Interviewee

Paula Forgeron, Clinical Nurse Specialist, IWK Health Centre, Halifax, Nova Scotia, Canada

Article

Forgeron, P., Finley, A., & Arnout, M. (2006) Pediatric pain prevalence and parents' attitudes at a cancer hospital in Jordan. Journal of Pain and Symptom Management, 31(5):440-8

Summary

Children's pain management represents a challenge for health professionals and caring institutions worldwide. For IPP-SHR podcasts, Hamish Holewa spoke to Paula Forgeron, about this problem and the fact that in developing countries - the focus being on Jordan - government regulations, lack of training and not enough health professionals result in paediatric pain management either being ignored or under treated. Paula discussed that through her study, the opposite occurred to what previous literature had stated: parents in Jordan wanted their child's pain managed, that mothers wanted to make decisions about care and no concerns were raised about addiction. This study challenged the religious assumptions that had been placed on the parents and revealed that almost all the parents felt that their worst pain experience was to see their child in pain.

Transcript

Hamish Holewa: Hi and welcome to IPP-SHR podcasts, I’m Hamish Holewa and for today’s podcast I’m talking to Paula Forgeron, clinical nurse specialist in the Complex Pain Clinic- IWK Health Centre, Halifax, Nova Scotia, Canada. We are speaking with Paula today about her study and article titled: ‘Pediatric Pain Prevalence and Parents’ Attitudes at a Cancer Hospital in Jordan’, which she co-authored with others listed on our website and was published in the Journal of Pain and Symptom Management. Do you want to begin by explaining the problems associated with paediatric pain management internationally, and the specific problems in Jordan?

Paula Forgeron: Well to set the context, it’s important to realise that children’s pain management is a problem everywhere. Even in the rich countries like Canada and Australia, many children find their pain ignored or under treated. So, imagine how much worse it can be in an under resourced country, where’s there’s not enough health professionals, for one, to care for children, and medications, especially, opioides, morphine, and monitoring equipment are in short supply. So with respect to developing countries, and Jordan in particular, Jordan certainly isn’t the poorest out of those countries and although they have a relatively good medical system, the nurse patient ratio is actually quite high, and they also have very strict government regulations concerning opiate availability and prescription. And this situation is very common in developing countries; and pain management hasn’t been much of a priority, as one might suspect, and so what we found is a lot of health professional in these countries don’t have the mentorship and the training around pain management that you might find starting more in developed countries.

Hamish Holewa: Your findings challenge a lot of myths about paediatric pain management, could you talk about your findings on parents’ attitudes in wanting their child’s pain managed and the use of opioides?

Paula Forgeron: Well, we went over, expecting barriers to pain management, due to parents’ beliefs, in particular a fear of opiates or other medications. And there was literature to suggest that the family structure would mandate decision making by fathers rather than mothers. And we were also quite unsure about religious objections to the use of strong medications like morphine. And so we were surprised to find mostly the opposite: all the parents in our interviews wanted their children’s pain managed, and actually told us they took their child to the hospital to receive pain medications, because they were at a loss of what to do at home; and no parents expressed concern about the use of opiates; no one mentioned a risk or a concern about addiction. In fact, one of the parents said, “psychological support is not enough,” and another stated that nurses and doctors should do more, and get medications much sooner. So contrary to the literature that we had read prior to going the mothers were happy to make decisions about care and many of them felt that it should be their responsibility, because they were the ones in the hospital with the child and seeing them suffer. So, there were no expressed concerns, certainly, about morphine or any other types of opiate.

Hamish Holewa: As noted in the introduction to your article, an understandable assumption for parents in the Jordanian hospital system could be that, pain is viewed as a result of God’s will and thus accepted. Your findings challenge this assumption – can you talk about your results on this issue?

Paula Forgeron: Yeah, our findings do challenge that assumption that Muslim parents would believe pain and suffering were due to God’s will and that should be endured. We actually did in-depth interviews with 22 parents, within those, 13 didn’t even make a reference to faith, religion or Allah - and these interviews lasted for an hour, and were conducted by Jordanians, so that Arabic and body language and tone and stuff would be interpreted correctly from a cultural perspective. 19 of them didn’t even raise the issue and some of the parents described the pain as being God’s will or a test from God, and a very few sited that reading from the Quran and praying would help decrease the child’s pain. But even amongst those who talked about it, none of them felt the pain should be endured without medication. One didn’t necessarily mean the other. I think it’s important to note that a belief in the use of prayer to cope with struggles in life, such as pain, certainly is not unique to Islam and has been identified in other studies, of different faiths, and therefore, we didn’t attribute that to a particular cultural finding.

Hamish Holewa: And is this assumption backed up in the literature?

Paula Forgeron: Yeah, so I think a lot of these are assumptions that may be tied more to a stereotype, and therefore when you actually delve a bit deeper those aren’t there, and in fact, the literature that I read that made us be a little bit concerned about that were not researched based articles, they were writings to help you be aware of how to interact with various people from various different cultures, but yet they weren’t research based. So they were more their assumptions, so we didn’t find that when we actually delved deeper.

Hamish Holewa: In your article you note that parents’ worst pain was the pain of having a child with cancer. Do you want to talk further about this important issue?

Paula Forgeron: So as part of the semi-structured interview we asked questions to develop a deeper understanding of parents’ attitudes and beliefs around their child’s cancer pain. One of the questions specifically asked about the parents own personal pain experience, and almost all of them stated that their worst pain experience was seeing their child with cancer, suffering from pain. And, I mean, we probed these sorts of responses during the interview, by asking specific probes about physical pain, like child birth or injuries, we were giving examples. And quite unexpectedly, they maintain that their worst physical pain, ever, came from watching their child suffer, in pain, or being told they had a diagnosis of cancer. And I thought that was quite fascinating, because it not only confirms anecdotal reports of the pain of a broken heart, or heart ache. But there’s been some recent work by Isenburger and Lehrman, in which they use functional MRI’s, and shows links and some overlap between the areas of the brain where social rejection or social pain, and physical pain are registered. So this finding speaks to the need for all of us to involve parents in their children’s pain, as they suffer alongside their child. So in many ways, this finding helps understand why the mothers felt they had a role in decision making about their child’s pain care. As helping to relieve the child’s pain care, may help relieve their own worst pain.

Hamish Holewa: Could you talk about the implications of your findings on these issues, such as, the parents’ presence, shared decision making and the child’s responsibility for pain expression, for those who work in pediatrics in Jordan and elsewhere?

Paula Forgeron: It was no surprise that parents wanted to be present for procedures or treatments, or it certainly wasn’t a surprise to us who were investigating this, and that would be true in Canada and Australia as well. The real issue around that piece though is helping parents know what parent behaviours are most effective. Because there’s research to show that distraction is very effective in painful procedures, but reassurance and comforting, during the procedure itself may not be. So now parents and the hospital receive information about how to best distract their child during a painful procedure. With regards to parents wanting information and to participate in decision making, we presented this finding to the staff - as we were moving through to the next research step - so that they were aware how parents felt, instead of bringing their own presumptions to the relationship with parents. Because there was a presumption that parents wouldn’t be interested in such decision making or information; they were trying to be protective. So, as part of the overall project, a parent booklet on pain management was written; and now when the child with a new diagnosis of cancer comes to the hospital, parents receive this information booklet, which gives them information about how to help their child when they’re in pain, including, telling the nurses and physicians about it, and some tips on the pain care for home. And one of the other interesting findings - and this is relatively a novel idea - both parents and health professionals felt that children should tell us about their pain, they thought it was quite novel to ask a child about their pain. They expected children to express their pain spontaneously, they should be crying, they should be grimacing, they should be complaining. In fact, parents said their children should tell us when they’re having pain so we can help them. However, we know from research that pain behaviours’ attenuate over time, so a child who is quiet or seems to be sleeping may still be having significant pain. And therefore, it’s essential that children be asked if they’re having pain, and how much, in an age appropriate manner. So, part of our development program in Jordan was to implement and encourage the use of a self report scale for pain measurement. So, all of these strategies: informing parents how to support their child in a painful procedure; parent education on pain management strategies and the importance of managing children’s pain; reassuring nurses and physicians that parents are not afraid to have their child’s pain managed, and actually expect it and wanted this to happen; and instituting a self report scale for children, are important and relatively easy to do. And all of these help to increase the recognition of the children’s pain and the hospital we were working at in Jordan, which increased the pain treatment they received, of course. And all of these strategies certainly could be implemented in any developing country, or developed country for that matter.

Hamish Holewa: Well Paula, thank you very much for sharing your work with us today for IPP-SHR podcasts.

Paula Forgeron: Well, thank you Hamish it’s been my pleasure