Changing Roles and Responsibilities for Caregivers - free telephone workshop NCI June 19th

 The  Tenth Annual Cancer Survivorship Series:
Living With, Through & Beyond Cancer 

On Tuesday, June 19th, CancerCare, in collaboration with the National Cancer Institute: Office of Cancer Survivorship and Office of Communications and Education, LIVESTRONG, American Cancer Society, Intercultural Cancer Council, Living Beyond Breast Cancer and National Coalition for Cancer Survivorship, will present a free, telephone workshop entitled: Changing Roles and Responsibilities for Caregivers. You can listen to this program on the telephone or via live streaming through the internet.

This workshop is the third of a four-part series.  This free series is made possible by support from the National Cancer Institute and LIVESTRONG and offers cancer survivors, their families, friends and health care professionals practical information to help them cope with concerns that arise after treatment ends.   

The faculty for this program includes:

• Suzanne Martz-Dones, RN, MA, CCRN, NE-BC, Caregiver Perspective, Administrative Nurse Manager, Mount Sinai Hospital

• Barbara A. Given, PhD, RN, FAAN, University Distinguished Professor, Associate Dean for Research and Doctoral Program, College of Nursing, Michigan State University

• Stewart B. Fleishman, MD, Founding Director, Cancer Supportive Services, Continuum Cancer Centers of New York: Beth Israel & St. Luke's-Roosevelt

The fourth and final workshop of the series - Managing Post-Treatment Neuropathy - will take place on July 17th.  

These workshops are free – no phone charges apply.  However, pre-registration is required.  To register, and for more information, simply go to the CancerCare website, www.cancercare.org/connect.
If you missed Parts I or II of the series, they are available as podcasts, 24 hours a day, 7 days a week: 

Part I: Using Mind/Body Techniques to Cope with the Stress of Survivorship

Part II: Recapturing Joy and Finding Meaning
We are very excited to offer this telephone workshop series to you. We hope that you will join us and that you will share this information with your patients and colleagues.  

abstract: Psychosocial Care for Family Caregivers of Patients With Cancer [Review Articles]

Psychosocial Care for Family Caregivers of Patients With Cancer [Review Articles]:

Purpose
To understand family caregivers' needs for better preparation and care, this state-of-the-science review examines the effect of caregiving on the health and well-being of caregivers, the efficacy of research-tested interventions on patient and caregiver outcomes, implications of the research on policy and practice, and recommendations for practice and future research.

Methods
We reviewed research that described the multiple effects of cancer on caregivers' well-being. Five meta-analyses were analyzed to determine the effect of interventions with caregivers on patient and caregiver outcomes. In addition, we reviewed legislation such as the Affordable Care Act and the Family Leave Act along with current primary care practice to determine whether family caregivers' needs have been addressed.

Karolinska Institutet - Complexities in caregiving at the end of life (re: PLOS study)

"...The study indicates three key areas that are sometimes overlooked in palliative care, namely bodily care and contact, a secure, aesthetic and comfortable environment, and death-related rituals.
“The caregivers described different kinds of communication with patients and relatives, from the giving of advice to communication through non-verbal, physical contact,” says Dr Lindqvist. “Rituals surrounding dying and death were not only spiritual or religious but also more subtly existential, legal and professional. One field that has been largely ignored by research is sensory aspects of the caring environment, both at home and in in-patient settings.”
The study also shows that non-pharmacological palliative care is based on a number of complex and sophisticated decisions on the part of the caregiver regarding not only what can be done or should not be done, but also when, how and why to whom. This differs from the traditional understanding of non-pharmacological palliative care as ‘basic’...."

Canadian Health Reference Guide - Invisible Healthcare System Taking Toll on Canadian Caregivers

Cochrane Evidence Updates - Information interventions for orienting patients and their carers to cancer care facilities (including professional commentaries)

AUTHORS' CONCLUSIONS:
This review has demonstrated the feasibility and some potential benefits of orientation interventions. There was a low level of evidence suggesting that orientation interventions can reduce distress in patients. However, most of the other outcomes remain inconclusive (patient knowledge recall/ satisfaction). The majority of studies were subject to high risk of bias, and were likely to be insufficiently powered. Further well conducted and powered RCTs are required to provide evidence for determining the most appropriate intensity, nature, mode and resources for such interventions. Patient and carer-focused outcomes should be included.

Caring for an Ill Spouse, and for Other Caregivers - NYTimes.com

Blog: Our Cancer — "It’s NOT Easy to Go There.." Laurie Singer Sievers

"....What about all of us who are carrying around the baggage of the disease? It's real and if you ask me, it's an epidemic."

Caregiver Consultation 2010 Survey - Alberta Caregivers Association (see definition of 'caregiver')

The Alberta Caregivers Association is conducting a survey of caregivers throughout Alberta to learn about the issues they face. The main focus of the survey will be to capture the real experiences of caregivers so we can better understand the various challenges, barriers, and problems that exist from their points of view.



You can participate in the survey as a caregiver, a professional/service provider, a group of caregivers, or a member of the general public.

Before you begin the survey we need to know who you are responding as:

A caregiver is defined as a family member or friend who provides unpaid care for a loved one. This can be for someone in your home, in their own home, in an assisted living facility, in a group home, in a retirement community or otherwise. Common care tasks could include helping with chores, managing finances, arranging services or just visiting to see how they doing.

An example of a group of caregivers is a caregiver support group offered by an organization.

A professional or service provider is anyone who is paid to work with caregivers and/or the people who need caregiving.

Quality of life in a heterogeneous sample of caregivers of cancer patients: an in-depth interview study - European Journal of Cancer Care - abstract

"This study focuses on the caregiver's perspective and advocates the development of a short QoL core questionnaire. Additional modules should be cancer-specific or dedicated to specifics of the caregiver-patient relationship."

Care for Caregivers: Groups Offer a Unique Support for Caregivers - Cancerwise | Cancer blog from MD Anderson Cancer Center

While friends and family may try to offer assistance and support, a feeling of "you don't know what it's like for me" is both common and reasonable.

Caregiving: Tips for long-distance caregivers - MayoClinic.com

Cancer Caregivers Share Patient Stresses

'The worst thing about hospice is that they talk about death': contrasting hospice decisions and experience among immigrant Central and South American Latinos with US-born White, non-Latino cancer caregivers

Abstract:
Hospice care is promoted as a model for improving end of life care and decreasing burden on caregivers. However, hospice use is low in Latinos and little is known about how Latinos make hospice decisions and experience hospice once enrolled. Qualitative methods were used in this study to conduct in-depth interviews and focus groups with 15 Latino bereaved hospice family caregivers and 15 White non-Latino bereaved hospice family caregivers to describe hospice experiences and evaluate whether cultural factors affected the experience. Differences in decision-making and caregiving experience were identified that were influenced by culture. For example, cultural values of denial, secrecy about prognosis and a collective, family-centered system influenced hospice decisions and experience in Latinos but not non-Latinos. This study identifies a significant dilemma: that is, how to discuss hospice with a patient and family who prefer not to discuss a terminal prognosis. Future research is needed to extend these preliminary results; such results may be useful for designing interventions to improve end of life care and caregiving in Latinos.

The stress process in palliative cancer care: a qualitative study on informal caregiving and its implication for the delivery of care

Impact of caregivers’ unmet needs for supportive care on quality of terminal cancer care delivered and caregiver’s workforce performance

Conclusions
Caregivers’ unmet needs negatively affected both the quality of EOL care they delivered and their workplace performance. More investment in caregiver support and public policies that meet caregiver needs are needed, and hospice use should be encouraged.

Dying at home: community nurses' views on the impact of informal carers on cancer patients' place of death European Journal of Cancer Care

Note: abstract; one of the few articles which challenges mainstream research discussing the issues of dying at home and the wishes of patients/caregiver.