Visualizing the Invisible—The Needs and Wishes of Childhood Cancer Survivors for Digitally Mediated Emotional Peer Support

Round 1

Reviewer 1 Report

This qualitative study describes nicely the needs and wishes of AYA survivors of childhood cancer. The main findings  stressed that long-term complications, both physical and psychological, influenced the AYA long-term survivors of childhood cancer. They felt a sense of loneliness. 
The participants expressed a need to get in touch with peers who share similar experiences of cancer effects. Contact with similar others can preferably take place on a digital platform that offers various modes of communication but still enables the feeling of security.

The manuscritp is running well and is well written. 

The number of subjects is small but this is quite typical in qualittative studies and, thus, not a clear dismerit. The authors discuss a possibility of selection bias but I think that is is not a big issue as the findings in nay way describe similar themes as previous studies have shown.

My only point of correction is on page 2, rows 60-61 where the sentence is a bit unclear.

Litterature review (references) is well up-to-date.

It would be good if the authors could already propose or recommend a modern digital tool that could fulfill the needs and wishes of the survivors.

Author Response

Comments: This qualitative study describes nicely the needs and wishes of AYA survivors of childhood cancer. The main findings stressed that long-term complications, both physical and psychological, influenced the AYA long-term survivors of childhood cancer. They felt a sense of loneliness. 

Answer: Thank you.

Comments: The participants expressed a need to get in touch with peers who share similar experiences of cancer effects. Contact with similar others can preferably take place on a digital platform that offers various modes of communication but still enables the feeling of security.

The manuscript is running well and is well written. 

Answer: Thank you.

 

Comments: The number of subjects is small but this is quite typical in qualitative studies and, thus, not a clear dismerit. The authors discuss a possibility of selection bias but I think that is not a big issue as the findings in any way describe similar themes as previous studies have shown.

My only point of correction is on page 2, rows 60-61 where the sentence is a bit unclear.

Answer: We have revised this sentence: The results of previous research show that interventions based on face-to-face meetings have more positive effects compared to interventions conducted via the in-ternet.

 

Comments: Literature review (references) is well up-to-date.

Answer: Thank you.

 

Comments: It would be good if the authors could already propose or recommend a modern digital tool that could fulfill the needs and wishes of the survivors.

Answer: We have added this: In Sweden, some digital media support exists for survivors of childhood cancer, for example, the app “War on cancer”. However, no studies have been found that describe the users’ experiences of these digital tools, and whether or not these fulfil their needs and wishes.

Reviewer 2 Report

I think this is a valuable contribution to the literature. The long-lasting effects of cancer on a non-adult population is understudied. I appreciate that this research looks at digital media in particular as we have seen how we can use technology to overcome many things. I do want to make a couple of comments: 1) As the number of participants is quite small, even for a qualitative study, I would rather you label this as a pilot study and seek to take these findings for a larger test on a greater number. 2) As it seems that the population of your study are all digital natives, I am not surprised they would want a higher degree of digital support. I am somewhat surprised to find that they have not found digital support already. I feel this is a daunting task to try and find support for someone who has been on the same journey as you (diagnosis, treatment, age). In the US, there are organizations that do peer-mentoring match-ups based on their similarity of experience (National Cancer Institute has several peer/buddy mentoring connections: https://supportorgs.cancer.gov). Perhaps that same type of organizational approach can be applied for digital media for Sweden. Finally, I did not see this explained directly, so I wondered if there is no digital media support for survivors of childhood cancer in Sweden? None of my comments are to be construed as meaning this paper is not worthy of being published, but rather to fill out the picture you are drawing of your participants.

Author Response

Comments: I think this is a valuable contribution to the literature. The long-lasting effects of cancer on a non-adult population is understudied. I appreciate that this research looks at digital media in particular as we have seen how we can use technology to overcome many things.

Answer: Thank you.

 

Comments: 1) As the number of participants is quite small, even for a qualitative study, I would rather you label this as a pilot study and seek to take these findings for a larger test on a greater number.

Answer: It is a small sample, however, we chose to label this as a qualitative study.

 

Comments: 2) As it seems that the population of your study are all digital natives, I am not surprised they would want a higher degree of digital support. I am somewhat surprised to find that they have not found digital support already. I feel this is a daunting task to try and find support for someone who has been on the same journey as you (diagnosis, treatment, age). In the US, there are organizations that do peer-mentoring match-ups based on their similarity of experience (National Cancer Institute has several peer/buddy mentoring connections: https://supportorgs.cancer.gov). Perhaps that same type of organizational approach can be applied for digital media for Sweden. Finally, I did not see this explained directly, so I wondered if there is no digital media support for survivors of childhood cancer in Sweden? None of my comments are to be construed as meaning this paper is not worthy of being published, but rather to fill out the picture you are drawing of your participants.

Answer: We have added information about digital media in Sweden, i.e., In Sweden, some digital media support exists for survivors of childhood cancer, for example, the app “War on cancer”. However, no studies have been found that describe the users’ experiences of these digital tools, and whether or not these fulfil their needs and wishes.