Distance Caregiving a Parent with Cancer

Abstract

Objective

To discuss the new phenomenon of distance caregiving, with an emphasis on the experience of adult children providing distance caregiving to a parent with cancer.

Data Sources

Literature Review

Conclusions

Although the research is limited, it forms the foundation for beginning to describe the phenomenon and the associated psychosocial burdens that distance caregivers are struggling with.

Implications for Nursing Practice

With the growing population of distance caregivers, it is important for nurses to address these burdens. Interventions for clinical practice are recommended.

Quality cancer care requires a “family-centered” approach. Cancer is life-threatening illness that affects the entire family^{1, 2}. Family caregivers of patients with advanced cancer are faced not only with the challenges associated with the caregiving role, but also with the challenges that are associated with a family diagnosis of cancer³. Fears regarding diagnosis, prognosis, and treatment are overwhelming⁴. Many caregivers feel unprepared to manage pain and symptoms^{5, 6}. Uncertainty about the future and fears of cancer recurrence has been reported to be very distressing^7–9.

Because of the distress and burden cancer and its treatment places on family caregivers, many cancer centers and oncology clinics offer support groups and educational programs for local caregivers¹¹. In addition, when local caregivers come with patients to the physician office or treatment visits, oncology nurses can assess caregiver needs and provide appropriate interventions and referrals on an individual basis. However, there is one type of family caregiver, the distance caregiver, who is rarely included in the family-centered model of cancer care. Distance caregivers (DCGs) are not afforded the psychosocial support and psycho-educational interventions that local caregivers receive because of their geographic distance. They struggle to find resources on their own, or go without.

Distance Caregiving

Distance caregiving is the provision of instrumental and emotional support to a person who lives “far away”. With the globalization of the workplace, many adult children and their aging parents live far away from each other, often in different states. When a parent who lives far away becomes ill, the adult child is thrust into the role of the distance caregiver, a role that has not been developed in previous generations when family members cared for each other in their own homes or communities. Distance caregivers lack the social support from nearby family members. In addition they are often juggling multiple roles and responsibilities at home and at work, making the demands of distance caregiving even more challenging.

Because distance caregiving is a relatively new phenomenon, there has been controversy over what constitutes “far away”. In the few studies done, the definition included actual mileage or travel distance one is away from the care recipient. For example, Koerin and Harrigan found in a secondary analysis of a larger caregiving study that the average DCG lived 300 miles away¹¹. According to the findings from a 2004 national study, long-distance caregivers are those who provide care for an elder who lives at least an hour away¹². However it is difficult to define distance caregiving by the travel hours it takes to get to the care recipient because that is dependent on the mode of travel. Three hours on an airplane may equate to 30 hours by car. Mazanec identified that the patient and caregiver perception of distance was a more important determinant factor than either mileage or travel time¹³. When the time or travel distance prohibited attending physician office visits, treatments or patient visits easily during the course of a day, the family members identified themselves as distance caregivers.

Currently, more than seven million Americans are distance caregivers, and the number is expected to grow as baby boomers and their parents age¹⁴. About 15% of adult children are caregiving parents from a distance and this percentage may be even higher depending on the definition of what constitutes distance caregiving ^11,14.

Distance Caregiving: What we know

Although much is known about local caregiving, limited research has been reported on DCGs and intervention studies are nonexistent^{15, 16}. In 1988, Schoonover et al. studied adult children of 100 elderly mothers living more than 50 miles away who were secondary caregivers¹⁷. More than half of the DCGs reported feeling helpless and anxious and 80% reported “at least some strain” caused by living from a distance¹⁷, p. 482). Little work was done on distance caregivers until 2003 when Koerin and Harrigan¹¹ reported on a secondary analysis of data from the 1997 NAC/AARP national survey¹⁴. They found that the “typical” long distance caregiver was a secondary caregiver, one who supported both the local primary caregiver and the patient. The DCGs reported that their roles included providing services directly (52%), making arrangements for services (28%), and paying for services (44%). Most (79%) reported stress related to being a distance caregiver¹¹.

In the clinical setting, we know anecdotally that many health care professionals report frustration with the DCG. It is not unusual for the DCG to fly in for a physician office visit, upset the patient and local caregivers by questioning the appropriateness of the current medical plan of care, anger the health care team, and then return home, making everyone quite distressed. This phenomenon is so common that it has been labeled by professionals in the health care system. When a professional refers to “The Daughter from California” or “The Son from New York”, in a case study or presentation, it is understood that this is the DCG who upsets the plan of care, the family, and the team. What is not understood is that this DCG is experiencing untreated anxiety and distress which is multifactorial but heavily influenced by the stressors of living far away.

The first targeted study of distance caregivers of parents with cancer was published in 2009¹³. Mazanec studied 40 local and 40 distance caregivers of parents with advanced lung, gastrointestinal, and gynecologic malignancies. The average age of the DCGs was 39, with a range of 23–58 years of age¹³. Demographic data are described in Table 1. Distance caregivers were more likely than local caregivers to be married (p = 0.04) and employed (p = 0.04) and less likely to be caregiving others (p = 0.04), such as another parent or parents-in-law.

Table 1.

Characteristics/Demographics of Distance Caregivers (n = 40)

Demographics	Frequency	Percent
Female Gender	28	70%
Caucasian Race	33	83%
Married	24	60%
Employed	38	95%
Caregiving Others	20	50%

Although the sample size was limited, the study found that distance caregiving was associated with distance caregiver anxiety (r = .30) and total mood disturbance (r = .28). The distress scores in both local and distance caregivers exceeded the threshold for requiring intervention (“5”, on a 0–10 scale, with “0” being no distress and “10” being the most severe distress), as established by the National Comprehensive Cancer Network (NCCN) Distress Guidelines¹⁸. Both anxiety and total mood scores on the Profile in Mood States¹⁹ (POMS-B) instrument were statistically significantly higher in the distance caregiving group compared to the local caregivers (Table 2). The Brief Version of the Profile of Mood States (POMS-B)¹⁹ was used to measure the outcome variables of anxiety, depression, and total mood disturbance¹⁹. The POMS-B is a 30-item instrument with six subscales of 1) tension-anxiety; 2) depression-dejection; 3) anger-hostility; 4) vigor-activity; 5) fatigue-inertia; and 6) confusion-bewilderment. Each item uses a 5-point Likert scale ranging from 0 (not at all) to 4 (extremely). The subject is asked to report on how he/she has been feeling during the past several days. A total mood disturbance score may be obtained by summing the scores and subtracting the vigor score. Higher scores indicate more mood disturbance¹⁹.

Table 2.

Summary of Differences Between Distance & Local Caregivers Psychological

Variable	M (SD)	t (df)	p
ANXIETY		2.763(78)	.007**
Distance CG	7.45 (5.13)
Local CG	4.75 (3.48)
DEPRESSION		.726(78)	.470
Distance CG	4.36 (3.82)
Local CG	3.75 (3.87)
TOTAL MOOD DISTURBANCE		2.152(78)	.035*
Distance CG	38.95 (17.04)
Local CG	31.58 (13.39)
DISTRESS		1.266(78)	.209
Distance CG	6.12 (2.61)
Local CG	5.38 (2.69)

Wellbeing (N = 80)

^*p < .05;

^**p <.01

In the qualitative component of this mixed methods study, distance caregivers (n = 14) described stress, uncertainty, guilt, and anxiety specifically related to their distant geographic location and in addition to the known stress of having a family member with advanced cancer. The distance caregivers experienced the perception of being disconnected from their family and the oncology team, and “out of the loop” because they were not able to come to the cancer center with their parents. They missed out on opportunities for educational and emotional support from the health care team. The distance caregivers reported feelings of “uncertainty”; uncertain about how the ill parent was really doing, uncertain as to the parent’s overall wellbeing and prognosis, and worried that the parent and/or family members were not being honest with them about what was happening at home. Many struggled with anxiety over when to plan a visit, if they would be able to get home in time of need, or how to be helpful to their parents and local family member²⁰.

This descriptive study has opened the door to our understanding of the phenomenon of distance caregiving. Although more research is needed to further explore this caregiving experience, an intervention which would help DCGs establish a relationship with the oncology team and receive appropriate professional supportive and educational services is warranted. The popular press, recognizing the needs and concerns of the growing population of caregivers, has offered one to two page guidelines on how to provide care from a distance^21,22. Websites have been developed to help the DCG learn this new role (Table 3). Oncology nurses in all practice settings can implement DCG support services that would be helpful to the families they care for. The remainder of this article is devoted to providing nurses with case studies to demonstrate strategies and tips that will improve quality family-centered care in their settings.

Table 3.

Recommended Supportive Caregiver Websites

American Cancer Society: www.cancer.org Numerous links to support, information, and resources. Will help you find a local support group in your own community; has a link for long distance caregivers

Cancer Care: www.cancercare.org Provides online support including the availability of telephone support with an oncology social worker.

Cancer Support Community: www.cancersupportcommunity.org An international organization to ensure that all people impacted by cancer are empowered. Provides knowledge and cancer education workshops.

Caring from a Distance: www.cfad.org Website specifically for distance caregivers! An independent nonprofit organization to help long distance caregivers; especially helpful for crisis and emergency assistance.

Family Caregiving Alliance, National Center on Caregiving: www.caregiver.org Although not specific for cancer caregivers, has helpful hints on caregiving at home.

Medicare Website for caregivers: https://www.medicare.gov/caregivers/ Helps caregivers manage financial issues, provides legal assistance, and addresses caring for yourself.

National Cancer Institute (NCI): www.cancer.gov See the information on “Caring for the Caregiver”. Offers a wide range of information on caring for yourself and for the patient.

National Family Caregivers Association (NFCA): www.nfcacares.org Provides information, education, support, public awareness, and advocacy for caregivers. Has link to long distance caregiver stories.

Case Study: Sharon, “Daughter from New York”

Sharon is a 48 yr old business executive working in NYC and living with her husband and 3 sons in New Jersey. Her parents are in their late 70s and have relocated to the east coast of Florida near Miami. Three months ago her father was diagnosed with Stage IV pancreatic cancer and started chemotherapy at the regional cancer center. Sharon flew to Florida when her dad was first diagnosed, stayed for one week to help her mom and dad get set with up with treatment, and returned home. She has tried to stay in touch by phone and email, but after every doctor visit she is unsure that her mom is fully understanding the treatment plan and her father does not want to talk about it on the telephone.

Sharon is being considered for a promotion and is working long hours. She also is involved in her sons’ school and goes into work early each day so that she can be home in time to help with homework and after school activities. Her husband’s job has been relocated and now he commutes two hours a day, each way, to work. Sharon wants to get back to Florida and check on her parents; her mother is always telling her “not to worry, they are doing just fine”. Sharon’s only sibling is a younger brother who lives about 30 minutes from the parents, but rarely visits, believing that Sharon is the daughter and should be the caregiver.

Sharon arranges to come to Florida for her father’s upcoming physician appointment, to see how things are going. When she arrives, she finds that her dad has lost 20 lbs., is rarely leaving his family room TV chair, and is having abdominal pain. At the clinic visit, Sharon yells at the doctor saying, “Do something, you are letting him starve to death!” “You are trying to stop the cancer, but in the process, you are killing my dad”. “I want another opinion, another expert… this is terrible care!”

Sharon is quite distressed at seeing how her dad has changed over the months and is probably experiencing a number of feelings: anger, guilt, anxiety, anticipatory grief, and severe distress. Had the team been able to involve Sharon in the ongoing care and discussions about progression of disease, she may have been prepared for what she saw at this visit. Including the DCG in the plans of care, ongoing communication, and support may have prevented this escalating distress that is taking a toll on everyone in the visit.

Involving the DCG at Diagnosis

When the initial patient assessment is done at the time of diagnosis, it is important to ask who is in the family and where family members live. Ask the patient if the distance caregivers can be involved in the care the center/clinic provides to family members. If this is acceptable, obtain the primary distance caregiver’s contact information and ask the patient to let the DCG know that a member of the oncology program will be contacting him/her within the week to offer support and information, similar to what is offered to those family members who come with the patient to the clinic visits. This one contact can prevent the crisis that occurred at Sharon’s visit. The contact can be made by any member of the team, the nurse, social worker, or counselor.

Distance caregivers have asked for information and education from the oncology team. Rather than search the web on their own, they would prefer to receive recommendations from the team about what is important to know about the parents’ diagnosis, prognosis, and treatment options. Developing a link for DCGs on your institution/clinic’s webpage may be an easy way to offer this education. If you do not have a website, or the DCG is not computer-savy, a packet can be mailed from your office containing NCI or ACS booklets of information on the disease type, treatment, and caregiving. The website or packet may also contain links/information about resources in the parent’s community the DCG can access for help with caregiving (i.e. local cleaning services, food delivery, transportation, etc.) Both the website and mailings should have an introductory letter from your team offering contact information so that they feel “connected” to the team and can call if there are issues or concerns.

You might consider beginning the introductory letter with an opening paragraph such as,

Being a caregiver can be a very rewarding experience. Many caregivers have reported that it has been a privilege to care for someone with a life-limiting illness. Many have also reported that it can be stressful and difficult at times. Although providing physical care can be physically exhausting, caregivers have described that providing emotional support is more difficult than hands-on care. Distance caregivers usually are providing that emotional support as well as offering practical help to the patient and local caregivers. The team at our institution is available to help you with in this important caregiving role.

Suggested websites (Table 3) and the “Tips for Distance Caregivers” (Table 4) can be included in your mailings or on your website.

Table 4.

Helpful Tips for Distance Caregivers of Oncology Patients

Get to know the oncology team. With the patient’s permission, connect (by telephone, email, or web-conferencing) with the physician, nurse, or team member who can keep you informed of what is going on. Ask to be contacted if there is a change in the care recipient’s condition. Keep communication open with the care recipient. Some distance caregivers use the telephone or email to stay in touch, others send notes or cards in the mail. This contact helps both you and the care recipient when you feel very far away and wish that you could visit in person. A diagnosis of cancer can make patients and caregivers feel out of control of the situation. This is especially true when you are a distance caregiver and are not able to visit whenever you want to or feel the need to. Staying in close communication with the health care team and the care recipient can help you feel more in control. Some distance caregivers have feel helpless being so far away. Try to find out what resources are available in the care recipient’s community to help with hands-on care or services. It may be possible to arrange meal delivery, cleaning services, or set up transportation support to and from the oncology office. Consider accessing the care recipient’s local American Cancer Society, or local cancer support programs like those listed under cancercommunitysupport.org. Many of these resources are free and provide help to those with a cancer diagnosis. Finding resources to support the care recipient and local caregivers is a great way to help out from afar. Another way to help local caregivers is to take on responsibilities that do not require you to be physically present. For example, arranging medical appointments and transportation can be very time-consuming for those providing physical care. Also, taking on the responsibility for bill-paying and financial matters can take a huge burden off of others. Call a travel agent to find out if airlines or bus lines have special deals for family members of ill persons. Some private pilots or companies help people with cancer and their families. If you are traveling to see the care recipient, time your trip so you have time to rest when you return. Many distance caregivers say they don’t have enough time to rest after the visits before they start back to work or home responsibilities. Remember to seek support yourself as a distance caregiver. It is important for you to stay healthy in mind, body and spirit. You need to take care of yourself during this time. Consider attending a local support group for caregivers, or starting one for distance caregivers. Many of the same centers and clubs that offer support for cancer patients have programs for caregivers as well. Even though the care recipient may live far away, you can still attend a program in your area. Many caregivers report that they decrease the stress of caregiving by participating in complementary therapies like reiki, therapeutic touch, or guided imagery. Others find that listening to music, taking a walk, or journaling can be helpful. Regular exercise has been shown to help decrease stress. Find a strategy that works best for you. Be open to help from your local friends or coworkers. Even though you are not providing hands-on care you can feel worn-out and fatigued. Let friends help you with tasks such as providing meals to you or your family or offering child care so that you are able to take time from your busy schedule to provide distance caregiving as well as care for yourself. Seek out internet resources that are available for caregivers. Some sites have chat rooms which allow you to participate in a support group without having to take time away from work or family. Examples of sites. include Caring from a distance (www.cfad.org) and the National Family Caregivers Association (www.nfcacares.org)

Providing Supportive Care Across the Disease Trajectory

In a busy practice, it is challenging to provide the support and educational information to the patient and local family caregivers. Oncology nurses work hard to find time to meet the supportive needs and do the necessary teaching of treatments, medication side effects, wound care, etc. Providing supportive care to the DCG does not have to fall entirely on the nurse, it can be provided by other disciplines such as social work or counseling, if they are in the practice setting. If the nurse is “the team”, taking time to reach out to the DCG at diagnosis is a great first step. Empowering the DCG with contact information and educational resources may be enough to prevent a DCG crisis visit. Since most DCGs have never been included in family care, making this connection is powerful and supportive. If the nurse or other team members are able to re-connect across the cancer journey, especially at transition points, that is even better. Just as local caregivers vary in their needs, not all DCGs will need continuous support. The initial contact may help identify if the DCG seems to be at high risk for distress. Based on our limited knowledge of this phenomenon, those at risk appear to be DCGs caring for other ill parents or in-laws or ill children, those with little local support to help them with their home responsibilities while away (i.e. child or pet care), are struggling financially and cannot get in for a visit, and those who cannot take time off from work to visit the ill parent. Utilizing Technology

With the advances in technology over the past five years, there are many potential uses for technology to aid in connecting the DCG with the oncology team and the patient^23,24. Currently, a pilot study using webcams in the physician office visit is being tested for feasibility of use. Web cam technology is now relatively simple, and anyone with basic computer skills can master its use. Web cams, if not already imbedded in the computer, are available for about $20.00. The DCG can “join in” during the physician visit and hear first-hand what the doctor and team is saying to the patient, see how the patient is doing physically, and even ask questions and participate in care planning. This is especially helpful for family meetings or at the time of difficult decision-making. If this technology had been offered to Sharon throughout her father’s treatment, she may have seen the disease progression gradually occur rather than being witness to such a drastic physical change. Smart phones and face-to face- connections may also be used, although the screen size is challenging for older adults. If this audiovisual technology is not available, inviting the DCG into the physician visit as a conference call in the patient’s room will allow the DCG to hear what the plan of care is and to talk about issues and concerns that may arise.

Another exciting technologic strategy available to help DCGs see where their parents are receiving care is to design and build a virtual tour site on the treatment center webpage. With help from the IT team, a link can be provided that allows the DCG to “tour” the chemotherapy suites, radiation oncology, the in-patient units, or other treatment sites. This enhances the connection to care that DCGs have told us they really need.

Case Study #2 John, the Son from California

John is the oldest son of three children. His mother was just diagnosed with Stage III b non-small cell lung cancer and is receiving radiation and chemotherapy in Cleveland Ohio. John’s dad is the primary caregiver and is in good health. John’s two sisters live far away from Cleveland; one is in South Carolina, and the other in Oklahoma. John is distressed and anxious because he cannot easily get to Cleveland to check on his mother’s condition and to be there for his parents. He is a full-time chef at a prestigious restaurant and rarely can get away. When his mom was diagnosed, the cancer center learned about the three long-distance adult children and the clinic oncology nurse contacted each of them by telephone, with the patient’s permission, to give them information about the cancer center, the type of cancer and treatment, and contact telephone numbers for them to call the cancer care team with questions or concerns. In addition, the adult children were directed to the cancer center internet website for distance caregivers, which provided information about support services in Cleveland for their mom and dad, reputable websites for distance caregiving tips, and frequently asked questions and answers.

Unlike his two sisters, John was not going to be able to get to Cleveland in the near future, so the cancer center institutional technology (IT) department helped arrange for web-camera conferencing during John’s mother’s doctor visits. With a simple web camera on his home computer, John was able to connect into the doctor visits, hear first-hand what the plan of care was and see how his mom was doing. He reported to the oncology team that his anxiety and distress decreased just by being allowed to be “present” at the visit and be able to feel engaged as part of his mom’s care team. With his own distress and anxiety managed, John was able to be fully present, from a distance, to his mother’s needs and concerns and was appreciating the opportunity to help his parents in their time of need. He actively participated as a caregiver by arranging a schedule of meals to be delivered to the house and found an agency that could provide caregiver respite so that his dad could continue to play golf once a week. With the family working together, sharing caregiving tasks, the cancer journey was a little easier for all.

Conclusion

Distance caregiving is an emerging phenomenon. The limited research has demonstrated that these caregivers are struggling with anxiety and distress acute enough to warrant nursing intervention. Yet, in the past, health care providers have not done a good job of addressing their needs or including them in family-centered quality cancer care. Because they have not been included in the patient’s plan of care, or received supportive interventions, they have unintentionally complicated medical decision-making in the clinical setting when things are not going well with the patient’s illness trajectory. Nursing interventions can alleviate the unnecessary suffering and distress experienced as a result of distance caregivers’ feeling disconnected from the oncology team. Inviting them to be included in the plan of care is the first step in establishing a trusting relationship and offering emotional support. Providing educational resources and connecting them with appropriate websites may provide instrumental and emotional support from far away. Innovative technology can provide an additional connection when the distance caregiver is unable to visit the patient or participate in a physician office or treatment visit. These distance family members can be an asset to the patient and local caregivers when we help them learn their role and provide the much needed support to enable them to be successful in this caregiving role.