Assessing the Comprehensive Training Needs of Informal Caregivers of Cancer Patients: A Qualitative Study

Round 1

Reviewer 1 Report

Dr. Papadakos and co-authors conducted a qualitative study on the experience of informal caregivers of cancer patients. The topic is very interesting and relevant for understanding the specific needs of caregivers that have to deal with these duties.

However, even if it is a qualitative study, the article seems to be too descriptive and not incisive in focusing on the aims declared. 

Major Criticisms:

• Methods: Only two types of cancer were considered (head and neck and breast cancer). Authors can specify it in the title of the study.

• Methods: It is unclear and not well described the Authors’ decision of evaluating the computer literacy of caregivers.

• Discussion: This section is too long and not well organized in giving clear results. Moreover, it is difficult to follow the speech fluency.

• Discussion: Authors should consider the small number of participants as a limitation of the study.

Author Response

Response to Reviewers (Please see attachment)

RE: Manuscript ID: curroncol-2257195

Thank you and the reviewers for your thoughtful review of our manuscript, “Assessing the Comprehensive Training Needs of Informal Caregivers of Cancer Patients: A Qualitative Study”. We appreciate the reviewer comments and have made edits and changes to our manuscript to address them. 

 Reviewer #1:

Dr. Papadakos and co-authors conducted a qualitative study on the experience of informal caregivers of cancer patients. The topic is very interesting and relevant for understanding the specific needs of caregivers that have to deal with these duties. However, even if it is a qualitative study, the article seems to be too descriptive and not incisive in focusing on the aims declared. 

Thank you for your feedback. We have added language throughout the results and discussion section to hone in on the objective, and we that we hope addresses this concern. We have also responded to the major criticisms point-by-point below.

Major Criticisms:

• Methods: Only two types of cancer were considered (head and neck and breast cancer). Authors can specify it in the title of the study.

The study was designed to assess the needs of cancer caregivers generally rather than those caring for patients with any given type of cancer. Neither the interview guide, the draft curriculum, nor the training portal were drafted with any specific type in mind. The fact that only head and neck cancers and breast cancers are represented reflects not the study design, but the difficulties recruiting participants during the COVID-19 pandemic. Attempts were made to ensure a diverse population through purposive sampling however, we were compelled to seek the assistance of clinicians to assist with recruiters, with varying results from each clinic. While we did initially recruit participants with/caring-for-those-with other cancers, they were lost during follow-up. While we understand the desire to clarify that only two types of cancers were represented, we think it is best we list this as a limitation rather than in the title, as it may give readers a misleading idea of the scope of the paper. We have made changes to the methods section to better reflect our recruitment aims. It now reads:

“Recruitment was conducted among patients and caregivers in various clinics, including the head and neck clinic, breast cancer clinic, and the allogeneic stem cell transplant clinic.”

• Methods: It is unclear and not well described the Authors’ decision of evaluating the computer literacy of caregivers.

Thank you for pointing this out and our apologies for the oversight. We did have a sentence in the methods section that reads, regarding both the health and computer literacy measures taken of participants, “These metrics were used to assess the capability of participants to understand, appraise, and research health information.” To further clarify our aims concerning the use of the computer literacy measure, this section now reads:

 “These metrics were used to assess the capability of participants to understand, appraise, and research health information, with the computer literacy metric provided further detail on the technological proficiency of participants. The insight they provide will inform the modalities and overall structure of the resulting education program.”

• Discussion: This section is too long and not well organized in giving clear results. Moreover, it is difficult to follow the speech fluency.

Thank you for the feedback. We have tried to trim down the section and add subheadings that we hope will make the discussion section of the manuscript easier to follow for readers.

• Discussion: Authors should consider the small number of participants as a limitation of the study.

            Thank you for pointing this out. We have noted this in the manuscript now.

Author Response File: Author Response.docx

Reviewer 2 Report

Dear Rueangsit Inthong,

Thank you for giving me the opportunity to review the manuscript entitled “Assessing the Comprehensive Training Needs of Informal Caregivers of Cancer Patients: A Qualitative Study” (Manuscript ID curroncol-2257195) for Current Oncology.

The authors report results from a qualitative study with 13 participants who participated in one-time semi-structured interviews. The study includes an additional quantitative component (socio-demographic survey and European Health Literacy Survey Questionnaire). The study aims at exploring cancer patient and family caregiver (support) needs and assessing a caregiver training course. Overall, this is an informative manuscript that contributes to the still under-researched phenomenon of family caregiving.

My concerns mainly address methodological issues (please see Detailed concerns below). In order to ensure comprehensive reporting of all relevant—particularly methodological—issues, I suggest the authors review their manuscript using the COREQ qualitative research reporting checklist (Tong et al., 2007) and add missing information accordingly.

Detailed concerns:

–           General comment: The authors use the rather vague term „caregivers“ in their manuscript. I suggest the authors replace “caregivers” by “family caregivers” throughout their manuscript and in the manuscript title (instead of informal caregivers). Also, please define your usage of the caregiver-term. What does caregiving involve according to your definition (e.g. only practical caregiving tasks or also emotional support)?

–           Abstract: Please mention the quantitative component of your study (questionnaire) in the Methods section of your Abstract. Otherwise, it would remain unclear what your sentence “Both scored high on computer and health literacy metrics” refers to.

–           2. Materials and Methods, p. 2, line 96: Please could you explain how your approach is a phenomenological one?

–           2. Materials and Methods: Please add information on the inclusion/exclusion criteria for patients and cancer caregivers (e.g. only family caregivers or also non-kin caregivers such as neighbours or friends?).

–           3. Results: p. 4, lines 154-5: Please could you report recruitment rates? How many family caregivers and patients did you approach and how many of those participated in your study? What were the major reasons for non-participation? Please could you also explain why you interviewed a sum of 7 family caregivers and 6 patients (which seems quite small considering that you followed a diversity sampling strategy)? In how far could you reach data saturation in your study and how did you determine this?

–           3.1 Participant characteristics: Please could you provide information on how many patients had early-stage/advanced cancer and how many of the family caregivers cared for a patient with early-stage/advanced cancer?

–           Table 1: In which currency is household income reported—US dollars or Canadian dollars? Please could you add this information in Table 1?

–           3. Results: You mention in your Methods section that your interview process was informed by the concept of reflexivity (p. 3). How did this play out in your results?

–           4. Discussion: You mention limitations of your study in the Discussion section. I think the manuscript would benefit from a “strengths and limitations” subsection.

Author Response

Thank you for your thoughtful review of our manuscript. We have endeavoured to address your concerns below and in the attached manuscript with changes tracked.

Reviewer #2: (See attachment)

Thank you for giving me the opportunity to review the manuscript entitled “Assessing the Comprehensive Training Needs of Informal Caregivers of Cancer Patients: A Qualitative Study” (Manuscript ID curroncol-2257195) for Current Oncology.

The authors report results from a qualitative study with 13 participants who participated in one-time semi-structured interviews. The study includes an additional quantitative component (socio-demographic survey and European Health Literacy Survey Questionnaire). The study aims at exploring cancer patient and family caregiver (support) needs and assessing a caregiver training course. Overall, this is an informative manuscript that contributes to the still under-researched phenomenon of family caregiving.

My concerns mainly address methodological issues (please see Detailed concerns below). In order to ensure comprehensive reporting of all relevant—particularly methodological—issues, I suggest the authors review their manuscript using the COREQ qualitative research reporting checklist (Tong et al., 2007) and add missing information accordingly.

Thank you for your feedback. We are glad to hear that you found the subject matter an important area of research and the manuscript informative. We have endeavoured to address the detailed concerns below and have gone through COREQ qualitative research reporting checklist you recommended and have added any missing information.

Detailed concerns:

–           General comment: The authors use the rather vague term “caregivers” in their manuscript. I suggest the authors replace “caregivers” by “family caregivers” throughout their manuscript and in the manuscript title (instead of informal caregivers). Also, please define your usage of the caregiver-term. What does caregiving involve according to your definition (e.g. only practical caregiving tasks or also emotional support)?

       Thank you for pointing this out to us. We apologize for not clearly defining “caregiver” for the purposes of this manuscript. Lines 4-5 of the manuscript reference unpaid, informal caregivers but we realize that we did not explicitly state that this was our study population and, we did not offer further elaboration of who these unpaid informal caregivers are. Unpaid, informal caregivers in our study includes family and friends. We have added clarification to the Abstract, Introduction and Methods sections of the manuscript which we hope clarifies our usage of the term. 

“For participants, the inclusion criteria required they be at least 18 years of age, and able to read, write, and speak English. Patients had to have been diagnosed with cancer and received at least one cycle of chemotherapy or targeted therapies, and/or radiotherapy treatment, and/or cancer surgery. Informal caregivers were defined as an unpaid person (family/friend) caring for someone diagnosed with cancer, without restrictions on time commitment. Participants were excluded if the patient was treated with curative surgery alone.” 

–           Abstract: Please mention the quantitative component of your study (questionnaire) in the Methods section of your Abstract. Otherwise, it would remain unclear what your sentence “Both scored high on computer and health literacy metrics” refers to.

       We describe and identify both metrics in the Methods section in the body of the manuscript. Due to word count restraints, we have decided to omit reference to them in the Abstract. There is insufficient space to include a description of why they were collected and on their own, we agree that they raise more questions than answers. We hope you find this explanation satisfactory.

–           2. Materials and Methods, p. 2, line 96: Please could you explain how your approach is a phenomenological one?

       Sorry for not including an explanation. We have added this to the above sentence to that section:

       We invited participants to describe their experience of cancer and the caregiving process and utilized this feedback to inform and orient our understanding of caregiving as a phenomenon and the needs of cancer caregivers.

–           2. Materials and Methods: Please add information on the inclusion/exclusion criteria for patients and cancer caregivers (e.g. only family caregivers or also non-kin caregivers such as neighbours or friends?).

       We apologize for the lack of clarity here. We have added language to clarify the inclusion and exclusion criteria for patients and caregivers as you can see in our response to your first detailed concern.

–           3. Results: p. 4, lines 154-5: Please could you report recruitment rates? How many family caregivers and patients did you approach and how many of those participated in your study? What were the major reasons for non-participation? Please could you also explain why you interviewed a sum of 7 family caregivers and 6 patients (which seems quite small considering that you followed a diversity sampling strategy)? In how far could you reach data saturation in your study and how did you determine this?

       Due to the ongoing COVID-19 pandemic, in-person recruitment at the hospital was difficult. We were reliant on clinicians to conduct on-site recruitment and since caregivers were not permitted to accompany patients to their appointments for the greater part of the pandemic, this was particularly challenging. In addition, because clinicians conducted recruitment, we did not collect data on response rates. While our participant population may appear small, we think it encompasses a diverse group of participants based on characteristics, such as age, living arrangements, relationship to patient/caregiver, etc., that allow for a thorough understanding of the caregiver experience. We concluded our recruitment based on an assessment of whether data saturation had been reached, which was in turn based on whether the coding process was returning the same or similar themes and information. We have added the following passage to the methods section to clarify this last point:

       “Data saturation was determined based on the degree to which the coding process was returning the same or similar information and themes. At this point, no further recruitment was conducted.”

–           3.1 Participant characteristics: Please could you provide information on how many patients had early-stage/advanced cancer and how many of the family caregivers cared for a patient with early-stage/advanced cancer?

       Unfortunately, we did not capture the stage of cancer along with the other demographic information. As per our inclusion criteria, patients had to have received at least one cycle of chemotherapy or targeted therapies and/or radiotherapy treatment and/or cancer surgery. During the course of interview, participants disclosed in greater detail the cancer stage. We can report from those discussions that different stages were represented among our patient-participants and the patients whom our caregiver-participants cared for, however we do not have precise figures to report. We have added the following passage to add commentary to this effect.

       While we did not collect information from participants on the stage of the cancer care trajectory they were in, through the course of the interviews our participants shared a range of experiences from diagnosis through to end-of-life and survivorship.

–           Table 1: In which currency is household income reported—US dollars or Canadian dollars? Please could you add this information in Table 1?

       Thank you for pointing this out to us. We have added the currency denomination (CAD) to the table.

–           3. Results: You mention in your Methods section that your interview process was informed by the concept of reflexivity (p. 3). How did this play out in your results?

       Thank you for pointing this out. We have added the following passage:          

       Having no experience with caregiving in the context of cancer, but part of the team developing and building the caregiver support program, the interviewer and coder needed to remain cognizant of their hopes for endorsement of the curriculum so as to minimize any undue influence on the direction of the interview. Thus, the interviewer endeavored to stay attuned to what participants were saying with respect to other supports or challenges as well as any critical feedback on the draft curriculum.

–           4. Discussion: You mention limitations of your study in the Discussion section. I think the manuscript would benefit from a “strengths and limitations” subsection.

       Thank you for pointing this out. We apologize and have added a subsection on strengths and limitations.

Strengths and Limitations

       This study is limited by its relatively small sample size. The COVID-19 pandemic made recruitment difficult, with many patients conducting virtual appointments with their oncologists and with caregivers limited in the degree to which they could accompany patients due to the stringent infection control measures put in place at the cancer centre. As mentioned above, participants were also better educated and possessed high health literacy compared to the general population. Lastly, those most burdened caregivers were not represented due to the difficulties in securing their participation. The strength of this study is that it provides a useful snapshot of the caregiver needs broadly, and places them in context of their experiences. It also addresses the avenues in which these needs can be met, based on the input of patients and CGs themselves.

Author Response File: Author Response.docx

Round 2

Reviewer 1 Report

Authors have provided appropriate responses and modifications to the suggested comments.