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Supporting Family Caregivers: No Longer Home Alone

Interrupting Biases in the Experience and Management of Pain

Booker, Staja Q. PhD, RN; Baker, Tamara A. PhD, MA; Epps, Fayron PhD, RN, FAAN; Herr, Keela A. PhD, RN, AGSF, FGSA, FAAN; Young, Heather M. PhD, RN, FAAN; Fishman, Scott MD

Author Information
AJN, American Journal of Nursing: September 2022 - Volume 122 - Issue 9 - p 48-54
doi: 10.1097/01.NAJ.0000874120.95373.40
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Figure:
A patient and family caregiver discuss the patient's pain with a health care provider. Photo courtesy of the AARP Public Policy Institute.

Fifty million Americans live with chronic pain,1 some of whom require care from a family member. An estimated 53 million adults representing diverse racial communities in the United States are family caregivers, and provide broad personal and medical support to their care recipient.2 Among those caregivers who assist with medical and nursing tasks, approximately 70% also manage their care recipient's pain—a responsibility most find stressful.3

Many family caregivers lack the knowledge, skills, and ability to understand what pain is and is not, properly identify pain, and work with the person with pain and health care providers to develop an evidence-based care plan. Nurses play an important role in offering education, support, and practical tools to family caregivers who manage pain. The purpose of this article, the first in a new series on pain, is twofold: 1) to provide nurses with guidance on how to explain pain to patients and family caregivers, and 2) to outline a person- and family-centered approach to all clinical interactions regarding pain management, especially with persons from minoritized4 backgrounds. Subsequent articles in this series will offer more detailed recommendations on working with family caregivers to assess, treat, and manage pain.

BACKGROUND

Family caregivers are uniquely positioned to support their care recipient in receiving proper pain management and treatment.5 However, caregivers have varied experiences and circumstances that may make caregiving, and pain management specifically, challenging and burdensome.6, 7 Depending on the care recipient's health status and communication capability, the complexity of recognizing and treating their pain will vary. Persons with pain may require substantial assistance with self-care, and it is essential that caregivers are able to tailor care to meet the needs of the care recipient. All caregivers must be equipped to assess and manage pain in order to improve the care recipient's quality of life.8

To support family caregivers and provide equitable care to persons living with pain, clinicians must understand three key points:

  1. Pain is a multifaceted phenomenon for both the patient and the caregiver, and their perception of pain is influenced by personal values, cultural traditions, physiological injury, disease, and life stage.9, 10
  2. A person- and family-centered approach is the best approach when working with persons with pain and their caregivers.
  3. The perception of pain has been misunderstood, dismissed, and overlooked, especially in underrepresented and racially minoritized care recipients and caregivers, who are likely to experience challenges navigating a complex, biased health care system.11

WHAT IS PAIN?

Pain has been defined as “an unpleasant sensory and emotional experience associated with, or resembling that associated with, actual or potential tissue damage.”12 A major role of nurses in educating family caregivers on pain is to explain the difference between acute and chronic pain, using examples of common conditions that would be familiar to the person with pain and the caregiver. For example, a clinician might explain acute and chronic pain this way (and have the person and caregiver “teach back” the information):

  • There are two major types of pain: acute and chronic. Acute pain develops suddenly and usually warns of a serious health issue or that your health has been compromised.13 It typically resolves with resolution of the health issue. Examples of acute pain might include new chest pain—a possible sign of a heart attack—or pain after a fall.
  • Chronic pain, on the other hand, is a long-term pain, usually lasting longer than six months or occurring frequently for more than six months.14 It does not resolve over time, and may worsen with time. Chronic pain may be caused by past injury or long-term health problems, such as osteoarthritis, diabetic neuropathy, and chronic migraines.

Pain can be easily overlooked by caregivers owing to their need to address other caregiving and personal priorities; patient stoicism; stereotypes that perpetuate ageism, sexism, and racism; and stigma associated with chronic pain. It is important for clinicians to teach caregivers and care recipients that, to prevent functional decline, it is equally as important to recognize, monitor, and manage pain as it is other chronic conditions.

PERSON- AND FAMILY-CENTERED APPROACHES FOR CAREGIVING FAMILIES

Person- and family-centered care is a team-based approach involving the patient, family caregiver, and provider in planning, delivering, and evaluating health care services.15 In this approach, care is personalized to the unique characteristics of the patient and the patient–caregiver dyad. The patient, caregiver, and provider are equally important within the relationship and thus participate jointly in decision-making. Including family members in pain management, particularly those from racially and ethnically diverse groups, may facilitate rapport building and shared decision-making, minimize inequitable treatment, and increase adherence to pain treatment, which may lead to improved patient outcomes.16, 17 When communicating with family caregivers, “pain management explanations should be consistent and allay any fears or misunderstandings regarding pain treatment, pain progression, and causes of pain.”16

Four general concepts underscore person- and family-centered care: dignity, information sharing, participation, and collaboration.15 Nurses can use these strategies to support person- and family-centered care in pain management.

Dignity. Always include and communicate directly with the person in pain—regardless of cognitive status—and the caregiver. It is a common mistake to exclude patients with dementia or developmental disabilities in key conversations about pain and treatment planning. Consider using the 4Ms framework18 to elicit more information from both parties on how the person's pain affects their mobility, mentation, medication use, and ability to do what matters to them, and to learn about their goals for pain care (for more on the 4Ms, see our previous articles in this series at https://journals.lww.com/ajnonline/pages/collectiondetails.aspx?TopicalCollectionId=38). Be sure to remind caregivers not to dismiss the person's report of pain. The value and importance of self-report cannot be overemphasized. In addition to health history and laboratory values, the patient's report, as well as that of the family caregiver, increases the likelihood that persons with pain receive appropriate treatment.8

Information sharing. It is important to respect how and when the caregiver and the person with pain provide information. Every culture responds to, expresses, and communicates the experience of pain and its impact differently, and preferences for types of treatment can also vary.17, 19, 20 Some cultures may value stoicism, while others may prefer being vocal and proactive in communicating their pain.17 In either case, because family caregivers spend a significant amount of time with the care recipient, it is critical to educate caregivers on how to recognize signs of pain, differentiate between acute and chronic pain, evaluate pain severity, and implement strategies to control pain. Language barriers and communication differences between the patient–caregiver dyad and the nurse must also be considered. Patterns of communication and the terminology of various cultures may not align with medical terminology, thereby creating challenges in mutual understanding. The result can be missed opportunities to clarify issues and identify key information that may be necessary for care. As such, it is essential to use clear and uncomplicated language when communicating with patients and caregivers.

Participation. Both the person with pain and the caregiver should participate in learning about pain, communicating with providers, and making treatment decisions. Often, racial and ethnic minorities are neither privy to nor have access to breakthroughs in medicine.21 Nurses should take the time to inform family caregivers, regardless of their race or culture, about new treatment options, understanding that a patient's cultural values may affect their selection of invasive or noninvasive treatment options, medications, or other therapies. The nurse might also need to refer the person in pain and the caregiver to a support group or to palliative care services if the pain is linked to a chronic disease or life-limiting illness. A nurse-led study found that a psychoeducational pain self-management intervention improved pain management knowledge and confidence in patients with cancer and their family caregivers.22

Collaboration. Although research suggests that family members may under- or overestimate a patient's pain,7 nurses should acknowledge that the caregiver's history with the patient allows them to identify changes in the patient's normal behavior or ability to complete self-care activities.23 Indeed, caregivers may recognize certain signs of pain that are unrecognizable to others, including to clinicians.8 In persons with dementia, for example, pain may be expressed through behavioral and psychiatric symptoms, rather than verbally.24, 25 In the hierarchy of pain assessment techniques, a framework to guide pain assessment recommended by the American Society for Pain Management Nursing, one technique is to obtain information through proxy reporting by informal or formal caregivers.26

ADDRESSING BIASES AND RELATED CHALLENGES IN PAIN MANAGEMENT

Person- and family-centered care also considers the influence of the historical, situational, and social history on the daily lived pain experiences of individuals from diverse racial and ethnic groups. Persons with pain and family caregivers who are racially underrepresented encounter numerous challenges that may or may not be apparent to clinicians, such as a lack of access to medical insurance, specialty care, and pharmacies that adequately stock certain pain medications. Nurses and other clinicians should initiate conversations with caregivers about pain and be aware of and sensitive to the issues and challenges caregivers may face in trying to manage the care recipient's pain.

The health care and pain experiences of racially minoritized individuals have been dictated by an existence historically embedded in discrimination, prejudice, oppression, biases, and exclusion.27-29 This suggests that health care providers, especially nurses, can become change agents by confronting and evaluating a health care system whose practices often disregard the needs of the poor and disenfranchised. In the context of pain, for example, by dispelling racist and ageist stereotypes based on inaccurate information (that Black patients are more likely to misuse opioids, for example, or that older adults are frail), we can begin to acknowledge the meaning and experience of pain for family caregivers and persons with pain.16, 30

Intersectionality. Racially minoritized individuals are more likely to experience negative attitudes and biases and to lack access to relevant services (such as preventive care, rehabilitation, and advanced technological services).31, 32 They are also in contact with providers who may be unfamiliar with their behavioral and psycho-sociocultural needs as minoritized persons presenting with pain symptomatology.33 In fact, people from racially and ethnically diverse backgrounds are more likely to experience underestimation and undertreatment of their pain.34 To understand their experiences, we must recognize how intersecting identities (such as race, gender identity, sex, and age) define their existence as individuals, persons in pain, patients, and care recipients. When presenting with pain, for example, an individual is presenting not only as a person of color, but with other intersecting characteristics as well.

Moreover, the caregiver's identity contributes to intersectionality in the family caregiving relationship. Differences in age or generation—which can add layers of complexity to social identity, family and career responsibilities, and education and health literacy—must be taken into account when educating caregivers and patients on pain.35 Some family caregivers may be older and have health issues themselves or be at risk for injury or worsening physical or mental health concerns. It is reported that approximately half of older caregivers have pain associated with health-related quality of life.36, 37 Assisting another person while experiencing pain yourself can be stressful and negatively affect quality of life.38 For that reason, it is important that caregivers recognize the effects caregiving may have on their mental and physical health and make time to attend to their own needs.

The social determinants of health. A critical aspect of caring for the patient–caregiver dyad is to understand how social determinants of health directly affect pain development and management. These determinants encompass five key areas—“economic stability, education access and quality, health care access and quality, neighborhood and built environment, and social and community context”—and define the systems by which people are born, grow up, live, work, worship, and age.39 Understanding the meaning of each determinant may prompt a better understanding of how to best prioritize pain treatment options using a person-centered approach (see Applying Knowledge of the Social Determinants of Health in Practice40-42). Knowledge of a patient's culture as it relates to pain-coping mechanisms is also valuable when working with caregivers to evaluate and manage a patient's pain.43 Additionally, the daily challenges of caregiving—compounded by the social determinants of health and bias—can add to caregivers' physical and emotional strain, including sleep deprivation, mental exhaustion, physical fatigue, and relationship stress. Clinicians can identify these adverse psychosocial effects by routinely assessing for family caregiver role strain and pain, and by guiding caregivers to appropriate medical, social, and community-based resources.

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Box 1:
Information for Family Caregivers

RESOURCES FOR CLINICIANS AND CAREGIVERS

Frequently, family caregivers do not know what questions to ask health care providers or do not feel empowered to engage in mutual conversations. Nurses can refer caregivers to the tear sheet, Information for Family Caregivers, which includes examples of questions to ask during health care visits—thus helping them to better advocate for themselves and their care recipient and to more confidently navigate the health care system.

FB2
Box 2:
Applying Knowledge of the Social Determinants of Health in Practice

Resources for Nurses

Note: Family caregivers can access these videos, as well as additional information and resources, on AARP's Home Alone Alliance web page: www.aarp.org/nolongeralone.

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