Monday, October 24, 2016

Palliative Care for Caregiver Distress

by Sujin Ann-Yi

According to the Caregiving in the US 2015 research report (PDF) conducted by the National Alliance for Caregiving (NAC) and American Association of Retired Persons (AARP), 43.5 million adults in the US have provided uncompensated care to an adult or a child in the past year. The same report found caregivers provide on average 24.4 hours per week of support to their family member. Spouses were found to provide on average 44.6 hours per week and almost 25% of caregivers provide 41 hours per week.

Caregivers refers to family members who provide ongoing continuous care, typically without any compensation, for those with serious health issues such as cancer. Family caregivers provide significant support to patients which includes but is not limited to physical, psychological, spiritual, and emotional support as well as communicating with health providers, treatment monitoring, administering drugs and medical treatments, and advocating for their loved ones (Caregiving in the U.S., 2015).

Caregiver distress results when caregivers have overwhelming demands and unmet needs, coupled with other stressors such as feeling isolated, feeling burdened, financial strains, negative emotions, and work loss. A positive correlation has been reported between cancer patients’ and their respective caregivers’ distress (Hodges, Humphries, Macfarlane, 2005). Caregivers are at risk in developing both depression and anxiety as well as consequences to their own health (Nipp, El-Jawahri, Fishbein, et al., 2016; Palos, Mendoza, Liao, et al., 2011). Caregiver distress is associated with: being female, younger age, being the spouse of patients, lower social economic status, employed, and lacking personal and social support (Kim, Given, 2008).

In the spirit of family centered care, recent attention has focused on directly identifying and providing support for caregivers in addition to patients as part of standard care. Palliative care professionals have improved symptom management and quality of life for patients and have intuitively included patient’s families and caregivers. Palliative care has been associated with improved caregiver well-being, family satisfaction, and physical and psychological symptom management for patients and caregivers. Early palliative care with newly diagnosed lung and GI cancers showed improved depression and quality of life in caregivers (El-Jawahri, Jackson, Greer, et. al., 2016).

Please join me @sujinannyi for our #hpm tweetchat to further discuss how palliative care professionals can play an instrumental role in identifying and addressing caregiver distress.

T1: Do your respective organizations currently either formally or informally assess for caregiver distress? If so, what is the process and what tools do you use if any?
T2: What services or resources are offered for caregivers at your respective organizations?
T3: What are some barriers for providing intervention and support for caregivers in your respective organizations?

What: #hpm (hospice and palliative med/care) chat on Twitter
When: Wed 10/26/2016 - 9p ET/ 6p PT
Host: Sujin Ann-Yi, PhD @sujinannyi

 and go to www.hpmchat.org for up to date info.

If you are new to Tweetchats, you do not need a Twitter account to follow along. Try using the search function on Twitter. If you do have a Twitter account, we recommend using tchat.io for ease of following. You can also check out the new site dedicated to #hpm chat - www.hpmchat.org

For more on past tweetchats, see our archive here.

Sujin Ann-Yi, LMFT, PhD is a palliative clinical psychologist from MD Anderson Cancer Center and is hosting her first #hpm chat.

References

Caregiving in the U.S. 2015 (2015). Retrieved from The National Alliance for Caregiving and the AARP Public Policy Institute websites
http://www.caregiving.org/caregiving2015/
http://www.aarp.org/content/dam/aarp/ppi/2015/caregiving-in-the-united-states-2015-report-revised.pdf

El-Jawahri, A., Jackson, V.A., Greer, J.A., Pirl, W.F., Park, E.R., Back, A., Muzikansky,A., Kamdar, M., Rinadldi, S., Jacobson, J., Fishbein, J., Eusebio, J., VanDusen, H., Nipp, R.D., Ryan, D.P., Temel, J.S. (2016). Effect of early integrated palliative care on family caregivers outcomes for patients with gastrointestinal and lung cancer. Journal of Clinical Oncology, 2016 Palliative Care in Oncology Symposium, 34, 234.

Hodges, L. J., Humphris, G.M., Macfarlane, G. (2005). A meta-analytic investigation of the relationship between the psychological distress of cancer patients and their carers. Social Science & Medicine, 60, 1-12.

Kim, Y. and Given, B.A. (2008). Quality of life of family caregivers of cancer survivors. Cancer, 112, 2556-2568.

Nipp, R.D., El-Jawahri, A., Fishbein, J.N., Gallagher, E.R., Stagl, J.M., Park, E.R., Jackson, V.A., Pirl, W.F., Greer, J.A.,Temel, J.S. (2016). Factors associated with depression and anxiety symptoms in family caregivers of patients with incurable cancer. Annals of Oncology, 27, 1607-1612.

Palos, G.R., Mendoza, T.R., Liao, K.P., Anderson, K.O., Garcia-Gonzalez, A., Hahn, K., Nazario, A., Ramondetta, L.M., Valero, V., Lynch, G.R., Jibaja-Weiss, M.L., Cleeland, C.S. (2011).Caregiver symptom burden: the risk of caring for an underserviced patient with advanced cancer. Cancer, 117, 1070-1079.

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