SANDY,* AGE 57, has been married for 35 years to Joseph, her college sweetheart. Recent economic difficulties have dealt them the triple hardships of coping with a job loss, trying to sell their home in an undervalued market, and consequently living in separate states. At the start of 2012, Sandy was living in Ohio, along with most of their family, and Joseph was in California, where his job is. Their oldest daughter Jen is married, has a young son, Benjamin, and lives near the family home in Ohio.
During the holidays and into the new year, Jen was tired. But because she was busy with work, school, and childcare, she didn't worry too much about her fatigue-until she noticed some rectal bleeding.
A medical workup followed. The diagnosis was Stage III colorectal cancer. Jen was 27 years old. Because colorectal cancer is exceedingly rare at this young age, her prognosis was uncertain. As Jen's mother, Sandy wanted to help. She stayed close to Jen during the next 9 months of intense treatment. Initial surgery included a total colectomy; a prophylactic hysterectomy and bilateral salpingo-oophorectomy were also performed to eliminate sites for possible metastases in the future. A diverting ileostomy was created. Radiation and chemotherapy completed the initial medical plan.
Throughout the treatments, Sandy helped Jen by attending appointments with her, caring for Benjamin, cleaning the house, and doing laundry and yard work. She simply said, "This is about Jen, her husband, and her son. I wanted to be there for them."
Sandy's trips to California were severely curtailed during Jen's treatment. Joseph came to Ohio for a few weekends during these months, but he was sheltered from some of Jen's worst times. Sandy, on the other hand, often took the brunt of Jen's anger, despair, or frustration. She frequently felt in the line of fire: Joseph wanted her with him in California and Jen depended on her mom. Pulled between her husband and her ill adult child, Sandy often felt overwhelmed.
The nursing profession takes into account the whole experience of health and illness for the patient, including family and friends, or nonprofessional caregivers. However, evidence-based interventions to ameliorate the physical and emotional effects on chronic caregivers like Sandy are relatively few. This article reviews the literature exploring the caregiver's experience, describes strategies to decrease the burden of this experience, and gives practical advice for incorporating this evidence into nursing care.
Critical element
The family caregiver role is essential in an effectively functioning healthcare system. Approximately 30 to 38 million family caregivers in the United States provide care for about 90% of dependent individuals with acute and chronic physical illness, cognitive impairments, and mental health disorders.1 Family caregivers include relatives, partners, friends, and neighbors who assist with activities of daily living and complex healthcare needs that were once the domain of hospital personnel. Family members, not paid caregivers, provide the vast majority of home healthcare.2
Patient- and family-centered care recognizes the vital role that families play in ensuring the health and well-being of family members of all ages.3 A careful nursing assessment is necessary to determine how patients define "family." For example, parent caregivers are typically thought of as those caring for a minor child, but parents can be important caregivers for adult children as well.4 The CDC and others recognize that the definition of "family caregivers" includes friends and neighbors, as well as relatives.2,5,6 A small army of seen and unseen individuals may be behind each patient.
Generally speaking, family caregivers receive little training on how to deliver care, aren't treated as partners in their loved one's treatment plan, and aren't encouraged to maintain their own health. Not surprisingly, they may be at increased risk for health, emotional, financial, and work-related problems. They may need assistance developing the problem-solving, organizational, and communication skills that the situation demands.7-11
Researchers weigh in
Grant and colleagues described burden, preparedness, and quality of life for caregivers of patients with lung cancer.12 They found that perceived preparedness and quality of life decreased over the duration of caregiving. These findings highlight the need to support caregivers throughout the illness trajectory.
The role of caregiver is frequently subjugated or seen as not as important as other roles, such as the breadwinner role. Although those working outside the home may be able to take a sick day when they're ill, family caregivers say they have no time to be ill, especially if they aren't as seriously ill as the patient. Care for self must be valued to meet the physical, emotional, and spiritual demands of caregiving.
A meta-analysis by Stenberg et al. of 192 articles about caregivers of patients diagnosed with cancer revealed that most are women (63.5%) with a mean age of about 54.13 They concluded that physical, social, and emotional problems and burdens impacted their lives daily, with social and emotional problems being the most troublesome.
Patients depend on family caregivers to assist with daily activities, manage complex care, navigate the healthcare system, and communicate with healthcare professionals. The National Cancer Institute recognized the utmost importance of information at every stage of caregiving: at the time of diagnosis, during hospitalization and treatments, during transitions to home and home care, after treatment, and for end-of-life care.14 The physical, social, financial, psychological, and spiritual impact on the caregiver was highlighted in conjunction with the positive aspects of caregiving.
Mosher and colleagues suggest that while many family caregivers of patients with lung cancer experience negative physical and mental health effects, they also experience improved relations with both the patient and other family members.15 Both positive and negative aspects should be considered when assessing caregiver burden.
Assessing caregiver stress
Skalla et al. examined effects of caregiving for patients with cancer and found the top four issues were fatigue, anxiety, insomnia, and weight gain.16 Negative health consequences included anxiety, insomnia, fatigue, muscle strain, headaches, and abdominal pain.
But Robison et al. concluded that caregiving per se doesn't lead to poor health outcomes.17 Other factors, such as living with the care receiver, inadequate income, and unmet needs for community-based long-term-care services, were predictive of multiple negative outcomes. Urban and rural settings for caregiving appear to play no important role in the perception of caregiver stress.18
The 2008 landmark State of the Science Report, "Professional Partners Supporting Family Caregivers," documented that caregiving can give meaning to the lives of caregivers, strengthening their relationships with others.19,20 This report was the result of collaboration between the AARP Foundation, American Journal of Nursing, Council on Social Work Education, Family Caregiver Alliance, and Rutgers-Center for State Health Policy. This same report recognizes that family caregiving requires psychomotor, cognitive, and psychological skills; family caregivers need both knowledge and skills.21
What helps?
A meta-analysis by Candy et al. looking at 11 trials involving 1,836 caregiver participants found that directed interventions in the form of emotional support and advice on coping helped emotional coping and caring, and improved quality of life for caregivers, even without additional hands-on or practical help.22 However, the need for caregiver competence in specific technical skills and tasks shouldn't be underestimated. Caregivers who are confident in their ability to perform physical care tasks reported feeling much more supported than those who were technically unsure. Tamayo and associates found that education about administering medications and managing adverse reactions was identified by caregivers as especially crucial.23
Spirituality's role
Skill development is best achieved when the caregiver has developed an acceptable explanation for the meaning of the caregiving experience. This can be expressed as spirituality and through religious practices. Spirituality can be defined as acknowledgment of a power greater than oneself.24 Spirituality may or may not include religion. Religion or religiousness implies adherence to an organized system of beliefs or rituals that includes a relationship to a higher power.24 Both religion and spirituality can help caregivers give meaning to their work.
Ascribing a reason for the caregiver situation seems to provide some protection from the negative mental consequences of serious illness and caregiver burden. Spirituality can improve emotional resilience, decrease depression, and lead to a better adaptation to illness.25
Spirituality is recognized as an important component of holistic care and has been viewed as a relatively stable trait in adults.26 Newberry et al. found inverse correlations between depressive symptoms and anxiety when paired with higher reports of spirituality.27 Attendance at religious services coupled with support from family and friends resulted in the lowest psychological distress from negative life events in one study by Kidwai et al.; support from family and friends and low religious service attendance showed a similar, although less pronounced, positive effect.28
Religiousness and spirituality don't prevent spiritual pain, however. Despite identifying religion and spirituality as sources of positive coping, caregivers of patients with advanced cancer have reported anxiety, depression, denial, and overall lower quality of life.29 Given the more pronounced negative psychological effects of prolonged caregiving, spiritual interventions are essential to a holistic family-centered plan of care.
Young adult patients
Dr. Anne Grinyer, a medical sociologist at the Institute for Health Research, Lancaster University in the United Kingdom, has researched the effects of a serious illness of a young adult child on the mother's health.30 She notes that "there is a strong cultural assumption in Western society that our children should outlive us and it is incredibly hard for parents to see their child predecease them." This attitude may lead them to discount their own health needs with serious consequences for their own health.
Grinyer articulates the realities of a very difficult situation. "All families are different and the danger is that you try to do for everyone." The preexisting family dynamics must be considered: "If there were any cracks beforehand, they are only going to get worse. Life-threatening illness does not make everyone suddenly like each other; it just puts everybody under terrible pressure. The more honest the communication, the better it is for everyone. Problems arise when everybody is trying to protect everyone else. A climate of openness, honesty, and trust can strengthen the family" (personal communication, August 20, 2010).
This can be especially important and difficult when the patient is a married adult child and both the patient's spouse and the parents vie for information and control. The spouse and parents may enter into a power struggle, changing the focus of caregiving from supporting the ill person to mediating family relationships.
Raveis and colleagues recognized that family dynamics influence quality of life for both patient and family members, the patient's willingness to undergo certain types of treatments, and the patient's ability to recover.31
Include caregivers in patient education
Discharge planning and teaching patients about home care are widely recognized as key nursing skills. Including family caregivers in education about home care (with the patient's consent) is an essential part of the discharge plan.32
Ask the patient explicit questions like this: "When you're at home, does someone help you with household chores or bathing and dressing? May we include this person when we discuss your care at home?"
Teaching home care skills in a real-world setting, within time frames and conditions that work for home caregivers, is an expert skill. The skill demands a caring, integrated approach to relieve anxiety and minimize burden for the entire family. Excellent nursing care for the caregiver of an adult with a serious chronic illness has three key components.
* Recognize that family caregiving is the norm for home care providers. Purposefully assessing family roles in caring for the patient and encouraging the patient to include caregivers in care planning must be the first step.
* Understand that caregiving can be both a burden and a blessing. The nurse is pivotal to discerning caregivers' perceptions of their responsibilities and the meaning they give to their caregiving experience. Ask caregivers to "tell the story" behind their experiences. Listen with attention and without interruption, and then verify areas of need.
* Realize that caregivers are the best source of information about the adequacy of teaching received from the healthcare team. Ask them for topic-specific feedback on such topics as their knowledge of medical treatments, medications, and symptoms requiring intervention; their comfort level with emergency care; their ability to communicate openly and considerately with the patient; and their own health and well-being.
Through attentive listening, nurses can identify family caregivers' perceived skill needs and plan additional education as needed. (See Evaluating the perceived sufficiency of caregiver education and support.)
Family caregivers may also be helped by advice from nurses on how to communicate with healthcare professionals and their loved ones. See Communication tips for family caregivers, which may be suitable as a handout for caregivers.
Seek out online information and support.32,33 For example, the Family Caregiver Alliance from the National Center on Caregiving (http://www.caregiver.org) has a website that offers both information and resources for emotional support.
Although many websites are excellent, they must all be carefully assessed for credibility as with any other reference or resource. Be sure to show caregivers how to do this. (See Assessing website information and the http://www.nursing2015.com online article, Search engine secrets: Finding reliable health information.)
Based on consultation with pastoral care, nurses may be able to identify caregivers who may be at greater risk for anxiety, stress, and depression.27,34
The recently released Commission on Long-Term Care: Report to the Congress addresses the importance that family caregiving has on care and the workforce.35 Recommendations useful for nurses and caregivers include the following:
* Family nonprofessional caregivers should be consulted and included early in the care planning process. This is crucial for successful outcomes.
* Family caregivers must be identified in the electronic documentation.
* Access to relevant information through readily available technology should allow the family caregiver to easily navigate the electronic healthcare record and the healthcare system.
* Respite options for family caregivers, the most frequently requested service, are available and can be integrated into volunteer efforts. (See How can caregivers take care of themselves?)
Sandy's story continues
Communication patterns were open among Sandy's family members and with healthcare professionals. Helping Jen was important to all involved. The family used technology, including frequent telephone conversations, e-mail, and social media. Sandy quickly learned that communication between all family members, near and far, was essential. She mastered the art of e-mail and texting to give everyone consistent updates and reduce the strain of repeating the same message multiple times.
Even with this very functional communication style, Sandy felt incompetent in ways that could be addressed through nursing action. Better preparation in physical task performance, particularly with ileostomy care, helped this family adapt to this lifestyle change.
Sandy's pride in Jen has been enhanced through this ordeal, and she frequently comments on how strong Jen is. "A downside of this strength is that people don't know how sick she is," Sandy says. "They see she looks okay and think it must not be so bad, but she keeps going on. Don't confuse strength or resolve with easy."
When Sandy was asked, "What's the best thing any parent can do for a seriously ill adult child?" she answered quickly, "Take care of yourself. I have to be healthy to help her."
Once treatment was completed, the biggest question was still before them, "How successful were the treatments?" Now almost 2 years since the diagnosis, all tests are negative, with no signs of cancer.
Supporting caregivers helps patients
By accurately assessing caregiver relationships, including caregivers in the treatment plan, and encouraging self-care for the caregiver, nurses can help chronically ill patients spend longer periods of high-quality time at home surrounded by that which is familiar and comforting.
Evaluating the perceived sufficiency of caregiver education and support36
As part of nursing evaluation, ask the caregiver questions like these.
1. Are you prepared to provide the needed medical treatments and medications for your loved one?
2. Do you know what to do if your loved one experiences pain, shortness of breath, or other distressing symptoms?
3. Are you prepared to communicate with your loved one about his or her illness? Specifically, have you been introduced to communication tips for caregivers?
4. Do you feel as though you know how to cope with the physical, emotional, and spiritual burdens that caregiving can cause? Can you tell me whom you'd call for emotional, physical, and spiritual support, additional caregiver information, or respite?
5. Are you unsure of any part of your loved one's home care? Can you tell me what part that is?
Assessing website information37
WHO
* Who authored the site?
* Are the authors experts in their field?
* Are their credentials listed?
* Who sponsored the site?
* Do you need to buy something from the site to get the information you're seeking?
WHAT
* What's the point of view?
* What biases do you see? Is the site balanced with an explanation about different sides to the topic?
* What's the reason they're publishing this information?
WHEN
* When was the site published?
* When was it last updated?
WHERE
* Where does this information fit into other information you've reviewed on the topic?
* Are links or references to related topics provided?
* Does the site tell you where to go or whom to contact for further information?
HOW
* How can you verify the accuracy of this information?
* How could you use this information?
* How could you contact others for further information?
Communication tips for family caregivers37
* When offering your opinion, always lead with a positive comment. For example, "I really admire how well you seem to understand your chemo and radiation plan. Could I tell you my suggestion of a way to help the children understand your treatment?"
* Ask permission to help; ask what's needed and then follow through.
* Honestly say what you mean without being unkind or judgmental.
* Listen more; talk less. If your voice is the only one you hear, you're talking too much.
* Communication is very hard when the stakes are high: Practice, practice, practice.
- Practice asking, not telling.
- Practice paraphrasing.
- Practice listening with attention.
- Practice until you feel comfortable.
* When you have a strong urge to tell others how things should be done, count to 10 or 20 (or however high you need to count) until the urge passes.
How can caregivers take care of themselves?37
* Acknowledge your limitations: Consider what you can realistically do to help and then offer to do those things.
* Plan your time. Think ahead about when and how you're going to use your time. Use a to-do list.
* Insist on private time and build a caregiving team so you and your loved one aren't alone.
* Prepare yourself. If you know something challenging is coming up, picture the event in your mind. Stay positive. Have a backup plan.
* Focus on your loved one's strengths.
* Relax purposefully. Learn and use deep breathing and progressive relaxation.
* Increase your physical activity. Aim for 21/2 hours each week of moderate or aerobic exercise, such as biking or fast walking. Do strengthening exercises like weight lifting twice each week.
* Eat a healthy diet. Give your body plenty of fruits and vegetables, and drink a full glass of plain water at least four times every day.
* Drink alcohol only in moderation. This means no more than one drink per day for women and two drinks per day for men. Avoid using tobacco and drugs to manage stress.
* Keep regular appointments with your healthcare provider and dentist. If you don't feel well, make an appointment to see your primary care provider.
* Maintain life activities outside your caregiver role.
* Write down your negative feelings about events by keeping a "burn-out" log to record stressful events. Review the list and decide if any of your time needs to be spent fixing or addressing these issues.
* Keep your sense of humor.
* Appreciate your own efforts. If this becomes difficult, seek professional help.
* Actively seek spiritual renewal.
REFERENCES