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.

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.

Designing Research With Hospice and Palliative Care Populations

2011 ◽  
Vol 29 (5) ◽  
pp. 335-345 ◽  
Author(s):  
Ashley M. Wohleber ◽  
Daniel S. McKitrick ◽  
Shawn E. Davis
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Quality Of Care ◽  
Informed Consent ◽  
End Of Life ◽  
English Language ◽  
Care Quality ◽  
Design Studies ◽  
Hospice And Palliative Care

Research in palliative care and hospice populations is important for improving quality of care, quality of life, and provider understanding of individuals at the end of life. However, this research involves many potential challenges. This review seeks to inform and assist researchers targeting to design studies targeting hospice and palliative care patients by presenting a thorough review of the published literature. This review covers English-language articles published from 1990 through 2009 listed in the PsycInfo, Medline, or CINAHL research databases under relevant keywords. Articles on pediatric hospice were not included. Issues discussed include study design, informed consent, and recruitment for participants. Synthesized recommendations for researchers in these populations are presented.

scholarly journals The partner’s perspective of the impact of pituitary disease: Looking beyond the patient

2017 ◽  
Vol 24 (12) ◽  
pp. 1687-1697 ◽  
Author(s):  
Cornelie D Andela ◽  
Jitske Tiemensma ◽  
Adrian A Kaptein ◽  
Margreet Scharloo ◽  
Alberto M Pereira ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Focus Groups ◽  
Unmet Needs ◽  
Social Issues ◽  
Well Being ◽  
Cushing's Disease ◽  
Pituitary Disease ◽  
Negative Beliefs ◽  
The Impact

People with pituitary disease report impairments in quality of life. The aim of this study was to elucidate the impact of the pituitary condition on the lives of partners. Four focus groups of partners of people with pituitary disease (Cushing’s disease, non-functioning adenoma, acromegaly, prolactinoma) were conducted. Partners mentioned worries related to the pituitary disease and negative beliefs about medication, coping challenges, relationship issues, social issues and unmet needs regarding care. This study emphasizes the importance of not only paying attention to psychosocial well-being of people with pituitary disease but also to their partners.

scholarly journals Enabling occupation at the end of life: A literature review

2015 ◽  
Vol 13 (6) ◽  
pp. 1755-1769 ◽  
Author(s):  
Katherine Mills ◽  
Angela Payne
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Occupational Therapy ◽  
End Of Life ◽  
End Of Life Care ◽  
Well Being ◽  
Life Care ◽  
Palliative Care Teams ◽  
Community Environments

ABSTRACTObjective:Occupation, or meaningful activity, can contribute to the well-being and quality of life of all individuals. It is thus a logical tautology that occupation should be enabled for those at the end of life. Our present review examines current provision of these processes by Occupational Therapist, who can be much-valued members of multidisciplinary palliative care teams.Method:Following a literature search and critical selection, 10 global papers were identified examining occupation and occupational therapy at the end of life in the acute, hospice, and community environments.Results:Universally, there appeared to be a dearth of therapists working in end-of-life care. Provision of palliative care in hospitals was found to be compensatory or rehabilitative. Hospice therapy emerged as pleasingly occupational, though the number of hospice places was disappointingly few. Community literature was sparse, so it proved challenging to draw definitive conclusions. Promising research refracted light on occupation at home; however, it also revealed stretched domiciliary services, where clients are not well informed about the potential scope of occupational therapy.Significance of Results:A “good death” involving a quality end-of-life experience is the foundational goal overarching all therapy and medicine in the provision of palliative care. Arguably, an occupation-focused approach provided by therapists meets client needs to enable meaningful experiences in the limited time left to them. Current occupational therapy practice environments are not necessarily achieving these goals in commensurate fashion. There is a need to promote the role of occupational therapy and circumscribe what therapists can offer. Further research is necessitated across all environments and future funding for therapist positions in palliative teams. End-of-life care can be complex and challenging; however, therapists can facilitate fulfillment of client-centered occupational goals. In engaging with personally constructed nuances of meaning, quality of life can be improved in those deserving of a significant and emotionally rich daily existence during their final days.

Psychological well-being in palliative care: A systematic review

2021 ◽  
pp. 003022282110192
Author(s):  
Tamara Redondo Elvira ◽  
Celia Ibáñez del Prado ◽  
Juan Antonio Cruzado
Keyword(s):  
Quality Of Life ◽  
Social Support ◽  
Palliative Care ◽  
End Of Life ◽  
Well Being ◽  
Psychological Well Being ◽  
Predictive Variables ◽  
Spiritual Well Being ◽  
Relevant Variables

Objective To review which are the most influential variables in achieving levels of psychological well-being at the end of life and to verify whether, as certain studies suggest, spirituality, resilience and social support are the pillars on which the psychological well-being construct is based. Method A systematic search through the Scopus, Pubmed and PsycInfo electronic databases was carried out using keywords such as: “wellbeing” OR “psychological-well-being” AND “resilience” AND “spirituality” AND “social support” AND “palliative care” and their multiple combinations. Results Eleven studies were selected, in which terms such as spiritual well-being, absence of discomfort and quality of life were used in substitution of psychological well-being and a certain consensus was found regarding whether resilience, spirituality and social support are predictive variables of psychological well-being. Conclusions Resilience, social support and spirituality are highly relevant variables at the end of life and contribute decisively towards psychological well-being.

Palliative wound and ostomy care

2021 ◽  
pp. 622-647
Author(s):  
Charles P. Tilley ◽  
Mei R. Fu ◽  
Janet H. Van Cleave ◽  
Allison R. Most ◽  
Christopher Comfort
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
End Of Life ◽  
Symptom Management ◽  
Functional Performance ◽  
Well Being ◽  
Management Science ◽  
Evidence Based ◽  
Evidence Based Guidelines

Palliative wound and ostomy care is a nascent area of palliative care, with little research and few evidence-based guidelines to guide practice. Many patients at the end of life will suffer from a wound or ostomy malady, requiring an interprofessional approach led by specialist-level, palliative care clinicians in consultation with a wound, ostomy, and continence nurse. Palliative wound and ostomy care emphasizes an interprofessional, patient-centred approach to alleviate suffering and promote well-being and quality of life through expert symptom management and preservation or restoration of functional performance. A combination of evidence-based wound and ostomy interventions and advanced symptom management science is the hallmark of this specialty.

The effectiveness of hope-fostering interventions in palliative care: A systematic review and meta-analysis

2021 ◽  
pp. 026921632199472
Author(s):  
Natalia Salamanca-Balen ◽  
Thomas V Merluzzi ◽  
Man Chen
Keyword(s):  
Quality Of Life ◽  
Systematic Review ◽  
Palliative Care ◽  
Meta Analysis ◽  
Symptom Burden ◽  
Well Being ◽  
Medium Effect ◽  
Spiritual Well Being ◽  
Quasi Experimental

Background: The concept of hope is an important theme in chronic illness and palliative care and has been associated with increased psycho-spiritual well-being and quality of life. Psycho-spiritual interventions have been described in this population, but no systematic review of hope-enhancing interventions or hopelessness-reducing interventions has been conducted for persons with palliative care diseases. Aim: To describe and assess the effectiveness of interventions in palliative care that measure hope and/or hopelessness as an outcome. Design: This systematic review and meta-analysis was pre-registered (Prospero ID: CRD42019119956). Data sources: Electronic databases, journals, and references were searched. We used the Cochrane criteria to assess the risk of bias within studies. Results: Thirty-five studies (24 randomized controlled trials, 5 quasi-experimental, 6 pre-post studies) involving a total of 3296 palliative care patients were included. Compared with usual/standard cancer care alone, interventions significantly increased hope levels at a medium effect size ( g = 0.61, 95% confidence interval (CI) = 0.28–0.93) but did not significantly reduce hopelessness ( g = −0.08, 95% CI = −0.18 to 0.02). It was found that interventions significantly increase spirituality ( g = 0.70, 95% CI = 0.02–1.37) and decrease depression ( g = −0.29, 95% CI = −0.51 to −0.07), but had no significant effect over anxiety, quality of life, and symptom burden. Overall, quality of evidence across the included studies was rated as low. Conclusions: Evidence suggests that interventions can be effective in increasing hope in palliative care patients.

Does a Patient-Held Quality-of-Life Diary Benefit Patients With Inoperable Lung Cancer?

2009 ◽  
Vol 27 (1) ◽  
pp. 70-77 ◽  
Author(s):  
Moyra E. Mills ◽  
Liam J. Murray ◽  
Brian T. Johnston ◽  
Chris Cardwell ◽  
Michael Donnelly
Keyword(s):  
Quality Of Life ◽  
Lung Cancer ◽  
Palliative Care ◽  
Health Care Professionals ◽  
Standard Care ◽  
Care Quality ◽  
Care Group ◽  
Consistent Difference ◽  
Life Questionnaire

Purpose To examine the effect of weekly completion of a patient-held quality-of-life (QOL) diary in routine oncology practice for palliative care patients. Patients and Methods In a pragmatic randomized controlled trial, 115 patients with inoperable lung cancer were randomly assigned to receive either standard care or a structured QOL diary (European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire C30 and the related lung cancer module LC13) that they completed at home each week for 16 weeks. Patients were encouraged to share the QOL information with health professionals involved in their care. Changes in QOL over time (measured by the Functional Assessment of Cancer Therapy–Lung questionnaire and the Palliative Care Quality of Life Index), discussion of patient problems, and satisfaction with communication and general care were assessed at baseline and at 2 and 4 months after baseline. Results Analysis of QOL indicated a small but consistent difference between patients in the diary group and the standard care group. The diary group had a poorer QOL in many domains. Two different QOL summary scores (total and overall QOL) indicated a statistically significant between-group difference. No effects were found in relation to satisfaction with care, communication, or the discussion of patient problems. Conclusion The regular completion of a QOL questionnaire without appropriate feedback to health care professionals and without the provision of appropriate support may have a negative impact on inoperable lung cancer patients. Further research should focus on identifying features such as feedback loops that are required for the successful and meaningful use of QOL questionnaires in routine patient care.

scholarly journals Fears, beliefs, and quality of life of patients with cancer vs the general population during the coronavirus disease 2019 (COVID-19) pandemic in Lombardy

2021 ◽  
pp. 030089162110228
Author(s):  
Carla Ida Ripamonti ◽  
Giacomo Massa ◽  
Daniela Insolvibile ◽  
Mauro Guglielmo ◽  
Guido Miccinesi ◽  
...  
Keyword(s):  
Quality Of Life ◽  
General Population ◽  
Perceived Risk ◽  
Well Being ◽  
Comprehensive Cancer Center ◽  
Cancer Center ◽  
Psychological Consequences ◽  
Patients With Cancer ◽  
Fear Of Cancer

Aim: To understand how patients with cancer reacted to the coronavirus disease 2019 (COVID-19) pandemic and whether their quality of life (QoL) was affected. Methods: In June 2020, 111 patients with cancer treated in the supportive care unit of a Comprehensive Cancer Center in Milan and 201 healthy controls from the general population were enrolled and assessed both quantitatively and qualitatively for fears and COVID-19–related beliefs as well as for QoL. Results: Fear of COVID-19 was significantly lower among patients (41% vs 57.6%; p = 0.007), as was fear of cancer (61.5% vs 85.6%; p < 0.001) and other diseases. The perceived risk of getting COVID-19 was lower among patients (25.2% vs 52.7%; p < 0.001), as was the belief of having been exposed to severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) (18.1% vs 40.8%; p < 0.001). The physical component of QoL was better among the population (54.5 vs 43.8; p < 0.001); the reverse was true for patients’ psychological well-being (44.6 vs 39.6; p < 0.001). The qualitative data supported such results, showing a reduced psychological effect on the patients with cancer compared to the controls. Various reasons explain this result, including the awareness of being treated for cancer and nevertheless protected against getting infected in a cancer center of public health reorganized to continue treating patients by protecting them and personnel from the risk of infection. Conclusions: The experience of a cancer diagnosis, together with proper hospital reorganization, may act as protective factors from fears and psychological consequences of the COVID-19 outbreak.

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