Participant Characteristics
Thirty-six learners were eligible and invited to participate, and seventeen of these individuals completed the study (Figure 1). Participants represented three healthcare professions from a variety of practice setting across India and Bangladesh (see Table 2). Each focus group lasted approximately 60 minutes.
Figure 1. Study Participants Flow Diagram
Table 2: Demographic Data of Focus Group Participants (N=17)
|
Sex
|
n
|
%
|
Male
|
12
|
70.6%
|
Female
|
5
|
29.4%
|
Country of Residence
|
n
|
%
|
India
|
10
|
58.8%
|
Bangladesh
|
7
|
41.2%
|
Clinical Role
|
n
|
%
|
Physician
|
14
|
82.4%
|
Pharmacist
|
1
|
5.9%
|
Nurse
|
1
|
5.9%
|
Program Coordinator
|
1
|
5.9%
|
Primary Practice Setting
|
n
|
%
|
Rural Palliative Care Service (combined hospital and home-based service)
|
8
|
47.1%
|
Hospital-based Palliative Care Service
|
7
|
41.2%
|
Hospice
|
1
|
5.9%
|
Community-based Palliative Care Service
|
1
|
5.9%
|
Themes
Two major themes containing seven sub-themes (Table 3) were identified through analysis of the focus group transcripts.
Table 3. Study themes and sub-themes
Themes
|
Sub-themes
|
Benefits of participation in ECHO PPC
|
Creation of a community of practice
|
Opportunity to exchange cultures, ideas and experiences
|
Supportive role of the facilitator and peers
|
Increased relevant knowledge and skills
|
Access to additional learning resources
|
Barriers to participation
|
Difficulties with time and practice schedule management
|
Language and sociocultural factors
|
Theme 1. Benefits of participation in ECHO PPC
Participants consistently identified several benefits which they derived from participating in ECHO PPC. These benefits fall into five subthemes: creation of a community of practice; opportunity to exchange cultures, ideas and experiences; supportive role of the facilitator and peers; increased relevant knowledge and skills; and access to additional learning resources.
Creation of a community of practice. The sense of community and opportunity for networking afforded by ECHO PPC was a salient theme across all four focus groups. Becoming members of a worldwide community of learners was a meaningful aspect of participants’ experiences. Participants 16 and 10 mentioned this, “So, actually, I feel that I am in a community. This is more like a classroom and I can attend or share my knowledge or my experiences with another person or another people that are sitting in a different country. I feel that we are sitting in one room. I do feel that. I think it is good that I feel I am in the community in learning from different countries”, “I think that all of the regular participants, so when I saw Dr. X for the first time in Bangladesh, I didn’t feel like I was a stranger or anything. We knew each other for one year on the ECHO platform and it’s kind of helped us to speak easier”. In keeping with the theme of community, Participant 6 added “I felt like a family. When Dr. X [the ECHO facilitator] calls on me and asks what my name is, we feel very welcome”. Participants reported that they would like to go back to the built community and continue their collaboration, participant 14 stated “Once the program is done, we feel that we want to go ahead and continue and do something else so that we can keep on having ties”. This also was the case for Participant 10, who revealed that “We constantly sit together after the ECHO sessions. We discuss ourselves and [watch the video of] that session later and then apply it to the job”.
Moreover, networking with other care providers both within their own country and internationally built opportunities for sharing knowledge and resources outside of the ECHO platform, as described by Participant 10: “I feel my network has grown a lot more after the ECHO. I got introduced to a lot more people and that will help me to contact them directly”.
As members of healthcare teams, participants also considered participating in the community of practice as a form of continuing medical education to be an integral aspect of their professional identity. Participant 16 summarized this idea, in the following way: “To treat my patients, I have to gain knowledge… I have to attend ECHO session or from wherever I gain knowledge, I have to attend those things. That is my responsibility, to do my job properly”.
Opportunity to exchange cultures, ideas and experiences. The role of culture, ideas and experiences exchange was emphasized in most participants’ comments. For instance, Participants 2 and 8 mentioned “We are different people from different culture, and the culture is not matching with everybody or the culture is not the same. Sometimes I definitely feel comfortable to raise issues regarding what we are doing in our country to compare with other countries. I think it’s rational and it’s helpful”, “There are cultural differences and similarities that have yet to be explored, and these ECHO sessions are very helpful for that”.
In addition, ECHO PPC provided a platform for sharing ideas as summarized by Participant 10 “What kept us going was that most of the topics were from an international western view. Presenting cases from mostly an Indian and Bangladeshi background kind of brought in the discussion of how we could adapt the same things to our context. That’s why ECHO was very good for me”. The curiosity that participants shared for cultural diversity in psychosocial care were reflected by Participant 14: “Some of the things we’ve learned coming from the Western world, how can we apply them in the India or Bangladesh context? It’s not true that these are good for the West and not applicable in India… Many people say “but people don’t want to remember [their child after their death]”, and I’m not sure! There are cultural differences and similarities that have yet to be explored, and these ECHO sessions are very helpful for that”.
Participants also noted that their involvement in ECHO PPC could impact their broader local professional network, as they identified opportunities in practice to share their newly acquired knowledge with colleagues who were not part of ECHO PPC. Participant 16 summarized: “there are lots of physicians that are not aware enough to use opioids…So I take this opportunity as my responsibility to make aware all of the physicians that it’s a good drug and you can prescribe it and how to prescribe it… Like this, when I get some shots of knowledge, this is my responsibility to aware other physicians who are not very familiar with these types of knowledge”.
Supportive role of the facilitator and peers. Having supportive facilitators and peers who are from the same culture and speak the same language emerged as an important theme. As Participant 5 stated “We could understand her (the facilitator), she directs everybody, after finishing session, she summarizes the whole session if anyone didn’t catch sometimes”, and Participant 11 continued “She connects people. She introduces the other people who join in the ECHO, … (the facilitator) is from India, so there is coordination and English translation. It’s helpful for us to understand”. Participants also highlighted the significant role of other peers to encourage them to participant in their training sessions.
Increased relevant knowledge and skills. Participants highlighted the importance of gaining new knowledge and skills relevant to pediatric palliative care. Participant 11 mentioned “I think I choose this ECHO session to learn about more and increase my skills and knowledge regarding pediatric patient management”. In addition, Participants 6 and 8 added respectively, “we can learn from the different people’s perspectives. The worldwide teachers that teach us through these ECHO sessions”, and “the sessions give me the floor to learn new things in pediatric palliative care. After the case presentation there is a group discussion which is helpful. These have helped me a lot to learn new cases. I am so happy because pediatric palliative care is new for me.”
Improved communication skills were regarded as a particularly valuable. Participant 1 commented: “Before the ECHO session, I have a fear and feeling that I could not communicate with children… By the ECHO session, now I know how to communicate with children and how to talk with their parents about death and the prognosis. This is the most important thing that I learned from the ECHO”. Similarly, Participant 5 added “The most important thing that helps us a lot is building relationships with the children and the family…, from my perspective, it really helps us a lot to get in touch with the kids because kids are not always like adults. So, to get near to the kids and reduce their symptoms, the ECHO sessions really helped”.
Many participants had some experience with adult palliative care and recognized the fundamental differences in the knowledge and skills which are needed to manage children with life-limiting illnesses. As participant 17 noted, “It’s really very important for us because at a centre like in Bangladesh, we started to do pediatric palliative care very recently. We have a separate ward for that but unfortunately, we were not very focused with the pediatric palliative patients before. So, when we got attached with ECHO, it became very easy for us to relate with the patients at the centre”.
Access to additional learning resources. Participants reported that access to additional educational resources which were provided after ECHO sessions lead to increased confidence, reduced feelings of burnout and stress, and improved health outcomes for patients. Participant 12 stated, “Working in palliative care, there is a thing called burn out, and working with pediatrics patient is the big thing…When I deal with pediatric patients, I feel stress more because there is a need to handle the pediatric patient and also the parents and there is more stressful work… If I don’t know about pediatric palliative care, how do I give support? I feel more stressed. But now, when I see my patients, I know how I can help them and the parents, how I can remove their anxiety and some of my fears. Now I feel that my stress is reduced”.
Theme 2: Barriers to participation
Analysis of the focus group data revealed that some participants encountered barriers to participation in ECHO PPC sessions. These barriers fell into two subthemes: difficulties with time and practice schedule management and language and sociocultural factors.
Difficulties with time and practice schedule management. The most common challenges noted by participants revolved around time constraints and managing hectic practice schedules to attend ECHO PPC sessions. For example, Participant 4 summarized “From 9-5 we have to cover our patients, home care we have to attend, we have to go for lunch also and we have to attend ECHO Sessions, and team meetings, and case presentations….We have to go here and there and we have to update everything, there are a lot of people suffering”. Similarly, Participants 11 stated “coming to a monthly session is okay, but with 2 meetings each week on our side, and of course locally we have to attend so many meetings, sometimes from health commissioner, so we have to do all of those things”.
In the event that participants could not attend all ECHO PPC sessions, some participants reported that missing sessions created negative emotions including stress and guilt. Participant 8 recalled “I wanted to make that time, but it was very difficult for me. I would get caught up in so many things” and Participant 10 summarized the notion by “A couple of times, those days were really critical, and I couldn’t make it for the session. It was just not possible. Then you would feel bad that you missed this. That would really bring stress because you missed out. That reminds me of the session where I were supposed to have a Zoom call and I slept, I got up in the middle of the night and started messaging [the facilitator] and didn’t fall asleep the whole night because I was so panicky”.
Language and sociocultural factors. Participants highlighted that there were some barriers related to language and socio-cultural differences that made it challenging to communicate their PPC knowledge to others or to take the most from the sessions. Participant 5 stated that “English is a barrier. So, I can translate some slides in Bangla (Bengali language) and I can also share some videos. The videos are in English, but I can translate for them”. Participant 3 added: “When we are talking with each other, it is easier to understand. During the actual session when we are participating in ECHO, it is somehow difficult to understand, due to rapport or fluence, the language, the way you are talking… maybe that is the only difficult part”.
A reluctance to speak in the group setting due to shyness emerged as another challenge participants faced. Participant 11 recalled “I was feeling shy because we didn’t know each other” and Participant 15 added that her preference was to “type [questions] out because sometimes you aren’t looking nice on the screen; sometimes it’s actually a good idea so that everyone can catch your question”. The reluctance to standing-out during the sessions was described in further detail by Participant 12: “Sometimes we are not comfortable and wonder if we should ask the question or not. In our culture, sometimes there are some barriers. Sociocultural things [are] an important part of our centre and culture, but sometimes it is uncomfortable for us”.