Fighting Over Food: Patient and Family Understanding of Cancer Cachexia

with Joanne Reid, RGN, Dip, BSc (Hons)

2010-09-14 11:05:11 stephanie@ons Welcome to the ONS Virtual Journal Club! We will be discussing Fighting Over Food: Patient and Family Understanding of Cancer Cachexia with Joanne Reid, RGN, Dip, BSc (Hons)
2010-09-14 11:05:33 stephanie@ons Joanne Reid (RGN, PhD) is a Lecturer in Cancer Nursing with the Nursing and midwifery Research Unit, Queen’s University Belfast. Her research focuses on cachexia, cancer and palliative care. She was awarded the Royal College of Nursing, Nurse of the Year Research Award in 2006 for her work into cachexia, a topic on which she has published widely. Previous work into cachexia, has focused on patients and family members experiences of cachexia in advanced cancer. Current work focuses on (1) exploring health care professionals experience, understanding and perception of need of advanced cancer patients with cachexia and their families, and (2) the use of Thalidomide and NSAIDs for cachexia management.
2010-09-14 11:05:50 stephanie@ons Please feel free to ask Joanne your questions related to the article.
2010-09-14 11:06:24 stephanie@ons gailb, were you able to read the article?
2010-09-14 11:06:36 gailb Yes I did
2010-09-14 11:06:46 gailb I found it very informative
2010-09-14 11:07:00 stephanie@ons Welcome to the chat steph199!
2010-09-14 11:07:43 stephanie@ons Welcome to the ONS Virtual Journal Club! We will be discussing Fighting Over Food: Patient and Family Understanding of Cancer Cachexia with Joanne Reid, RGN, Dip, BSc (Hons) Joanne Reid (RGN, PhD) is a Lecturer in Cancer Nursing with the Nursing and midwifery Research Unit, Queen’s University Belfast. Her research focuses on cachexia, cancer and palliative care. She was awarded the Royal College of Nursing, Nurse of the Year Research Award in 2006 for her work into cachexia, a topic on which she has published widely. Previous work into cachexia, has focused on patients and family members experiences of cachexia in advanced cancer. Current work focuses on (1) exploring health care professionals experience, understanding and perception of need of advanced cancer patients with cachexia and their families, and (2) the use of Thalidomide and NSAIDs for cachexia management. Please feel free to ask Joanne your questions related to the article.
2010-09-14 11:08:19 stephanie@ons gailb or steph199 do you have any questions for Joanne related to the article?
2010-09-14 11:09:11 stephanie@ons Joanne - what was the reason that you decided to do this study?
2010-09-14 11:09:59 gailb You had listed 2 questions in the procedure section that you had used. I was wondering what other open ended questions were used in the study
2010-09-14 11:10:25 stephanie@ons Hi Anne, welcome to the Virtual Journal Club chat!
2010-09-14 11:11:20 anne Hi! First time chatter.
2010-09-14 11:12:14 steph199 Why NSAIDS for cachexia?
2010-09-14 11:12:59 joannereid Hi Stephanie, thanks for your question, I had worked in Oncology / Hematology for numerous years and knew that cancer cachexi  was a problem for both patients and their families. However, as a nurse I knew very little research and literature existed on the topic so I decided to under take a study in the area.
2010-09-14 11:13:09 stephanie@ons Anne, I am glad that you decided to join us! Just read the discussion and ask questions as you think of them.
2010-09-14 11:15:21 stephanie@ons Hello heatherb! Welcome to the Virtual Journal Club chat.
2010-09-14 11:15:39 gailb I could relate to your results. Many of the statements by patients and their families have been echoed on my hospital unit.
2010-09-14 11:15:41 heatherb Thank you!
2010-09-14 11:15:41 joannereid Hi Galib, many thanks for your question about open ended question. I developed lines of questioning of each of the participants as they were narrating their experience of cachexia, many of these would have been probes, asking them to tell me a little more about something they had mentioned, but the research process was very inductive and the lines of questioning varied with each participants account.
2010-09-14 11:16:53 joannereid Hi Galib,
2010-09-14 11:17:20 gailb Your number of participants was small. Can you speak to this
2010-09-14 11:17:34 CindySuttle I work in a large outpt infusion area. We treat many pts nearly up to the days of their death, most with cancer cachexia. We do not have an on site social worker. Our nursing staff usually feel overwhelmed in trying to explore the dynamics with caregivers and pts over this issue, providing education and helping support them in understanding this condition, learning to accept the fact that pt is nearing end-of-life. I see much stress in pts and family members over the food and not eating issues as discussed in the article. There is much resistance among caregivers in letting go of this battle ground and of course I understand the implications. Are there any helpful tools in education materials to provided and review with caregivers and families? Should I just contact my hospice nursing resources? Thanks, Cindy Suttle
2010-09-14 11:17:55 joannereid Hi Galib, yes, whenever I present the results staff working with this client group can see how the results are applicable to their clinical area.
2010-09-14 11:21:37 joannereid Hi Galib, the number of participants was small as this was a qualitative study. The aim was to generate depth rather than width of data. This is especially important when considering the in-depth analysis that is associated with IPA, where larger sample sizes of such in-depth interviews would be difficult and extremely time consuming to analyze. Additionally, the sample size was determined by saturation, where interviews kept going until I felt we had a complete understanding of the experience of cachexia.
2010-09-14 11:22:03 stephanie@ons Joanne, there was a question related to NSAIDS for use in cachexia. Can you speak to that?
2010-09-14 11:22:40 gailb Thank you
2010-09-14 11:25:02 joannereid Yes. Inflammation is a key characteristic of cachexia. Previous work in animal models and some small studies have been undertaken for NSAID use in cachexia. Currently, we are completing a systematic review on NSAIDs for the management of cancer cachexia.
2010-09-14 11:25:20 anne Does anyone else find it difficult to pinpoint the time when cachexia and the disease status have reached the state that encouraging food intake becomes pointless?
2010-09-14 11:25:46 joannereid HI Anne,
2010-09-14 11:26:55 joannereid Hi Anne, I think that a lack of a clear definition and clinical guidelines for cachexia also make this problematic
2010-09-14 11:27:53 stephanie@ons Were there things in your practice that changed as a result of this study?
2010-09-14 11:28:59 gailb Is it not also psychological changes as well as physiological changes that make this difficult
2010-09-14 11:31:26 joannereid Yes, most notably the bio-psycho-social impact of cachexia on patients and the fact that it has such a huge impact of both patients and their families made me recognize the role that food plays in this client group
2010-09-14 11:32:40 stephanie@ons Welcome to the chat CindySuttle!!
2010-09-14 11:34:32 joannereid Hi Galib, can you say a little bit more about the psychological changes...
2010-09-14 11:38:00 CindySuttle I work in a large outpt infusion setting. We treat many pts within days of their death, usually because they decline hospice care, and are dealing with cancer cachexia. We see many of the stressors and family dynamics discussed in the article. We do not have on-site social services. Due to many factors, nursing often feel overwhelmed in addressing these issues. We want to educate and support caregivers and pts. Are there good educational materials to provide/review with families and pts? Videos or handouts? Should I just contact our hospice resources? Thanks, Cindy Suttle
2010-09-14 11:38:23 gailb Desire for control, desire to please, helplessness, the dynamics of the family. I believe all this plays a role. It is not just a physical response to illness, it is a mental one also
2010-09-14 11:41:00 joannereid Hi Cindy, are there particular care plans in place for these patients and their families? Macmillan cancer do have a Durham cachexia pack which may be beneficial as it contains information leaflets that can be used with patients and their families.
2010-09-14 11:41:42 joannereid HI Galib,
2010-09-14 11:42:10 gailb It would be interesting to see a study focusing on whether education is effective in helping families and patients deal with this
2010-09-14 11:45:35 joannereid HI Galib, within this study as patients often said they ate to please family members rather than because they were hungry. Additionally, we are completing (in year 2 of 3 years) a study looking at health care professionals and their experience and understanding of managing cachexia. From this we hope to combine the data with that of the first study and test a nurse led educational intervention for cachexia.
2010-09-14 11:47:48 stephanie@ons The entire chat transcript will be posted on the ONS website under the Virtual Journal Club. Welcome to the chat Ateam.
2010-09-14 11:48:55 stephanie@ons As we get to the end of our time are there any final comments or questions that any of you have for Joanne?
2010-09-14 11:50:01 gailb As you say in your article, we as health care professionals are challenged in this area of care. We bring our own emotions with us in the care of the patient.
2010-09-14 11:51:16 anne Thank you, Joanne, for studying this common yet misunderstood problem.
2010-09-14 11:51:29 joannereid HI anne,
2010-09-14 11:51:46 gailb Thank you for your time and this discussion. I felt this research is beneficial to my practice
2010-09-14 11:51:58 CindySuttle Yes. Caregivers and families have such a difficult time letting go of this food battleground, because they feel they are "giving-up and neglecting" the pt. I see such relief with pts, though when they are able to. Is there a middle ground at least for a short time? Cindy
2010-09-14 11:52:25 joannereid Hi Anne, we hope this is only the start of nursing research into this area of cancer care
2010-09-14 11:54:58 Stephanie Keane Is this going to be the chat on Ethical Issues?
2010-09-14 11:55:32 stephanie@ons Stephanie that will be starting in 35 minutes
2010-09-14 11:55:54 Stephanie Keane Thank you.
2010-09-14 11:56:29 joannereid Hi Cindy, I think that with so much work currently focusing on clinical guidelines, defining cachexia and the differing spectrums of cachexia that as health care professionals the evidence base is being built to help us provide care that is responsive this populations' needs.
2010-09-14 11:57:18 CindySuttle Thanks Joanne
2010-09-14 11:57:52 stephanie@ons I would like to thank Joanne for joining us today. Thank you all for coming and your discussion. We will be having a Hot Topic chat in 30 minutes on Ethical issues.
2010-09-14 11:58:32 joannereid Many thanks for your questions; it was a pleasure to chat with you all.