This section includes publications regarding the experiences of
family caregiving for a loved one in pain or at the end of life.
City of Hope Publications
Sun, V., Grant, M., Koczywas, M., Freeman, B., Zachariah, F.,
Fujinami, R., Del Ferraro, C., Uman, G. & Ferrell, B. (2015). Effectiveness
of an interdisciplinary palliative care intervention for family
caregivers in lung cancer. Cancer.
DOI: 10.1002/cncr.29567
Juarez,
G., Branin, J., Rosales, M. (2014). The
cancer caregiving experience of caregivers of Mexican Ancestry.Hispanic
Health Care International, 12(3), 120-129. DOI:
10.1891/1540-4153.12.3.120.
Fujinami, R., Sun, V., Zachariah, F., Uman, G., Grant, M., &
Ferrell, B. (2014). Family
caregivers' distress levels related to quality of life, burden,
and preparedness. Psycho-Oncology, Published
online May 2014. DOI: 10.1002/pon.3562.
Hanson, J., Ferrell, B., & Grant, M.
(2013). Websites
and Resources for Cancer Family Caregivers. J
Adv Pract Oncol 4(4),
269-272
Grant, M., Sun, V., Fujinami, R., Sidhu, R., Otis-Green, S.,
Juarez, G., Klein, L., & Ferrell, B. (2013). Family
caregiver burden, skills preparedness, and quality of life in
non-small cell lung cancer. Oncology
Nursing Forum, 40(4), 337-346.
DOI: 10.1188/13.ONF.337-346.
Ferrell, B. R.,
Hanson, J., & Grant, M. G. (2012). An
overview and evaluation of the oncology family caregiver
project: improving quality of life and quality of care for
oncology family caregivers. Psycho-Oncology, published
online. DOI: 10.1002/pon.3198.
Fujinami, R., Otis-Green, S., Klein, L., Sidhu, R., and Ferrell,
B. (2012). Quality
of life of family caregivers and challenges faced in caring for
patients with lung cancer. Clinical Journal of Oncology
Nursing, 16(6), 615; On-Line: E210-220.
Given, B., &
Grant, M. (2012). Studies
of caregivers of older patients needed. Journal of
Geriatric Oncology, 3(4), 295-298. DOI: 10.1016/j.jgo.2012.07.007.
Grant, M., & Ferrell, B. R. (2012). Oncology
family caregivers: Introduction.
Seminars in Oncology Nursing, 28(4), 203-204. DOI: 10.1016/j.soncn.2012.09.001.
Grant, M., & Ferrell, B. R. (2012). Nursing
role implications for family caregiving. Seminars in
Oncology Nursing, 28(4), 279-282.
DOI: 10.1016/.j.soncn.2012.09.011.
Otis-Green, S., Juarez, G. (2012). Enhancing
the social well-being of family caregivers. Seminars
in Oncology Nursing,
28(4),
246-255.
DOI: 10.1016/j.soncn.2012.09.007.
Wittenberg-Lyles, E., Demiris, G., Oliver, D. P., & Burt, S.
(2011). Reciprocal
suffering: Caregiver concerns during hospice care. Journal
of Pain and Symptom Management, 41(2),
383-393.
DOI: 10.1016/j.jpainsymman.2010.04.026.
Ferrell, B. R.,
Grant, M., Koczywas, M., Hurria, A., Loscalzo, M., Juarez, G.,
Otis-Green, S., Uman, G., & Borneman, T. (2011). Family
caregiver QOL and self-care concerns in lung cancer. CHEST, 140(4_MeetingAbstracts), 1051A-1051A.
DOI:
10.1378/chest.1114776.
Bevans, M.,
Castro, K., Prince, P., Shelburne, N., Prachenko, O., Loscalzo,
M., et al. (2010). An
individualized dyadic problem-solving
education intervention for patients and family caregivers during
allogeneic hematopoietic stem cell transplantation. Cancer
Nursing, 33(2), e24-e32. DOI: 10.1097/NCC.0b013e3181be5e6d.
Cooke, L.,
Gemmill, R., Kravits, K., & Grant, M. (2009). Psychological
issues of stem cell transplant. Seminars
in Oncology Nursing, 25(2), 139-150. DOI:
10.1016/j.soncn.2009.03.008.
Juarez,
G., Ferrell, B. R., Uman, G., Podnos, Y., & Wagman, L. D.
(2008). Distress
and quality of life concerns of family caregivers of patients
undergoing palliative surgery. Cancer
Nursing, 31(1), 2-10.
Muñoz, C.,
Juarez, G., Muñoz, M. L., Portnow, J., Fineman, I., Badie, B.,
et al. (2008). The
quality of life of patients with malignant
gliomas and their caregivers. Social
Work in Health Care, 47(4), 455-478. DOI:
10.1080/00981380802232396.
Morris, M. E.,
Grant, M., & Lynch, J. C. (2007). Patient-reported
family distress among long-term cancer survivors.Cancer
Nursing, 30(1), 1-8.
Borneman, T., Chu, D., Wagman, L., Ferrell, B., Juarez, G.,
McCahill, L., & Uman. G. (2003). Concerns
of family caregivers of patients with cancer facing palliative
surgery for advanced malignancies.
Oncology Nursing Forum, 30(6),
997-1005. DOI: 10.1188/03.ONF.997-1005.
Borneman. T., Stahl, C., Ferrell, B. R., & Smith D. (2002). The
concept of hope in family caregivers of cancer patients at home. Journal
of Hospice and Palliative Nursing, 4(1),
21-33.
Ferrell, B. R.,
Ervin, K., Smith. S., Marek, T., Melancon, C. (2002). Family
perspectives of ovarian cancer. Cancer Practice, 10(6),
269-276. DOI: 10.1046/j.1523-5394.2002.106001.x.
Ferrell, B. R. (2001). Pain
observed: The experience of pain from the family caregiver’s
perspective. Clinics in Geriatric Medicine, 17(3), 595-609.
Recommended Publications
Cure's 2014 Cancer
Guide: Combining science
with humanity, CURE makes cancer understandable.
Principles and Practice of Palliative Care and Supportive
Oncology, 4th Edition, esp. Section II: #54 Caregiving
in the Home
- Berger, A. M., Shuster Jr., J. L.,
Von Roenn, J. H. (2012). MA: Lippincott Williams & Wilkins.
ISBN: 978-1451121278.
What You Need to Know as a Cancer Caregiver
- American
Cancer Society. (2012). American Cancer Society.
Given,
B., Given, C., & Sherwood, P. (2012). The
challenge of quality cancer care for family caregivers. Seminars
in Oncology
Nursing, 28(4), 205-212. DOI: 10.1016/j.soncn.2012.09.002.
Glajchen M. (2012). Physical
well-being of oncology caregivers: An important quality-of-life
domain. Seminars
in Oncology Nursing, 28(4),
226-235. DOI: 10.1016/j.soncn.2012.09.005.
Jayani, R, Hurria, Arti. (2012). Caregivers
of Older Adults With Cancer. Seminars
in Oncology Nursing, 28(4), 221-225.
DOI:10.1016/j.soncn.2012.09.004.
Jones, B. (2012). The
challenge of quality care for family caregivers in pediatric
cancer care. Seminars
in Oncology Nursing, 28(4),
213-220.
DOI: 10.1016/j.soncn.2012.09.003.
Mazanec, P. (2012). Distance
caregiving a parent with cancer. Seminars
in Oncology Nursing, 28(4), 271-278.
DOI: 10.1016/j.soncn.2012.09.010.
Northouse, L, Katapodi, M, Schafenacker, A,
Weiss, D. (2012). The
impact of caregiving on the psychological well-being of family
caregivers and cancer patients. Seminars
in Oncology Nursing, 28(4), 236-245.
DOI: 10.1016/j.soncn.2012.09.006.
Wittenberg-Lyles, E., Demiris, G., Oliver, D. P., & Burt, S.
(2011). Reciprocal
suffering: Caregiver concerns during hospice care. Journal
of Pain and Symptom Management, 41(2),
383-393.
DOI:
10.1016/j.jpainsymman.2010.04.026.
Oxford Textbook of Palliative Social Work
Altilio,
T. & Otis-Green, S. (2011) NY: Oxford
University Press. ISBN: 978-0199739110.
Chapter 21: Caregivers in Palliative Care
Chapter 22: Families and
Family Conferencing
Chapter 26: The Why’s and
Wherefores of Support Groups
Chapter 27: Social Work and
Technology: The Software and Hard Drive of Patient and Family
Care
Chapter 37: Palliative Social Work
with Older Adults and Their Families
Chapter 43: Social Work and Child
Life: A Family’s Journey with Childhood Cancer
Help Wanted: Caregiver
- Pinchot,
L. J. (2011). PA: Oncology Nursing Society. ISBN: 978-1890504977
American Cancer Society Complete Guide to Family Caregiving: The
Essential Guide to Cancer Caregiving at Home, 2nd Ed.
- Bucher, J. A., Houts, P. S., & Ades, T. (Eds). (2011).
Atlanta, GA: American Cancer Society. ISBN: 978-0944235003.
Handbook for Mortals – Guidance
for People Facing Serious Illness,
2nd Edition
- Lynn, J. & Harrold, J. (2011). UK: Oxford University
Press. ISBN: 0199744564.
A Caregiver’s Guide to the Dying Process
- Hospice Foundation of America. (2011).
Northouse, L. L.,
Katapodi, M. C., Song, L., Zhang, L., Mood, D. W. (2010). Interventions
with family caregivers of cancer
patients: Meta-analysis of randomized trials. CA:
A Cancer Journal for Clinicians, 60(5), 317-339.
DOI: 10.3322/caac.20081.
Burns, C. M., LeBlanc, T. W., Abernethy, A., & Currow, D.
(2010). Young
caregivers in the end-of-life setting: Apopulation-based
profile of an emerging group. Journal
of Palliative Medicine, 13(10), 1225-1235. DOI:
10.1089/jpm.2010.0004.
Blum, K., &
Sherman, D. W. (2010). Understanding
the experience of caregivers: A focus on transitions. Seminars
in Oncology Nursing, 26(4), 243-258. DOI:
10.1016/j.soncn.2010.08.005.
Francis, L. E.,
Worthington, J., Kypriotakis, G., Rose, J. H. (2010). Relationship
quality and burden among caregivers forlate-stage cancer
patients. Support
Care Cancer, 18, 1429-1436.
DOI: 10.1007/s00520-009-0765-5.
Northfield, S., & Nebauer, M. (2010). The
caregiving journey for family members or relatives with cancer:
How do they cope? Clinical
Journal of Oncology Nursing, 14(5), 567-577.
DOI: 10.1188/10.CJON.567-577.
Foster, T. L.,
Lafond, D. A., Reggio, C., & Hinds, P. S. (2010). Pediatric
palliative care in childhood cancer nursing: From diagnosis to
cure or end of life. Seminars
in Oncology Nursing, 26(4), 205-221. DOI:
10.1016/j.soncn.2010.08.003.
Oliver, D. P.,
Demiris, G., Wittenberg-Lyles, E., Porock, D., Collier, J., &
Arthur, A. (2010). Caregiver
participation in hospice interdisciplinary team meetings via
videophone technology: A pilot study to improve pain management.American
Journal of Hospice and Palliative Medicine, 27(7), 465-473.
DOI: 10.1177/1049909110362402.
Reflections of a Loving Partner: Caregiving at the End of Life
- Martin, C. A. (2010). Naples, FL: Quality of Life Publishing
Co. ISBN: 978-0981621937.
Dying with Comfort: Family Illness Narratives and Early
Palliative Care
- Wittenberg-Lyles, E., Goldsmith, J., Ragan, S. L., &
Sanchez-Reilly, S. (2010). NJ: Hampton Press.
ISBN: 1572739843.
The Survivorship Net: A Parable for the Family, Friends, and
Caregivers of People with Cancer
- Owens,
J. Cass, B. (2010). GA: American Cancer Society. ISBN:
978-1604430189.
Passages in Caregiving: Turning Chaos into Confidence
- Sheehy,
G. (2010). NY: HarperCollins Publishers. ISBN: 978-0061661204.
Oxford Textbook of
Palliative Nursing, 4th Edition
- Ferrell, B. R., Coyle, N., & Paice, J., (2015). NY:
Oxford University Press. ISBN: 9780199332342
Chapter 4: Principles of Patient and Family
Assessment
Chapter 30: Supporting Families in Palliative
Care
The
Caregiver’s Path to Compassionate Decision Making: Making
Choices for Those Who Can’t
- Kind,
V. (2010). TX: Greenleaf Book Group. ISBN: 978-1608320417.
Cancer Journey: A Caregiver’s View From the Passenger Seat
- Siegfried,
C. Z. (2010). WA: Pleasant Word. ISBN: 978-1414115498.
Harden, J., Falahee, M., Bickes, J., Schafenacker, A., Walker,
J., Mood, D., & Northouse, L. (2009). Factors
associated with prostate
cancer patients’ and their spouses’ satisfaction with a
family-based intervention. Cancer
Nursing, 32(6), 482-492. DOI: 10.1097/NCC.0b013e3181b311e9.
Hinds, P. S., Oakes, L. L., Hicks, J., Powell, B., Srivastava,
D. K., Spunt, S. L., et al. (2009). “Trying
to be a good parent” as defined
by interviews with parents who made phase I, terminal care, and
resuscitation decisions for their children. Journal
of Clinical Oncology, 27(35), 5979-5985. DOI:
10.1200/JCO.2008.20.0204.
Bakas, T., Farran, C. J., Austin, J. K., Given, B. A., Johnson,
E. A., & Williams, L. S. (2009). Content
validity and satisfaction with
a stroke caregiver intervention program. Journal
of Nursing Scholarship, 41(4), 368-375.
DOI: 10.1111/j.1547-5069.2009.01282.x.
Bradley, S. E., Sherwood, P. R., Kuo, J., Dammerer, C. M.,
Gettig, E. A., Ren, D., et al. (2009). Perceptions
of economic hardship and emotional health in a pilot sample of
family caregivers. Journal
of Neurooncology, 93(3), 333-342.
DOI: 10.1007/s11060-008-9778-z.
Family Carers in Palliative Care: A Guide for Health and Social
Care Professionals
- Hudson, P. & Payne, S. (2009). NY: Oxford University Press.
ISBN: 0199216908
Caregiving in the U.S.
- Pew Research Internet Project (2012).
Harden, J., Northouse, L. Cimprich, B., Pohl, J. M., Liang, J.,
& Kershaw, T. (2008). The
influence of developmental life stage
on quality of life in survivors of prostate cancer and their
partners. Journal
of Cancer Survivorship, 2(2), 84-94.
DOI: 10.1007/s11764-008-0048-z.
Pritchard, M., Burghen, E., Srivastava, D. K., Okuma, J.,
Anderson, L, Powell, B., et al. (2008). Cancer-related
symptoms most
concerning to parents during the last week and last day of their
child’s life. Pediatrics,
121, e1301-e1310.
DOI: 10.1542/peds.2007-2681.
Honea, N.
J., Brintnall, R., Given, B., Sherwood, P., Colao, D. B.,
Somers, S. C., & Northouse, L. L. (2008). Putting
evidence into
practice: Nursing assessment and interventions to reduce family
caregiver strain and burden. Clinical
Journal of Oncology Nursing, 12(3), 507-516.
DOI: 10.1188/08.CJON.507-516.
Supporting Family Caregivers
- American
Journal of Nursing, (2008). 108(9-Suppl). Entire issue devoted
to family caregiver issues.
Cancer Caregiving A-to-Z: An At-Home Guide for Patients and
Families
- American
Cancer Society (2008). GA: American Cancer Society. ISBN:
978-0944235928.
Assuring Healthy Caregivers, A Public Health Approach to
Translating Research into Practice: The RE-AIM Framework
- Centers for Disease Control & Prevention. (2008).
Kwak, J.,
Salmon, J. R., Acquaviva, K. D., Brandt, K., & Egan, K. A.
(2007). Benefits
of training family caregivers on experiences of closure during
end-of-life care. Journal
of Pain and Symptom Management, 33(4), 434-445.
DOI: 10.1016/j.jpainsymman.2006.11.006.
Doorenbos, A. Z., Given, B., Given, C. W., Wyatt, G., Gift, A.,
Ruhbar, M., Jeon, S. (2007). The
influence of end-of-life
cancer care on caregivers. Research
in Nursing & Health, 30, 270-281.
DOI: 10.1002/nur.20217.
Northouse, L. L., Mood, D. W., Schafenacker, A., Montie, J. E.,
Sandler, H. M., Forman, J. D., et al. (2007).Randomized clinical
trial of a family intervention for prostate cancer patients and
their spouses. CANCER,
110(12), 2809-2818.
DOI: 10.1002/cncr.23114.
A Family Caregiver Speaks Up: It Doesn’t Have to Be This Hard
- Mintz,
S. G. (2007). VA: Capital Books, Inc. ISBN: 978-1933102467.
Sherwood, P. R., Given, B. A., Given C. W., Schiffman, R. F.,
Murman, D. L., Lovely, M., et al. (2006). Predictors
of distress in
caregivers of persons with a primary malignant brain tumor. Research
in Nursing & Health, 29, 105-120.
DOI: 10.1002/nur.20116.
Schumacher, K. L., Beidler, S. M., Beeber, A. S., Gambino, P.
(2006). A
transactional model of cancer family caregiving skill. Advances
in Nursing Science, 29(3), 271-286.
Kim,
Y., Loscalzo, M. J., Wellisch, D. K., & Spillers, R. L. (2006).
Gender differences in caregiving stress among caregivers of
cancer survivors. Psycho-Oncology,
15, 1086-1092. DOI: 10.1002/pon.1049.
Lewis, F. M. (2006). The
effects of cancer survivorship on families and caregivers. American
Journal of Nursing, 106(3-Suppl), 20-21, 23-25.
Given, B. & Sherwood, P. R. (2006). Family
care for the older person with cancer. Seminars
in Oncology Nursing, 22(1), 43-50.
DOI: 10.1016/j.soncn.2005.10.006.
Given, B., Given, C. W., Sirorskii, A., Jeon, S., Sherwood, P.,
& Rahbar, M. (2006). The
impact of providing symptom management assistance on caregiver
reaction: Results of a randomized trial. Journal
of Pain and Symptom Management, 32(5), 433-443.
DOI: 10.1016/j.jpainsymman.2006.05.019.
The Emotional Survival Guide for Caregivers: Looking After
Yourself and Your Family While Helping an Aging Parent
- Jacobs,
B. J. (2006). NY: The Guilford Press. ISBN: 978-1572307292.
Northouse, L. L.
(2005). Helping
families of patients with cancer. Oncology
Nursing Forum, 32(4), 743-750.
DOI: 10.1188/05.ONF.743-750.
Glajchen, M.,
Kornblith, A., Homel, P., Fraidin, L, Mauskop, A., & Portenoy,
R. K. (2005). Development
of a brief assessment scale for caregivers of the medically ill. Journal
of Pain and Symptom Management, 29(3), 245-254.
DOI: 10.1016/j.jpainsymman.2004.06.017.
Sherwood, P. R.,
Given, C. W., Given, B. A., von Eye, A. (2005). Caregiver
burden and depressive symptoms: Analysis of common
outcomes in caregivers of elderly patients. Journal
of Aging and Health, 17(2), 125-147.
DOI: 10.1177/0898264304274179.
Salmon, J. R.,
Kwak, J., Acquaviva, K. D., Egan, K. A., Brandt, K. (2005). Validation
of the caregiving at life’s end questionnaire. American
Journal of Hospice & Palliative Medicine, 22(3), 188-194.
DOI: 10.1177/104990910502200307.
When the Focus Is on Care: Palliative Care and Cancer
- Foley,
K. M., Back, A., Bruera, E., Coyle, N., Loscalzo, M. J.,
Shuster, J. L., Teschendorf, B., & von Roenn, J. H. (Eds.)
(2004). GA: American Cancer Society. ISBN: 978-0944235539.
Breast Cancer Husband How to Help Your Wife (and Yourself)
Through Diagnosis, Treatment, and Beyond
- Silver, M. (2004). PA: Rodale Inc. ISBN: 978-1579548339.
Northouse, L.,
Kershaw, T., Mood, D., Schafenacker, A. (2004). Effects
of a family intervention on the quality of life of women with
recurrent breast cancer and their family caregivers. Psycho-Oncology,
14, 478-491. DOI: 10.1002/pon.871.
Glajchen, M.
(2004). The
emerging role and needs of family caregivers in cancer care. Journal
of Supportive Oncology , 2(2), 145-155.
Williams, R.,
Hinds, P. S., Ke, W., & Hu, X. J. (2004). A
comparison of calorie and protein intake in hospitalized
pediatric oncology
patients dining with a caregiver versus patients dining alone: A
randomized, prospective clinical trial. Journal
of Pediatric Oncology Nursing, 21(4), 223-232. DOI:
10.1177/1043454204265861.
Haley, W. E. (2003). Family
caregivers of elderly patients with cancer: Understanding and
minimizing the burdens of care. Supportive
Oncology, 1(2, Supp.), 25-29.
Caregiving and Loss: Family Needs, Professional Responses
- Hospice
Foundation of America
Caregiving: The Spiritual Journey of Love, Loss, and Renewal
- McLeod,
B. W. (2000). NY: John Wiley & Sons, Inc. ISBN: 978-0471392170.
Educational Materials/Curriculum
And Thou Shalt Honor
- A
PBS Series, forums and support for caregivers, patients, and
health care professionals.
APA Caregiver Briefcase - American
Psychological Association
- This
Briefcase provides psychologists at all levels of
training and experience with information about:
how caregiving affects all of us; facts about family
caregiving; common caregiving problems; how to
identify and reach caregivers;
roles psychologists
have in working with family caregivers; assessment
tools and effective interventions;
conducting
caregiver research; educating and teaching about
caregiving; advocating for family caregivers;
resources for diverse populations and age groups.
Averting the Caregiving Crisis: Why We Must Act Now
- Rosalynn Carter Institute for Caregiving
Family Caregivers in Cancer: Roles and Challenges
- National
Cancer Institute
Fast Facts and Concepts - Palliative Care Network of Wisconsin (PCNOW)
Over 200 Fast Facts, a PDA version
and a Discussion
Blog
- Asking about Cultural Beliefs in Palliative Care #216
- Broaching the Topic of a Palliative Care Consultation with Patients and Families, 2nd Edition #42
- Grief in Children and Developmental Concepts of Death #138
- Helping Surrogates Make Decisions #226
- Hospice Referral: Moving from Hospital to Home #139
- Implementation of a Family Presence During Resuscitation Protocol #233
- Information for Patients and Families About Ventilator Withdrawal, 2nd Edition #35
- Preparing for the Family Meeting #222
- Responding to Emotion in Family Meetings #224
- Teaching the Family What to Expect When the Patient is Dying #149
- The Family Meeting: Causes of Conflict #225
- The Family Meeting: End of Life Goal Setting and Future Planning #227
Help for Cancer Caregivers
- Help for Cancer Caregivers, a new resource, helps
cancer caregivers manage their own health and
wellness needs.
It is an interactive, personalized web tool that gives
the right information at the right time to help
lessen stress throughout
the caregiving experience.
Home
Alone: Family Caregivers Providing Complex Chronic Care
Reinhard, S., Levine, C., & Samis,
S. (2012). AARP and United Hospital Fund.
Navigating Cancer Caregiver Survey
Navigating Cancer surveyed 326 cancer caregivers
through an online survey in October 2010. The survey
results revealed significant emotional, financial and physical
strain on the cancer caregiver community, as well as a lack of
comprehensive resources to support their needs.
Orientation
to Caregiving: A Handbook for Family Caregivers of Patients with
Serious Illness
A handbook
on what to expect as a family caregiver. This handbook is a
product of the Caregivers Project, a
collaboration between the UCSF Osher Center for Integrative
Medicine & UCSF Department of Neurological
Surgery.
Other Organizational Links
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