Abstract
Purpose:
Young people with cancer are at increased risk of depression, yet evidence-based psychological interventions that are tailored to the specific needs of young people with cancer are scarce, and depression in this group may be particularly challenging to recognize and treat. The aims of this study were to (1) explore the views of health professionals in recognizing and treating low mood in young people with cancer and (2) identify the key components of an effective online treatment package for depression in this population.
Methods:
Eighteen NHS health professionals with a range of professional backgrounds working directly with young people with cancer were interviewed using a semi-structured interview schedule. Responses were analyzed using thematic analysis.
Results:
Five themes emerged: (1) one size doesn't fit all—the nature of depression is complex and varied, and symptoms fluctuate greatly in relation to physical health; (2) distress is completely understandable—it is important not to pathologize a normal reaction; (3) a stepping stone intervention—online interventions may promote engagement with face-to-face therapy; (4) connecting with others—the intervention should promote sharing experiences with others to reduce isolation; and (5) ownership and empowerment—lack of independence may be a cause of distress, and young people should have control of the intervention.
Conclusion:
The nature of depression in young people with cancer is complex and multifaceted. Online guided self-help may be useful when added as a component or first step of a treatment package including face-to-face talking therapies.
Introduction
A
Psychological treatments such as cognitive behavioral therapy (CBT) delivered in a variety of formats, including computerized interventions and guided self-help (GSH), are recommended treatments for young people with depression. 14 However, interventions developed for individuals with mental health difficulties without cancer may not be as effective for those with cancer and may require adaptation. 15
To deliver effective psychological interventions to treat mental health difficulties in young people with cancer, it is important to understand the potential physical and emotional aspects of distress caused by cancer and its treatment that go beyond traditional symptoms of depression. These may include feeling tired, nausea, and pain from diagnostic procedures and treatment; concerns with appearance (e.g., hair loss, skin changes); lessened ability to get around; fear of death and feelings of alienation and isolation.16–19 High levels of distress are not caused by the same issues as those identified in standard depression manuals and include hair loss, missing leisure activities, worries about disease, missing school, mucositis, nausea, and pain from procedures and treatment, 20 which may lead to difficulties in accurately identifying psychosocial distress and depression in this population.18,21
A further complication is that young people with cancer are a heterogeneous population whose psychological needs vary at different stages of cancer diagnosis and treatment.20,22 Therefore, there is a need to provide interventions for depression that are personalized to account for the unique difficulties faced by young people with cancer and which are not addressed in standard depression manuals. However, evidence-based psychological treatments specifically tailored to support young people with cancer and depression are scarce. 23 Reviews of psychosocial interventions for young people with cancer have reported contrasting findings, with three reviews reporting potential benefits,23–25 while a small meta-analysis reported small to non-significant effects. 26
Young people with cancer have said that it is crucial that their mental health needs are recognized and addressed as part of routine care. 27 Therefore, multidisciplinary oncology health professionals (including oncologists, hematologists, nursing staff, radiographers, play specialists, psychologists, psychiatrists, and psychotherapists) play a key role in supporting young people with the multifaceted symptoms of distress they may experience as they go through treatment. 28 However, due to the particular characteristics of depression for this patient group, health professionals may experience challenges in identifying and treating low mood, so it is essential to assess their views since they have significant contact with young people and are key to effective service delivery, particularly in the absence of empirically established interventions for depression and cancer. Therefore, the primary aim of this study was to explore the views and perspectives of health professionals in recognizing and treating low mood in young people with cancer.
Young people with cancer have expressed the need for psychological therapies for depression to be delivered in a way that maximizes technology, for example, online and computerized interventions, to allow them to manage their own care. 29 Computerized CBT has been found to be effective and acceptable for young people with cancer without depression 30 and could be particularly appropriate for young people with cancer as treatment is flexible and can be delivered at home or in hospital, reducing time spent away from school and peer groups. Similar integrated low-intensity interventions delivered by nurses in adult oncology services have been shown to be feasible, acceptable to patients, cost-effective, and highly effective in reducing depressive symptoms in adults with cancer.15,31,32 However, to date, computerized and online CBT packages have not been evaluated or adapted for use in young people with cancer.
Therefore, a secondary aim of this current study was to capture health professionals' views and opinions on the key components of an effective online treatment package for depression in this population.
Methods
Participants
Participants were recruited from a local NHS teenage and young adult cancer service, selected for geographical convenience, providing treatment to patients aged 13–24 years. Twenty-three multidisciplinary health professionals who worked directly with young people with cancer on a regular basis were invited to participate through emails sent to all staff members. Eighteen (78%) health professionals consented to participate. Participants were from a range of professional backgrounds, including medicine, psychology, psychotherapy, and psychiatry. Participants were members of the psycho-oncology team (including psychologists, psychiatrists, and psychotherapists; n = 10), clinical nurse specialists (n = 3), play therapists (who see young adolescents with cancer; n = 2), radiographers (n = 1), consultant hematologist (n = 1), and activity coordinators (responsible for supporting young people and making being in hospital as positive experience as possible through providing informal activities and groups; n = 1). Seventy-two percent of participants were female, and the range of years spent working with young people with cancer was 1–28 years.
Procedure
Ethical approval was granted by the Health Research Authority and local NHS Research Ethics Committee. This study took a qualitative approach to explore in depth participants' complex experiences about working with young people with cancer. 33 All participants provided written informed consent. Data were collected through semi-structured, face-to-face voice-recorded interviews lasting between 30 and 40 minutes. Interviews were conducted by four members of the research team: one trained graduate student, one PhD student, and two clinical psychologists, all of whom had experience conducting qualitative interviews. The research team was based at a separate institution than the participants, and interviewers were therefore unknown to participants. All interviews were audio-recorded and transcribed verbatim by trained research assistants, and all identifying information was removed.
Interview schedule
A semi-structured interview schedule (Appendix 1) was designed specifically for this study to elucidate a number of aspects of participants' experiences of working with young people with cancer and low mood. Topics included health professionals' views on the nature of low mood in young people with cancer, the differences with symptoms of depression in standard child and adolescent mental health services, and the characteristics of an effective treatment package for young people with cancer and low mood. In relation to the latter topic, participants were shown an early version of an online GSH intervention developed by the research team, based on the Modular Approach to Therapy for Children with Anxiety, Depression, Trauma, or Conduct Problems (MATCH-ADTC). 34
The interview schedule was used flexibly to ensure detailed information was obtained and included initial open questions with optional follow-up prompts.
Data analysis
Thematic analysis was used to identify and categorize key themes in the data.35,36 Analysis was based on an inductive approach, whereby the themes identified were grounded in the data. 37
The six-phase approach to thematic analysis outlined by Braun and Clarke 35 was followed. (1) All interviews were transcribed verbatim and identifying information was removed to ensure anonymity. (2) Each transcript was then read several times to allow the research team to immerse themselves in the data. (3) Ideas that appeared significant or interesting were coded and noted against the transcript. (4) The codes and ideas were collated to form themes. (5) The identified themes were then reviewed against the raw data, and analysis continued until no new themes emerged. (6) The refined themes were then named using a consensus approach.
The analysis was conducted by two qualitatively experienced members (A.C. and M.S.) of the research team to gain multiple perspectives on themes and enhance the credibility of the analysis. Each person analyzed the data separately before discussing their analyses and agreeing on the final themes. A subset of transcripts and the final set of themes were then reviewed by R.S. The analysis was completed by hand without the use of qualitative analysis software.
Results
Five themes and three sub-themes were identified and organized into two domains: (1) challenges in defining depression and (2) features of an effective online intervention. There did not appear to be any pattern in the themes identified by participants from different professions. Each theme is presented in detail below and illustrated with quotations.
Domain one: challenges in defining depression
The first domain focused on the challenges that health professionals face in defining depression in young people with cancer. This included two themes relating to (1) the complex and varying nature of depression in this population and (2) that low mood, distress, and depression symptoms were an understandable reaction to a life-changing and life-threatening diagnosis.
One size doesn't fit all
Participants described the complex nature of distress in young people with cancer. They highlighted that the nature of depression differed from individual to individual and explained that “one size doesn't fit all” when identifying symptoms of depression in this population: “Depression in young people with cancer is much more complex and it is difficult to operationalize those complexities.” Many participants explained that they did not find a depression diagnosis helpful because of these complexities; for example, “Even though depression in a technical way may fit for this group of young people, actually that doesn't capture it, because actually it's much more complex than that … it's kind of one size doesn't fit all.”
Fluctuating symptoms
Participants explained that one of the complexities was that the symptoms of depression often fluctuated in response to changes in physical health and varied at different stages of treatment. For example, some young people reported increased symptoms of depression during active treatment, whereas others reported worsening low mood following initial diagnosis or at the end of treatment: “It's very variable and can change much more than you might see in depression [without cancer]. It can just be a bad few days of the week and then go bad again when they get some other bad news.” Similarly, participants explained that depression symptoms often fluctuated rapidly with participants describing how a young person could present with severe low mood one day but be improved significantly the next (e.g., following positive test results): “It is very variable and can change day-to-day much more than you might see in depression in young people without cancer.”
Distress is completely understandable
Almost all participants explained that low mood is a common and understandable reaction to cancer in young people; for example, “young people go under the duvet, which is a very very common place … it's like just shut your mind and just get through it and I think that is very appropriate. That seems to be completely understandable.” Participants described how low mood was a normal and appropriate reaction to a cancer diagnosis and treatment: “I think the majority of young people have low mood at some point, many points, throughout their whole journal. And lots of it is completely normal, they have enough reason to [feel that way]” and “We would very regularly see young people who would be very low in mood just because of what has just happened … so one would really feel that it would be very appropriate to be weeping and very upset … just think about the nature of chemotherapy and how many of us would just think ‘oh that's ok, I'm fine with this.”
Don't pathologize distress
Participants were clear that it is important that health professionals do not over-label a normal reaction to a difficult situation: “Having a cancer diagnosis is one of the worst things that can happen to someone … everybody will have a catastrophic reaction to a catastrophic diagnosis.
Participants, therefore, thought it was important to validate young people's emotional experiences and to normalize these; for example, “normalize but don't patronize.” They said that it is vital that any intervention for depression “allows young people to define their own emotions, rather than us defining it for them.” They explained that it would be helpful for interventions to include information about depression in a way that validates young people's experiences and allows them to make their own decision about what is a “normal” emotional reaction, while also providing psychoeducation about depression; for example, “some sort of psychoeducation about depression, could be good, we know that the shock of cancer makes people feel like this, but if you start noticing these symptoms … for longer than, you know, a month, or whatever, then you know, do you talk to your GP, you don't have to deal with this on your own.”
Domain two: features of an effective online intervention
This domain comprised three themes focusing on the features of an effective online psychological intervention: (1) acting as a “stepping stone” to promote engagement with face-to-face therapy; (2) enabling vulnerable young people to connect with others; and (3) promoting ownership and empowerment of young people with low mood and cancer.
A stepping stone intervention
There was consensus among participants that online interventions could not replace the enormous therapeutic benefits of forming a therapeutic relationship through face-to-face psychological therapy: “There is a huge amount of value in simply being with them [face-to-face] through the whole journey.”
Participants suggested that GSH, including online and computerized interventions, for depression may have the most benefit for young people who do not or cannot currently engage with face-to-face services: “The big issue with them when seeking help is that actually doing the talking, they don't want to do that, whereas if you put them onto something online they are much more likely to engage in that, maybe at an earlier stage.”
They described how there was a need for such interventions to act as a “stepping stone,” signposting young people to other resources and raising awareness of face-to-face services, or having value in areas with long waitlists for psychological therapies; for example, “I think it could be useful as a stepping stone until they could get additional help.” However, there was a consensus that such interventions should always be offered in addition to, not instead of, usual care.
Connecting with others
The majority of participants talked about relationships and the importance of engaging with others where possible, due to the isolating experience of having cancer during adolescence and early adult years. Participants explained that “we must keep human contact” as young people with cancer often feel isolated.
One concern raised by participants was that online interventions may increase isolation, and they highlighted that it was important for treatment packages to encourage young people to “get back into their lives” when appropriate. Young people with cancer face various challenges in doing this, both practically and emotionally, and participants suggested that psychoeducation and support for managing these challenges were key areas for treatment packages to address; for example, supporting young people to gradually increase social contact in a phased way: “I think little behavioral things like this are really important. So I think something saying, you know, it might feel embarrassing or scary or difficult to talk about, but we know that talking to people is really helpful. How could you bring this up with your friends and family, you know. … just … just something like that … could be really good.”
Therapeutic benefits
Participants explained that connecting with other young people with cancer could also have therapeutic benefits as it would highlight that they were not alone; for example, “Low mood is definitely a mixture of feeling alone in the world and going through these experiences. And I think that sometimes it [interacting with others] does help…they can see that there are other kids who actually got through the same or similar.” Connecting with others was also seen as therapeutic as it would help young people who were feeling “abnormal” compared to their peers: “I think that what every teenage wants is to be normal, when you've got cancer you're not normal. But you can find a little group so that you're not alone. You're not unique, you're not the only person going through it, that kind of thing is probably the most beneficial for them.”
The act of sharing experiences was also described as therapeutic by turning the young persons' experience into something positive by helping other young people in the future: “I think it would be really good as their experiences might help others in the future … for some people I think that might be a way that they get something from this whole thing, that they feel they can give something back.”
Participants described how they had seen how sharing experiences about cancer had resulted in young people taking a different perspective on their lives: “Some say I wouldn't change what has happened, which I always find is very remarkable, and somehow it's the cancer that gives them the confidence to do A, B, C.”
Ownership and empowerment
Participants highlighted that one challenge of being diagnosed with cancer as a young person was the sudden need to become dependent on others, for example, parents, during a time when they had been forging independence. One participant said: “I think the things that cause the distress are the inabilities to be achieving the goals that are part of adolescence.” Participants highlighted a need for interventions for depression to be flexible, personalized, and modular rather than traditional, linear, manualized approaches so that young people could select topics that were relevant to them.
Participants expressed the importance of empowerment in any psychological intervention and suggested that treatment was most effective when the young person had control over the intervention and could opt in and out of different treatment topics: “Maybe something casual like an app [would be helpful], so they can pick up a module or two without having sessions in a particular order, or doing a certain number. Young people prefer that actually, they can make choices … it needs to be flexible.”
Some participants also talked about how identifying and recognizing strengths was also important for empowering young people and ensuring that their identity went beyond having cancer: “You start by thinking about your identity which is all of your strengths, and abilities and resources.”
Discussion
This study explored the nature of low mood in young people with cancer from the perspective of health professionals working directly with this population. The themes that emerged from this analysis illustrate the challenges health professionals face when defining depression in young people with cancer. There was consensus that distress is an understandable reaction to a cancer diagnosis, and that care needs to be taken not to “over-label” what can be considered a normal reaction. Although cancer survival rates have significantly improved due to medical advances, many still view a cancer diagnosis as synonymous with death, 20 and fear and low mood could therefore be considered a rational response.
However, the fluctuating mood often seen in this population may mean transient periods of low mood are difficult to identify as indicative of a mental health disorder, and previous research has shown that health professionals can fail to accurately identify depression.18,21 For example, physicians and nurses have been shown to overestimate levels of anxiety and depression in young people undergoing chemotherapy, yet underestimate symptoms of depression caused by the side effects of treatment. 18 Health professionals participating in this study described how normalizing and validating emotions, and allowing the young person to define their own emotions, may help overcome some of these challenges. Further research is needed to understand how health professionals can avoid pathologizing a normal emotional reaction while also ensuring that young people with depression are identified at an early stage so that appropriate support can be delivered.
In line with a previous review, 28 health professionals discussed a wide range of factors related to low mood that young people with cancer might face, including the sudden loss of independence, the physical side effects of treatment (and subsequent impact on body image, e.g., hair loss and weight changes), and emotional and physical isolation from peers. It is likely that individual differences in emotional responses to these challenges will vary according to a range of risk factors, including difficulties in parental coping, existing social or emotional problems before diagnosis, having a negative attributional style, and the type of cancer.38–40 Therefore, it is important for interventions to be able to accommodate and support a heterogeneous group of young people.
Treatment for depression in young people without cancer is well established 14 ; however, these treatments have not been systematically evaluated in young people with cancer. 23 The findings of this study indicate that health professionals thought it was likely that treatment adaptations would be needed to address the complex and multifaceted aspects of low mood faced by the patients they saw. They highlighted that interventions are needed to address the specific challenges faced by young people with cancer, such as the side effects of treatment and social isolation, which undoubtedly contribute to low mood. New state-of-the-art modular psychological treatments based on CBT principles may lend themselves to personalization for young people with cancer, as they combine fidelity to treatment protocols with flexibility to the individual presentation. 41
In this study, health professionals were shown an online intervention based on MATCH-ADTC. 34 Participants agreed that the modular design would empower young people to make choices about their own treatment and allow flexibility in addressing distress more broadly (rather than a sole focus on depression symptoms). It was suggested that other treatment approaches in addition to CBT (the psychological treatment recommended by NICE for mild depression), which are used in young people with cancer, could also be incorporated as stand-alone modules. Narrative approaches may help the young person externalize both depression and cancer; for example, using beads as prompts can help young people tell their own story of cancer and positions them as an expert in their own life. 42 Future research is needed to explore the effectiveness of flexible modular-based interventions that would allow young people to select treatment topics that are most relevant to them.
Themes also emerged relevant to the usefulness of online GSH interventions for young people with cancer and depression. In young people without cancer, online CBT for depression is recommended and well established for mild-to-moderate low mood. 14 Young people often favor such interventions over face-to-face therapy, 29 and health professionals in this study highlighted that online GSH could add value to existing services as a first step in raising awareness of depression and signposting young people to other resources and services available to them, through a medium that they are comfortable and familiar with. Furthermore, health professionals highlighted the importance of relationships and engagement with others, which is often interrupted by cancer. For example, young people may miss school and other activities due to treatment appointments, or they may choose to withdraw socially due to the side effects of treatment. 43 Existing online GSH packages for depression tailored for use with young people with cancer could improve access to treatment and minimize further disruption to social and occupational functioning; however, further research is needed to ensure that such interventions do not increase a sense of isolation in young people with cancer.
In addition, online interventions would empower young people to take control of their mental health, 29 which may be particularly important for this population as developmentally they are trying to forge independence and autonomy. Despite these advantages, health professionals in this study thought that online interventions should be provided as an adjunct to face-to-face talking therapies rather than as the sole provision of support. Therefore, online interventions may be particularly helpful when integrated with existing services in the form of GSH.
This study has provided preliminary information regarding multidisciplinary health professionals' views of identifying and supporting young people with cancer and low mood. However, a small sample size was recruited from a service that had a large multidisciplinary psychological services team to support young people, which may have influenced the findings, and it is possible that the findings reported here are not representative of clinicians' views across the National Health Service. Data saturation was reached after 18 interviews, however, it is possible that further themes may have emerged from participants from different cancer services. In addition, the views of other health professionals, such as occupational therapists and physiotherapists, were not represented in this research; future research should seek to capture the views of all health professionals involved in providing care to young people with cancer. Participants' views of the use of an online intervention for depression may in part have been influenced by their own age and attitudes toward technology; however, this was not measured in this study.
The findings of this study suggest that depression in young people with cancer is complex and multifaceted and can be challenging for health professionals to accurately identify. Online interventions may be a helpful adjunct to face-to-face therapy; however, future research is needed to evaluate existing online interventions for low mood to identify whether adaptations are required to effectively treat depression in young people with cancer.
Footnotes
Acknowledgments
This research was funded by a Health Foundation Innovating for Improvement Award and supported by the National Institute for Health Research's Biomedical Research Centre at Great Ormond Street Hospital for Children, NHS Foundation Trust and University College London. We would like to thank the reviewers for their helpful comments on the article, and PracticeWise for their agreement to use MATCH-ADTC in this research.
Author Disclosure Statement
No competing financial interests exist.
