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P is for the Power in Words

ACLP Bulletin | Winter 2019 | VOL. 37 NO. 1


Erin K. Munn, MS, CCLS
Monroe Carell, Jr. Children's Hospital at Vanderbilt, Nashville, TN
 
"Good words are worth much, and cost little." (Herbert, 1651/1846, p. 302)

 

Words matter. As child life specialists, we have been taught throughout our education and training about the power of words to influence or “produce an effect” (“Power,” 2018). In our practice, we use person-first language to convey respect and to recognize that individuals are much more than just their illness or disability. We teach others to choose clear, unambiguous words that help children and families understand complex information. We advocate for an avoidance of words that can be unfamiliar, confusing, or threatening to children. We choose our own words carefully when preparing and supporting children and families during stressful experiences, using “the softest language that is honest” (Goldberger, Thompson, & Mohl, 2018, p.295) to promote more manageable appraisal.

Just as our education and training informs our word choices, our colleagues and professional culture also shape the words we use. We may adopt specific words because these are the terms most commonly used in our professional setting, and we hope to connect and communicate more easily and concisely by using the same language. The words we adopt in this way may communicate more than we intend, however. As Plutarch, a Greek philosopher and author, wrote, “…speech must be considered as it were the exposing of the mind… For in words are seen the state of mind and character and disposition of the speaker” (Plutarch, c.100/2007, p. 78).

Despite the shift toward patient- and family-centered care, some terms persist in pediatrics as holdovers from the traditional medical model of care. The traditional medical model, often described as paternalistic, views the physician and other healthcare professionals as the experts, retaining power and control over the care process, while patients are viewed as dependent and passive recipients of care (Anderson, 1995). Patient and family-centered healthcare approaches maintain that partnership between professionals, patients, and families is essential in shifting away from doing “to”or “for” patients and families toward working “with” them in the planning, delivery, and evaluation of care (Institute for Patient- and Family-Centered Care, n.d.). With this paradigm shift, the construct of power in the relationship between professionals and patients and families moves from simply the view of power as authority, or power “over” to power “with,” or shared power and empowerment.
When we use terms rooted in the traditional model of care, we risk aligning ourselves with the underlying values and perspectives of that paternalistic, professional-centered model rather than the values and tenets of patient- and family-centered care that form much of the foundation for child life practice. Because we understand the power of words, we must also consider the power in words. Are the words we use empowering or are they paternalistic, with an inherent, unspoken construct of power as “control, authority or influence over others” (“Power,” 2018)?

Consider the terms compliance and noncompliance, still commonly used in referring to patients taking medications or following through with other health regimens. The dictionary definition of compliance is “the act or process of complying to a desire, demand, proposal, or regimen or to coercion” (“Compliance,” 2018); the definition of the root word comply is “to conform, submit, or adapt (as to a regulation or to another’s wishes) as required or requested” (“Comply,” 2018).


When we use terms rooted in the traditional model of care, we risk aligning ourselves with the underlying values and perspectives of that paternalistic, professional-centered model rather than the values and tenets of patient- and family-centered care that form much of the foundation for child life practice.

The definition alludes to the power inherent in the outside influence or pressure that leads to a person’s conforming behavior. In medical use, compliance has been defined by Haynes, Taylor, and Sackett as “the extent to which a person’s behavior coincides with medical or health advice” (as cited in Lutfey & Wishner, 1999, p.635). As a concept, even the medical definition of compliance implies a difference in power. The underlying connotation is that the patient’s behavior is important only in relation to the advice of the professional as the expert and authority; the patient’s task is to obey the instructions of the professionals.

When patients’ behavior does not “coincide” with medical advice, the term used is noncompliance, defined as “failure or refusal to comply with something (such as a rule or regulation); a state of not being in compliance” (“Noncompliance,” 2018). With the focus on patient behavior as the source of noncompliance (in failing or refusing to comply), patients receive the label “noncompliant,” which often carries many negative, even blaming, connotations about the patient—that they are difficult, uncooperative, irresponsible, disobedient.

In recognition of the shift in the 1990’s and 2000’s away from the paternalistic healthcare paradigm toward more patient-centered paradigms, the concept of adherence began to take prominence as an alternative to compliance. Adherence is defined as “the act, action, or quality of adhering (adhere: to hold fast or stick)” (“Adherence,” 2018), and nonadherence is defined simply as “the lack of adherence” (“Nonadherence,”2018). With fewer connotations of blame, there is more room within the concept of adherence to acknowledge and consider barriers beyond the patient’s behavior, placing patients and professionals in a more neutral power construct. This shift in terms has been noted in the medical literature as well, with adherence becoming the preferred term in publications in recognition of the changes in patient-professional relationships to reflect partnership and collaboration (Aronson, 2007; Bissonnette, 2008; Hicks & Davitt, 2018; Lutfey & Wishner,1999; McKay & Verhagen, 2016; Tilson, 2004).

Much attention to the concepts of compliance and adherence has occurred in the field of diabetes care. Researchers and educators in diabetes care contend that, as a conceptual framework, adherence doesn’t go far enough to recognize the essential component of collaboration in the process of developing individualized care plans and ongoing management of diabetes (Anderson & Funnell, 2000; Glasgow & Anderson, 1999). They proposed the term self-management as a more appropriate conceptual framework for the range of behaviors patients must perform on a daily basis in managing life with diabetes, an approach that has been described as a patient empowerment model. Though self-management, as a term, has been adopted by many in the field of diabetes, including the American Diabetes Association (Glasgow & Anderson, 1999), adherence continues to be more widely used in the general medical literature.
Though the terms compliance/noncompliance and adherence/nonadherence have received the most attention in the medical literature, other words may also be identified as having connotations of power that align more with a paternalistic viewpoint and less with the values and principles of patient- and family-centered care (see Figure 1). In a previous Child Life Alphabet article, “V is for Volition,”Mohl and Goldberger (2014) touched on this in their examination of the distinctions between the terms “distraction” and “planned alternate focus” in describing child life procedural support interventions. The authors explained that by engaging children’s volition in the process of identifying coping strategies, child life specialists transform distraction into planned alternate focus. They argued that the term distraction holds the professional at the center of care with the patient as a passive recipient, while the term “planned alternate focus” positions the patient and family as active agents at the center of their experience. In choosing the term “planned alternate focus,” we can communicate more clearly our fundamental goal of empowering children and families to gain “a sense of mastery that will carryover into future challenging situations” (Mohl & Goldberger, 2014, p. 1).



Figure 1
 

If we intend to advocate for empowering experiences for children and families and to model empowerment practices for others, we must also be intentional in choosing language that reflects our belief in the power and agency of the children and families we serve. Meaning has been defined as “what is intended to be,or actually is, expressed or indicated; signification;import” (“Meaning,” 2018). It has an objective component (i.e., the dictionary definitions of the words we use) and a subjective component (i.e., the information the receiver connects to the words we use). Our control of the message we intend ends with the words we choose. Once the word or phrase leaves our mouths,our pen, or our fingertips on a keyboard, it is interpreted by the listener/reader who attaches meaning to the sounds they hear or the words they see, and who infers meaning through the lens of their own experiences, knowledge, beliefs and emotions.

Words such as compliance, noncompliance, comply, distraction, and allow hold objective and subjective meanings that reinforce the traditional, paternalistic view of power in the hands of the professional as authority and expert. To move away from words that align with the professional-centered paradigm toward words that truly reflect the values and principles of patient- and family-centered care requires us to consider both the definitions and what meanings maybe inferred by others from the words we choose. By choosing words that position patients and professionals in a more neutral context, such as adherence and nonadherence, and those that position patients and families in empowering contexts, such as self-management and planned alternate focus, we will communicate more clearly our own beliefs and attitudes toward the children and families we serve.

REFERENCES

Adherence (2018). In Merriam-Webster.com. Retrieved October 8, 2018, from https://www.merriam-webster.com/dictionary/adherence

Allow (2018). In Merriam-Webster.com. Retrieved October 8, 2018, from https://www.merriam-webster.com/dictionary/allow

Anderson, R.M. (1995). Patient empowerment and the traditional medical model: A case of irreconcilable differences? Diabetes Care, 2(3), 412-415.

Anderson, R.M. & Funnell, M.M. (2000). Compliance and adherence are dysfunctional concepts in diabetes care. The Diabetes Educator, 26(4), 597-604.

Aronson, J.K. (2007). Compliance, concordance, adherence. British Journal of Clinical Pharmacology, 63(4), 383-384.

Bissonnette, J.M. (2008). Adherence: A concept analysis. Journal of Advanced Nursing, 63(6), 634-643.

Compliance (2018). In Merriam-Webster.com. Retrieved from https://www.merriam-webster.com/dictionary/compliance

Comply (2018). In Merriam-Webster.com. Retrieved from https:// www.merriam-webster.com/dictionary/comply

Cooperate (2018). In Merriam-Webster.com. Retrieved from https:// www.merriam-webster.com/dictionary/cooperate

Cross, J.N, Desai, P.P., Palm, S., Bell, J.L., Johnson, B.H. & McLeod, S.M. (2009). Patient- and family-centered care and the implications for child life practice. In R. H. Thompson (Ed.), The handbook of child life: A guide for pediatric psychosocial care (2nd ed., pp 161-194). Springfield, IL: Thomas.

Disempower (2018). In Merriam-Webster.com. Retrieved from https://www.merriam-webster.com/dictionary/disempower

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Encourage (2018). In Merriam-Webster.com. Retrieved, from https:// www.merriam-webster.com/dictionary/encourage

Glasgow, R.E. & Anderson, R.M. (1999). In diabetes care, moving from compliance to adherence is not enough. Diabetes Care, 22(12), 2090-2092.

Goldberger, J., Thompson, R.H. & Mohl, A.L. (2018). Psychological preparation and coping. In R. H. Thompson (Ed.), The handbook of child life: A guide for pediatric psychosocial care (2nd ed., pp. 268-316). Springfield, IL: Thomas.

Herbert, G. (1651/1846). Jacula prudentum: Or outlandish proverbs, sentences, etc. selected by Mr. George Herbert. In The works of George Herbert in prose and verse (pp. 293-351). London: William Pickering. Retrieved from https://play.google.com/books/ reader?id=_xCtmFfgShgC&pg=GBS.PR10

Hicks, M. & Davitt, K. (2018). Chronic illness and rehabilitation. In R. H. Thompson, (Ed.), The handbook of child life: A guide for pediatric psychosocial care (2nd ed., pp. 446-491). Springfield, IL: Thomas.

Institute for Patient- and Family-Centered Care. (n.d.). Patient- and family-centered care. Retrieved from http://www.ipfcc.org/about/ pfcc.html

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McKay, C.D. & Verhagen, E. (2016). ‘Compliance’ versus ‘adherence’ in sport injury prevention: Why definition matters. British Journal of Sports Medicine, 50, 382-383. doi:10.1136/ bjsports-2015-095192

Mohl, A.L. & Goldberger, J. (2014). V is for volition: Turning distraction into planned alternate focus. Child Life Council Bulletin, 32(1), 1, 10

Nonadherence (2018). In Merriam-Webster.com. Retrieved from https://www.merriam-webster.com/dictionary/nonadherence

Noncompliance (2018). In Merriam-Webster.com. Retrieved from https://www.merriam-webster.com/dictionary/noncompliance

Plutarch (c. 100/2007). Plutarch’s morals: Ethical essays. (A.R. Shilleto, Trans.). Urbana, Illinois: Project Gutenberg. Retrieved from https://www.gutenberg.org/ebooks/23639

Power (2018). In Merriam-Webster.com. Retrieved from https://www. merriam-webster.com/dictionary/power

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Tilson, H.H. (2004). Adherence or compliance? Changes in terminology. The Annals of Pharmacotherapy, 38, 161-162. doi 10.1345/aph.1D207

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