Figure:

Family caregivers attend a support group. Photo courtesy of the AARP Public Policy Institute.

Most family caregivers identify pain management as a stressful task.1 Experiencing this stress and not sufficiently attending to self-care because of caregiving responsibilities can negatively affect the caregiver's health—as well as that of the care recipient.

Nurses across settings are instrumental in supporting family caregivers in managing pain. Working with caregivers to identify effective strategies to address their needs can empower caregivers in their role. In this article, we discuss specific challenges caregivers face related to pain management and outline evidence-based recommendations and resources nurses can use to promote caregiver health and well-being.

BACKGROUND

Nearly half of family caregivers handle medical and nursing tasks for their care recipient, including managing pain.1 Pain management usually requires assessing and monitoring pain levels, making decisions about using and coordinating pharmacological and nonpharmacological treatments, and monitoring adverse effects. This can be complicated by multiple chronic conditions and pain sites, and by limited access to health care services for persons in underrepresented groups.2-4 Without adequate support, many caregivers feel exhausted by the effort required to manage the care recipient's pain regimens and report inadequate time for self-care.5, 6

The experience of pain and its management can also strain the caregiver–care recipient relationship. Both individuals may become frustrated, especially when pain is not adequately addressed. Chronic pain can influence family dynamics, affecting the caregiver and care recipient's mental health.7 Conflict may also arise over opposing views about the scope of the caregiver's role and disagreement about the care recipient's condition and care plan.8

Although managing pain can negatively affect caregivers, caregiving may also generate feelings of pride and satisfaction.9-11 These rewards emerge throughout the caregiving process and can promote caregiver well-being.12

PAIN-RELATED CAREGIVING CHALLENGES

Family caregivers face diverse concerns and challenges when supporting people with pain. These include caregiver health issues; time constraints; financial strain; discrimination; and inadequate knowledge, resources, and communication—all of which may contribute to insufficient pain management and generate stress.5

Caregiver health issues. Since about 20% of caregivers are older adults themselves (over the age of 65),13 their own health conditions can affect their caregiving abilities. Additionally, health deterioration from stressors associated with caregiving, such as anxiety, sadness, and loneliness, is common.14 Stress also contributes to health risk behaviors like tobacco and alcohol use.15 As the caregiver's health declines, managing the care recipient's pain becomes more difficult and the care recipient's needs may be unmet.

Caregivers may find that managing the care recipient's pain affects their sleep quality, leading to fatigue and preventing them from participating in their own daily activities.16 Care demands and related conflicts can also cause caregivers to experience social isolation and withdraw from social activities and relationships.17

Time constraints. Caregivers who also work may have difficulty balancing competing demands. Working caregivers, predominantly women, often find pain management especially difficult when the care recipient requires around-the-clock care. Pain regimens may have to be adjusted to accommodate caregiver schedules, which may not be optimal for the person living with pain.

Financial strain. Caregivers often reduce their work hours or take a break from their jobs and are less likely to return to work after their caregiving responsibilities end.18 These circumstances can lead to financial strain; as a result, caregivers may not be able to afford their care recipient's health care costs, including pain interventions, or their own leisure or self-care activities.19

Discrimination. Clinician bias in the form of racist and ageist beliefs can contribute to caregiver strain and impede appropriate pain management. Health systems are not always well prepared to deliver culturally and linguistically congruent care.20

Lesbian, gay, bisexual, transgender, and queer and questioning (LGBTQ+) caregivers may be more likely to face discrimination in the health care system21 as well as caregiving-related discrimination in the workplace,13 which can interfere with their ability to provide effective pain management. Owing to prior experiences with discrimination, some LGBTQ+ caregivers hesitate to use programs and services designed to alleviate caregiver stress.21

Inadequate knowledge, resources, and communication. Some caregivers may not have adequate access to caregiving-related information and services. Caregivers who live in rural areas, for example, report a lack of pain management knowledge22 and usually have less access to resources to ease caregiver burden. (In contrast, caregivers in urban or resource-rich areas may find it overwhelming to determine what resources are best for their needs.) Lahr and Henning-Smith summarize national and state-level organizations that provide caregiver support and education services to rural communities.23 Caregivers in any location can visit their state's AARP website (https://states.aarp.org) or www.communityresourcefinder.org to find reliable local resources.

Care recipients with cognitive impairment or developmental disability may have difficulty communicating with their caregiver and the health care team about their pain, making assessment and management difficult.24 As a result, their caregivers must act as advocates in health care settings, creating added worry, responsibility, and burden.25

When the care recipient–caregiver dyad and the health care team do not share the same primary language, communicating about pain can be challenging—and can lead to missed opportunities to gather important information from caregivers and teach them to recognize pain cues.20 Not completely understanding medication regimens can make medication management more complicated and confusing.26 Culturally competent, language-specific information on medication management is lacking in different formats (visual, verbal, written).26 Moreover, caregivers who lack English proficiency may feel unable to adequately communicate concerns or needs to the health care team—or feel they are not being understood—resulting in hesitation to reach out to them.27 Limited English proficiency may also add to the challenges faced by racially underrepresented or immigrant caregivers, including not being heard, worrying about making a mistake, and experiencing greater strain.1, 13

IMPROVING CAREGIVER HEALTH AND WELL-BEING

While poor caregiver physical and psychological health may seem unavoidable, health-promoting self-care activities and psychosocial support and resources can mitigate some of the negative effects of caregiving.

Health-promoting self-care activities. Good sleep, regular physical activity, and healthful dietary patterns are leading protective strategies for good health and well-being.28, 29 Engagement in these strategies tends to be compromised among caregivers30, 31 due to caregiving demands, anxiety, and depression.32

Adequate sleep is essential. Behavioral factors (such as consumption of caffeine or alcohol, decreased physical or social activity, excessive fluid intake before bedtime) and environmental factors (such as bedroom light, noise, high or low temperature, pets) can disrupt sleep.33 Addressing these factors can help caregivers get the recommended seven hours of sleep per night.34 Caregivers who live with their care recipient may benefit from a dyadic approach to sleep assessment, which includes considering where the dyad sleeps—in the same bed or in separate rooms—and addressing related concerns.32 Sharing a room at night, for instance, may compromise sleep quality despite reducing caregiver burden. Nonpharmacological sleep interventions, such as using ear plugs or an eye mask, may be considered depending on the situation.35 Relaxation and mindfulness techniques and cognitive behaviorial therapy can also improve sleep quality among caregivers.33

Regular physical activity involves participation in light, moderate, and/or vigorous activities. It may occur within a planned and monitored fitness program or incidentally as part of daily life or leisure activities. The benefits of many types of physical activity have been studied among caregivers, including brisk walking, dancing, stretching, strength training, yoga, and tai chi.36 Most of these can be performed individually or in groups and at no cost. Caregivers may experience positive psychosocial effects from group-based physical activities owing to the socialization opportunities they provide.36 For caregivers with time constraints, incorporating exercise into daily activities (for example, walking during lunch or using the stairs instead of an elevator) might be an option. Even 20 to 30 minutes of moderate to vigorous intensity aerobic exercise has been found to reduce stress for several hours afterward.37

A healthy dietary pattern includes consuming whole fruits and vegetables, whole grains, low-fat dairy, protein, and vegetable and nut oils; maintaining adequate hydration; and limiting foods and beverages high in added sugar, saturated fat, and sodium.28 Planning meals that meet nutritional needs is crucial for the health and well-being of both the care recipient and the caregiver. Coaching caregivers on the dietary needs of their care recipient provides an opportunity for nurses to impart knowledge and skills caregivers can use in their own meal planning. Dietary choices should reflect personal preferences, cultural traditions, and financial considerations. Additionally, for some, grocery shopping and cooking can serve as enjoyable leisure activities. Steinberg and colleagues provide practical information and resources for nurses in promoting good nutrition among caregivers and care recipients.38

Self-care activities for caregivers can also include any regular activities they enjoy, such as gardening, worship or prayer, journaling, and spending time with family and friends. Meditative activities, including mindfulness and mantra meditation, can help caregivers cope with their emotions and experiences, and can also alleviate depression, anxiety, and stress.39 (Several free online relaxation exercises for caregivers are available at www.caregiver.org/resource/caregiver-relaxation-exercises-series-english.) Another helpful strategy is to write down three positive things that happened each day along with a rationale for choosing each one; this activity can be effective in decreasing depression and increasing happiness and is easily done independently.9, 40

A key health-promoting activity caregivers may neglect is attending to their own health care, including screenings and checkups, seeking care for illness, and managing chronic conditions. Health checkups are particularly important for caregivers with chronic conditions and preconditions, whose self-care capabilities might be compromised by their caregiving tasks.

Psychosocial support and services. Professional services may support health-promoting self-care activities among caregivers. Group educational activities provide caregivers with information on disease processes and training in the strategies and skills needed to support both pain management and self-care activities. Peer support programs are a common intervention for caregivers; they may be peer or professionally led and include structured discussion groups that bring caregivers together to connect. Peer support groups have a positive effect on caregiver participation in healthful behaviors, as well as on coping ability, knowledge, social support, and reducing depression.41

Individual psychotherapy can be beneficial in supporting caregivers' mental health.42 Nurses can teach caregivers to identify signs of personal distress, to know when to seek help, and to find available resources as well.

Respite care—which includes home care, day care, and institutional care services—can give caregivers a break from caregiving tasks, thus allowing time for self-care activities.43 Receiving respite services can improve caregiver mental health and decrease care burden.43 To ensure expedient intervention, nurses should work with caregivers and care recipients to address the timing, type, and frequency of respite care. Caregivers can also use Eldercare Locator (https://eldercare.acl.gov) to find local respite resources.

Finally, mobile apps designed for family caregivers can provide resources and tips for self-care, forums to connect with other caregivers, and access to trained providers; most are freely available.42, 44

RECOMMENDATIONS FOR CLINICIANS

For nurses and other health care providers, awareness of the challenges caregivers face in managing their care recipient's pain and being proactive in addressing those challenges are key to offering appropriate guidance and implementing strategies to support caregiver well-being.

Involving caregivers in care planning and incorporating their feedback on the caregiving role can help ensure that their needs are addressed, and also creates opportunities for them to share their thoughts, questions, and concerns with the health care team. Nurses can facilitate productive discussions with caregivers on prioritizing and delegating caregiving tasks—discussions that should consider the resources and preferences of both the caregiver and the care recipient. It is important for health care providers to acknowledge that pain management can be stressful and to assist caregivers in accessing additional support and referrals to specialists. Acknowledging the caregiver's contributions also helps build a more trusting relationship.

Primary care teams are well positioned to encourage ongoing dialogue with caregivers about the caregiving experience.45 In acute care settings, the Caregiver Advise, Record, Enable (CARE) Act, enacted in 45 states and territories, requires identifying caregivers of hospitalized persons upon admission and including caregivers in care and discharge planning.46 This promotes the health care team's engagement in alleviating caregiver concerns and preparing them for care transitions. Listening carefully can help facilitate these conversations.

RESOURCES FOR CLINICIANS AND CAREGIVERS

Table 1 provides tips for nurses on communicating with caregivers about their health and well-being and supporting their engagement in self-care activities. Nurses can also refer family caregivers to the tear sheet Information for Family Caregivers, which summarizes strategies caregivers can use to promote their own well-being.

Table 1. - Communication Tips for Nurses: Caregiver Well-Being and Self-Care Concerns and Challenges Caregiver Exemplar Statements Recommendations for Nurses Caregiver physical and mental health deterioration

My health is getting worse. I have lost control of managing my chronic conditions.

I don't sleep well.

I don't eat well.

I no longer experience happy times.

I feel like I can't go on another day.

I feel depressed.

I feel trapped.

Discuss the value of taking a break and accepting help from others.

Listen to the caregiver's experiences and find ways to support them.

Encourage caregivers to prioritize health-promoting goals and engage in self-care activities. Help them create a manageable and flexible plan.

Discuss possibilities for physical activity and/or other pleasant activities for both the care recipient and caregiver. Address barriers to participation as well as potential resources.

Encourage caregivers to consult with their health care provider about managing their own health conditions.

Identify relevant local support groups and encourage participation.

Discuss timing and availability of respite care.

Social difficulties for caregiver and care recipient

The person with pain is depressed, sad, angry, or irritable. I find it hard to be around them.

I feel like we miss our friends and community.

I feel like we are persistently in conflict.

Engage both the caregiver and care recipient in a conversation about spending pleasant time together. Points to discuss can include the

preferred type of activity.

caregiver's schedule.

care recipient's health care needs.

times when the pain is better controlled.

Identify relevant local support groups and encourage participation.

Box 1:

Information for Family Caregivers

Resources for Nurses Self-Care, Resources, and Techniques https://links.lww.com/AJN/A235

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

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