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. Author manuscript; available in PMC: 2019 Jun 1.
Published in final edited form as: J Pain Symptom Manage. 2018 Feb 21;55(6):1519–1530. doi: 10.1016/j.jpainsymman.2018.02.009

Table 3.

Qualitative themes, illustrative quotes, and intervention modifications

Main Themes Sample Quotes Intervention Modifications
Domain 1: Content
(a) Make topical content flexible so that it matches an individual’s specific needs “…maybe the coach should…do…a primary assessment, or some type of preliminary assessment. At least get some kind of idea of what they think this person may need, and then tweak it as they go along……” –Caregiver 19
“The most important thing would be to do the first assessment…it will guide you to the next place and then this will be the framework of what is going to be covered…“ –Navigator 25

  • Keep topical content proposed in outline (Theme a)

  • Make additional or more in- depth content available based on regular assessment (Theme a)

  • All written materials composed at a 8th grade reading level (Theme b)

  • Frequent use of graphics to depict content (Theme b)

  • Assess and discuss spirituality/faith as a subcomponent of the intervention (Theme c)

  • For spiritual distress, have protocols in place for referral to a chaplain or other spiritual professional (Theme c)
(b) Keep content simple and visual “…When they call…walk’em through it…“ –Caregiver 23
“…having large print, so possibly some little diagrams that people can look over. …Pictures help more…” -Navigator 03
“I can make sense of a lot of things by seeing it through a video…because it’s showing me, not trying to tell me…some people that don't comprehend very well big words, intelligent words, they need it in more of a layman's terms. Something simple to talk about and in a way that they can understand.” - Patient 09
(c) Assessing spirituality/faith is important but should not be an overarching theme. Crises should be referred to a spiritual professional. “…let it be an option that's put out there for 'em. …assess their level of spirituality and how deeply rooted their family history is, or their particular history is, in religion and maybe go from there.” – Caregiver 19
“I would definitely think that’s somethin’ you’d have to find out about an individual…You don’t wanna make them think it’s all about spirituality.” –Caregiver 33
“It is hugely important I think for it to be there, but I think it needs to be almost like optional.”–Navigator 06
Domain 2: Format
(d) Some participants may desire more than six sessions “Six sessions sound about right. I can’t tell you, for sure. I may still need more sessions when you get through with that number six one.” -Caregiver 20
“…six sessions sounds about right…especially at first, when everything is so hectic and so—just trying to get everything straightened up and leveled out and everybody in place to take care of them. That’d be great.” -Caregiver 32

  • Retain 6 core sessions and included additional sessions as needed/requested by participants (Theme d)

  • Sessions deliverable within 20 minutes with the flexibility of lasting up to 1 hour (Theme e)

  • Include eligibility criteria that ask about ability to participate in at least 6 weekly sessions that last a minimum of 20 minutes each (Theme d, e)
(e) One hour may be too long for some people “It’s gonna be different for each person depending on where they is in their journey. Just because I may only need 15 minute or 30 minutes this month don’t mean 6 months from now, I don’t need an hour.” –Caregiver 09
“I think that's a good target is one hour…sometimes it may last less than an hour, sometimes it may last a little more depending on what may be goin' on in their lives at that time…” - Caregiver 19
“I think an hour a time on the phone is kinda hard sometimes to carve that much time out of your day…I think 30 minutes would be really easy for most people.” -Caregiver 23
Domain 3: Delivery
(f) Internet access is a problem in rural areas even though using internet-based technology (e.g., smartphone apps, websites) might be helpful “Well, it might work if you have a good internet connection… Ours is very, very, very, very slow. …That’s why I don’t even get on e-mail anymore, because if I try to download somethin’ it takes forever and a day. … I just stay away from it, because we got about the slowest e-mail internet thing…” -Caregiver 22
“…in rural areas, they don’t have internet. They can’t get it even if they wanted to.” –Caregiver 24
“A lot of people [in rural areas] don’t [have internet]. It’s very expensive. … When you live like we live way out in the country there’s only certain options for you to have internet. … I find that one of my biggest struggles.” -Caregiver 33
“I think that’s a good people for people that’s computer-savvy, but people that are not, maybe somebody can come and help them. … I think a lotta people that could do it, would do it, and those that don’t would probably wanna learn how.” -Patient 18

  • Augmenting intervention with internet-based technologies will need to be pilot tested for feasibility with special emphasis on internet access provision (Theme f)

  • Mixed in-person and telephone contact (at least 1 in-person visit) (Theme g)

  • Therapeutic alliance building needs to be key foundation of intervention (Theme g)

  • Intervention could be navigator-led with additional training and regular supervision (Theme h)
(g) Using a mostly telehealth approach is acceptable but initial face-to-face contact is desirable to establish the relationship “I’d want a face to face…that would make me feel …that this is a real program and they really, really care.” –Caregiver 28
“Any opportunity for face to face…enhances your value on multiple, multiple levels…shows our depth of care.” –Navigator 16
(h) Mixed views on lay navigator role in intervention “I like the team approach…it’s a collaborative thing…“–Navigator 03
“…it would need to fall into more of a counselor context…“–Navigator 07
“Do I think a lay navigator could do something like this? Yes…I do, most definitely.” -Navigator 23
“I think if we are given the right trainin’ for this, we could be the coach…“ –Navigator 05