Background: Problematic communication among providers, patients, and their family members can affect the quality of patient care, causing stress to all parties involved and decreased opportunities for collaborative decision making.
Objectives: The purpose of this article is to present one case from a pilot study of a family caregiver intervention focused on communication.
Methods: The nurse-delivered communication intervention includes a written communication guide for family caregivers, as well as a one-time nurse communication coaching call. The call is aimed at identifying caregiver communication concerns, providing communication education, and role playing problematic communication.
Findings: Psychological distress and caregiver confidence in communication were improved for the caregiver. Data presented from the case study demonstrate the need for family caregiver communication support and training and the potential benefits of such training.
Decades of caregiving research illustrate that family caregivers continue to have high unmet information needs (Glajchen, 2012; Northouse, Katapodi, Song, Zhang, & Mood, 2010) and experience distress and anxiety as a result of poor communication with providers, family, and friends (Hendriksen et al., 2015; Li & Loke, 2014; McCarthy, 2011). Poor communication with healthcare providers results from caregiver difficulty in understanding medical language and feeling overwhelmed by the amount and type of information provided (Robinson, Gott, & Ingleton, 2014). Caregivers also experience communication difficulties with patients and other family members because of differing communication styles or the desire to protect each other or avoid topics, or as a result of previous conflicts (Northouse, 2012). Family caregivers report feeling responsible for the psychological well-being of the patient (Mosher, Jaynes, Hanna, & Ostroff, 2013) and attempt to protect the patient and maintain hope by avoiding discussions about the diagnosis and illness trajectory (Caughlin, Mikucki-Enyart, Middelton, Stone, & Brown, 2011). In the absence of open communication, caregiver depression results from low patient cohesion and expressiveness and greater conflict (Siminoff, Wilson-Genderson, & Baker, 2010).
Family conflict can be a secondary stressor for caregivers (Kramer, Kavanaugh, Trentham-Dietz, Walsh, & Yonker, 2010; Wittenberg-Lyles, Demiris, et al., 2012), and the psychological well-being of caregivers is affected most during lung cancer care (Grant et al., 2013). The quality of life among patients and caregivers is interdependent (Kim et al., 2015), and perceived family disagreement is associated with depression in patients with lung cancer and their caregivers (Zhang, Zyzanski, & Siminoff, 2010). Caregivers of patients with lung cancer worry about the impact of the illness on the family and the family’s ability to cope with caregiving responsibilities and express a desire to care for their family (Maguire et al., 2013). For example, caregivers who do not live with the patient with lung cancer spend a considerable amount of time providing emotional support to the patient and other family members (Mosher, Jaynes, et al., 2013). Particularly salient in lung cancer populations, caregivers who blame the patient for getting lung cancer create depressive symptoms for the patient as well as for themselves (Siminoff et al., 2010). Among married couples, spousal caregivers are more likely to be depressed than nonspouse caregivers (Siminoff et al., 2010). Distressed caregivers of patients with lung cancer—defined as those who report significant anxiety or depression during psychological distress screening—underuse mental health services, despite reporting a desire for psychosocial support (Mosher, Champion, et al., 2013).
Although providers, family, and friends can be a source of support for caregivers, family caregivers vary in the use of these support networks and in perceiving such networks as effective (Mosher, Ott, Hanna, Jalal, & Champion, 2014). Communication constraints among family members can be a barrier to quality care (Kramer et al., 2010), and variation in the type of communication valued within a family causes variation in how family members talk to each other and providers about cancer (Wittenberg-Lyles, Goldsmith, Oliver, Demiris, & Rankin, 2012). For example, caregivers of patients with lung cancer have different standards of appropriate communication that influence whether comments are considered supportive or nonsupportive (Stone, Mikucki-Enyart, Middleton, Caughlin, & Brown, 2012). Caregivers are actively involved in cancer care yet experience disagreements with patients with lung cancer about care decisions (Zhang et al., 2010). Disagreement occurs about the impact of treatment side effects and benefits, whether and when to report treatment side effects, and hospice care (Zhang et al., 2010). Caregivers are challenged with patient discussions about continued tobacco use (Mosher, Jaynes, et al., 2013) and struggle with what and how much to disclose to the patient and other family members (Stone et al., 2012). Caregivers have informal communicative roles with the patient with lung cancer and other family members, but little is available to assist them with these difficult and sensitive discussions (Mosher, Jaynes, et al., 2013).
Although psychosocial interventions have shown to be effective at alleviating psychological distress for caregivers, little attention has been given to caregiver communication (Given, Given, & Sherwood, 2012). However, nurse-delivered psychosocial interventions for cancer caregivers have resulted in improved self-management (Hopkinson, Fenlon, & Foster, 2013), an area that includes communication skills. A study conducted in Singapore testing a three-session self-management intervention for family caregivers included communication about self-care needs and showed improved caregiver quality of life and lower stress and depression (Leow, Chan, & Chan, 2015). The current article reports on one case study within a pilot project that involves a nurse-delivered communication intervention to family caregivers of patients with lung cancer to support their communication needs. The purpose of this case study is to explore communication-related burden in cancer caregiving and assess care outcomes as a result of a nurse-delivered communication intervention.
This case study is taken from a larger study of family caregivers of patients with lung cancer who were recruited from a comprehensive cancer center in the western United States. The study was approved by the cancer center’s institutional review board, and written consent was obtained. The case called for an in-depth analysis because it was the only one so far in which the caregiver reported high psychological distress at baseline. A case study approach allows an investigation of contemporary real-life experiences pertaining to communication and, therefore, illuminates the context of caregiver distress.
Upon study consent, baseline measures were taken and the family caregiver was given a copy of A Communication Guide for Caregivers (Comfort Communication Project, 2016). The guide is based on caregiving research and includes caregiver quotes and stories, which incorporate cultural and social factors affecting caregiver health literacy. The guide is written at a sixth grade reading level, as recommended by the U.S. National Library of Medicine (2014) for health information; however, caregivers were not required to meet a certain literacy level to participate in the intervention. Table 1 provides an overview of guide content. In previous research, family caregivers have reported the guide as being useful and relatable (Forster & Windsor, 2014). In this case study, the caregiver reported high psychological distress and an urgent need for support materials.
Following consent, the research nurse asked the family caregiver to read the guide during the upcoming week and scheduled a follow-up communication coaching call. Communication coaching consisted of a facilitated discussion about a caregiver-identified communication concern, the impact of the communication concern, reference to the communication guide as a helpful resource, role play of problematic communication, and development of a caregiver action plan. The communication coaching call was recorded and transcribed word for word. A grounded theory approach (Glaser & Strauss, 1967) was used to collectively review the transcript of the communication coaching call. Members of the research team independently reviewed the transcript for communication-related burden and then met to discuss and adjust themes through constant comparison (Coffey & Atkinson, 1996).
The research nurse attended a two-day communication training course to develop communication coaching skills (http://communicatecomfort.com), which included instruction on family caregiver communication characteristics and how to adapt communication through active listening and open-ended questions to meet the caregiver’s communication style. The research nurse also received extensive feedback from the research team on all communication coaching calls.
Two caregiver outcomes were measured at baseline and one month post–study enrollment: psychological distress and caregiver confidence in communication. The psychological Distress Thermometer is an efficient tool to evaluate caregiver distress during the past week, based on a scale of 0–10, and is included in the National Comprehensive Cancer Network (NCCN) guidelines for psychological distress (NCCN, 2017). A mark of 4 or above indicates a need for intervention (Graves et al., 2007), and appropriate support referrals are made, such as social work services, pastoral counseling, and psychological treatment (NCCN, 1999).
The caregiver confidence in communication survey was developed by the research team to measure caregivers’ confidence communicating with patients, family members, and healthcare providers, and asks caregivers to provide a general rating and rate communication confidence across four specific topic areas using a Likert-type scale ranging from 0 (not confident) to 10 (very confident). Finally, the research nurse conducted a brief telephone interview with the caregiver regarding intervention satisfaction at one month.
Ruby, a 45-year-old Caucasian female providing care to her mother, participated in the study. She was single, college-educated, and self-employed, making less than $30,000 a year. Her mother was newly diagnosed (less than 30 days) with lung cancer. Ruby’s initial assessment (baseline) showed a psychological distress score of 8, indicating a high level of distress. The communication coaching call took place seven days from study consent and lasted 42 minutes.
Communication Coaching Call
When asked to rank who was the most challenging for her to communicate with, Ruby explained that communicating with her biological father and her stepfather (who raised her) was most challenging, followed by knowing what to ask her healthcare providers. Ruby’s perceived communication barriers included difficulty providing information about her mother’s cancer to both men, who have disdain for her mother. Ruby felt challenged by the desire to “protect her mother” by limiting personal information about her mother but still answering her father’s and stepfather’s questions. She also confided that she writes questions for her mother’s oncologist that she forgets to ask because she feels nervous about her mother’s condition and her mother not wanting to go in a certain direction with the conversation during the oncologist visits.
When asked to describe how communication challenges have affected her quality of life, Ruby explained that she experiences heart palpitations as a result of difficult interactions with healthcare providers that leave her choked up and unable to speak. She described having a continuous internal dialogue in her mind about “what I shouldn’t have said and [how I] could say things properly,” experiencing increased anxiety for not conveying her message. Ruby explained that she often “shuts down and changes the subject and finds a reason to leave the conversation” when she feels stressed. She has encountered communication challenges with both of her fathers. “I have to map out a time that’s reasonable for me to get in touch with them where I know it’s not going to impact my day. . . . I pray and meditate on how to approach the next conversation.”
Ruby and the research nurse role played a telephone call with her stepfather about sharing information on her mother’s chemotherapy treatment. The research nurse provided information and support from the caregiver guide on how to share information and start a conversation, and reviewed what healthcare providers need from family caregivers. Ruby was encouraged to take notes during clinical visits and to take these notes with her to clinical appointments. At the end of the call, Ruby’s action plan was to engage in a well-structured conversation with her biological father and her stepfather about her mother’s cancer.
At one-month follow-up, Ruby’s psychological distress was a 6, down from an original ranking of 8. She reported that her action plan worked. “It was so much easier, and I think they were able to retain the information I gave them.” Ruby also shared that she used other activities in the guide, including a chart of the patient’s progress that helped her find trends in good timing for important conversations. Overall, she was satisfied with the intervention, explaining that the research nurse helped her “to find the right words to express what’s going on.” She reported feeling somewhat prepared. “I have better tools in my toolbox. . . . I feel very confident that what I don’t have [the research nurse] . . . can coach me through it.” Although she found the guide easy to read and understand, she expressed a desire for a more detailed and less generalized version.
Table 2 provides an overview of baseline and one-month follow-up measures. Ruby’s communication confidence improved for discussions with her mother and healthcare providers but remained the same for communication with other family members. Communication confidence about cancer treatment and goal of treatment improved from 5 to 10 in talking with her mother. Discussions about broader life topics (spirituality, social activities, and stress from caregiving) with her mother decreased postintervention. Although communication confidence with family was least improved, with decrease in confidence occurring for talk about treatment and symptoms, Ruby’s communication confidence increased in talk with family about broader life topics, moving from 1 to 6. The largest improvement in Ruby’s communication confidence during the one-month study period occurred in communication with healthcare providers. She improved greatly across all categories, reporting highest confidence in communicating with providers about the cancer diagnosis and symptoms, managing cancer pain, and treatment side effects. The biggest change was in her confidence in communicating broader life topics, including stress from caregiving, with providers (from a baseline score of 2 to 9).
This case study illustrates the need to address caregiver communication challenges and suggests that caregiver distress may be influenced by communication difficulties. These findings indicate that family caregivers experience communication-related burden that affects quality of life. Current communication skill-building literature focuses solely on teaching nurses to inquire whether the family caregiver understands the disease and prognosis and to ascertain their information needs and preferences. This case study demonstrates that nurses can support communication about cancer within the caregiver’s support network.
Although the caregiver’s communication confidence improved from baseline to one month, this cannot be concluded to be a direct result of the communication coaching call intervention. The length of time from study consent to follow-up may have facilitated time for the caregiver to accept her role, improving her overall mental well-being. However, the caregiver commented that she did several activities within the guide on her own, suggesting that she did read the guide during the one week between study consent and the communication coaching call.
Although limited by exploration of this one case and the potential bias of the researchers who are trained in communication and quality of life, this study informs oncology nursing practice. Nurses can support and encourage quality communication between the family caregiver and other healthcare providers, notably the oncologist, by encouraging the caregiver to generate a list of questions for clinical visits. These questions can be derived solely by the caregiver or in conjunction with the patient. Nurses can ask to see the list of questions and provide support for finding answers by sharing them with the oncology team. A question prompt list—a list of questions that can be asked when the patient is seen by the oncologist—can also be provided to the patient or caregiver as part of routine procedure in the clinic. Finally, nurses can provide psychosocial support by working with the caregiver to develop a communication action plan or simply asking the caregiver about stress related to communication about cancer.
Implications for Nursing Practice
Family caregivers communicate a broad range of concerns to nurses, including financial burdens, physical aspects of caregiving, and their own emotional responses. Nurses serve as a sounding board for family caregivers to share the impact of the patient’s illness on their own quality of life. For nurses to effectively coach family caregivers in communication, they may require additional training in communication themselves. The COMFORT™ SM communication curriculum (www.communicatecomfort.com) provided by the researchers is one such training program that offers nurse education on family caregiver communication and how to engage in these conversations. A Communication Guide for Caregivers is a resource of the curriculum.
The current study underscores the need for nurses to assess the family’s ability to communicate about cancer and support communication tasks related to caregiving. Resources available for nurses to share with caregivers include National Cancer Institute [NCI] (2016a, 2016b), which include the Caregiver’s Bill of Rights, talking with family and friends, and talking with the healthcare team, with suggestions such as keeping a notebook and asking questions about treatment. In addition, Livestrong (2016) includes sections on the benefits of good communication, what good communication skills look like, and how to communicate well with one’s partner by being aware of one’s own communication patterns. Family Caregiver Alliance (2016) includes sections on communicating constructively and communicating with the physician that direct caregivers to enlist nurses’ help.
Family caregivers need encouragement, assistance, and practice communicating with others about the patient’s needs, as well as their own. The current case study demonstrates communication-related burden and distress experienced by one family caregiver and the impact this can have on caregiver quality of life. Nurses are in a unique position to provide support by asking family caregivers about difficult communication, encouraging them to ask questions and share the stress of caregiving with healthcare providers and others, and promote communication-related burden as a dimension of psychosocial care.
The authors gratefully acknowledge Ellen Friedmann, JD, BA, at the City of Hope Comprehensive Cancer Center in Duarte, CA, for her editorial assistance.
About the Author(s)
Elaine Wittenberg, PhD, is an associate professor and Betty Ferrell, RN, PhD, MA, FAAN, FPCN, CHPN®, is a professor, both in the Division of Nursing Research and Education; Marianna Koczywas, MD, is a professor of medicine and thoracic medical oncologist in the Department of Medical Oncology; and Catherine Del Ferraro, MSN, Ed., PHN, RN, CCRP®, is a senior research specialist in the Division of Nursing Research and Education, all at the City of Hope Comprehensive Cancer Center in Duarte, CA. The authors take full responsibility for this content. This study was supported by an award from the National Cancer Institute of the National Institutes of Health (P30CA33572). The article has been reviewed by independent peer reviewers to ensure that it is objective and free from bias. Wittenberg can be reached at email@example.com, with copy to editor at CJONEditor@ons.org. (Submitted May 2016. Accepted July 29, 2016.)