The Experiences of Adolescents and Young Adults with Digital Supportive Care Interventions for Cancer: A Systematic Review of Qualitative Studies
Simple Summary
Abstract
1. Introduction
2. Methods
2.1. Information Sources and Search Strategy
2.2. Inclusion and Exclusion Criteria
2.3. Study Selection
2.4. Data Extraction
2.5. Data Analysis and Quality Assessments
3. Results
3.1. Intervention Characteristics
Quality Assessments
3.2. Experiences with Digital Interventions
Intervention Attributes
[I am] two years post-surgery [so] the course was not as relevant to me. However, I definitely think it would be very useful to have available to people coping with chemo and cancer.(Heiniger et al. (2017) [49]|Multidimensional Self-Directed Information Module)
[The activity tracker] was not wanting to keep track of the distance I was walking very well, and it wasn’t always syncing very well necessarily.(Mendoza et al. (2017) [45]|Multimodal Physical Activity Intervention)
I think just the personality of the instructor, they just created a safe and easy space [to practice yoga], it felt comfortable right away and non-threatening and there was never any pressure.(Wurz et al. (2023) [52]|Multidimensional Facilitated Virtual Behaviour Change Program)
Experiences That Enhance Outcomes | ||
---|---|---|
Themes | Quotes | |
Intervention Attributes | Appropriate Content | “I’d say definitely those videos, it just sort of put a human touch on the whole situation...” [30] “…tailored exactly to what I needed” [44] “It was engaging because of the [educational] videos [and] … to hear it from other people who’ve gone through it and their experiences and the stuff that a doctor can’t tell you—I found that really terrific”. [49] |
Flexible Choice | “We were able to complete the exercises on our own schedule”. [33] “…There was stuff you could try at home and like do yourself. So I liked that”. [48] “[you could] pick up what you want and what you need from the website”. [49] | |
Seamless Technology | “The smartphone app is pretty handy to know if you’re on track for your goals. seeing the trends of your activity. being able to join other groups. compete against people”. [45] “It was really easy. It was very straightforward. It wasn’t really complicated. It was just like simplified so it was easy to use for little kids”. [48] “User-friendly”. [49] | |
Inclusive Environment | “I liked that it was a safe place to expose your own thoughts/anxieties” [31] “Easy to access information within privacy of own home…” [40] “It was a free space and I felt very open, cancer was normal in that space, which is rare in my day-to-day life, where I feel like I walk around with a heavy little secret sometimes”. [43] | |
Intervention Outcome: Health and Well-being | Improved Physical Health | “New burst of energy”; [44] “I feel energised and alive”. “I thought the pain help ideas were really awesome. When they suggested like different things that you could do? Those were really helpful”. [48] |
Improved Psychological Health | “I did not feel so alone in the situation, it reassured me that okay, it is normal to feel like that, others have also experienced it and their trajectory has also been like that, so I’m not a single weird case”. [35] “I’ve mostly just used the coping mechanisms....A lot of the questions I felt calmed me down so that worked for me. They were pretty well done”. [42] “Allowed me to remain positive”; “release anxieties”. [44] | |
Enhanced Connections and Communication Skills | “…[The website] gave me the proper questions that I need to ask, not only the oncologist, but also the nurses when I went into chemo”. [30] “My husband and I are feeling more connected to one another. We have learned to communicate and express ourselves better”. [33] “[Group was] life-changing for me. I can’t express how important it is for me to be able to talk to people who went through things like I did, as I never got to meet anyone while I was in the hospital and always felt so isolated”. [36] “These hearts that you would get, somehow they make you feel supported, that you’re not alone in this/…/. [the likes and comments in the discussion forum] even made me feel that I would have liked to meet these girls, it reached a level of some kind of affinity”. [39] “I think the biggest thing of the whole intervention is actually having you [the facilitator] at the other end. To have a person to actually talk to”. [41] “[The program] gave some ideas on how to talk about problems and to get my family to “open up”. [43] “Basically it helped be a visual for me and my doctor to help talk about it because right there open on the table and we discussed it and came up with a plan”. [47] “My kids, their support was great because they started eating everything that I was eating so to see that I wasn’t doing it alone was really good”. [51] | |
Autonomy | “It gives an awareness that you have to get through no matter how hard it is at times. Some have been through something worse, and they have managed it, so even though it is not the same thing we have been exposed to, it gave peace to know that you can get through it and get well on the other side and get started in life again”. [35] “I am taking the steps to get help and more of getting more educated. That is what I am doing. I can be better…It made me think about what I can do or what I can take to get that energy and the things that help me. It did help and gave a push. I always wanted to be better after I was done because I don’t want it to come back”. [37] “You have to start somewhere. this is a good starting place. got that sense of community, that sense of accountability. just starting to move, kind of embracing life gain”. [46] “Really in the middle of the whole thing, I went ‘woo, you need to stop telling yourself that you can’t do something and continuously tell yourself that you can do something’. So, my new thing is ‘get up, get going, because you can do this”. [51] | |
Experiences that Hinder Outcomes | ||
Intervention Attributes | Generic Content | “Articles that don’t just pertain to emotional dealings but pragmatic tips for dealing with nausea or hair loss. Something similar to how magazines give tips and tricks since that is a very palatable format to many people that I know, and something that I really missed from a lot of coping and support forums that I’ve encountered for cancer”. [31] “It’s helpful as a survivor but isn’t very tailored to my specific worries and thoughts”. [34] “In relation to my disease, I could not... it is very rare, so I could not really see myself reflected in so much of it that was written in there”. [35] “It was the same exact wording in the message every single time, so it almost seemed like robotic”. [46] “…two years post- surgery the course was not as relevant to me. However I definitely think it would be very useful to have available to people coping with chemo and cancer”. [49] |
Limited Choices | “That there were questions every day, it was a little hard to keep up with responding” [31] “We have very limited free time available and found it difficult to finish the lessons within a week, particularly the ones that needed to be started immediately…In the end it was a bit disruptive to our normal routine”. [33] “I like you [chatbot] a lot but wish there were a few more options”; [34] “It’s [Facebook is] kind of more for older people nowadays, I don’t really find anything that would have any interest in me. Like, I would check it every two weeks or so maybe” “Snapchat would be cool for Fitbit. You could, like, Snap your Fitbit…” “I think Instagram would work well because it’s more interactive with multiple people” [45] “…Because sometimes people don’t want to like keep...um...doing the same thing over again...22 questions every time”. [48] | |
Faulty Technology | “It [activity tracker] was not wanting to keep track of the distance I was walking very well, and it wasn’t always syncing very well necessarily”. [45] “I did have to charge mine every night, it didn’t last more than one day for me”. [46] “Even if I did do my case [pain assessment], it would still just keep on giving notifications. And I know that after you say, “yes” to the case, [the app will] follow-up [on the severity of pain one hour later]. But even if I would do the follow-ups, it would just keep on giving more and more [notifications]”. [48] | |
Unfavorable Environment | “I would recommend it, but also something slightly less faceless if that makes sense”. [35] “So, we were quarantining with my in-laws and there was nowhere really private to go and it felt like kind of a private thing”. [41] “Facebook wasn’t especially appealing [because] the elephant in the room was that the main thing we all had in common was that we’d had cancer in the past, and that’s a weird commonality to have with strangers. it felt unaddressed”. [46] | |
Intervention Outcomes: Health and Well-being | Lack of Connection and Communication | “…some mental health support would have been good on the website…even if it was just like maybe a link or something like that to like—a support group…a psychologist or who to talk to…” [30] “It was difficult to actually get to know people since most of the questions or discussion topics were more “fun fact” than really getting to know. Maybe having some more personalized chat features or encouragement to post not just on prompts but on our own would also be good”. [31] “It matters that people are anonymous, then the community will not be as strong”. [35] “If there was something face-to-face with other people, that’s also a great way of getting connections and hearing what other people use for mindfulness”. [40] “The part where you get the advice from the nurse was good but then sometimes I would just miss her if I was out or my phone was on silent. So, it might be better if she left you a [text] message so that you could check what she was telling you to do”. [48] “I didn’t really feel like the sense of community [was something] that I wanted with the other participants. [Since] it was optional to have the camera on, and also I just had my screen on like speaker mode […]”. [52] |
Triggering | “…..[intervention module] the reflection often caused me to start over analyzing and I wasn’t really able to get out of it”. [31] “So, every time I opened the app, I thought ‘no, I also have to see what something else happens,’ and then things appeared I was not happy about. It was like I had to distance myself from the app to distance myself from this community”. [35] “[Not want to] spend too long wracking my own brains of that about things [sic]… it’s very difficult to disentangle …” [49] |
3.3. Intervention Outcomes: Health and Well-Being
3.3.1. Physical Health
“It actually did get me from just sitting there and go do things, go walk around or go to the gym for a half hour”.(Miropolsky et al. (2020) [46]|Multi-modal Physical Activity Intervention)
3.3.2. Psychological Health
[…] The website was good because when I was about to start to get a bit anxious so that like, “Oh, God, what if, what if, what ifs,” I could read the information to just reassure myself, I guess, with the general facts […].(Conduit et al. (2022) [30]|Self-Directed Psychosocial Information Source)
3.3.3. Enhancing Connections and Communication
My old friends […] do not know what [cancer is like] because they have not felt it on their own body, so it is nice to talk to someone who knows the special fatigue that you can feel, which is not just a fatigue you can sleep away. Old friends can’t talk about hair loss and wigs, they do not understand.(Hanghøj et al. (2023) [35]|Psychosocial Social App and Forum)
Everything is laid out and just put forward, so you can get right talking about what is the biggest problem.(Erickson et al. (2019) [47]|Symptom Management Software Application)
[…] I always turn my camera off, pretty much because most other people did it, and also because it’s kind of nice. Especially for me working from home, I’m on a screen all day long. […] but then at the same time I felt like you don’t really get to connect with the other people.(Wurz et al. (2023) [52]|Facilitated Virtual Multidimensional Yoga Program)
3.3.4. Autonomy
Because of this group, I was able to let go of the emotional weight I was carrying with me, and finally, after 3 years I got my first haircut, and I feel like myself again. I feel like I am free to make my own decisions.(Lichiello et al. (2022) [36]|Facilitated Virtual Psychosocial Telehealth Intervention)
4. Discussion
4.1. Study Limitations
4.2. Future Directions
5. Conclusions
Supplementary Materials
Author Contributions
Funding
Data Availability Statement
Acknowledgments
Conflicts of Interest
Abbreviations
AYA | Adolescent and Young Adults |
CASP | Critical Appraisal Skill Programme |
COVID | Coronavirus disease |
HCP | Healthcare Provider |
PRISMA | Preferred Reporting Items for Systematic Reviews and Meta-Analyses |
GRADE-CERQual | Grading of Recommendations Assessment, Development and Evaluation- Confidence in Evidence from Reviews of Qualitative research |
Appendix A
Records before removing duplicates: 1874 Original searches (exactly as executed): | |
#1 | Adolescent/ |
#2 | adolescent*.ti,ab,hw,kf. |
#3 | (teen* or youth* or AYA).ti,ab,hw,kf. |
#4 | Young Adult/ |
#5 | ((young or emerging) adj2 (adult* or person* or individual* or people* or population* or man or men or wom#n)).ti,ab,hw,kf. |
#6 | ((highschool* or college* or university or “secondary school”) adj2 student*).ti,ab,hw,kf. |
#7 | Adult/ |
#8 | adult*.ti,ab,hw,kf. |
#9 | or/1–8 |
#10 | exp Neoplasms/ |
#11 | Cancer Survivors/ |
#12 | (neoplasm* or cancer* or oncolog* or malignan* or tumor* or tumour*).ti,ab,hw,kf. |
#13 | or/10–12 |
#14 | Videoconferencing/ |
#15 | telemedicine/or remote consultation/or telerehabilitation/ |
#16 | (e-health or ehealth or m-health or telehealth or telemedicine).ti,ab,hw,kf. |
#17 | ((virtual or remote or digital or mobile or online or hybrid) adj3 (care or health* or intervention*)).ti,ab,hw,kf. |
#18 | ((electronic or mobile or digital) adj device*).ti,ab,hw,kf. |
#19 | social networking/or online social networking/ |
#20 | Attitude to Computers/ |
#21 | exp Internet/ |
#22 | Internet-Based Intervention/ |
#23 | Mobile Applications/ |
#24 | cell phone/or smartphone/or text messaging/ |
#25 | (app or apps or smartphone* or “social media” or internet or “text message*” or web-based).ti,ab,hw,kf. |
#26 | (facebook or zoom or fitbit or instagram).ti,ab,hw,kf. |
#27 | exp Monitoring, Physiologic/ |
#28 | Fitness Trackers/ |
#29 | (activity adj1 (monitor* or tracker*)).ti,ab,hw,kf. |
#30 | or/14–29 |
#31 | exp Exercise/ |
#32 | Exercise Therapy/ |
#33 | exp Nutrition Therapy/ |
#34 | Diet/ |
#35 | Mental Health/ |
#36 | Psychological distress/or Psycho-oncology/or Psychotherapy/ |
#37 | exp “Quality of Life”/ |
#38 | Counseling/ |
#39 | psychosocial intervention/ |
#40 | Mind–Body therapies/ |
#41 | Spiritual therapies/or Pastoral care/ |
#42 | Social support/ |
#43 | Sexual Health/ |
#44 | Pain Management/ |
#45 | Palliative care/ |
#46 | exp rehabilitation/ |
#47 | (exercise* or nutrition or diet or “physical activit*” or “mental health” or counsel?ing or psychotherap* or palliative or “physical therap*” or physiotherap* or “mind–body” or “sexual health”).ti,ab,hw,kf. |
#48 | (spiritual adj1 (care or therap*)).ti,ab,hw,kf. |
#49 | (pastoral adj1 (care or therap*)).ti,ab,hw,kf. |
#50 | (pain adj2 manage*).ti,ab,hw,kf. |
#51 | (supportive adj1 care).ti,ab,hw,kf. |
#52 | sleep/or fatigue/or “Sleep Initiation and Maintenance Disorders”/ |
#53 | anxiety/or depression/ |
#54 | (anxiety* or depress*).ti,ab,hw,kf. |
#55 | (sleep* or fatigue or insomnia or anxiety or depress*).ti,ab,hw,kf. |
#56 | or/31–55 |
#57 | exp qualitative research/ |
#58 | Grounded theory/ |
#59 | qualitative.ti,ab,hw,kf. |
#60 | (interview* or “focus group*” or diary or open-ended or narrative).ti,ab,hw,kf. |
#61 | ((face or f2f or “face-to-face” or guide* or depth or indepth or “in-depth” or informal or semistructured or “semi-structured” or structured or unstructured) adj3 (discussion* or interview* or questionnaire*)).ti,ab,hw,kf. |
#62 | (ethnograph* or (field adj1 work) or fieldwork or (focus adj1 (group or groups)) or (key adj1 informant*) or qualitative).ti,ab,hw,kf. |
#63 | (“grounded theory” or “content analysis” or “framework analysis” or “thematic analysis”).ti,ab,hw,kf. |
#64 | (experience* or impression* or evaluat*).ti,ab,hw,kf. |
#65 | interview/ |
#66 | interviews as topic/ |
#67 | Focus Groups/ |
#68 | narration/ |
#69 | or/57–68 |
#70 | The Pediatric Cancer Survivors’ User Experiences With Digital Health Interventions.m_titl. |
#71 | “Young adult cancer survivors’ experience of taking part in a 12-week exercise referral programme: a qualitative study of the Trekstock RENEW initiative.”.m_titl. |
#72 | (Participant Perceptions on a Fitbit and Facebook Intervention for Young Adult Cancer Survivors: A Qualitative Study).m_titl. |
#73 | 70 or 71 or 72 |
#74 | 9 and 13 and 30 and 56 and 69 |
#75 | 74 or 73 |
#76 | 75 not 74 |
#77 | limit 74 to (english language and yr = “2000 –Current”) |
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Study, Country | Delivery Mode | Intervention Description | Cancer Type and Cancer Phase | Age Range (m*) | AYA Specific | Discourse | Study Design | Sample Size | Data Collection and Analysis |
---|---|---|---|---|---|---|---|---|---|
Psychosocial Supportive Care Interventions | |||||||||
Conduit et al. (2022) [30] Australia | Self-directed website | An information interface for testicular cancer with peer-to-peer support from a trained survivor to alleviate distress | Testicular and Diagnosis | 24–55 (32.4) | No | 2-way | Mixed methods | 39 | Interview and thematic analysis |
Donovan et al. (2019) [31] USA | Multiple | A mobile-based delivery of mindfulness audio exercises and a Facebook-based peer support group | Sarcoma and Treatment and Survivorship | 13–25 (19.3) | Yes | 2-way | Qualitative | 17 | Interview and thematic analysis |
Fergus et al. (2017) [32] Canada | Self-directed website | Understanding meanings from the creative expression exercise in the Fergus 2014 program to support couples’ coping | Breast and Multi-phase | 18–40 (33.6) | No | 1-way | Mixed methods | 13 | Open-ended survey questionnaire and content analysis |
Fergus et al. (2014) [33] Canada | Self-directed website | Promotion of dyadic coping and adjustment through modules on intimacy, relationship awareness, constructive listening and communication skills | Breast and Multi-phase | <40 (34) | No | 1-way | Mixed methods | 10 | Open-ended survey questionnaire, interviews and thematic analysis |
Greer et al. (2019) [34] USA | Peer Support System | AI chatbot on Facebook to deliver positive psychology through chatting and survivor videos | Mixed and Survivorship | 18–29 (25) | Yes | 2-way | Mixed methods | 45 | Open-ended survey questionnaire, texts, forums and thematic analysis |
Hanghøj et al. (2023) [35] Denmark | Software application | A social forum app to build a community for AYAs with cancer, provide information, and strengthen understanding and management of the illness and its symptoms. | Mixed and Diagnosis and Treatment | 15–29 (24) | Yes | 1-way | Mixed methods | 75 | Open-ended survey questionnaire, interviews and thematic analysis |
Lichiello et al. (2022) [36] USA | Facilitated virtual program | 8-week telehealth intervention with 60-min sessions derived from Acceptance and Commitment Therapy and Meaning-Centered Psychotherapy | Mixed and Multi-phase | 18–39 (26) | Yes | 1-way | Mixed methods | 8 | Open-ended survey questionnaire and thematic analysis |
Markwardt et al. (2022) [37] USA | Facilitated virtual program | A personalized AYA care plan with evidence-based self-help interventions | Mixed, and Treatment and Survivorship | 18–39 (31.64) | Yes | 2-way | Qualitative | 11 | Interviews and thematic analysis |
Melton et al. (2017) [38] USA | Facilitated virtual program | HIPAA-compliant videoconferencing application providing supportive group psychotherapy | Mixed and Multi-phase | 18–40 (30.1) | Yes | 2-way | Mixed methods | 8 | Open-ended survey questionnaire and thematic analysis |
Micaux et al. (2020) [39] Sweden | Self-directed website | The psychoeducational intervention focuses on post-cancer sexual dysfunction and fertility distress | Mixed and Multi-phase | 19–40 (33) | Yes | 2-way | Qualitative | 28 | Interview and content analysis |
Perumbil et al. (2022) [40] Australia | Self-directed website | A mindfulness-based interactive e-book with modules on paying attention five senses and self-care | Mixed and Treatment and Survivorship | 14–29 (21.65) | Yes | 1-way | Mixed methods | 20 | Open-ended survey questionnaire, interviews and thematic analysis |
Phillips et al. (2023) [41] USA | Facilitated virtual program | Mindfulness-based music therapy intervention for anxiety and stress before and during the COVID-19 Pandemic | Mixed and Treatment | 20–39 (31.5) | Yes | 1-way | Qualitative | 16 | Interviews and content analysis |
Poort et al. (2021) [42] USA | Software application | A combination of psychoeducational resources, coping skills training, and the opportunity to connect with peers | Mixed and Multi-phase | 18–39 (28) | Yes | 2-way | Qualitative | 25 | Interview and thematic analysis |
Sansom-Daly et al. (2019) [43] Australia | Facilitated virtual program | Six group-based online sessions on cognitive-behavioral intervention consisting of psycho-educational information and exercises. | Mixed and Survivorship | 15–25 (20.6) | Yes | 2-way | Mixed methods | 24 | Open-ended survey questionnaire and content analysis |
Physical Activity (PA) Supportive Care Interventions | |||||||||
Barnes et al. (2023) [44] UK | Facilitated virtual program | 8-week tailored exercise plan, with weekly calls to a cancer rehab specialist for tailored support | Mixed and Multi-phase | 13–30 (22) | Yes | 2-way | Mixed methods | 57 | Open-ended survey questionnaire and content analysis |
Mendoza et al. (2017) [45] USA | Multiple | Activity-tracking wearable device paired with an app and a virtual peer support group on Facebook to promote PA. | Mixed and Survivorship | 14–18 (16.6) | Yes | 2-way | Mixed methods | 22 | Open-ended survey questionnaire, interviews and thematic analysis |
Miropolsky et al. (2020) [46] USA | Multiple | Activity-tracking wearable device paired with an app and a virtual peer support group on Facebook peer support group with goal setting and a buddy system (adapted from Mendoza et al., 2020) | Mixed and Survivorship | 20–39 (33.8) | Yes | 2-way | Mixed methods | 13 | Interviews and thematic analysis |
Symptom Management Supportive Care Interventions | |||||||||
Erickson et al. (2018) [47] USA | Software Application | A heuristic tool to assist with symptom expression, illustrate their symptom experiences and enhance self-management | Mixed and Treatment | 15–29 (20.9) | Yes | 1-way | Mixed methods | 83 | Open-ended survey questionnaire, interviews and content analysis |
Jibb et al. (2017) [48] Canada | Software Application | 28-day Pain Squad+ pilot to provide real-time pain management | Mixed and Multi-phase | 12–18 | Yes | 2-way | Qualitative | 19 | Interview and content analysis |
Multidimensional Supportive Care Interventions | |||||||||
Heiniger et al. (2017) [49] Australia | Multiple | An information hub on testicular cancer to reduce anxiety and depression | Testicular and Survivorship | 27–57 (37.6) | No | 1-way | Mixed methods | 6 | Interview and thematic analysis |
Price & Brunet (2021) [50] Canada | Facilitated virtual program | Assessing the feasibility of a theory-based 12-week telehealth behaviour change intervention to promote PA and nutrition in rural areas | Mixed and Survivorship | 20–39 (22.9) | Yes | 2-way | Mixed methods | 7 | Interview and thematic analysis |
Price & Brunet (2022) [51] Canada | Facilitated virtual program | Understanding the motivation of the participants in the 2021 telehealth behaviour change intervention as they adapt the PA and nutrition-based plan | Mixed and Survivorship | 20–39 (33.9) | Yes | 2-way | Mixed methods | 7 | Open-ended survey questionnaire, interviews and thematic analysis |
Wurz et al. (2023) [52] Canada | Facilitated virtual program | An 8-week yoga intervention (60-min class per week) for AYAs with cancer and their support persons | Mixed and Multi-phase | 18–39 (34.2) | Yes | 1-way | Mixed methods | 28 | Open-ended survey questionnaire, interviews and content analysis |
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Mostafa, M.; Chae, Y.S.; Bland, K.A.; McTaggart-Cowan, H. The Experiences of Adolescents and Young Adults with Digital Supportive Care Interventions for Cancer: A Systematic Review of Qualitative Studies. Cancers 2025, 17, 736. https://doi.org/10.3390/cancers17050736
Mostafa M, Chae YS, Bland KA, McTaggart-Cowan H. The Experiences of Adolescents and Young Adults with Digital Supportive Care Interventions for Cancer: A Systematic Review of Qualitative Studies. Cancers. 2025; 17(5):736. https://doi.org/10.3390/cancers17050736
Chicago/Turabian StyleMostafa, Mashiad, Y. Sarah Chae, Kelcey A. Bland, and Helen McTaggart-Cowan. 2025. "The Experiences of Adolescents and Young Adults with Digital Supportive Care Interventions for Cancer: A Systematic Review of Qualitative Studies" Cancers 17, no. 5: 736. https://doi.org/10.3390/cancers17050736
APA StyleMostafa, M., Chae, Y. S., Bland, K. A., & McTaggart-Cowan, H. (2025). The Experiences of Adolescents and Young Adults with Digital Supportive Care Interventions for Cancer: A Systematic Review of Qualitative Studies. Cancers, 17(5), 736. https://doi.org/10.3390/cancers17050736