Flying blind: sources of distress for family caregivers of palliative cancer patients managing pain at home.

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Flying Blind: Sources of Distress for Family Caregivers of Palliative Cancer Patients Managing Pain at Home a

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Anita Mehta RN PhD , Lisa S. Chan RN PhD(c) & S. Robin Cohen PhD

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Psychosocial Oncology, McGill University Health Center - Montreal General Hospital , Montreal , Quebec , Canada b

School of Nursing, McGill University , Montreal , Quebec , Canada

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Division of Palliative Care, Departments of Oncology and Medicine, McGill University and Jewish General Hospital , Montreal , Quebec , Canada Accepted author version posted online: 24 Oct 2013.Published online: 15 Jan 2014.

To cite this article: Anita Mehta RN PhD , Lisa S. Chan RN PhD(c) & S. Robin Cohen PhD (2014) Flying Blind: Sources of Distress for Family Caregivers of Palliative Cancer Patients Managing Pain at Home, Journal of Psychosocial Oncology, 32:1, 94-111, DOI: 10.1080/07347332.2013.856057 To link to this article: http://dx.doi.org/10.1080/07347332.2013.856057

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Journal of Psychosocial Oncology, 32:94–111, 2014 Copyright © Taylor & Francis Group, LLC ISSN: 0734-7332 print / 1540-7586 online DOI: 10.1080/07347332.2013.856057


Flying Blind: Sources of Distress for Family Caregivers of Palliative Cancer Patients Managing Pain at Home ANITA MEHTA, RN, PhD Psychosocial Oncology, McGill University Health Center - Montreal General Hospital, Montreal, Quebec, Canada

LISA S. CHAN, RN, PhD(c) School of Nursing, McGill University, Montreal, Quebec, Canada

S. ROBIN COHEN, PhD Division of Palliative Care, Departments of Oncology and Medicine, McGill University and Jewish General Hospital, Montreal, Quebec, Canada

Pain requiring treatment is experienced by many cancer patients at the end of life. Family caregivers are often directly implicated in pain management. This article highlights areas of psychosocial concern for family caregivers managing a family member’s cancer pain at home as they engage in pain management processes. This article is based on the secondary analysis, guided by interpretive description, of data collected for a grounded theory study that explored the processes used by family caregivers to manage cancer patients’ pain in the home. Interviews and field notes from 24 family caregiver interviews were examined to identify areas of family caregiver psychosocial distress. The analysis revealed that family caregivers experienced distress at different phases of the pain management process. Sources of distress for caregivers included feeling as though they were “in a prison” (overwhelmingly responsible), “lambs to slaughter” (unsupported), and “flying blind” (unprepared). In addition, family caregivers expressed distress when witnessing their loved one in pain and when pain crises invoked thoughts of death. In sum, family caregivers managing a loved one’s cancer pain at home are at risk for psychosocial distress. This study identified four Address correspondence to Anita Mehta, RN, PhD, Psychosocial Oncology, McGill University Health Center - Montreal General Hospital, 1650 Cedar Avenue, T6 310, Montreal, Quebec H3G 1A4, Canada. E-mail: [email protected] 94

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key sources of distress that can help health care professionals better understand the experiences of these family caregivers and tailor supportive interventions to meet their needs. Knowledge about sources of distress can help healthcare professionals understand the experiences of these family caregivers and tailor supportive interventions to meet their needs.


KEYWORDS family caregivers, psychosocial distress, pain management, palliative care, home care, oncology

INTRODUCTION Many patients with advanced cancer prefer their treatment and care remain in their homes (Aubin et al., 2006; Higginson, Wade, & McCarthy, 1990). This means that many family members become caregivers. However, families are often “understaffed” to care for a seriously ill patient at home (Miller & Walsh, 1991, p. 26). Family caregivers providing care in the home experience significant physical, psychological, and financial demands (Stajduhar & Cohen, 2009). The diversity and the intensity of different caregiver roles and responsibilities can often compromise the physical and emotional health of these family members (Honea et al., 2008). Furthermore, family caregivers taking on the responsibility of caring for the patient at home must also manage their own grief, anxiety, depression, and fears. These sources of distress, coupled with their need to assist with the patients’ daily activities, family administrative issues, and the supervision of medication create a considerable threat to their well-being (Aranda & Hayman-White, 2001; Ferrell, Taylor, Grant, & Corbiser, 1993; Higginson et al., 1990; Yates et al., 2004). Family caregivers are responsible for many aspects of the patient’s care, including managing symptoms (de Wit, van Dam, Litjens, & Abu-Saad, 2001; Mehta, Cohen, Ezer, Carnevale, & Ducharme, 2010; Stajduhar & Cohen, 2009). Because pain is one of the most common and distressing symptoms experienced by advanced cancer patients, pain management becomes a critical responsibility for family caregivers. They play an integral role in pain assessment, monitoring, and the implementation of complex interventions (Aranda & Hayman-White, 2001; Ferrell, Cohen, Rhiner, & Rozek, 1991; Mazanec & Bartel, 2002; Mehta et al., 2010; Yates et al., 2004). Despite collaborative efforts between health care providers and families, palliative cancer patients still experience pain (Aubin et al., 2006; Bostrum, Sandh, Lundberg, & Fridlund, 2004; Davis & Walsh, 2004; Dobratz, 2001; RandallDavid, Wright, Porterfield, & Lesser, 2003). Pain management often presents as one of the most challenging aspects of the family caregiver role (Mazanec & Bartel, 2002; Mehta et al., 2010). Family caregivers have reported concerns regarding opioid-related side


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effects, fears of addiction, and the belief that pain means disease progression (Vallerand, Collins-Bohler, Templin, & Hasenau, 2007). Additionally, simply the act of observing a loved one in pain is very difficult for family members (Ferrell, 2001). Pain management is of prime importance not only for patient comfort but also because of secondary effects unrelieved pain and pain management have on family caregivers. Some documented psychosocial consequences are anxiety and depression (Flaskerud, Carter, & Lee, 2000; Miaskowski, Kragness, Dibble, & Wallhagen, 1997), hopelessness and feeling helpless (Mehta & Ezer, 2003), decreased quality of life (Ferrell, Grant, Borneman, Juarez, & ver Teer, 1999), and feelings of distress (Yates et al., 2004). The National Comprehensive Cancer Network (NCCN; 2008) defines distress as “a multifactorial unpleasant emotional experience of a psychological (cognitive, behavioral, emotional), social, and/or spiritual nature that may interfere with the ability to cope effectively with cancer, its physical symptoms and its treatment.” This can apply to the family caregiver as well. It is for these reasons that, in addition to an assessment of a family caregiver’s physical capacity to carry out the care required for a patient with advanced cancer, a psychosocial assessment must be performed to determine their mental and emotional capabilities (Powazki, Palcisco, Richardson, & Stagno, 2000). Psychosocial oncology is a specialty in cancer care concerned with understanding and treating the social, psychological, emotional, spiritual, quality-of-life, and functional aspects of cancer, from prevention through bereavement. It is a whole-person approach to cancer care that addresses a range of very human needs that can improve quality of life for people affected by cancer (Canadian Association of Psychosocial Oncology, n.d.). Optimal supportive care for the patient and their family caregiver rests in the health care professionals’ ability to meet their psychosocial needs. This article builds on findings from a grounded theory study of the process used by family caregivers at home to manage the pain of palliative cancer patients. Palliative in this study refers to the subset of patients whose treatment plan was no longer directed toward a cure, but rather whose primary treatment goal was to optimize the quality of life of the patient and the family (World Health Organization, 2010). The family caregivers in this study were defined as “informal caregivers such as family members, friends and neighbors who provide support or care for the dying family member, loved one, or friend” (Canadian Hospice and Palliative Care Association (CHPCA; 2002). The original study led to the proposition of an explanatory model titled the puzzle of pain management (Mehta et al., 2010). Four main processes emerged to form the puzzle: (1) “drawing on past experiences,” (2) “strategizing a game plan,” (3) “striving to respond to pain,” and (4) “gauging the best fit.” Although it has been noted that family caregivers experience distress while bearing the responsibility of pain management, the results of


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the original grounded theory revealed that across cases psychosocial distress was evident as they described their experiences related to each of these processes. The purpose of this article is to highlight the sources of distress experienced by family caregivers managing pain at home and discuss clinical implications.


METHOD This article is based on the secondary analysis of interview and field note data collected by Mehta and colleagues (2010). Grounded theory (Strauss & Corbin, 1994) was the methodology used in the original study (Mehta et al., 2010). Data were collected using semistructured audio-taped interviews with family caregivers as well as written field notes. The interviews included questions related to the types of pain the caregivers said they were managing. In addition, they were asked questions about how prepared they felt to manage this responsibility, their support systems, sources of information, and thoughts and feelings about pain and pain management. Strauss and Corbin’s (1994) framework of open coding, axial coding, and selective coding was used to guide the original grounded theory analysis. A more detailed description of the grounded theory methodology including the sampling, data collection, and analysis is in the original article (Mehta et al., 2010). This secondary analysis was guided by interpretive description, a methodology developed for investigating subjective and experiential phenomena where the findings can then be used to inform clinical understanding and practice (Thorne, 1994, 2008).

Recruitment Recruitment took place from January to June 2006 in Quebec, Canada, after approval was obtained from the Ethics Review Boards of the organizations involved. Current family caregivers were recruited using purposeful then theoretical sampling (Coyne, 1997; Morse, 1991; Polit & Beck, 2004). The supportive care team of a university teaching hospital and nurses from a homecare association referred appropriate and interested family caregivers to AM, who then explained the study to them and obtained written informed consent.

Data Collection Data collected included semistructured interviews with family caregivers, field notes, and memos. In the original study family caregivers were asked about how they managed their family member’s pain at home. Throughout data collection, family caregivers also discussed their thoughts, feelings and concerns around pain management. Statements that were coded in the

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grounded theory analysis as “family caregiver feelings,” “family caregiver thoughts,” “fears,” and “beliefs” were included in this secondary analysis.


Data Analysis Semistructured interviews were transcribed verbatim and data were entered into NVIVO (Version 2.0). This secondary analysis employed a “retrospective interpretation” where the original data is used to consider a research question that was raised, but not thoroughly addressed, in the original work (Thorne, 1994, p. 266). In this study, these data were recoded and further examined by AM and LSC. In addition, the entire transcripts were reviewed to ensure that all instances of psychosocial distress were captured and that the coded data were understood in their context. Discussion between these authors led to the further refinement of the data into four main themes representing the sources of distress experienced by family caregivers managing pain at home.

RESULTS Sample Characteristics Participants were a purposive sample of 24 family caregivers who were identified by the patients as the person most involved in the management of their pain, were older than age 18, spoke and read English and French, and consented to participate. The mean age was 69 years (range 25–90). Sixteen (75%) family caregivers were women. Of the total number of family caregivers, 12 (50%) were spouses of the patient. The mean length of family caregiving experience was 2.2 years (range 2 weeks–20 years). They were caring for patients with differing cancer diagnoses. There were participants from a variety of different ethnic backgrounds (see Table 1). All patients and family caregivers were followed by and supported by nurses and physicians as part of homecare services for palliative care.

Findings There were sources of distress found in each process that the family caregivers engaged in as they tried to manage the patient’s pain. Four main themes emerged as central in the family caregivers’ discussions on distress. The family caregivers’ own words are used to illustrate these themes: “Like being in a prison,” “Flying blind,” “Lambs to the slaughter,” and “It hurts to watch somebody you love suffer.” In addition, these four themes were interrelated as participants often expressed distress in multifaceted ways, with distress in one area leading to distress in another. For clarity, each theme will be discussed separately.

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Sources of Distress for Caregivers of Palliative Patients TABLE 1 Sample Characteristics


Family Caregivers Mean age (range) Mean length of caregiving experience (range) Median length of caregiving experience Gender (male/female) Relationship to patient Wife Husband Daughter Son Brother Sister in-law Niece Self-described ethnic background of family caregiver Jewish White Anglo Saxon Protestant Scottish French Canadian Italian Egyptian British Irish Portuguese French “European” Family caregivers who were health professionals Patients being cared for Mean age (range) Type of cancer Pancreatic Breast Prostate Colon Lung Other (only 1 of each type) Gender (male/female)

69.0 (25–90) 2.2 years (2 weeks–20 years) 1 year 8/16 10 6 4 1 1 1 4 4 2 2 2 2 2 1 1 1 3 69.8 years (52–89) 4 4 3 2 2 9 12/12

Source: Mehta, Cohen, Carnevale, Ezer, & Ducharme (2010) © [Institut universitaire de gériatrie de Montréal]. Reproduced with permission of Institut universitaire de gériatrie de Montréal. Permission to reuse must be obtained from the rightsholder.

Like Being in a Prison (overwhelmingly responsible) Many family caregivers articulated being distressed once they had taken on the responsibility of their family member’s pain management. Although all of them accepted that they were responsible for pain control, some felt distress over what at times appeared to be an inescapable situation. For example, one daughter stated that she was “stuck in the house . . . and it’s like being in prison . . . I don’t want leave her alone . . . in case she has a pain crisis when I’m not there” (003).


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All of the caregivers described having willingly accepted the caregiver role and of being “in charge” of pain management. Yet the nature and extent of this responsibility only became apparent after taking on the role. In this study all participants were the primary caregiver, and many were the only caregiver. Those who felt total responsibility seemed to express more distress. These caregivers described feeling trapped and restricted and experienced an interruption to their lives. One caregiver felt that being responsible for pain management interfered with having a full-time job. As a result, she stated, “I can’t work. I started and I couldn’t do it. It was impossible” (014). The desire to want to help and the dissonance created by feeling restricted or that their own lives were disrupted was a source of distress. This distress was then compounded when they felt bad about feeling this way. The above example, like others in this study, shows how accepting responsibility can lead to other sources of distress, in this case, a change in role and income loss. The loss of freedom, the physical demands, and the feelings of helplessness were all related sources of distress for family caregivers after they had accepted the responsibility of pain management. Finally, when caregivers managing pain were away from their loved one, they experienced worry and distress that care, and in particular pain management, at home was not being well managed: I know for me it’s hard to be away. Like I said I’m paranoid when I’m away, I’m nervous, I’m stressed because I feel like things are not being done, you know, but you do need it or else you’ll go crazy. (014)

Flying Blind (unprepared) The theme of “flying blind” (002) represented caregivers’ distress when they felt unable to manage the pain. This resulted from (1) not having enough information about pain control and thus feeling unprepared and (2) subsequently feeling helpless when confronted with a pain crisis that they did not know how to manage or when the interventions they were familiar with were not successful. Family caregivers often experienced feelings of distress when they felt they could not control the pain because they “didn’t really get a lot of information” about medications, or other interventions (014). Further, this distress is intensified by the caregivers’ feeling that they are ultimately responsible for alleviating the pain. Another caregiver stated that he felt, . . . a sense of inadequacy . . . I really felt that I had responsibilities of making sure that she took all these pills at the appropriate hour and time. And I didn’t really fully understand what those pills were for. And


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so I was feeling very much inadequate in being able to fulfill a function that I was ill-equipped to do . . . And I needed to be trained and I was totally untrained. And that caused certainly a great deal of inner anxiety for me. (005)

Family caregivers were using pharmacological and nonpharmacological strategies when they were attempting to relieve pain. Even resourceful and knowledgeable caregivers can experience distress and anxiety as they make decisions about what to do and attempt different strategies, wondering if any will work, when, and to what extent. Family caregivers grew discouraged when pain relief was not necessarily a guaranteed outcome. One family caregiver stated that she was . . . scared and upset and . . . [did not have] any kind of control. I don’t know what to do besides giving more pills and even that takes a bit of time to work. So it’s hard. It’s really, really hard, actually . . . And then I go out sometimes just because I think I’m going to die and explode. (014)

For some this had effects on their confidence and frame of mind: There’s nothing much I can do for her pain. You know like. Yeah, it’s great to say that somebody’s got pain and to try and help them. It’s almost impossible even like in her situation even with drugs you can’t take the pain away. So apart from that it’s just, it’s a bad motivation I guess to say just grin and bear it. But after a while it’s too hard to always have a smile on. (002)

One family caregiver felt “frustration” when “nothing helped” the pain, then arranged for his wife’s admission to “a very good palliative care program.” (005). He felt helpless because he was unable to control his wife’s pain and therefore had to make, what was for him, an agonizing decision to admit her to the hospital for pain control. Although this caregiver showed that he was resourceful at mobilizing resources, he viewed this admission as failing to uphold his commitment to caring for his wife at home because he felt he did not have adequate information to prepare himself. In fact, this family caregiver, when asked to validate the sentiment of “flying blind” made by a previous caregiver, agreed by saying “that about sums it all up.” Although most family caregivers identified the need for information as being paramount in the early stages, throughout the process new issues and concerns led to new questions and needs for information. As a result, these family caregivers were often in a continuous state of distress.

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Lambs to Slaughter (unsupported) Closely related to “flying blind” was the experience of feeling like “lambs to slaughter.” This theme represented sources of distress found in the relationship between the family caregivers and the health care providers caring for the patient. When caregivers did not feel supported by health care providers, they experienced feelings of isolation or abandonment leading one family caregiver to articulate this as being “lambs to the slaughter.” In addition, health care providers were the key source of information and knowledge for pain management. Although the majority of family caregivers felt that they had supportive, collaborative relationships with the health professionals, those that did not have such relationships expressed distress related to not having this support and/or access to information. When the relationships were strained, the information family caregivers received and their knowledge about pain control was compromised. The following comment illustrates the critical link between developing a relationship with the healthcare team and receiving information from them. When somebody’s diagnosed with cancer, right away you should talk to these people [healthcare professionals] . . . get all the information you can get and get all the help you can get and everything . . . and you don’t realize that these people [health care professionals] are all there to help you. So you have to take everything you can get. (018)

Many family caregivers felt distress as they tried to develop relationships with the health care team, whether it was to seek information or obtain support, and could not get their concerns addressed: I try to ask as many questions as possible. Obviously, he was not able to give me all the answers because he was not the oncologist, he was the surgeon. So I have to say that was quite a run around. I felt like I was not able to get any answers. It was very difficult, especially in the first little while without having any kind of feedback. And I would try and call the nurse, and she wouldn’t call me back. And it was just, I think at the very top when we needed the most information, there was none available. The only information I got was from the Internet. (019)

Not having the support and information she needed led this caregiver to feel that she could only “chase the pain” (019) instead of being able to prevent the pain crisis from happening. Caregivers also thought critically about the knowledge that they were provided and wanted information that was tailored for their families. These caregivers felt frustrated when they felt that health care providers were not listening to the family’s concerns or suggestions and meeting their individual


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needs: “And they don’t look outside the box. They said it’s their way or no way” (002). Family caregivers also reported dissatisfaction with the timing and the content of the information provided by health care providers, leading to concerns about caregiver preparedness to deal with challenging situations as they arise. As one caregiver noted: I find that the medical community in general doesn’t tell you much about what could happen, might happen and probably will happen. They don’t like to tell you that. They like to tell you things on an as need to know basis. And that’s a big problem because generally things tend to go wrong, pain increases, complications arise. (012)

The perception that the healthcare team caring for the patient was not available or accessible to them caused a great deal of tension for several family caregivers. In contrast, family caregivers who felt they had successful relationships with the nurses or their physician felt little distress about their accessibility during a pain crisis although there were still concerns about what would happen “after hours.”

It Hurts to Watch Somebody You Love Suffer The final theme relates to the emotional pain experienced by family caregivers witnessing their loved ones in pain. One family caregiver described her husband as being in “agonizing” pain and “writhing on the floor in agony,” which she was not prepared to manage. Her distress was evident as she described feeling: “Helpless because there’s nothing you can do to take the pain away . . . it hurts to watch somebody you love suffer. It’s horrible” (012). The following quote also highlights how distress associated with observing suffering in a loved one is related to the responsibility of managing the pain: “I feel terrible because I cannot help him. You know. It’s a very bad feeling to see somebody suffering. You’re standing there like a fool and there’s nothing you can do.” (006)

Further, the experience of caring for someone in pain can have a lasting impact on the caregiver and can influence subsequent caregiving experiences. As illustrated by one caregiver: My mother had cancer . . . she died a very painful death. . . . I was her sole caregiver and . . . we kept her home till the day she died. And that was the hardest thing- to see somebody suffering with pain . . . . I think that having been involved once with somebody that you love so much kind of keeps you one step back. Saying that I’m not going to get that

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hurt again. Even though you’re totally involved and you totally care, I’m more professional in my outlook . . . I don’t know what else to do. (001)

This caregiver was experiencing distress over the fact she had already lost her mother to cancer, and that she had died in pain. As a result she refused to allow herself the same degree of caregiving investment and distanced herself emotionally from her husband. This left her feeling distressed about her ability to successfully manage his care, including his pain. In addition, some patients or caregivers may have beliefs that pain is related to disease progression (Vallerand et al., 2007), which may or may not be the case. In the following situation the caregiver describes how the patient expressed how he felt that perhaps he may die soon: It’s very painful [to watch] because he’s a very strong man. He usually doesn’t tell you when he’s in pain. You have to pick it up by his actions. When he freezes or he’s almost falling. It’s painful and then he expresses concerns . . . about how much longer is this going to go on for? And he’s expressed that he’s going to die. So, it’s painful. (001)

The distress in this situation was related to seeing their family members in pain and in contemplating their death. Distress related to thoughts of death was often related to episodes of unrelieved pain. At these times, family caregivers wondered whether death was a preferable alternative to living a life in pain: And so if the image was: here is a person who is suffering [from pain] so severely and so constantly and wants to end it all, there was nothing in terms of the ray of hope that would cause me to balance my sense of desperation almost. And this is what she wanted, I began to think that: “I hope that she does die” . . . and of course that was a really distressing conclusion. (005)

DISCUSSION This study highlighted the fact that caregivers managing a family member’s pain at home felt stress, anxiety, helplessness, and frustration specifically related to their efforts at pain control. As a result, they were often overwhelmed with the pain management responsibility. When the patient was in a pain crisis they sometimes wished death would come and then felt guilty for the thought. The findings from this study reinforce previous reports that family caregivers of cancer patients are at risk for caregiver burden, and subsequently psychosocial consequences such as distress, anxiety, and depression (Flaskerud et al., 2000; Mehta & Hamel, 2011; Miaskowski et al., 1997; Yates et al., 2004). It further adds to the body of work that underscores



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the fact symptom management, and in particular pain management, remains one of the most distressing responsibilities for the family caregiver. In addition, it brings to light the unique context of the home environment, and thus several sources of distress that emerge from the challenges of managing pain outside of a health care institution. This underlines the fact that there is a need for health care providers to assess how family caregivers are managing each source of distress and to provide the necessary support. If not assessed and addressed, pain management at home over time may result in an additional psychological impact on the caregivers as new stressors and challenges arise from their current responsibility of pain management. The puzzle of pain management provides a theoretical framework that identifies and describes several processes that family caregivers engage in as they attempt to manage pain at home for palliative cancer patients (Mehta et al., 2010). The results of this secondary analysis revealed that as they engaged in these pain management processes, they expressed a range of different sources of distress. This has several important clinical implications.

CLINICAL IMPLICATIONS The puzzle of pain management indicates that family caregivers must engage in “accepting responsibility for pain management,” prior to being able to engage in pain management processes (Mehta et al., 2010). The knowledge that this is the first piece of the puzzle suggests that health care professionals should assess the family caregiver’s comfort, confidence, and commitment to the responsibility of pain management. If this is not done, family caregivers may feel that the pain management responsibility is “like a prison.” The secondary analysis revealed important information in that if health care professionals incorrectly assume the family caregiver has accepted the responsibility for pain management at home, this may result in challenges for the family caregiver, poorly managed pain, and possible family caregiver distress. Accordingly, a review of psycho-oncology literature done by Rose, Radziewicz, Bowman, and O’Toole (2008) highlights the fact that an important initial intervention is screening for level of distress and related concerns. “Flying blind” for family caregivers meant experiencing feelings of helplessness, related to inadequate knowledge, leading to frustration. A review article focused on family caregivers’ information needs showed that knowledge about pain management was most important to them (Docherty et al., 2008). It is important to assess what information family caregivers have, and what information they feel they need. Notably, in this study, it was articulated by several family caregivers that, as the pain changed, pain management had to be tailored appropriately, meaning informational needs changed over time. Given that seeking information caused distress related to inaccurate or inadequate information about the disease, the pain, and pain management,


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health care professionals can develop interventions related specifically to addressing this pain management process. The importance of providing information and increasing a family caregiver’s knowledge of the management of cancer pain has been previously documented. There are several interventions that can benefit family caregivers. For example, telephone support, tape-recorded information, and printed material are effective interventions and have been shown to have positive effects such as less anxiety, greater knowledge, greater sense of selfefficacy, and confidence in performing caregiver roles (Honea et al., 2008). If patients are hospitalized, individualized bedside training in pain management for family caregivers prior to patient discharge may be a possibility. Hendrix and colleagues (Hendrix, Abernathy, Sloane, Misuraca, & Moore, 2009; Hendrix, Landerman, & Abernathy, 2011; Hendrix & Ray, 2006) have shown that this form of individualized training regarding symptom management is feasible, well received by family caregivers, and leads to improvements in self-efficacy regarding symptom management and home care. In this study, one caregiver felt strongly that he needed “an intensive training program” (002). Information was the key to not being blind in their attempts at pain management and led to increased feelings of control and confidence, and decreased feelings of helplessness and frustration. Also noted is the fact that family caregivers who have demonstrated higher pain management knowledge reported significantly fewer barriers to pain management (Vallerand et al., 2007). Family caregivers felt they needed to be asked if they felt prepared for the responsibility of pain management at home, and if they felt they had the internal and external resources needed to manage; they needed support appropriate to their situation. Accordingly, health care professionals can also provide educational and problem-solving skills training (Haley, 2003; Kim & Given, 2008). Psychosocial assessments can lead to supportive counseling as another critical intervention, which has shown benefits such as reduced burden and distress in other family caregiver populations (Jang et al., 2004; Visser-Meiley, van Heugten, Post, Schepers, & Lindeman, 2005). Psychosocial oncology programs can also support family members with interventions such as stress management, crisis intervention, meaning-making interventions, and family or couples therapy (Mehta & Hamel, 2011). The image of family caregivers as “lambs to slaughter” captures their sense of feeling unprepared and unsupported by health care providers. Embedded in this description or source of distress was the notion of the trust required in the relationships formed with the health care team. With anticipatory planning, health care professionals might be able to help family caregivers develop the necessary skills and tools that allow them to successfully manage changes in the patients’ pain experience. Together they can build a plan to deal with changes in pain as soon as they arise, allowing them to feel less helpless and frustrated while potentially getting the pain



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under control sooner. This would decrease the family caregivers’ feeling they had no control over the pain management plan at present, and for the future, enabling them to provide optimal care for the patient. Practical clinical implications could include ensuring that family caregivers were comfortable and secure in their relationships with the health care team by explaining the relationship, providing contact information, creating a list of resources, and outlining a plan of action in the case of a pain crisis. When family caregivers expressed that “it hurts to watch somebody you love suffer,” they were referring to the existential and psychological distress felt when pain relief is not achieved. Kazanowski (2005) also noted that family caregiver stress is related to the “perception that the patient is suffering or will suffer” (p. 180). This was particularly salient to family members who are caregivers as they all felt pain relief was their responsibility. Because an important goal for continuity of care at home is for patients to remain safe and comfortable (Powazki et al., 2000), family caregivers felt they had failed in their duties to keep the patient pain free. It is critical that health care professionals assess and support family caregivers in what they are doing, and monitor for strategies that are less effective. Furthermore, a collaborative approach to pain management diffuses the responsibility and assures the family caregivers that pain management is a priority in the plan of care for their loved one. In addition, recognizing the influence that witnessing the patient’s suffering and pain has on anticipatory grief and bereavement highlights the need to intervene so the patient’s pain is optimally controlled, and in turn, the family caregivers are not needlessly “hurting” as well. In response to the sentiments expressed by some family caregivers about the challenges in developing relationships with the healthcare team, health care providers may need to consider the type of relationships they are building with patients and families. They can facilitate the process of establishing a pain management relationship with the family caregivers by ensuring that pain management is openly discussed. Relationships built on the tenets of collaboration and respect for each party’s expertise may be more satisfying for family members. In addition, cultivating trust in relationships with patients and families may mean family caregivers feel more secure about ¨ en et al., 2007). managing pain at home and experience less distress (Ohl´ Overall, addressing the identified sources of distress, and acting to help family caregivers avoid or manage them, can have a significant impact on the psychosocial well-being of family caregivers. For example, addressing their distress while providing care may prevent or reduce psychological morbidity during bereavement. In fact, Cohen and colleagues (2007) showed that family caregiver preparedness to provide care was associated with less depression and better quality of life in bereavement. Further, Kelly and colleagues (1999) found that if the family caregivers perceived themselves as the recipient of little assistance and support from health care professionals as they were managing the care of their family member, it was associated with

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a poorer bereavement outcome. Assessing family caregivers as they engage in the pain management processes permits insight into who may be at risk for future psychosocial complications. Early identification of those family caregivers in distress may avert complicated grief by providing ongoing psychosocial support along the illness trajectory and facilitating the bereavement process if necessary (Kurtz, Kurtz, Given, & Given, 1997; Stroebe, Folkman, Hansson, & Schut, 2006). Furthermore, family caregivers’ perception of their emotional distress and caregiving-related concerns (e.g., pain management) is an important predictor of bereavement maladjustment (Ferrario, Cardillo, Vicario, Balzarini, & Zotti, 2004).

CONCLUSION Family caregivers managing a loved one’s cancer pain at home are at risk for psychosocial distress. As they engage in the process of pain management, the challenges confronted often lead to feelings of helplessness, frustration, and distress. This study identified four key sources of distress that can help health care professionals better understand the experiences of these family caregivers and tailor supportive interventions to meet their needs. Ongoing assessment of family caregivers’ information needs and provision of psychosocial support, in the context of collaborative relationships with health care providers, is important for the well-being of patients and caregivers.

ACKNOWLEDGEMENTS Lisa Chan would like to acknowledge the Canadian Institutes of Health Research (CIHR)/National Cancer Institutes of Canada Strategic Training Program (grant no. STI-63286) in Palliative Care Research, the CIHR New Emerging Team (grant no. 129692) in Family Caregiving at the End of Life and the CIHR Canadian Researchers at End of Life Network (grant no. PG-05-0292) for their support.

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