Abstract
Young adults (YAs) with cancer may have a need to develop strategies to cope with their worries about death. This brief report presents findings from a pilot study on YAs' needs with regard to such issues. An anonymous, web-based questionnaire was posted with a total of 83 cancer patients taking the questionnaire (71 females and 12 males). Almost half of the participants thought about death every day. Since most of the participants had ended their treatment, this would appear to show that matters related to death remain an important issue after the YAs' cancer treatment has ended. The results show a need for YAs to talk about death, either with professionals or with peers.
Introduction
This brief report presents results from a pilot study aiming to investigate young adults (YAs') needs in terms of approaching issues related to death. This is an aspect that is often neglected in cancer support, which mainly focuses on hope and survival. YAs who are diagnosed with a life-threatening disease may have to come to terms with thoughts of death and dying much sooner and more brutally than anticipated. In most contemporary Western societies, attitudes toward death tend to involve denial and avoidance, 1 and Walter 2 argues that nowadays we are unfamiliar with death and dying. We personally rarely encounter death in our everyday life, which allows us to avoid the topic but leads to a lack of strategies for approaching it when the need arises. 3
In high-income countries, cancer is the most common cause of disease-related death in YAs, 4 even though the 5-year survival rates continue to improve in western Europe. 5 YAs diagnosed with cancer understand the severity of their illness, and may experience distress and anxiety about recurrence, death, or late effects. 6
A Danish study showed that almost 80% of YAs living with cancer expressed worries about death, and results indicated that one third had no one to talk to about their worries about death. 7 Sun et al. 8 found that many YAs with cancer have a need to develop strategies for coping with death anxiety and express a need for a variety of forms of support. Kwak et al. 9 argued that early psychosocial support after being diagnosed with cancer is necessary to facilitate the ability to cope with emotional stress. Effective coping strategies often result in more manageable stress levels and positive consequences for the individual's health and quality of life. Barr et al. 4 showed that socioemotional support relating to the YAs' cancer experiences results in better strategies for coping.
However, since death is not openly discussed in most Western contemporary societies, 2 YAs with cancer often lack opportunities or platforms where they can approach thoughts about death and dying, and health care professionals are not always able to support them in this regard. 10 Research in palliative and bereavement care has shown that peer support in its various forms often serves as an important resource for coping. 11 In an Australian study, YAs with cancer reported that the opportunity to belong to a peer support group was one of the largest unmet needs during treatment. The same study also showed that peer support groups are valuable for managing emotional stress, and that peer support should be offered to all who need it. 12 In peer support groups, YAs with cancer are given the opportunity to share their stories and experiences with peers who are dealing with similar situations, and this may increase the quality of their lives.
In our increasingly digitalized society, digital and mobile technologies are intervening in and transforming many aspects of contemporary life.13,14 Abrol et al. 15 showed that 41.6% of YA cancer patients reported that digital communication was “essential” in their lives. Their wishes for future social support on social media included virtual online groups, online counseling or psychological support, and receiving clinical information online from health care professionals.
To date, there is insufficient knowledge about whether, to what extent, and at what point YAs with cancer are in need of support for coping with death, and forms for such support.
Methods and Data
Study design and research questions
Our starting point was the hypothesis that YAs with cancer have a need for psychological support to cope with their thoughts of death and dying. We presumed that YAs undergoing treatment would be those most in need, and that having socioemotional support among peers online would be of benefit. A quantitative approach was taken by collecting anonymous questionnaire data to investigate the following questions:
To what extent do YAs with cancer think about death and dying? To what extent do YAs with cancer need support regarding death and dying? Where, how, and from whom do YAs with cancer find support regarding death and dying?
Context
The study was conducted in collaboration with the Swedish nonprofit organization Ung Cancer (Young Cancer, in English), which supports YAs living with cancer. More specifically, Ung Cancer supports young 16- to 30-year-old adults who have or have had cancer, or who are close to someone who has or has had cancer. Currently, the organization has ∼3800 members across Sweden (∼77% females and 23% males). Ung Cancer has members in several categories: YAs undergoing cancer treatment; YAs after treatment; YAs in palliative care; as well as YAs who are not themselves diagnosed with cancer but who live close to someone who is.
The organization uses several social media platforms to communicate both with their members and the public—such as open and closed Facebook groups, an open Instagram account, and closed discussion forums for members on their own website (login required).
Data collection
A web-based anonymous questionnaire, using the premium version of the survey tool SurveyMonkey, was designed in collaboration with staff at Ung Cancer. On January 30, 2018, an invitation to participate in the study was posted to all of the members in Ung Cancer in three of the organization's Facebook groups, targeting different member categories: those diagnosed with cancer (585 members) and those related to an YA with cancer (588 members). The invitation was also sent out in a newsletter through email to all members in Ung Cancer. A reminder was sent out on February 7, 2018. The survey was open during the period from January 22, 2018 to March 26, 2018.
The questionnaire itself comprised ten items. Nine of these were structured, allowing the participants to rank their answers on predetermined scales. Two of the structured items included biographical information, and one concerned the treatment phase of the participant. Two items inquired into thoughts about death, and three items investigated the need of support for coping with these thoughts. One item asked about places where the participant got support from. Lastly, one item was an open question, inviting the participants to write down their thoughts about coping with death and dying. For this particular report we focused only on cancer patients, excluding relatives.
Data
A total of 83 cancer patients completed the questionnaire (71 females, and 12 males). Ages ranged from 18 to 35 years (mean: 27 years old) (Table 1).
Demographic Data
Analysis
Data collected from the survey tool were exported to IBM SPSS Statistics 25.0 for further analysis. The results were presented in numbers and percentages.
Ethics considerations
This pilot study complies with the World Medical Association and Declaration of Helsinki's principles for medical research involving human subjects. However, it is to be regarded as a service improvement project, and as such did not require formal approval from a regional ethics board. The anonymous online questionnaire did not collect any identifying information, such as IP numbers. All participants were required to read through a brief text with information about the study before proceeding to the questionnaire, which ensured that all participants gave their informed consent.
Results
The results show that 39/83 (47%) of the YA cancer patients thought about death every day. Only 3/83 (4%) of the participants reported not thinking about death at all.
The largest category was YA cancer survivors: 57/83 (69%); 31 of these reported a need for support regarding thoughts about death (>3 on a numeric rating scale 0 − 10). 24/83 (29%) were YAs undergoing cancer treatment; 14/24 (58%) of these reported the need for support. Two participants were in palliative care; both reported the need for support in relation to death.
The participants reported three main contexts for talking about death, that is, face-to-face at home 64% (53/83), on social media 35% (29/83), and face-to-face meetings at nonprofit organizations 34% (28/83) (Table 2). The most important professional person for support was the psychologist (11/83; 13%), and the most important nonprofessional person for support was the partner of the YA (e.g., boyfriend, girlfriend, or spouse; 19/83; 23%).
Places Where Young Adult Cancer Patients Find Support
Discussion
The results of this pilot study show that issues related to death and dying are indeed a concern for YAs with cancer—almost half (47%) of the YA cancer patients reported that they thought about death every day, and 54% of the cancer survivors reported the need for support, confirming results of previous studies. 16 However, these results somewhat contradict our original hypothesis and indicate that those who are most in need of socioemotional support to cope with thoughts of death and dying are primarily those who have completed treatment (i.e., cancer survivors).
Having opportunities to talk about death is important for YAs. Our results are in line with previous studies that showed YAs expressing a fear of death. 17 Furthermore, there is an ongoing discussion as to whether the fear of recurrence of cancer may be related to death anxiety. 18 This notion would appear to be compatible with our findings, which indicate that it is crucial to provide support and opportunities to talk about these issues to regain normality in the YAs lives. 4 Currently, there is limited knowledge about communication strategies between cancer survivors and their health care providers. 19 The results in our study showed that few of the participants received support regarding death anxiety from health care professionals at the hospital. Most of the participants discussed these matters with their partner, parent, or friend. Our study did not investigate the causes for this. Further investigations are needed to determine whether the participants want support from health care professionals, or whether they find existing support insufficient. Psychologists were mentioned as being important for support by 13% of the YA cancer patients in this study. The importance of relatives and psychologists has been confirmed in previous research, and the conclusion in a systematic literature review was that interventions by clinicians delivered face-to-face and those that facilitated peer-to-peer support had the potential to achieve positive outcomes. 20
The majority of the participants in our study had ended their cancer treatment, which in itself indicates that issues related to death remain important to YAs after completed treatment. Similar results were shown in another study which highlighted that posttraumatic stress symptoms were observed in YAs as early as 6 months following diagnosis and remained stable at the 12-month follow-up. 9 To cope with these psychological issues, there is a need for a variety of types of support.8,21 One way may be to give YA cancer survivors opportunities to interact with peers dealing with a similar situation. Peer support is important, and this type of support can be offered either face-to-face or online. In this study, the most important places for support were revealed to be at home or on social media. YAs with cancer today are “digital natives,” and online resources improve their care experience. 15 Keim-Malpass and Steeves 22 showed that young women with cancer find that social media offers environments for expression of emotion, information exchange, and social support. Their interaction in these online environments contributes to a better understanding of their emotional and psychosocial needs.
The present study was intended as a pilot study to serve as a basis for further in-depth studies. Thus, the sample was naturally limited in size, and the scope and setting may influence results and generalizability. We invited all Ung Cancer members, but a caveat is that those who already found death to be an important issue to discuss made up the bulk of the respondents. Ung Cancer has a dominance of female membership. This is reflected in the response rate in the pilot study, which is a limitation.
In conclusion, the results show a need for YAs to talk about death, either with professionals or with peers. There is a need to further develop strategies suitable to scaffold this demand. The results from this pilot study have informed the focus and design of our ongoing studies in the Swedish national innovation project myCode. The goal is to develop digital peer-to-peer socioemotional support, as a complement to professional psychological support regarding thoughts about death and dying.
Footnotes
Acknowledgments
The authors are grateful for the collaboration with the support organization, Ung Cancer, and to all YAs who share their experiences and views by participating in this study.
Author Disclosure Statement
No competing financial interests exist.
Funding Information
This study was supported by grants from the Swedish Childhood Cancer Foundation, TJ2017-0028, and University of Gothenburg Center for Person-Centered Care and Vinnova Challenge-Driven Innovation Stage 2 (2019–04753).