Cocreating Meaning Through Expressive Writing and Reading for Cancer Caregivers

Abstract

Purpose:

Caregivers of patients with cancer cope with socioemotional challenges, which can adversely affect their well-being. We developed an intervention, expressive writing and reading (EWR), to promote emotional processing and social connectedness among caregivers. In a single-arm pilot study, we assessed its feasibility and perceived usefulness.

Methods:

Caregivers participated in weekly 1.5-hour EWR workshops offered over 20 weeks. After 4 sessions, they completed semistructured interviews, which were analyzed using qualitative descriptive analysis.

Findings:

Of 65 caregivers approached, 25 were eligible, 18 consented, and 9 (50%) caregivers completed at least 4 workshops and the interview. Their responses revealed 3 themes: “inner processing,” “interpersonal learning,” and “enhanced processing and preparedness.” Perceived benefits of EWR included emotional and cognitive processing (individual and collaborative), learning from the emotions and experiences of other caregivers, and preparing for upcoming challenges.

Conclusions:

Expressive writing and reading can be a safe and cost-effective supportive intervention for caregivers of patients with cancer.

Keywords

expressive writing caregiving interventions social support emotional processing

Introduction

In 2012, there were 14 million new cancer diagnoses worldwide.¹ With the rate of survival increasing, significant caregiving responsibilities are being transferred to informal caregivers who are usually spouses, adult children, friends, and relatives of the patients.² These caregivers are tasked with managing medications, symptoms, and distress.³ They often face social, physical, and psychological challenges, which can take a significant toll on their health.^4
-6 Up to 35% of family caregivers experience depression and anxiety⁷ and feelings of helplessness, hopelessness, and anticipated loss and grief.^4,8 For this reason, caregivers have been recognized as “second-order patients,” who should be receiving supportive care.⁹

The distress experienced by caregivers may be in part related to isolation and inadequate social support.^10,11 Loneliness is common to patients with cancer and their caregivers, but as compared to patients, caregivers report feeling less socially and emotionally supported by their families and health-care professionals.^11,12 Caregivers express a desire for increased communication and support from their social networks.¹³ Social support may be particularly important in the final stages of illness, when the burden of caregiving is accompanied by the stress of preparing for bereavement and anticipating loss.¹² Unfortunately, few family care services have been incorporated into clinical oncology settings.⁵ There is a need for safe and cost-effective interventions to support caregivers in their difficult journies.^14,15

One existing psychosocial intervention that may address this need is expressive writing (EW). Expressive writing involves sessions of solitary and unconstrained writing about personal experiences and life events.¹⁶ Expressive writing promotes emotional and cognitive processing when writers articulate and explore their thoughts and feelings.^17
-19 Despite small effect sizes, it has been associated with improved well-being and various health-related outcomes in different samples (for a meta-analysis, see the study by Frattaroli²⁰). Importantly, it is simple and implemented with minimal clinician intervention, making it a cost-effective strategy to enhance well-being.^21

-24

Concerns about loneliness and social isolation among informal caregivers¹¹ suggest that enhancing EW with a social component may be useful. In samples of general practitioners and nurses, reflective writing and sharing in a group setting has been found to promote a sense of community and personal exploration.²⁵ Such an intervention may provide social and emotional support for caregivers of patients with cancer, allowing them to foster connections with others experiencing similar challenges.

Caregivers of patients with cancer report being open to participating in structured support programs led by professionals.¹³ However, it is unclear whether an EW intervention with a social component is feasible to implement and useful for this sample. To address this issue, we developed an Expressive writing and reading (EWR) intervention, characterized by professionally facilitated group writing and sharing. This intervention involved weekly sessions of EW and a novel sharing component where caregivers read their writing out loud and received feedback from group members. In a pilot study, we evaluated caregiver experiences with EWR. We report findings from qualitative interviews conducted with 9 caregivers who completed 4 or more EWR workshops.

Methods

Participants

Study recruiters approached caregivers in waiting rooms of a comprehensive cancer treatment hospital in a large Canadian city, and they distributed brochures and posters. The study was described as a group workshop for family and friend caregivers of patients with cancer, focusing on a writing technique to help reduce distress and promote well-being. Participants were asked to attend a minimum of 4 workshops at the hospital. Eligible individuals were 18 years of age or older, able to read and write in English, and caring for a patient with cancer treated at the hospital. Exclusion criteria included a self-reported diagnosis of acute mental illness, loss of a close loved one within 6 months of study participation, an unwillingness to attend at least 4 EWR sessions, or an unwillingness to receive and provide feedback in a group setting. Prior to the first workshop, participants were notified by telephone of all workshop dates and provided basic demographic information (Table 1).

Table 1.

Characteristics of Caregivers Who Attended At Least 4 EWR Workshops (n = 9) and of the Patients They Cared for (n = 9).

Caregiver Characteristics (n = 9)	Mean/N	SD/%
Variables
Age (years)	63.67	13.18
Gender (female)	8	88.9
Level of education (≥university graduate)	5	55.6
Employment status (retired)	5	71.4
Marital status
Married/common law	5	55.6
Single	1	11.1
Separated/divorced	3	33.3
Annual household income (<$60 000)	4	44.4
Relationship to patient
Spouse/common law partner	4	44.4
Parent	2	22.2
Other family	1	11.1
Friend	1	11.1
Other	1	11.1
Patient Variables (n = 9)	Mean/N	SD/%
Variables
Age (years)	70.56	6.73
Gender (female)	5	55.6
Type of cancer
Gastrointestinal	2	22.2
Genitourinary	2	22.2
Gynecological	2	22.2
Breast	1	11.1
Head and neck	1	11.1
Other	1	11.1
Duration of illness (months)	10.01	13.45
Cancer stage
Stage III	3	37.5
Stage IV	1	12.5
N/A	4	50

Abbreviations: SD, standard deviation; N/A, not available.

Ethics

This study was approved by the University Health Network’s Research Ethics Board, and all study procedures were performed in accordance with this institution’s ethical standards. Written informed consent was obtained from all individual participants included in the study.

The EWR for Caregivers Workshop

Two psychiatry residents (M.A.H., P.U.) trained in narrative-based intervention,²⁶ with experience in EW and group therapy, conducted the workshops. They cofacilitated 1½-hour weekly EWR groups at the hospital supervised by a staff psychiatrist (A.P.) from a different hospital.

Each group included 4 to 8 caregivers, and one of the residents was designated as the group leader. At the beginning of each session, the group leader provided instructions for writing. Participants were told that they would be writing about a prompt, and they were instructed to “really let go and explore their very deepest emotions and thoughts”¹⁶ (full instructions are provided in Appendix A). Participants were then assigned writing prompts that were not all specific to cancer. Some prompts were vague and either positive (eg, “describe a happy family memory”) or negative (eg, “describe your worries”). Others were specific to caregiving (eg, “describe a highly meaningful event in caregiving”; Appendix B). After being assigned a prompt, participants brainstormed for 5 minutes and then wrote freely for 20 minutes. After writing, each participant was asked whether they would be willing to share their writing with the group.

Sharing was always voluntary, and usually one or two participants agreed to read their writing out loud. The rest of the session was dedicated to sharing interpretations, thoughts, and feelings about the writing. The reader was instructed to listen to the discussion for 15 minutes without responding or commenting, to allow a free flow of ideas. Afterward, the reader was reinvited to address concerns and questions raised by the group.

Qualitative Interviews

Y.W.L. conducted hour-long qualitative interviews with participants who completed 4 or more EWR workshops (Appendix C contains the interview questions). The interviewer began by asking participants what they expected from EWR. Next, the interviewer inquired about aspects of the session, such as the experience of writing, sharing, and listening to others. At the end, participants offered additional comments and suggestions to improve the workshop.

Qualitative Data Analysis

The qualitative interviews were analyzed using a modified version of the Qualitative Descriptive Method.²⁷ To preserve the integrity of each story, transcripts were read multiple times to outline summaries for each individual case, which included remarkable and distinctive elements. Concept maps and session notes were used to aid concept organization and topic development. As topics emerged, we validated each by returning to each case to look for evidence. Finally, a thematic profile was created to describe the overall story of the studied phenomenon that was representative of all cases.

Results

Response Rates

A total of 65 caregivers were approached over an 8-month period from 2014 to 2015, and 4 responded to the posted brochures and flyers. Five individuals were deemed ineligible as they did not answer phone calls from the research staff, 13 did not return telephone calls, and 22 had scheduling conflicts. Among 25 eligible caregivers, 18 (72%) consented to the study, 15 (83%) of 18 participated in at least 1 workshop, and 9 (50%) participated in at least 4 workshops and completed a postworkshop interview. Two of these 9 participants attended 4 workshops, 2 attended 6, and 5 attended 8 or more workshops. We called participants who attended less than 4 workshops to inquire about their absence, and most reported not attending due to a scheduling conflict.

Qualitative Findings

Two overlapping themes emerged from our qualitative analysis of interviews with participants (depicted in Figure 1). The first theme, “inner processing,” referred to emotional and cognitive processing typically derived from the EW component of the workshops. The second theme, “interpersonal learning,” described the ways participants learned from others during group sharing. The intersection of these 2 themes produced a third theme, “enhanced processing and preparedness.” This theme describes benefits related to the combined impact of writing and sharing, such as gains in insight and preparedness for the future. These themes are detailed below.

Figure 1.

Thematic structure of responses from qualitative interviews with participants.

Inner Processing

The first theme describes EWR’s provision of a safe space for participants to release, process, and reflect on their caregiving experiences. These experiences often involved sadness, anger, or fear of the unknown. For some participants, reflecting on the challenges of caregiving was overwhelming and produced negative feelings or exhaustion that lingered in the days following EWR (Table 2). However, these lingering sensations may reflect cognitive processing or attempts to “understand, evaluate, or figure out” the negative emotions explored in the workshop (Table 2). Participants noted that writing was particularly helpful in promoting emotional and cognitive processing. It allowed participants to contextualize their experiences as having “a beginning, middle, and end” (Table 2). Participants mentioned that writing organized and clarified their inner states, which helped them recognize meanings and patterns in their thinking (Table 2). For some, writing was an opportunity to resolve a challenge, gain a new perspective, or achieve self-discovery (Table 2). For another participant, it simply provided a silent moment to accept her mother’s illness (Table 2). Overall, writing and reflecting allowed participants to concretely explore and process their emotions and thoughts. Although this aspect of EWR was often difficult or unpleasant, it yielded benefits such as clarity, insight, and self-awareness.

Table 2.

Three Themes Emerging From Qualitative Interviews About EWR and Supporting Quotes.

Theme 1: Inner processing	“[I’m] just overwhelmed.…I can see that I am very upset for 2 or 3 days after [EWR] if it’s been extremely heavy, because the emotion is too heavy for me.…Sometimes I just go home and sleep. Sometimes I’m just exhausted.”“Two of the sessions have been very heavy in the sense that they dealt with some very bleak situations that were unresolvable. And so I would be upset for a couple of days. But that was a process of me trying to understand, evaluate, figure out what struck me so hard in this session. And then eventually that it would dissipate and then I would be fine.”
	“I think [writing] gives the writer time to go inside and to give it a structure, whereas in a conversation, most of the time we are not thinking beginning, middle, and end, we are just talking.”“For me, and I’m not sure that this is true for everybody, there’s a clarity for me that comes with writing. The words that come through my pen are different than the ones that come out of my mouth.”
	“I like the idea that by journaling, it brings out all these hidden meanings that you don’t know until you write it. I really like it.…When [the thoughts] come out of your mind, it’s something more concrete. Because it’s concrete and when you write, you get to see a pattern. And things emerge and when you’re writing is very personal and you see it and it helps you organize your thoughts.”
	“The thing about writing is that it gives you time to discover yourself.”
	“I like [that] people…hear what you’re saying, so it validates your feelings, whether it’s right or wrong.…You pick up on…something that’s underneath her writing, her talking, her reading. And then the crying. You feel the pain. When you watch the expression on [the participant], she was crying when she was getting the feedback today. Like, how real is that? I was crying inside too because you could feel the pain. People got her.”
	“People have boundaries so I think what’s happening is by writing, you cut out a few boundaries and then when you talk about your writing, because everybody has a similar emotional response to the situation, you get right down to it. All the social boundaries are torn.”
	“[To] hear somebody else who is struggling, [I feel], ‘Oh yeah, I’ve been there. I know what that’s like. I’m not alone. Somebody else understand[s] what I’m talking about.’”
	“Well, you don’t feel as bad because there’s other people who experience the same sadness, the same bleakness…I think also in that class we talked about anger and guilt and all that sort of stuff. And sometimes when somebody is that ill, you don’t really have [the right to be angry at them]. So, um, you feel guilty or whatever, um, and even anger, it is a huge guilt.…When the people in the group share their emotions, you know they feel the same way, so it lessens guilt. So some how I got that out of our sessions, which was positive because, I didn’t feel guilty about being angry anymore.”
	“So um, so part of me you can—you know, you can hear the other wisdom of someone whose struggled or is still struggling with it, you know. You hear some of how they’re managing it.”
Theme 2: Interpersonal learning	“I heard [a group member] say how long it had been since her mother had been getting treatments and I thought, ‘Oh that’s so long.’ And how different that is than if you’re right at the beginning of treatment. So, um, yeah, I think you’re in a different place each week.”
	“What about when [the patient] finishes his radiation next week? Can I still come after that? There’s still some mysteries about what happens next.…Well, the mystery about cancer, you know, like this disease. How long does it take before he can eat solid food? And also, the book says there can be emotional or memory problems with head and neck cancers and so these things.…they also say, well we don’t know how long this side effect or that side effect will go on and some might not ever disappear. So yeah. You know, there are mysteries.”
	“You’re talking to people, and some of them, in 3 months, they’ve lost somebody and they’ve been married for, you know, 50 years, and it seems the worst thing is not just going up to it, afterward it’s what does a caregiver do with all this time?”
Theme 3: Enhanced processing and preparedness	“I liked that the psychiatrist would interject statements that might trigger something else or might explain something that you don’t totally understand.…Well, it’s pretty profound because you have the input from people in the group and it’s enlightening in some way.”
	“What I get, from listening to other people’s pieces and sharing, you know, it gives you kind of insights.”
	“You’ve written something, but somebody has seen it in a totally different way and…it then makes you think, ‘What did I say that would make the person think this?’”
	“I was shocked because when you read [the writing piece] out, it gives a whole different interpretation, and I’m just shocked how the whole group picks up things about your personality, and when you’re writing it you don’t know. It’s like they see the transparency and that helps in healing and coping.”
	“I’ve seen people be very surprised at what people picked out from their piece [of writing]. And I think that’s very valuable. We obviously don’t know ourselves sometimes. People pick out clues that we are not understanding we are putting out there. And that’s valuable to learn about yourself.”
	“[Group sharing] depersonalizes stuff so that you can be objective about yourself whereas you’re too immersed in it to understand another point of view, unless you do something like [group sharing]…What I think this whole process is doing is creating a healthier person, and I think that…[others talking about your writing]…drills down to a certain level of emotion that you tap out of yourself and then you have insight into yourself, because of other people. So it’s pretty grounded. It’s fantastic really.”
	“There’s extra therapeutic value in people discussing what you’ve written and having that extra distance.”
	“The reality is it’s happening so maybe it is a good thing because you know, you see somebody else, not just know, but you see somebody else going through that. And then you know more of what, and once you know what to expect, it becomes a little bit easier to handle it when it does actually happen, not that it’s going to be easy.”
	“Sometimes when you just listen to somebody and you think, it does help you. It makes you deal with decisions, with stuff that’s going on in your own life.”
	“I share some of the reading with [my mother]. And it’s brought about some interesting conversations with us. I mean, not that we wouldn’t have necessarily had them, but it was an opener for having those conversations. You know, well, we’re not there for more end-of-life conversations…but it’s opened up some things so the conversations could happen, so then you know, we can go and see the hospice because we’ve started to talk about what if she dies…she’s tired and suffering from the side effects of chemo and I’m trying to keep on top of what questions I have to ask, and who we need to coordinate with…So to actually have the space, the emotional space to be able to sit down when you’re not totally exhausted and you can actually have a conversation. Like, you know, ‘what would we do if you were dying? How would we handle that? What would you like to happen? Yeah, no, I don’t think I can help you at home, you know and, um, I know some people would like to die at home. I—that’s not something I can give you, Mom.’ And—so just to have that conversation. But, I think it’s an important conversation. And um, so she and I both know where we are. And we’re not making, you know, hard decisions ah—when things are really hard, just when they’re a little bit hard.”
	“Maybe something I can apply to myself is talking about it, that it is a journey (clears throat), it’s a journey with an (clears throat) end. It’s strange…Sorry.”

Abbreviation: EWR, expressive writing and reading.

Interpersonal Learning

The second theme captures participant feedback on group sharing, which is the novel component of the study’s intervention. By listening and empathizing with other caregivers, participants removed “social boundaries” and fostered a sense of connectedness and community (Table 2). Importantly, participants learned that others felt the same way they did, which validated their emotions. One participant took comfort in knowing that like her, other caregivers felt guilty about being angry (Table 2). Group discussions also allowed caregivers to exchange practical information. Participants benefitted by learning from the “wisdom” of others and seeing “how they were managing (the caregiving experience)” (Table 2). This learning not only occurred through the explicit exchange of strategies and advice. Considering the experiences of others who were at different stages of the caregiving experience offered a glimpse into the past or future. Participants could reflect on their early caregiving experiences, as well as gain insight into what may happen next, which helped them cope with the “mysteries of cancer” (Table 2). Group discussions provided an opportunity for participants to contemplate bereavement and what they might expect following the death of a loved one, such as the possibility that they may struggle with the sudden onset of free time (Table 2). Overall, the group component of EWR not only provided social and emotional support, it seemed to promote various forms of interpersonal learning among group members as well.

Enhanced Processing and Preparedness

In the qualitative interviews, participants described experiences with EWR that reflected an overlap between the 2 abovementioned themes (Figure 1). Combining inner processing and interpersonal learning allowed participants to gain a better understanding of themselves. Feedback from others provided a different lens or interpretation on participants’ writing. Based on this feedback, participants gained insights into aspects of their personalities and experiences that were previously overlooked (Table 2). These insights were identified as being “profound” and valuable for their health and the process of healing and coping (Table 2).

One mechanism by which insight or processing may have been enhanced in a group setting is depersonalization. Expressive writing and reading seemed to temporarily remove participants from their typical state of being, which was immersed in the day-to-day responsibilities and difficulties of caregiving. By distancing themselves from their own experiences, participants adopted a different or objective view, which appeared to have “therapeutic value” (Table 2).

Focusing on others was also useful in preparing participants for further caregiving challenges, such as end-of-life care and bereavement. Participants described how they applied what they learned about themselves and others during EWR into aspects of their lives, such as handling decisions (Table 2). Writing and sharing seemed to prompt caregivers to consider the future and take preparatory action earlier than they otherwise would have. One participant noted that seeing another caregiver struggle with a difficult stage of caregiving helped manage her expectations for upcoming caregiving experiences (Table 2). Another participant shared what she wrote during workshops with her mother as an opportunity to discuss end-of-life care. The stress and demands of her mother’s illness interfered with important conversations about the future, so this participant used EWR to initiate discussions about the logistics of her mother’s ongoing care. In this way, EWR helped her prepare for the future sooner, so she would not be making “hard decisions when things are really hard, just when they’re a little bit hard” (Table 2). Simply being exposed to discussions about late stages of caregiving and bereavement seemed to initiate emotional processing for participants who were not ready for these topics. One participant noted that although he knew his wife would pass away, he was not ready to talk about it with his family or even in his writing. However, he applied group discussions to his own experiences in acknowledging that his caregiving journey, like the journey of many others, will inevitably end (Table 2).

In sum, writing and sharing during EWR may have enhanced participants’ emotional and cognitive processing, perhaps by way of depersonalization. One aspect of this processing involved anticipating future challenges, such as the logistics of end-of-life care or the emotional impact of loss.

Suggestions for Improvement

Six of 9 participants offered their suggestions for improving the EWR workshop. Consistent with a low completion rate, caregivers expressed difficulties in accommodating EWR into their schedules. Suggestions to address this issue included offering EWR online, completing writing at home to allocate more time at group meetings for sharing and discussion, or sharing only parts of writing, such as a particularly evocative sentence, thought, or emotion. Another concern related to improving EWR’s accessibility for non-native English speakers. Strategies to increase accessibility involved an option for caregivers to complete EW in another language and displaying EW prompts visually or providing them ahead of time to allow for idea percolation. There was also a concern that some EWR workshops might be too heavy and emotionally exhausting for participants (Table 2). One caregiver suggested ending each workshop with a positive activity, such as sharing jokes or anecdotes, to help dissipate any lingering negative emotions. Another caregiver asked for guidance in implementing EW or other coping strategies at home, for example, with additional resources or writing prompts.

Discussion

Three themes emerged from interviews with caregivers following EWR: “inner processing,” “interpersonal learning,” and “enhanced processing and preparedness.” Caregivers reported that writing promoted emotional and cognitive processing, which led to clarity and self-awareness. Once participants had the opportunity to process their own thoughts and emotions, group sharing shifted their focus to other caregivers. In this novel component of the intervention, participants learned from the emotions and experiences of others. This learning helped participants gain a better understanding of themselves, which in turn affected their abilities to cope with, and prepare for, upcoming caregiving challenges. In sum, our findings suggest that the EWR intervention was useful for informal caregivers of patients with cancer.

Expressive writing and reading may be useful because it addresses the loneliness and lack of social support reported by caregivers in oncology settings.¹¹ Sharing allowed caregivers to form supportive networks. Caregivers consistently referred to the benefits of knowing that other caregivers experienced similar emotions and understood their experiences. This emotional validation and mutual understanding may have allowed caregivers to feel a sense of connectedness and belonging.²⁸

In addition to fostering connections, EWR seemed to enhance the processing that occurred during writing to impact the caregiving experience. Consistent with previous studies,^{20,

29} caregivers reported emotional and cognitive processing during EW, which was sometimes accompanied by negative feelings. Transient increases in negative emotion during EW have been observed in many studies.²¹ However, negative emotions may be important for deriving EW’s therapeutic effects. Habituation to negative emotion and cognitive processing have emerged as primary explanations for why EW promotes well-being.^20,21 As noted by a participant in our study and consistent with previous work,³⁰ the impact of these negative emotions tended to decrease over time. However, gains in insight or self-awareness derived from cognitive processing during EWR may continue to exert positive effects on participants and their caregiving experiences.^20,30

Furthermore, sharing and discussing in a group setting may have similarly offered a safe place to process emotions and thoughts in a social, collaborative way. Group feedback validated caregivers’ emotions, making it easier for them to confront guilt, anger, or other negative emotions during caregiving. Participants consistently reported that EWR helped them achieve insight and self-awareness, for example, by extracting new meanings from their experiences or patterns in their thinking. Studies suggest that caregivers who derive meaning and satisfaction from caregiving have better mental health outcomes.^31,32 Expressive writing and reading might therefore buffer against the emotional costs of caregiving by promoting personal growth, with its social component complementing and enhancing these therapeutic effects.

This socially augmented processing may help caregivers anticipate the loss of their loved ones, as described in evidence emerging for our third theme. Feeling socially supported and prepared for loss during caregiving is related to lower levels of complicated grief postbereavement.^33,34 By learning from experiences of others, EWR may prepare caregivers for upcoming challenges pragmatically and emotionally. Expressive writing and reading provided an opportunity for caregivers to consider and discuss logistical concerns, such as potential locations for end-of-life care. Because loss and bereavement were topics that often emerged organically in the workshops, EWR also provided opportunities for participants to prepare emotionally for the possibility that their loved ones pass away and the anticipated loneliness and grief. Thus, EWR may promote feelings of social support and preparedness, which may make end-of-life care and bereavement more manageable for caregivers. Even if the caregivers are no longer in touch when they are bereaved, they may continue to derive insights or support from their experiences with EWR.

Limitations

Participants self-selected into the study. Those attending 1 or 2 sessions may not have found EWR positive or beneficial, but their input was not included in the study. A randomized controlled trial is needed to systematically assess the benefits of EWR reported in our study (eg, insight, interpersonal learning, preparedness for the future). An important future direction also involves assessing whether EWR enhances caregiver adjustment to loss and bereavement.

Additionally, our sample size was small. One of the most cited setbacks related to low completion was that the workshop conflicted with caregivers’ schedules. This setback may help explain why interventions for caregivers have generally not been incorporated into clinical oncology settings.⁵ However, EW has been administered online, with promising results.³⁵ To increase convenience, it may be possible to administer EWR remotely, perhaps via confidential web conferencing.

Conclusions

Findings from our pilot study suggest that EWR can be a safe and cost-effective intervention for caregivers of patients with cancer. In addition to the provision of social support, benefits of EWR included emotional and cognitive processing (individual and collaborative), interpersonal learning, and preparing for the anticipated loss. During group sharing, caregivers gained a better understanding of themselves and their caregiving experiences and better equipped themselves to cope with upcoming challenges. Incorporating a social component into the EW intervention is feasible and potentially useful in supporting the difficult journey of caregiving. Future research should employ randomized controlled trials of EWR and assess web conferencing as a mode of delivery.

Footnotes

Appendix A

Appendix B

Appendix C

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study was supported by University of Guelph-Humber Research Grant Fund 2014-2015. Y.W.L was supported by Ontario Cancer Institute Knudson Post-doctoral fellowship 2013-2014. M.M.M. was supported by the Discovery Fund Fellowship at the Centre for Addiction and Mental Health.

ORCID iD

Marta M. Maslej

References

National Cancer Institute. Cancer Statistics. 2016. http://www.cancer.gov/about-cancer/what-is-cancer/statistics,2016. Accessed May 2, 2016.

Bevans

Sternberg

. Caregiving burden, stress, and health effects among family caregivers of adult cancer patients. JAMA. 2012;307(4):398–403.

Cormio

Bafunno

Catino

, et al. Psycho-social function and caregiver’s burden in patients with advanced lung cancer. J Thorac Oncol. 2017;12(1):S1414–S1415.

Gilliland

Fleming

. A comparison of spousal anticipatory grief and conventional grief. Death Stud. 1998;22(6):541–569.

Given

Northouse

. Who cares for family caregivers of patients with cancer? Clin J Oncol Nurs. 2011;15(5):451–452.

Nijboer

Tempelaar

Sanderman

Triemstra

Spruijt

van den Bos

. Cancer and caregiving: the impact on the caregiver’s health. Psycho Oncol. 1998;7(1):3–13.

Grunfeld

Coyle

Whelan

, et al. Family caregiver burden: results of a longitudinal study of breast cancer patients and their principal caregivers. CMAJ. 2004;170(12):1795–1801.

Moule

Pollard

Clarke

, et al. An integrated approach for individualised support: carers’ views. J Integr Care. 2014;22(5-6):253–262.

Lederberg

. The family of the cancer patient. In: Holland

, ed. Psycho-Oncology. 1st ed. New York, NY: Oxford University Press; 1998:981.

10.

Kim

Wellisch

Spillers

Crammer

. Psychological distress of female cancer caregivers: effects of type of cancer and caregivers’ spirituality. Support Care Cancer. 2007;15(12):1367–1374.

11.

Sahin

Mehtap

. Loneliness, depression, and social support of patients with cancer and their caregivers. Clin J Oncol Nurs. 2012;16(2):145–149.

12.

Grbich

Parker

Maddocks

. The emotions and coping strategies of caregivers of family members with a terminal cancer. J Palliat Care. 2001;17(1):30.

13.

Jansma

Schure

de Jong

. Support requirements for caregivers of patients with palliative cancer. Patient Educ Couns. 2005;58(2):182–186.

14.

Hudson

. A critical review of supportive interventions for family caregivers of patients with palliative-stage cancer. J Psychosoc Oncol. 2004;22(4):77–92.

15.

Kent

Dionne-Odom

. A national profile of mental health and support service need among family caregivers of adults with cancer in the US. Ann Behav Med. 2018;52:S486–S486.

16.

Pennebaker

. Writing about emotional experiences as a therapeutic process. Psychol Sci. 1997;8(3):162–166.

17.

Gersten

Baker

Teaching expressive writing to students with learning disabilities: a meta-analysis. Elem School J. 2001;101(3):251–272.

18.

Peterkin

Prettyman

. Finding a voice: revisiting the history of therapeutic writing. Med Humanit. 2009;35(2):80–88.

19.

Spera

Buhrfeind

Pennebaker

. Expressive writing and coping with job loss. Acad Manage J. 1994;37(3):722–733.

20.

Frattaroli

. Experimental disclosure and its moderators: a meta-analysis. Psychol Bull. 2006;132(6):823–865.

21.

Pennebaker

. Theories, therapies, and taxpayers: on the complexities of the expressive writing paradigm. Clin Psychol Sci Pr. 2004;11(2):138–42.

22.

Mackenzie

Wiprzycka

Hasher

Goldstein

Seeing the glass half full: optimistic expressive writing improves mental health among chronically stressed caregivers. Brit J Health Psych. 2008;13:73–76.

23.

Sexton

Pennebaker

. The healing powers of expressive writing. In: Kaufman

Kaufman

, eds. The Psychology of Creative Writing. Cambridge: Cambridge University Press; 2009:264–274.

24.

Calhoun

Tedeschi

. Posttraumatic growth: future directions. In: Park

Calhoun

, eds. Posttraumatic Growth: Theory and Research on Change in the Aftermath of Crisis. Mahwah, NJ: Lawrence Erlbaum Associates; 1999:215–238.

25.

Bolton

. Stories at work: reflective writing for practitioners. Lancet. 1999;354(9174):243–245.

26.

Peterkin

Esplen

Hann

Lawson

. A pilot study of a narrative competence group to enhance coping and quality of life in patients with HIV. Arts Health. 2013;5(1):5–18.

27.

Sandelowski

. Focus on qualitative methods—qualitative-analysis—what it is and how to begin. Res Nurs Health. 1995;18(4):371–375.

28.

Yalom

Leszcz

. The Theory and Practice of Group Psychotherapy. 6th ed. New York, NY: Basic Books; 2005.

29.

Smyth

Hockerneyer

Tulloch

. Expressive writing and post-traumatic stress disorder: effects on trauma symptoms, mood states, and cortisol reactivity. Brit J Health Psych. 2008;13(pt 1):85–93.

30.

Pascual-Leone

Yeryomenko

Morrison

Arnold

Kramer

. Does feeling bad, lead to feeling good? Arousal patterns during expressive writing. Rev Gen Psychol. 2016;20(3):336–347.

31.

Cohen

Colantonio

Vernich

. Positive aspects of caregiving: rounding out the caregiver experience. Int J Geriatr Psych. 2002;17(2):184–188.

32.

Nijboer

Triemstra

Tempelaar

Sanderman

van den Bos

GAM

. Measuring both negative and positive reactions to giving care to cancer patients: psychometric qualities of the Caregiver Reaction Assessment (CRA). Soc Sci Med. 1999;48(9):1259–1269.

33.

Schulz

Boerner

Klinger

Rosen

. Preparedness for death and adjustment to bereavement among caregivers of recently placed nursing home residents. J Palliat Med. 2015;18(2):127–33.

34.

Almberg

Grafstrom

Winblad

. Caregivers of relatives with dementia: experiences encompassing social support and bereavement. Aging Ment Health. 2000;4(1):82–89.

35.

Baikie

Geerligs

Wilhelm

. Expressive writing and positive writing for participants with mood disorders: an online randomized controlled trial. J Affect Disord. 2012;136(3):310–319.

36.

Hyvärinen

. Towards a conceptual history of narrative. In: Hyvärinen

Korhonen

Mykkanen

, eds. The Travelling Concept of Narrative. Helsinki: Collegium; 2006.