incarceration,
pregnancy, culture and socio‐economic background (Baldwin, Sobolewska, et al., [ 6]). The
juxtaposition of clinical practice and the importance of engaging vulnerable populations in
primary research to hear the voices of those who may be silenced by complex social, cultural
and political influences is explored. The authors’ new insights demonstrate how practice and
research with vulnerable people are aligned, enhancing outcomes for theoretical understanding
and practical application. The need for primary research, centred around the most vulnerable is
highlighted, and suggestions will be made for future research involving vulnerable people,
without compromising the research process or compounding the participants vulnerabilities.
BACKGROUND
Ethical practice in research is not a new concept. In the aftermath of WWII, the urgent need to
protect the vulnerable resulted in the Nuremberg Code, followed in 1964 by the Helsinki
Declaration (Mandal et al., [26]). It is beyond doubt that the events leading up to the
development of these cornerstone documents dictated the need for regulation to prevent further
research activity that could result in harm, maim or even kill innocent participants. Since then,
formal ethics committees have become embedded into organizations that engage in research
(Brown et al., [12]). Alongside the growth of ethics committees, the definition of vulnerability has
evolved to recognize the many layers of vulnerability more accurately across communities.
Over time, restrictions on vulnerable people participating in research due to concerns about
causing them harm have increasingly been called into question, raising issues about the
exclusion of vulnerable groups from being represented in research (Hayes, [19]). For example,
non‐participation or exclusion from participating in research may in fact be placing vulnerable
populations at a further increased risk of harm (Juritzen et al., [22]). Using healthcare provision
in prison as an example of vulnerability in context, the lack of primary research with offenders is
apparent. There is an overall dearth of research about health in prisons, with most of the
evidence being drawn from statistical data provided by health services or research around
medical chart audits and reviews. This absence of the person and their lived experience of
healthcare delivery within prison indicates a significant gap in knowledge, particularly when
considered from the perspective of person‐centred care.
The complexities of vulnerability are well illustrated in the cases of incarcerated pregnant
women, with the recent development of formal recommendations to improve health and well‐
being outcomes for this group of mothers and babies (Baldwin, Capper, et al., [ 4]; Birth
Companions, [ 8]). The number of incarcerated women around the world is increasing, many of
which are of childbearing age, (Alirezaei & Roudsari, [ 3]; Gibson, [17]), are from poor socio‐
economic backgrounds and have higher levels of emotional and mental health trauma than the
general population (World Health Organization, [28]). Often women moving through the criminal
justice system lead chaotic lives, involving complex social issues, resulting in prison sentences
related to illicit drugs, violence and robbery (Breuer et al., [11]).
Pregnant women are regarded as a vulnerable population due to a perceived lack of capacity to
give informed consent for an unborn child and thereby are seen to pose a greater potential for
harm. Because of this classification of vulnerability, there has been a reluctance to undertake
research involving them. Despite this hesitancy, it has been suggested that the exclusion of
vulnerable populations may, in fact, cause them more harm as it further suppresses their voices,
thereby contributing further to their marginalization (Aldridge, [ 1]). Incarcerated women have
been described as ‘the most vulnerable population of women’ (Hayes, [19], p. 84). Therefore,
incarcerated pregnant women may be categorized as an evenmore vulnerable population.
The paradox of this situation is that pregnancy alone should not be considered the causation of
increased vulnerability as it is considered a state of well‐being rather than illness. Therefore, it
could be argued that it is in fact unethical not to undertake research with vulnerable populations,
such as pregnant incarcerated women as the need to elicit meaningful findings is paramount
with enormous potential benefits (Alexander, [ 2]; Krubiner & Faden, [23]). Further, current
evidence suggests that the prison environment may contribute to improved birthing outcomes
and being pregnant whilst ‘inside’ provides the incentive for a woman to transform her life with
positive birthing and effective parenting experiences offering an opportunity to interrupt the cycle
of recidivism (Shaw et al., [27]).
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