“It’s Hard,but We Could Kind of Laugh About It”: Exploring the Role of Humor in Brain Cancer Caregiving

Abstract

Research exploring the benefits of humor for caregivers is limited and, to date, no qualitative studies have explored the role of humor in brain cancer caregiving. To address this gap, we analyzed transcripts from twenty-one in-depth telephone interviews conducted with brain cancer caregivers from a strengths perspective. Thematic analysis using Braun and Clarke’s method revealed that humor functions as (1) an innate element of the self and relationship, (2) an expression of mutual connection and understanding, (3) a way of managing difficult or awkward moments, (4) a form of avoidance or a welcome distraction, and may be (5) helpful, or unhelpful, depending on where someone is in the brain cancer trajectory. Findings suggest that humor represents an important yet complex individual and family strength for health service providers to identify and build upon.

Keywords

brain cancer humor laughter carer caregiving qualitative

Introduction

“Perhaps I know best why man is the only animal that laughs: he alone suffers so excruciatingly that he was compelled to invent laughter. The unhappiest and most melancholy animal is, as might have been expected, the most cheerful.” Nietzsche

When a loved one is diagnosed with brain cancer, friends, and family members often take on the primary responsibility for their physical, cognitive, behavioral, and emotional care (Arber et al., 2013; Ownsworth et al., 2015). Although many informal caregivers (defined as people who give care to a friend or family member without payment; (Australian Institute of Health and Welfare, 2021)) derive a profound sense of privilege and satisfaction from their caring role, the complexities of supporting someone with brain cancer can also cause considerable stress and disruption to their daily lives (Boele et al., 2013; Halkett et al., 2018; Hricik et al., 2011; Petruzzi et al., 2013; Reblin et al., 2019; Schubart et al., 2008), leading to a loss of self-identity and exacerbate mental health morbidity and psychological distress (Boele, 2013; Haley et al., 2001; Pochard et al., 2001). As the disease progresses, friends and family can become overwhelmed by the changes in their loved one’s cognitive and neurological functioning, mood, and personality, leading to a feeling of low caregiving efficacy (Streckx et al., 2013; Weitzner & Meyers, 1997), the neglect of the caregiver’s needs (Schubart et al., 2008); ultimately, reducing caregivers’ own quality of life (Boele et al., 2013; Sherwood et al., 2006, 2007).

Supporting caregivers to cope with the stress of caring for a loved one affected by brain cancer requires careful attention to their inherent psychological and social resources (Boele et al., 2013; Cavers et al., 2012; Cornwell et al., 2012; Hricik et al., 2011; Madsen & Poulsen, 2011; Petruzzi et al., 2013). In particular, positive emotions (Reblin et al., 2019), self-efficacy (Boele et al., 2013; Sterckx et al., 2013) and meaning making (Baumstarck et al., 2018) have been identified as important internal qualities affecting caregiver coping when a loved one is affected by cancer. Equally important are external resources within the caregivers’ social network, including healthcare providers, who may provide informational and psychosocial support (Applebaum et al., 2016; Thakur et al., 2019). The family itself is also a vital buffer against stressful feelings (Zucca et al., 2010), and fostering teamwork, mutual support and open communication amongst family members can lead to significant improvements in caregiver depression, anxiety, insomnia, and physical, and emotional functioning (Northouse et al., 2012; Thakur et al., 2019).

In the wider oncology literature, a small number of studies have begun to examine the role of humor as an innate strength that has the potential to enhance caregivers’ capacity to cope with their loved one’s cancer diagnosis and trajectory. Tanay et al. (2013) define humor as “a subjective emotional response, resulting from the recognition and expression of incongruities of a comic, absurd and impulsive situation, remark, character, or action.” Existing studies highlight the role of humor in promoting caregiver coping and emotional relief (Harzold & Sparks, 2006), facilitating positive reframing (Reblin et al., 2019), counteracting feelings of frustration, fear, and uncertainty, and mitigating discomfort or embarrassment (Terrill et al., 2018). Although humor has been identified as an important character strength that can enhance caregiver coping, it has received limited attention in the caregiving literature. This may, in part, be indicative of the broader tendency of this literature to focus on the burdens, distress, personal costs, and stigma of the caregiving experience (Hughes, 2015). Considering evidence that cancer patients’ strengths are crucial in enabling them to cope with the illness (Rotegard et al., 2012), lack of attention to the innate strengths of their caregivers arguably represents a missed opportunity to identify and extend the repertoire of coping strategies for individuals and families impacted by cancer.

In recognition that caregiver strengths and capabilities still receive less attention, both in the empirical literature and in healthcare provision (Kristjansdottir et al., 2018; Rotegard et al., 2012), we employed Saleebey’s (1996, 2006) strengths perspective to analyze a subset of findings from a qualitative study that investigated the experiences, coping strategies and support needs of friends and family members who have cared for a loved one with brain cancer. Although this study did not explicitly set out to examine the role of humor in brain cancer caregiving, thematic analysis of participant responses revealed that humor was interwoven with a multitude of themes relating to caregivers’ needs and experiences when navigating the brain cancer journey. A decision was therefore made to focus on, and tease apart, the role of humor in brain cancer caregiving as a starting point to exploring its benefits as a strength and resource for coping. To our knowledge, this is the first qualitative study to explore the role of humor in brain cancer caregiving. This study sought to address the research questions: (a) what are brain cancer caregivers’ experiences of humor? (b) what is the role of humor in brain cancer caregiving? Given the paucity of research exploring caregiver strengths, it is hoped that the findings will reinforce recent calls in the wider oncology literature for those invested in cancer care to “wake-up” to the importance of humor and laughter (Samant et al., 2020, p. 353).

Methods

Theoretical Framework

The strengths perspective is both a moral and pragmatic approach used predominantly in social work (Saleebey, 1992), and recently gaining momentum in the field of nursing (Yu et al., 2020). The strengths perspective is founded on the idea that all people have strengths and capabilities and are able to draw on these to cope, and even flourish, in the face of adversity (Saleebey, 2000). This perspective, therefore, is the work of empowerment; helping individuals and families to discover and use their unique capacities, talents, skills, and resources to improve the quality of their lives, and recognizing that every maladaptive response may also contain the seeds of a struggle towards health and adaptation (Saleebey, 2000). Rather than ignoring problems, the strengths perspective requires professionals to collaborate with individuals and families, encouraging them to tell their stories according to their unique socially constructed reality, give meaning to the factors that impact on this reality, and identify the strengths they can use to respond to it (Pulla, 2017). A strengths-based approach provided a novel approach to analyzing the data from our study, revealing new knowledge to extend the wider field of humor in cancer caregiving; moving beyond the prevailing focus on caregiver distress and burden to explore the diverse and nuanced ways in which caregivers and their loved ones use humor as a strength and resource for coping.

Study Design

The primary research question guiding this study was as follows: how can families and carers of people with brain cancer be supported at all stages of the brain cancer journey? The aims of the study were to (i) explore the experiences of friends and family members caring for a person with brain cancer, and (ii) identify the resources, knowledge, support, and strategies they require, and draw on, to navigate these experiences. An exploratory research design, using in-depth qualitative interviews, was chosen to generate rich data on participants’ experiences, needs and strategies throughout the brain cancer journey. Ethics clearance was granted by the University of Newcastle’s Human Research Ethics Committee in July 2020, which operates in accordance with the Australian National Statement on Ethical Conduct in Human Research (2018).

Sampling and Recruitment

Participant recruitment for the wider, mixed-methods study was conducted in partnership with an Expert Advisory Group (EAG) and the project sponsors. A media release and video content were created to accompany the recruitment material and was distributed nationally via the communication channels of the project sponsors. This included a combination of paid social media advertisements on the sponsor’s Facebook and Twitter accounts, as well as website advertisements, and emails sent to the sponsor’s subscribers. Additionally, a brain cancer nurse coordinator distributed recruitment material within a large urban, tertiary teaching hospital, and researchers sent email invitations to key health and community-based stakeholders identified by the EAG. Non-probability, convenience sampling was employed to target eligible, unknown participants across Australia. Recruitment asked participants to share their experiences of caregiving for the purpose of informing the development of a supportive, online resource for informal brain cancer caregivers. Participants were invited to complete a cross-sectional web-based survey and join a secure, app-based, clinically moderated peer community for a period of 12 months. Interview participants were recruited from the survey and the peer community, after indicating that they would like to be considered to take part in an interview to explore their experiences in greater depth. People were eligible to participate in the study if they were (i) aged 18 years or older, (ii) currently living in Australia, and (iii) identified as a friend or family member of an adult person with a brain cancer diagnosis.

A total of 20 interviews were conducted with 21 participants who agreed to participate (n = 4 males; n = 17 females). Two participants, who were parents of an adult child with brain cancer, requested to conduct the interview together and were permitted to do so.

Participant relationships to the person with brain cancer were that of spouse (n = 11), child (n = 6), sibling (n = 1), parent (n = 2), and friend (n = 1). The most commonly reported brain cancer diagnosis of a loved one was Glioblastoma Multiforme (GBM; n = 11). Fourteen participants were bereaved at the time of interview, and seven were still caring for their loved one. Participants consented to have their data included for analysis at three separate timepoints: (i) via online consent prior to their interview, (ii) via verbal consent at the beginning of their interview, and (iii) via a member-checking procedure following audio transcription of their interviews.

Data Collection

In-depth qualitative interviews were conducted for the purpose of generating rich data on participants’ lived experience of brain cancer caregiving. Interviews were conducted via telephone to enable Australia-wide participation and a timely data collection process in line with funding timeframes. The interviews lasted between 40–60 minutes and were carried out by three experienced female researchers (clinical psychologist and two doctoral level social workers) and one male research associate with extensive clinical experience (social work).

Each interview began with a central question: “How would you describe your experience as a friend or family member of someone with brain cancer?” This was followed by prompt questions as needed to elicit more information about certain experiences as they were raised. Participants were not explicitly asked about humor or laughter. However, at times, interviewers referred to humor when responding to, or reflecting on, specific comments made by a participant.

Data Analysis

Interviews were recorded and transcribed verbatim using a professional transcription service, OutScribe Transcription, and analyzed using a combination of NVivo software and manual techniques by three researchers experienced in qualitative analysis (HC, HW, and CT), closely supported by a senior researcher (MH). Data were analyzed thematically using Braun and Clarke’s (2006, 2014) six-stage approach. Primary findings from this broader analysis will be reported in a separate manuscript. A second round of data analysis was then conducted to specifically explore the research questions and aims of this study. The research questions were kept intentionally broad to ensure identification of the spectrum of ways in which humor is used, or received, by caregivers throughout the brain cancer trajectory. Data were selected for analysis when caregivers made specific reference to the use of humor, or when they made explicit or implicit use of humor or laughter when recounting events or interactions. The research team employed a rigorous process of reading, re-reading, and rewriting, dividing the text into units of meaning by coding units of several sentences or short paragraphs into meaningful groups and systematically working through the whole data set. Then, codes were analyzed by HC and MH to consider if newly coded data and researcher observation could be combined into mutual themes. Each theme was defined by a central organizing concept that clustered the codes into meaningful units. Credibility and confirmability were increased through regular discussion and consultation among members of the research team.

Findings

Thematic analysis revealed five key themes: Humor as: (1) an innate element of the self and relationship, (2) an expression of mutual connection and understanding, (3) a way of managing difficult or awkward moments, (4) a form of avoidance or a welcome distraction, (5) being helpful, or unhelpful, depending on where someone is in the brain cancer trajectory.

Humor as an Innate Element of the Self and Relationship

In the instances where humor was explicitly discussed, several caregivers described it as a foundational aspect of their relationships pre-diagnosis and acknowledged that humor formed part of their loved one’s essential self. As a result, some caregivers described a sense of loss when their loved one’s humor was impacted within the sequelae of brain cancer symptoms. This was clear when one participant described the distress that she experienced watching her close friend lose her characteristic sense of humor due to “cognitive decline” as the disease progressed:

But she also had a beautiful heart, and a cheeky sense of humor, and so to see that stripped away from her, and to see her struggle with that was really difficult.

Another caregiver was able to express some lightness and joy by acknowledging past shared self-depreciating humor and laughter with her husband. Indeed, by finding the relevance of the past jokes to their current circumstances, there was a sense of an ongoing bond and shared meaning making:

You know, [name of loved one] always used to tease me about being polly perfect. If you did actually have someone over, you’d be racing around trying to clean up, which I hadn’t done in advance, because I’m not big on housework, but now I’m just, I don’t care, “Come on in!”, that’s like how it is [laughs]. Maybe that’s a good thing, I don’t know. That might be a positive coming out [laughs].

This statement was made even more poignant in the conversation that immediately followed, which the participants’ efforts to “just do something silly or funny or loving to help” their loved one—who was palliating at home—despite describing personality and cognitive changes as “the loss of the person I knew just 6 months ago” as one of “the hardest things to actually deal with yourself.”

As another participant described, the ongoing existence of humor and positivity within the relationship, even in the context of a “rollercoaster” of “awful” physical and cognitive changes, can promote caregiver coping. For example, the “kidding” from the participant’s partner that made light of their life-threatening situation allowed for an extension of the relationship bonds, even after their loved one’s death:

He was amazing… he’d go, “I’m still on this side of the grass”. We’d go, “Yeah, all right”. So, now, he’s still teaching us for the way we live now.

Similarly, several participants described humor and laughter as an innate individual or family strength that they drew upon to cope with brain cancer:

Interviewer: It sounds like you used humor to cope as well

Participant: Absolutely, absolutely yes…humor was in my family and so we used humor a lot, a huge amount of humor and so did [name of loved one]. He had a very dry humor so even when he, like getting right towards the end, he would still sometimes be able to crack a joke.

Moreover, a sense of playfulness and fun can evolve and adapt within the caregiving context and some spoke about the importance of not losing the innate ability to joke and have fun with others throughout the disease trajectory, and as a way of connecting with their loved one as they were pre-diagnosis:

Yeah, I’m quite a funny sort of person with a good sense of humor, so it was definitely something that [I] didn’t lose, you’ve got to have fun. He can still laugh and have a joke and make conversation and knows people.

Humor as an Expression of Mutual Connection and Understanding

Several participants described the use of humor as a way of expressing mutual connection and solidarity with friends about the devastating nature of brain cancer and how challenging the experience can be:

Yeah, it’s hard, but it is, in a way I said with my mate, we could kind of laugh about it because we were like, “This is just horrible. This is ridiculous, really. It is ridiculous.”

Of interest was that for the same individual, connection through humor (especially black humor) was only possible when there was a pre-existing foundation of mutual understanding and shared experience:

But it can only take that shit, that mutual understanding of someone who understands the degree that you’re operating on to actually have that humor about it, because to everyone else it’s very hard.

In contrast, one participant described the unbearable pain of being surrounded by strangers who were laughing and joking, after the death of her loved one, resulting in a sense of disconnection with those around her:

There were not many people like me, I think maybe a handful of people like me who had suffered terribly with someone, their loved one passing. You had a whole bunch of [people] who were all laughing, joking, there was a lot of camaraderie. They happened to be standing next to me. I found it really difficult. [Friend] came up to me to give me a hug and I said, “Please don’t hug me or I’m just going to have a complete meltdown.” It was, look, I don’t know what was wrong with it. It was lovely that I was invited, but I felt so overwhelmed by these people that were laughing and joking and, yeah. It’s just horrible.

Yet for one participant, humor also functioned as a way of “breaking the ice” and allowing vulnerability into the caregiving relationship:

I said, “Look, can I just come and see you? Can I just give you a hug? That’s all I want to do.” She said, “As long as you don’t cry.” I said, “Of course, not a problem. You can’t squeeze a tear out of me.” [laughs] And so it was almost like that broke the ice, where she was like, “Okay, I will let a bit of vulnerability go here,” because she wasn’t one for sharing vulnerability.

In the clinical context, humor was described an important element of a participant’s relationship with her psychologist, allowing her psychologist to gently challenge her feelings of guilt, and facilitating shared laughter and mutual understanding:

Participant: [Crying] And I just feel if I hadn’t of been selfish and gone to the markets that morning, that maybe he might have lasted longer. It’s probably the only regret that I have… I saw [psychologist] for a couple of months after, and she told me I wasn’t good. My words, she told me I was an idiot [laughs].

Interviewer: [Laughs] Oh, she’s great [psychologist], isn’t she?

Participant: She was really good… She was very, very understanding and we often talked about the things that [person with brain cancer] came out and said

Humorous experiences between a family and the oncology team were also described as provoking shared laughter following surgery:

Participant: Even though my wife thinks he’s [clinician] abrupt and I laugh, I love him, ‘cause she turned around after one operation [in front of clinician] and I said, why don't you like this [clinician], and she turned around and said, well he's actually a lot like you.

Interviewer: Oh that’s good that you can have a laugh about that

Participant: Yeah, we do.

Humor as a Way of Managing Difficult or Awkward Moments

A number of participants described the use of humor, both by themselves and by their loved one, to manage difficult moments, such as the loss of a parent’s independence:

Participant: We did suggest he move in with us – we could put a granny flat on our block of land – but he said he didn’t want that. He said, you’ll be knocking on my door all the time [laughs].

Interviewer: So, he’s got a good sense of humor.

Participant: Yeah.

When describing a challenging period of the caregiving trajectory, another caregiver indicated that small jokes could be helpful to encourage her father to accept help, and relinquish some “control”:

Okay, Dad, you’re no longer the only one who is responsible for everyone. You need to learn how to be a patient now or learn how to be someone that’s dying [laughs] and let other people help.

Some also described the use of existential humor by their loved one to acknowledge their own death or existence. This form of humor was usually initiated by the person with brain cancer rather than by the caregiver:

It’s funny at the [hospital] we’d walked past, there’s this garden where there’s like dinosaurs and there’s a skull and [name of loved one] would walk past it and he would say to people, “oh look at those bones”, but this was in the earlier days, “look at those bones, that’s what I’m going to be. Everyone in my family would get mortified by that, I was not mortified by that.”

So, I’ve got a full file which is still at home, and I’ll probably have it forever. And he used to laugh at is and say, “Oh God, there’s my whole life in a file.”

In addition to talking about humor, many participants also used humor and laughter when describing challenging aspects of their caregiving experience, for example, when speaking about unwanted advice from others, understanding the complexity of the health care system, or navigating unknown territory as a caregiver:

I did try to communicate with the unit coordinator and people around me at Uni, but there was this suggestion too, “Well, you need to formalize this,” which I thought was just bullshit. [laughs].

My friend who’d gone through the same thing, but he was at a more progressed stage, so without getting into too much of the details, his dad goes to the toilet to wipe his arse sort of stuff, which was so comforting [laughs] because it was when you’re going into this unknown territory, when you’re dealing with, you’re trying to care for someone whose situation’s changing basically daily or weekly, and it keeps getting worse, to talk to someone who knew what the next step was.

In another instance, humor was used to downplay the challenges of navigating the health care system:

Interviewer: Yeah, and you understand the system more and you know how to support him.

Participant: More, but we won’t say that we understand it all [laughs].

Several participants spoke about what they would like to see in a supportive intervention for caregivers, emphasizing the importance of sharing “funny” stories of the “awkward things” and “slip ups” that characterize the daily lives of brain cancer caregivers:

I guess [something] funny like, “We did this and then this happened,” like not actually funny but literally like daily sort of things, like the slip-ups, like the awkward things that happen, and I guess even now I’d really respond to that. I always just think back of sort of instances that happened with Mum or how tough they were to have to deal with that, and it’d be more, like you say, balanced and casual, and be very honest with, “This is shit. This is hard”, something like that

Humor as a Form of Avoidance or a Welcome Distraction

A small number of participants spoke about the use of humor by their loved one as a way of avoiding “the real conversation”:

He never would bring it up with me because I think he knew I was going have the real conversation and he would say, “oh look there’s the clothes, the clothes are waiting for me”, and he would use these dark humors to kind of give an indication that he knew what was going on but then…that would be it often, yeah.

When discussing humor as a coping mechanism, one participant also spoke about her ability to deflect attention away from herself, suggesting humor may have functioned as a protective mechanism to avoid answering personal questions about herself:

Interviewer: The things you just brought up make me think that humor may have helped you to cope

Participant: [Laughs] Yeah, we often talk about [person with brain cancer] and some of the things that he said and he did, even before he got sick. We try to remember the good times and talk about the good times. I also am really good at deflecting the situation from me. So, if somebody starts to ask me about myself or what I’m up to, I just, yep, answer it quickly, and turn it around and then change the subject. It’s easier not to acknowledge, or not to sort of think personally, but try to show an interest in what other people are doing.

Humor as Helpful or Unhelpful Depending on Where Someone is in the Brain Cancer Trajectory

Comments by a number of participants suggested that humor could be helpful or unhelpful depending on where a person was at in their brain cancer trajectory. For example, one participant described how hurtful humor can be when a loved one isn’t “ready” to laugh about brain cancer:

[name of loved one], he can’t joke about it yet, I joke about it a lot, it’s kind of, you know, with friends or whatever and kind of, [name of loved one] does something or says something stupid…and I’ll just turn around and say, oh, you know, he’s got a brain tumor so he must be right, you know, type of thing. And we all laugh and then I get in so much trouble afterwards for saying that, because he’s not at that point yet where he can laugh about it because, you know, he’s just not there yet.

This participant spoke about disease progression as a hindrance to the use of humor by her loved one, throwing him back to “square one” and requiring her to walk a fine line between keeping things “light-hearted” while not causing offense:

He was almost there and then we, he’s got a, you know, a new cyst now which means we’re back to square one with doctors and hospitals and emotions and, you know, and having to deal with all of that. So, yeah, so kind of, I don’t know, it’s, yeah. Keeping it light-hearted but so as to not cause offence, kind of.

Another participant described how her loved one had begun to laugh about brain cancer as a way of learning to live with the disease over the longer term:

So, he’s had a few years of that after the initial brain tumor, of being told you’re going to die, you’re going to die, you’re going to die. Now he’s [laughs]… He hasn’t died; life’s still going on and we’re trying to help him to see that he’s got to look at it a little differently.

Some participants spoke about the importance of “fun times” and “being silly” as a way of “helping” their loved one:

There’s a hotel estate in [city] and I took [name of loved one] and the girls down to that Tuesday, Wednesday, Thursday, so [she] could just be there and have that, you know, there was some really fun times there. You have to have that time somewhere in the day where you just do something silly or funny or loving to help them.

However, another participant acknowledged that keeping her loved one “positive” was “really draining” and laughing about it was not always possible:

It’s not, life’s not always fun. You can’t always put a spin on something, and sometimes you’ve got to be honest and say, “This is objectively shit.”

Another emphasized a desire for a “positive place” she could visit online; a resource that included a “funny meme” or a “positive story” as she did not always want to see negative information:

There almost needs to be a positive place on the website, you know, so kind of having a resource where it’s, I don’t know, even if it’s just like a funny meme, you know, like kind of every day or something like that, or just a little positive story or something. Because most websites when you go onto them, it’s all, it’s factual but it’s negative…you don’t always, as from my angle, you don’t always want to see the negatives.

Discussion

We investigated the role of humor in brain cancer caregiving. Findings from our analysis reveal that humor may be an intrinsic strength that individuals and families affected by brain cancer draw on to express irreverence in the face of the everyday challenges and incongruities of brain cancer caregiving; an interactional tool to facilitate mutual understanding and broach sensitive issues; and a protective strategy involving distraction or deflection. Somewhat paradoxically, our study highlights the need for psychosocial oncology researchers to take humor seriously, as a potential resource that could easily be overlooked or obscured by an overemphasis on the burdens and distress of the brain cancer caregiving experience.

Many telephone interviews were full of laughter and reminiscent of the innate sense of humor of the person with brain cancer. Participants’ responses suggested that humor was an integral and unique aspect of their connection with their loved one. Consequently, when a loved one’s sense of humor, and ability to laugh and joke, were impacted by the progression of brain cancer symptoms, this also represented a critical loss for the caregiver. This finding highlights the need for clinicians to be aware of the specific challenges brain cancer caregivers may experience when their loved one’s sense of humor is impacted by cognitive decline. Since humor is recognized as a two-way process (Tanay et al., 2013), the loss of humor by a loved one may represent the loss of an innate strength and source of resilience in the patient-caregiver relationship.

Importantly, findings from our analysis suggest that a caregiver’s own sense of humor may play an important role in buffering them against this loss. For example, some caregivers used humor as a form of meaning making, to emphasize the “positive” ways in which their life and relationship changed or developed following their loved one’s brain cancer diagnosis. Reblin et al.’s (2019) research on family caregivers of cancer hospice patients also identified a link between humor and meaning making, finding that caregivers who engaged in meaning making talk alongside humor had higher levels of acceptance and better long-term mental health outcomes than caregivers who engaged only in humor. Interestingly, research by Bethea et al. (2000) found that humor is often used by caregivers as a cue that something of deeper meaning is going on. From a strengths perspective, these findings suggest that humor may serve as an important vehicle for clinical communication, enabling health professionals to identify “meaningful moments,” and direct humor into more effective means of coping by helping caregivers to connect expressions of humor with meaning making talk.

Findings from our analysis also revealed that caregivers used humor differently depending on their relationship with the person they were communicating with. For example, when communicating with friends, caregivers often used dark humor as an expression of mutual connection and shared understanding about how difficult things can be. In contrast, when communicating with their loved one, dark or existential humor was usually initiated by the person with brain cancer rather than by the caregiver. Participant comments about the use of dark humor reflected an awareness that this form of humor required a foundation of shared experience, and may be perceived as inappropriate, hurtful, or embarrassing by others. This suggests that certain forms of humor are reserved for specific people in a caregiver’s life. Previous research also shows that cancer caregivers view support attempts as helpful or unhelpful depending on their relationship with the source of support (Stone et al., 2012). From a strengths perspective, these findings suggest that dark humor may function as a resource when used in the context of relationships characterized by mutual understanding. Normalizing the use of dark humor as a form of support in these relationships might empower caregivers to identify and embrace these interactions more deliberately as a strength and resource for coping.

The importance of sharing humor or laughter with someone rather than laughing at or without someone was highlighted by several participants when recounting hurtful or distressing uses of laughter or humor. In one example, a participant spoke about the unbearable pain of being surrounded by strangers who were laughing and joking about unrelated things, after the death of her loved one. In another example, a caregiver described how hurt her husband had been when she had joked about his cancer with friends before he felt “ready” to laugh about it. These examples show that humor functions as a strength only when it is reciprocated or shared. It is important that health professionals recognize this nuance and exercise sensitivity by discerning whether humor is invited and welcome (Buiting et al., 2020; Chapple & Ziebland, 2004).

A key finding from this research was that caregivers tended to use laughter to manage difficult or awkward moments such as a loss of independence by their loved one. Many also used laughter in the interview when describing challenging or frustrating aspects of the caregiving experience, such as receiving unwanted advice from others, the complexity of the health care system or having to navigate unknown territory as a caregiver. Although participants used laughter when recounting these events, it was not always clear whether they considered them to be funny. In emphasizing the importance of supportive interventions that recognize the “funny,” “awkward things,” and “slip ups” that happen in the daily lives of brain cancer caregivers, one participant noted that these things are “not actually funny” but are an “honest” and “casual” way of describing the difficulties of caregiving. These findings suggest that caregivers may use humor to communicate the kinds of challenges they are managing, and not necessarily because they find the situation humorous. Previous studies have reported similar findings in relation to cancer patients (Beach & Prickett, 2017; Chapple & Ziebland, 2004; Haakana, 2001, 2002). According to Holt (Holt, 2013), it is important to recognize that laughter and humor may occur together but can also be produced independently. People may laugh because they are nervous or embarrassed, not because they find something funny. Similarly, dry or sarcastic humor may provide amusement, but not provoke laughter (Ruch et al., 2019). Thus, caregiver laughter must be interpreted with caution as it may not always be associated with positive emotions and may present in complex ways in health care consultations. Nonetheless, from a strengths perspective, the use of humor to initiate sensitive areas for discussion may itself represent a resource that facilitates important insights and opportunities for health professions to reveal, acknowledge and help caregivers manage personal, delicate and potentially troubling brain cancer impacts.

Findings from this research were consistent with Reblin and colleagues’ (2019) observation, that humor and laughter can be used by caregivers as a form of distraction or avoidance. For example, one participant described the use of humor by her loved one as a strategy to avoid difficult conversations about death. However, in contrast to Reblin et al. (2019), participants’ use of humor as a form of distraction or avoidance did not always reflect maladaptive tendencies. For example, one spoke about using humor as a deflection strategy in response to unwanted personal questions. Thus, while humor may distract people from fully processing the potential of death (Reblin et al., 2019), from a strengths perspective, it may also represent a crucial means of proactive self-preservation, protecting caregivers from the detrimental impacts of sympathy, or unwanted intrusion into their lives, from well-intentioned acquaintances or even healthcare providers (Sinclair et al., 2017).

Our analysis showed that, in brain cancer caregiving, humor has a temporal dimension and its use and impact vary across the illness trajectory. In cases where there was a progression or worsening of the disease, caregivers changed their use of humor, keeping things “light-hearted” while avoiding jokes that might cause offense. In contrast, where a loved one’s illness was relatively stable, humor became an important strategy for learning to live with, and reframing, the brain cancer experience. Although participants emphasized the importance of “fun times” and “being silly” as a way of “helping” their loved one, they also acknowledged how “draining” it can be to keep their loved one “positive.” This suggests that, at times, caregivers may feel pressure to use humor and laughter to keep their loved one in good spirits. Thus, in circumstances where caregivers feel pressure to “be positive,” the use of humor may become an impost rather than a resource. Although research from the wider oncology literature highlights the importance of positive reappraisal for posttraumatic growth by families of cancer patients (Levesque & Maybery, 2012), Wilkinson and Kitzinger (2000) found that naming positivity and making it explicit may cause it to become a fait accompli; ensnaring both the patient and the caregiver to express positivity even when they are not feeling positive. Thus, the relationship between humor and positivity is complex, and when implementing a strengths perspective clinicians must be careful to avoid unwittingly pressuring brain cancer caregivers to explore or articulate positivity (McCreaddie et al., 2010).

This research has important implications for healthcare providers working with brain cancer caregivers and their loved ones. For example, the finding that participants viewed humor as an innate individual or family strength highlights a critical opportunity for healthcare providers to apply a strengths-based approach (see for example Saleebey, 2006), to identify and nurture humor as a potential resource individuals and families can draw on to cope with and buffer the psychological distress of caring for a loved one with brain cancer. According to Rotegard et al. (2012), cancer patients’ strengths are crucial in enabling them to cope with the illness, yet their capabilities have received little attention from healthcare providers. Even less attention has been paid to the innate strengths of their caregivers, representing a missed opportunity to elicit and build on these strengths to facilitate individual and family coping. Future research involving brain cancer caregivers may benefit from more explicit application and development of strengths theory to enable identification of the intrinsic and extrinsic resources and capabilities caregivers draw on to respond to the challenges and impacts of their caregiving role.

Study Limitations

Although the sample size for this study is relatively small, and the findings are therefore not generalizable, it nonetheless provides initial insights into a previously unexplored aspect of psychosocial oncology. As such, this article offers an important starting point for future empirical work. As noted earlier, this study did not specifically ask caregivers about humor, which may have limited the detail and depth of findings. Future research should focus specifically on asking brain cancer caregivers about the role and function of humor to facilitate a more comprehensive understanding of this phenomenon. Finally, the study is limited by a lack of (i) explicit and diverse sampling and (ii) demographic information collected from participants. Further research should expand current understandings of the impact of patient and caregiver age, as well as socio-economic, cultural, and linguistic factors on caregiver supportive functions, including humor.

Conclusion

This article drew on findings from 20 qualitative interviews with 21 caregivers to investigate the role and function of humor in brain cancer caregiving. Findings show that caregivers and their loved ones use humor and laughter in diverse and nuanced ways, to connect and share mutual understanding with friends and professionals, to manage challenging or awkward aspects of the disease trajectory, to communicate about delicate or poignant issues, to connect with their loved one as a person and not just a cancer patient, or as a form of avoidance or distraction. Participants’ responses also reveal the temporal dimension of humor in brain cancer caregiving, as the use and impact of humor varied across the illness trajectory. These findings suggest that the role and function of humor in brain cancer caregiving is complex and fluid, and that appropriate use of humor requires mutual understanding, shared experience and understanding of a person’s unique brain cancer trajectory.

Footnotes

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 authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was sponsored via a Hunter Medical Research Institute grant and funded by The Mark Hughes Foundation Non-Profit Health Promotion Charity (G1901579).

References

Applebaum

A. J.

Kryza-Lacombe

Buthorn

DeRosa

Corner

Diamond

E. L.

(2016). Existential distress among caregivers of patients with brain tumors: A review of the literature. Neuro-Oncology Practice, 3(4), 232–244. https://doi.org/10.1093/nop/npv060

Arber

Hutson

de Vries

Guerrero

(2013). Finding the right kind of support: A study of carers of those with a primary malignant brain tumour. European Journal of Oncology Nursing, 17(1), 52–58. https://doi.org/10.1016/j.ejon.2012.01.008

Australian Institute of Health and Welfare (2021). Informal Caregivers. https://www.aihw.gov.au/reports/australias-welfare/informal-carers: Australian Government.

Baumstarck

Chinot

Tabouret

Farina

Barrié

Campello

Petrirena

Hamidou

Auquier

(2018). Coping strategies and quality of life: A longitudinal study of high-grade glioma patient-caregiver dyads. Health and Quality of Life Outcomes, 16(1), 157. https://doi.org/10.1186/s12955-018-0983-7

Beach

W. A.

Prickett

(2017). Laughter, humor, and cancer: Delicate moments and poignant interactional circumstances. Health Communication, 32(7), 791–802. https://doi.org/10.1080/10410236.2016.1172291

Bethea

Lisa

S. Travis

Shirley

S. Pecchioni

Loretta

(2000). Family caregivers’ use of humor in conveying information about caring for dependent older adults. Russian Journal of Communication.

Boele

F. W.

Hoeben

Hilverda

Lenting

Calis

A.-L.

Sizoo

E. M.

Collette

E. H.

Heimans

J. J.

Taphoorn

M. J. B.

Reijneveld

J. C.

Klein

(2013). Enhancing quality of life and mastery of informal caregivers of high-grade glioma patients: A randomized controlled trial. Journal of Neuro-Oncology, 111(3), 303–311. https://doi.org/10.1007/s11060-012-101203

Braun

Clarke

(2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101. https://doi.org/10.1191/1478088706qp063oa

Braun

Clarke

(2014). What can “thematic analysis” offer health and wellbeing researchers? International Journal of Qualitative Studies on Health and Well-Being, 9(1), 26152. https://doi.org/10.3402/qhw.v9.26152

10.

Buiting

H. M.

de Bree

Brom

Mack

J. W.

van den Brekel

M. W. M.

(2020). Humour and laughing in patients with prolonged incurable cancer: An ethnographic study in a comprehensive cancer centre. Quality of Life Research: An International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation, 29(1), 2425–2434. https://doi.org/10.1007/s11136-020-02490-w

11.

Cavers

Hacking

Erridge

S. E.

Kendall

Morris

P. G.

Murray

S. A.

(2012). Social, psychological and existential well-being in patients with glioma and their caregivers: A qualitative study. CMAJ, 184(7), e373–e382. https://doi.org/10.1503/cmaj.111622

12.

Chapple

Ziebland

(2004). The role of humor for men with testicular cancer. Qualitative Health Research, 14(8), 1123–1139. https://doi.org/10.1177/1049732304267455

13.

Cornwell

Dicks

Fleming

Haines

T. P.

Olson

(2012). Care and support needs of patients and carers early post-discharge following treatment for non-malignant brain tumour: Establishing a new reality. Supportive Care in Cancer, 20(10), 2595–2610. https://doi.org/10.1007/s00520-012-1383-1

14.

Haakana

(2001). Laughter as a patient’s resource: Dealing with delicate aspects of medical interaction. Text & Talk, 21(1–2), 187–219. https://doi.org/10.1515/text.1.21.1-2.187

15.

Haakana

(2002). Laughter in medical interaction: From quantification to analysis, and back. Journal of Sociolinguistics, 6(2), 207–235. https://doi.org/10.1111/1467-9481.00185

16.

Haley

W. E.

LaMonde

L. A.

Han

Narramore

Schonwetter

(2001). Family caregiving in hospice: Effects on psychological and health functioning among spousal caregivers of hospice patients with lung cancer or dementia. The Hospice Journal, 15(4), 1–18. https://doi.org/10.1080/0742-969X.2000.11882959

17.

Halkett

G. K. B.

Lobb

E. A.

Miller

Shaw

Moorin

Long

King

Clarke

Fewster

Nowak

A. K.

(2018). Feasibility testing and refinement of a supportive educational intervention for carers of patients with high-grade glioma–a pilot study. Journal of Cancer Education, 33(5), 967–975. https://doi.org/10.1007/s13187-017-1175-x

18.

Harzold

Sparks

(2006). Adult child perceptions on communication and humor when the parent is diagnosed with cancer: A suggestive perspective from communication theory. Qualitative Research Reports in Communication, 7(1), 67–78. https://doi.org/10.1080/17459430600965924

19.

Holt

Elizabeth

(2013). On the nature of “laughables”: Laughter as a response to overdone figurative phrases. Pragmatics, 21, 393-410. DOI:https://doi.org/10.1075/prag.21.3.05hol.

20.

Hricik

Donovan

Bradley

S. E.

Given

B. A.

Bender

C. M.

Newberry

Hamilton

Given

C. W.

Sherwood

(2011). Changes in caregiver perceptions over time in response to providing care for a loved one with a primary malignant brain tumor. Oncology Nursing Forum, 38(2), 149–155. https://doi.org/10.1188/11.ONF.149-155

21.

Hughes

Margaret

E (2015). A strengths perspective on caregiving at the end-of-life. Australian Social Work, 68(2), 156-168. DOI:10.1080/0312407X.2014.910677.

22.

Kristjansdottir

O. B.

Stenberg

Mirkovic

Krogseth

Ljoså

T. M.

Stange

K. C.

Ruland

C. M.

(2018). Personal strengths reported by people with chronic illness: A qualitative study. Health Expectations, 21(4), 787–795. https://doi.org/10.1111/hex.12674

23.

Levesque

J. V.

Maybery

(2012). Parental cancer: Catalyst for positive growth and change. Qualitative Health Research, 22(3), 397–408. https://doi.org/10.1177/1049732311421617

24.

Madsen

Poulsen

H. S.

(2011). Needs for everyday life support for brain tumour patients’ relatives: Systematic literature review. European Journal of Cancer Care, 20(1), 33–43. https://doi.org/10.1111/j.1365-2354.2010.01184.x

25.

McCreaddie

Payne

Froggatt

(2010). Ensnared by positivity: A constructivist perspective on ‘being positive’ in cancer care. European Journal of Oncology Nursing, 14(4), 283–290. https://doi.org/10.1016/j.ejon.2010.03.002

26.

Northouse

L. L.

Katapodi

M. C.

Schafenacker

A. M.

Weiss

(2012). The impact of caregiving on the psychological well-being of family caregivers and cancer patients. Seminars in Oncology Nursing, 28(4), 236–245. https://doi.org/10.1016/j.soncn.2012.09.006

27.

Ownsworth

Goadby

Chambers

S. K.

(2015). Support after brain tumor means different things: Family caregivers’ experiences of support and relationship changes. Frontiers in Oncology, 33(5), 33. https://doi.org/10.3389/fonc.2015.00033.

28.

Petruzzi

Finocchiaro

C. Y.

Lamperti

Salmaggi

(2013). Living with a brain tumor: Reaction profiles in patients and their caregivers. Supportive Care in Cancer, 21(4), 1105–1111. https://doi.org/10.1007/s00520-012-1632-3

29.

Pochard

Azoulay

Chevret

Lemaire

Hubert

Canoui

Grassin

Zittoun

le Gall

J.-R.

Dhainaut

J. F.

Schlemmer

The French FAMIREA Group . (2001). Symptoms of anxiety and depression in family members of intensive care unit patients: Ethical hypothesis regarding decision-making capacity. Critical Care Medicine, 29(10), 1893–1897. https://doi.org/10.1097/00003246-200110000-00007

30.

Pulla

(2017). Strengths-based approach in social work: A distinct ethical advantage. International Journal of Innovation, Creativity and Change, 3(2), 97–114. https://doi.org/10.2-s2.0-85032230902

31.

Reblin

Baucom

B. R. W.

Clayton

M. F.

Utz

Caserta

Lund

Mooney

Ellington

(2019). Communication of emotion in home hospice cancer care: Implications for spouse caregiver depression into bereavement. Psycho-Oncology, 28(5), 1102–1109. https://doi.org/10.1002/pon.5064

32.

Rotegård

A. K.

Fagermoen

M. S.

Ruland

C. M.

(2012. June 23). Health assets in nursing documentation of cancer care. [Paper presentation]. 11th International Congress on Nursing Informatics, Montreal, Canada.

33.

Ruch

Willibald

Platt

Tracey

Proyer

Rene

T. Chen

Hsueh-Chih

(2019). Editorial: Humor and Laughter, Playfulness and Cheerfulness: Upsides and Downsides to a Life of Lightness. Frontiers in Psychology, 10(09 April). DOI:https://doi.org/10.3389/fpsyg.2019.00730.

34.

Saleebey

(1996). The strengths perspective in social work practice: Extensions and cautions. Social Work, 41(3), 296–305. https://doi.org/10.1093/sw/41.3.296

35.

Saleebey

(2000). Power in the people: Strengths and hope. Advances in Social Work, 1(2), 127–136. https://doi.org/10.18060/18

36.

Saleebey

(2006). The strengths perspective in social work practice. Allyn and Bacon.

37.

Samant

Balchin

Cisa-Paré

Renaud

Bunch

McNeil

Murray

Meng

(2020). The importance of humour in oncology: A survey of patients undergoing radiotherapy. Current oncology (Toronto, Ont.), 27(4), e350–e353. https://doi.org/10.3747/co.27.5875

38.

Schubart

J. R.

Kinzie

M. B.

Farace

(2008). Caring for the brain tumor patient: Family caregiver burden and unmet needs. Neuro-Oncology, 10(1), 61–72. https://doi.org/10.1215/15228517-2007-040

39.

Sherwood

P. R.

Given

B. A.

Given

C. W.

Schiffman

R. F.

Murman

D. L.

Lovely

von Eye

Rogers

L. R.

Remer

(2006). Predictors of distress in caregivers of persons with a primary malignant brain tumor. Research in Nursing & Health, 29(2), 105–120. https://doi.org/10.1002/nur.20116.

40.

Sherwood

P. R.

Given

B. A.

Given

C. W.

Schiffman

R. F.

Murman

D. L.

von Eye

Lovely

Rogers

L. R.

Remer

(2007). The influence of caregiver mastery on depressive symptoms. Journal of Nursing Scholarship, 39(3), 249–255. https://doi.org/10.1111/j.1547-5069.2007.00176.x

41.

Sinclair

Beamer

Hack

T. F.

McClement

Bouchal

S. R.

Chochinov

H. M.

Hagen

N. A.

(2017). Sympathy, empathy, and compassion: A grounded theory study of palliative care patients’ understandings, experiences, and preferences. Palliative Medicine, 31(5), 437–447. https://doi.org/10.1177/0269216316663499

42.

Stone

A. M.

Mikucki-Enyart

Middleton

Caughlin

J. P.

Brown

L. E.

(2012). Caring for a parent with lung cancer: Caregivers’ perspectives on the role of communication. Qualitative Health Research, 22(7), 957–970. https://doi.org/10.1177/1049732312443428

43.

Streckx

Coolbrandt

Dierckx de Casterlé

Van den Heede

Decruynaere

Borgenon

Mees

Clement

(2013). The impact of a high-grade glioma on everyday life: A systematic review from the patient’s and caregiver’s perspective. European Journal of Oncology Nursing, 17(1), 107–117. https://doi.org/10.1016/j.ejon.2012.04.006

44.

Tanay

M. A. L.

Roberts

Ream

(2013). Humour in adult cancer care: A concept analysis. Journal of Advanced Nursing, 69(9), 2131–2140. https://doi.org/10.1111/jan.12059

45.

Terrill

A. L.

Ellington

John

K. K.

Latimer

Reblin

Clayton

M. F.

(2018). Positive emotion communication: Fostering well-being at end of life. Patient Education and Counseling, 101(4), 631–638. https://doi.org/10.1016/j.pec.2017.11.018.

46.

Thakur

Dhandapani

Ghai

Mohanty

Dhandapani

(2019). Intracranial tumors: A nurse-led intervention for educating and supporting patients and their caregivers. Clinical Journal of Oncology Nursing, 23(3), 315–323. https://doi.org/10.1188/19.cjon.315-323

47.

Weitzner

M. A.

Meyers

C. A.

(1997). Cognitive functioning and quality of life in malignant glioma patients: A review of the literature. Psycho-Oncology, 6(3), 169–177. https://doi.org/10.1002/(SICI)1099-1611

48.

Wilkinson

Kitzinger

(2000). Thinking differently about thinking positive: A discursive approach to cancer patients’ talk. Social Science & Medicine, 50(6), 797–811. https://doi.org/10.1016/s0277-9536(99)00337-8

49.

Doris

S. F. Cheng

Sheung-Tak

Chow

Esther

O. Kwok

Timothy

McCormack

Brendan

(2020). Effects of strength-based intervention on health outcomes of family caregivers of persons with dementia: A study protocol. Leading Global Nursing Research, 76(10), 2737-2746. DOI:https://doi.org/10.1111/jan.14470.

50.

Zucca

A. C.

Boyes

A. W.

Lecathelinais

Girgis

(2010). Life is precious and I’m making the best of it: Coping strategies of long-term cancer survivors. Psycho-Oncology, 19(12), 1268–1276. https://doi.org/10.1002/pon.1686