The caregiver perspective: Advancing the understanding of cancer caregiving in the palliative care setting.

2018 ◽  
Vol 36 (34_suppl) ◽  
pp. 17-17 ◽  
Author(s):  
Martha Raymond ◽  
Margaret-Ann Simonetta
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Focus Groups ◽  
Care Setting ◽  
Unmet Needs ◽  
Supportive Services ◽  
Caregiver Support ◽  
Palliative Care Setting ◽  
Cancer Caregivers

17 Background: 2018 data from the National Cancer Institute’s Surveillance, Epidemiology & End Results (SEER) Program estimates there are 15.5 million cancer survivors in the U.S. Throughout the care continuum, cancer caregivers provide invaluable support which greatly impacts and improves patient quality of life. In the palliative care setting caregiver support is vitally important, but many caregivers struggle to take care of their own needs and are not aware of supportive services. Our study explores the unmet needs of cancer caregivers in the palliative care setting. Methods: Over a two-year time period (2015-2017), our professional facilitator met with cancer caregivers in 32 states hosting nationwide focus groups. Primary goals were reaching caregivers in rural, urban, medically underserved, and community oncology settings to gain perspective from diverse populations. Focus groups were held in person and online via facetime conferencing. Results: 778 caregivers (42% male, 58% female) participated. 92% of caregivers did not feel comfortable defining palliative care nor did they realize the various supportive elements palliative care provides. 76% were extremely anxious during care transitions; 71% feel overwhelmed with daily caregiving tasks; 69% want to help make end of life decisions including advance directives in partnership with their loved one, but did not feel equipped to make tough decisions; 64% report lack of patient/caregiver centered communication with their healthcare team, including guidance on adverse effects and training for medical hands-on tasks. Conclusions: Caregivers in the palliative care setting need additional supportive services, effective interventions, and educational programs to meet their unmet needs. With additional support and awareness, enhanced quality of life for both caregiver and patient is possible. Our conversations with caregivers will continue as we increase palliative care awareness, collaborate with partners, develop meaningful programs, and expand our outreach to help meet the needs of caregivers in the palliative care setting.

scholarly journals Diet and Nutrition in Cancer Survivorship and Palliative Care

2013 ◽  
Vol 2013 ◽  
pp. 1-12 ◽  
Author(s):  
Anthony J. Bazzan ◽  
Andrew B. Newberg ◽  
William C. Cho ◽  
Daniel A. Monti
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Cancer Survivorship ◽  
End Of Life Care ◽  
Care Setting ◽  
Cancer Recurrence ◽  
Current Data ◽  
Wide Range ◽  
Palliative Care Setting

The primary goal of palliative cancer care is typically to relieve suffering and improve quality of life. Most approaches to diet in this setting have focused only on eating as many calories as possible to avoid cachexia. However, as the concept of palliative care has evolved to include all aspects of cancer survivorship and not just end of life care, there is an increasing need to thoughtfully consider diet and nutrition approaches that can impact not only quality of life but overall health outcomes and perhaps even positively affect cancer recurrence and progression. In this regard, there has been a recent emphasis in the literature on nutrition and cancer as an important factor in both quality of life and in the pathophysiology of cancer. Hence, the primary purpose of this paper is to review the current data on diet and nutrition as it pertains to a wide range of cancer patients in the palliative care setting.

scholarly journals Brief Engagement and Acceptance Coaching for Hospice Settings (the BEACHeS study): results from a Phase I study of acceptability and initial effectiveness in people with non-curative cancer

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Nicholas J. Hulbert-Williams ◽  
Sabrina F. Norwood ◽  
David Gillanders ◽  
Anne M. Finucane ◽  
Juliet Spiller ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Focus Groups ◽  
Advanced Cancer ◽  
Psychological Intervention ◽  
Qualitative Interviews ◽  
Future Research ◽  
Study Results ◽  
Palliative Care Setting

Abstract Objectives Transitioning into palliative care is psychologically demanding for people with advanced cancer, and there is a need for acceptable and effective interventions to support this. We aimed to develop and pilot test a brief Acceptance and Commitment Therapy (ACT) based intervention to improve quality of life and distress. Methods Our mixed-method design included: (i) quantitative effectiveness testing using Single Case Experimental Design (SCED), (ii) qualitative interviews with participants, and (iii) focus groups with hospice staff. The five-session, in-person intervention was delivered to 10 participants; five completed at least 80%. Results At baseline, participants reported poor quality of life but low distress. Most experienced substantial physical health deterioration during the study. SCED analysis methods did not show conclusively significant effects, but there was some indication that outcome improvement followed changes in expected intervention processes variables. Quantitative and qualitative data together demonstrates acceptability, perceived effectiveness and safety of the intervention. Qualitative interviews and focus groups were also used to gain feedback on intervention content and to make design recommendations to maximise success of later feasibility trials. Conclusions This study adds to the growing evidence base for ACT in people with advanced cancer. A number of potential intervention mechanisms, for example a distress-buffering hypothesis, are raised by our data and these should be addressed in future research using randomised controlled trial designs. Our methodological recommendations—including recruiting non-cancer diagnoses, and earlier in the treatment trajectory—likely apply more broadly to the delivery of psychological intervention in the palliative care setting. This study was pre-registered on the Open Science Framework (Ref: 46,033) and retrospectively registered on the ISRCTN registry (Ref: ISRCTN12084782).

scholarly journals How did Music Therapy Contribute to Patients’ Quality of Life in a Hospice and Palliative Care Setting?

2021 ◽  
Author(s):  
◽  
Ah Young Jeong
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Music Therapy ◽  
Care Setting ◽  
Research Question ◽  
Palliative Care Setting ◽  
Hospice Patients ◽  
Hospice And Palliative Care ◽  
Affective Awareness

<p>This qualitative research explores how I, as a student music therapist, contributed to patients’ quality of life (QoL) in a hospice and palliative care setting. The study principally focuses on the different music therapy and personal approaches that I used and which seemed to contribute to patients’ QoL. The research was carried out at a hospice in New Zealand and I had sessions with in-patients, day hospice patients and out-patients who were all at varying stages of illness.  In this research, secondary analysis of data is used to answer my research question. The data used in this study are the clinical notes and reflexive journals that I gathered while working with 67 patients in a total of 194 sessions. Because QoL is a broad complex concept, I have chosen to use a conceptual framework suggested by music therapy theorist Even Ruud (1997) to put a structure to answering my research question. In thematic analysis, the data were both deductively and inductively analysed.  The findings describe music therapy methods, activities, strategies and techniques as well as personal approaches I employed which seemed to promote a sense of affective awareness, agency, belonging and meaning, and coherence of life in patients receiving hospice and palliative care. This study indicated that Ruud’s (1997) framework has particular meaning in the context of hospice palliative care and that the framework could be extended for use in hospice and palliative care. The clinical vignette further provide an exploratory view of the use of music therapy techniques and the quality of relationships, and how both of these contributed to increasing a patient’s QoL.  In the discussion, the findings are further explained in the light of other studies. In particular, ‘being with’ patients underpinned all of the musical and personal approaches that I made in working with hospice patients and this is evaluated as an overarching point. Although Ruud’s (1997) idea of QoL was a good fit in my study, the study may suggests how his model could address ways in which affective awareness, agency, belonging and meaning and coherence of life can be supported with various music and personal approaches in the context of music therapy in hospice and palliative care settings.</p>

Caregiving near the end of life: Unmet needs and potential solutions

2003 ◽  
Vol 1 (3) ◽  
pp. 247-259 ◽  
Author(s):  
PATRICIA A. MANGAN, ◽  
KATHRYN L. TAYLOR ◽  
K. ROBIN YABROFF ◽  
DAVID A. FLEMING ◽  
JANE M. INGHAM
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Focus Groups ◽  
End Of Life ◽  
Unmet Needs ◽  
Metastatic Cancer ◽  
Well Being ◽  
Care Quality ◽  
Comprehensive Cancer Center

Objective:A key aspect of the role of clinicians caring for patients in the setting of advanced illness focuses on attending to the needs of informal caregivers during the end-of-life period. The purpose of this study was twofold: (1) to complement and enrich existing quantitative findings regarding caregiver burden near the end of life, and (2) to identify potential solutions to caregivers' unmet needs in an effort to assist clinicians in the development of clinical interventions.Methods:This qualitative study, using focus groups and content analysis of transcripts, was conducted in a comprehensive cancer center in Washington, DC. Seven focus groups were held: three with recently bereaved caregivers and four with active caregivers of patients with metastatic cancer and an expected survival of 6 to 12 months.Results:Data were stratified into two broad categories: (1) general problems and (2) behaviors/activities that were helpful/would have been helpful in alleviating these problems. Within each of these two categories, five subcategories emerged: medical care (including provision of information, coordination of care, bedside manner, satisfaction with care), quality of life (including well-being, role adjustments), help from others (including practical assistance, social support), positives of caregiving, and unsolicited themes (including job flexibility, impact of the disease on the family, informational needs, relationship with patient).Significance of results:Results suggest caregivers may benefit from more information about patient prognosis and hospice, attention to quality-of-life issues, and enhanced, direct communication with clinicians. Although information of this nature is likely to be known to palliative care clinicians, the specific details and verbal insights provided by caregivers give an important voice to existing quantitative data and may provide more detailed information to assist palliative care clinicians seeking to develop interventions to meet caregiver needs during the period near the end of life.

scholarly journals How did Music Therapy Contribute to Patients’ Quality of Life in a Hospice and Palliative Care Setting?

2021 ◽  
Author(s):  
◽  
Ah Young Jeong
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Music Therapy ◽  
Care Setting ◽  
Research Question ◽  
Palliative Care Setting ◽  
Hospice Patients ◽  
Hospice And Palliative Care ◽  
Affective Awareness

<p>This qualitative research explores how I, as a student music therapist, contributed to patients’ quality of life (QoL) in a hospice and palliative care setting. The study principally focuses on the different music therapy and personal approaches that I used and which seemed to contribute to patients’ QoL. The research was carried out at a hospice in New Zealand and I had sessions with in-patients, day hospice patients and out-patients who were all at varying stages of illness.  In this research, secondary analysis of data is used to answer my research question. The data used in this study are the clinical notes and reflexive journals that I gathered while working with 67 patients in a total of 194 sessions. Because QoL is a broad complex concept, I have chosen to use a conceptual framework suggested by music therapy theorist Even Ruud (1997) to put a structure to answering my research question. In thematic analysis, the data were both deductively and inductively analysed.  The findings describe music therapy methods, activities, strategies and techniques as well as personal approaches I employed which seemed to promote a sense of affective awareness, agency, belonging and meaning, and coherence of life in patients receiving hospice and palliative care. This study indicated that Ruud’s (1997) framework has particular meaning in the context of hospice palliative care and that the framework could be extended for use in hospice and palliative care. The clinical vignette further provide an exploratory view of the use of music therapy techniques and the quality of relationships, and how both of these contributed to increasing a patient’s QoL.  In the discussion, the findings are further explained in the light of other studies. In particular, ‘being with’ patients underpinned all of the musical and personal approaches that I made in working with hospice patients and this is evaluated as an overarching point. Although Ruud’s (1997) idea of QoL was a good fit in my study, the study may suggests how his model could address ways in which affective awareness, agency, belonging and meaning and coherence of life can be supported with various music and personal approaches in the context of music therapy in hospice and palliative care settings.</p>

Sign in / Sign up

Export Citation Format

Share Document