Education, Training, and Mentorship of Caregivers of Canadians Experiencing a Life-Limiting Illness

Williams, Allison

doi:10.1089/jpm.2017.0393

Cited by 9 publications

(16 citation statements)

References 31 publications

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“…A literature review on the level of preparedness of cancer caregivers reveals the lack of a standardised approach to providing education and ongoing support to these caregivers. 11 Given that one major role of caregivers is that of communicators on behalf of the patient to stakeholders (medical teams, insurance, friend, family, etc), one study sought to better characterise the available caregiver education materials in print aimed to develop caregiver health literacy skills. 12 A search across all National Cancer Institute (NCI)-designated cancer centres revealed that only 3 of the 28 print materials were written at the sixth grade reading level (recommended) and only five addressed all six domains of caregiver health literacy skills.…”

Section: Current State Of Preparation For Cancer Caregivingmentioning

confidence: 99%

Caring for the caregiver: a systematic review characterising the experience of caregivers of older adults with advanced cancers

Adashek

Subbiah

2020

ESMO Open

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The steady advances in oncology bring a host of therapeutic options for older adults (≤65 years old) with cancer. As these patients experience this proliferation of anticancer therapies, their caregivers too have witnessed their role rapidly expanding and evolving as they care for these individuals. To better understand the caregiver experience, a review of the current literature on informal caregiving and cancer caregiving was conducted. These informal caregivers are often individuals with a strong personal connection to the person with advanced cancer, such as a close relative, spouse/partner or friend. Caregivers provide a broad range of assistance with most aspects of day-to-day life. However, we have limited knowledge of the impact of this role on the caregivers themselves, particularly in the context of an older adult patient and their unique needs. Here, we explore the data on caregiver experience when caring for a person with advanced cancers—specifically, we characterise the symptom burden and effects on the caregiver well-being with emphasis on the care of older adults with cancer.

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Section: Current State Of Preparation For Cancer Caregivingmentioning

confidence: 99%

Caring for the caregiver: a systematic review characterising the experience of caregivers of older adults with advanced cancers

Adashek

Subbiah

2020

ESMO Open

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“…As indicated in Figure 1 , initial screening of electronic databases and advanced Google searches yielded 145 articles. After de-duplication and full-text screening, 28 articles were included in this review 11 – 38 (22 peer-reviewed [78%] 11 – 13 , 15 – 19 , 21 – 25 , 28 – 31 , 34 – 39 and 6 grey literature sources [22%]. 14 , 20 , 26 , 27 , 32 , 33 ) The 22 peer-reviewed articles included 12 (55%) 12 , 13 , 16 , 17 , 19 , 21 , 22 , 28 , 30 – 32 , 38 qualitative research papers, 4 literature reviews (18%), 18 , 23 , 34 , 36 3 mixed-methods papers (13%), 11 , 25 , 35 1 descriptive study (4%), 24 1 longitudinal study (4%), 37 and 1 randomized control trial (4%).…”

Section: Resultsmentioning

confidence: 99%

“… 12 , 31 , 33 , 37 , 38 Specifically, educational interventions for ICs that were focused on symptom management and coping skills significantly improved informal caregiver QoL. 33 , 34 , 36 ICs perceived some of the benefits of these interventions to include enhanced emotional well-being, increased feelings of preparedness for end of life, comfort, and confidence about their decision making. 12 , 31 , 34 , 37 , 38 One particular study found that an educational program that was jointly attended by both bereaved and current caregivers contributed to caregiver's wellness by promoting solidarity, reduced stress, and increased coping.…”

Section: Resultsmentioning

confidence: 99%

“…12 Despite this, four studies (14%) found the current educational interventions in place were not sufficient and did not adequately support the needs of ICs. 19,25,32,34 Generally, caregivers wished for more information about death and dying so they could better prepare themselves and family members. 16,19,25,32,34 In one particular study, ICs expressed the need for concrete information about EOL care so they could "demystify death".…”

Section: Indirect Interventions: Informational Provision/educationmentioning

confidence: 99%

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Support for Informal Caregivers in Canada: A Scoping Review from a Hospice and Palliative/End-of-Life Care Lens

et al. 2022

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Background Informal caregivers (ICs) providing care for those at the end-of-life face physical, psycho-social, emotional, and/or financial challenges. However, there is a paucity of research towards the effectiveness of available interventions for this vulnerable population. The purpose of this scoping review was to investigate the availability and efficacy of interventions for ICs providing hospice and palliative/end-of-life care in Canada. Methods Using Arksey and O’Malley's five step framework, a scoping review was conducted in the spring of 2020. Key electronic healthcare, social sciences, and grey literature databases were searched. Relevant publications from 2005 to 2019 were screened for inclusion criteria, and a thematic content analysis was conducted to summarize all key findings. Results Initial searches yielded 145 results out of which 114 distinct articles were obtained. De-duplication and final screening yielded 28 sources which met inclusion criteria (22 peer-reviewed articles [78%] and 6 grey sources [22%]; 12 qualitative papers [42%]). Through thematic content analysis, four major themes were identified: [1] Direct financial support, [2] Direct psycho-sociospiritual support, [3] Indirect patient information provision/education, and [4] Indirect patient support. Conclusions Healthcare practitioners should provide information on patient care and financial aid to ICs. Policies should aim to expand eligibility for and access to financial aid, in particular the Compassionate Care Benefits (CCB). Future research should focus on exploring other interventions, such as physical activities, to better support this vulnerable population. The results from this review will help inform and improve the well-being of ICs providing end-of-life care in Canada and beyond.

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“…In addition, caregiving obligations may restrain the caregiver's capacity to engage in different activities in the society [56]. Williams [57] reported that the burden experienced by family caregivers who assist patients only in instrumental tasks is different than that experienced by family caregivers who provide the patients physical and psychological assistance. Obviously, it was demonstrated in several studies that the patient's physical limitations is linked to the decline in cancer family caregiver physical health and can lead to the negative perception of the caregiving experience including the sense of burden [7,[58][59][60].…”

Section: Univariate Analyses: Factors Associated To High Levels Of Caregiver Burdenmentioning

confidence: 99%

Impact of demographic, clinical and psychological variables of patients and caregivers on the perception of burden among the family caregivers of patients with cancer

Amamou¹,

Fathallah²,

Ammar³

et al. 2019

Integr Cancer Sci Therap

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The study aims were to assess the level of burden among caregivers of patients diagnosed with cancer and to examine patient and caregiver variables associated with high levels of burden.A descriptive cross sectional study was performed at the Psychiatric Department in the University Hospital of Monastir, Tunisia. The study included a total of 138 dyads of patients and their corresponding family caregivers. The dyads were convoked then examined. The data were assembled using questionnaires elaborated by the research team and caregiver burden was measured with the Zarit Burden Interview. Patients completed the Hospital Anxiety and Depression Scale and the KATZ Index of Activities of Daily Living. About one third of the caregivers experienced high levels of burden. The scores at the Zarit Burden Interview ranged from 15 to 70 and mean score was 48.7 (SD =18.2). This negative outcome of caregiving was found to be related to both patients' and caregivers' variables. Statistically, the factors associated to high levels of burden among family caregivers that are linked to the patient's profile were: male gender, age between 61 and 70 years old, having other medical morbidities, necessitating pre and post-operative chemotherapy, having intermediate to high levels of anxious or depressive symptoms and a severe functional impairment. Caregivers who helped their patients to accomplish many daily activities were found to be high-burdened. The caregiver variables that were found to be related to high levels of burden among caregivers were: male gender, age between 40 and 59 years old, employed full-time status, being the child of the patient, having another member of the family needing daily care, caregiving period more than one year, and not resorting to a professional healthcare at home. The current study demonstrates the importance of a systematic assessment and early intervention procedures needed in order to detect vulnerable caregivers.

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Education, Training, and Mentorship of Caregivers of Canadians Experiencing a Life-Limiting Illness

Abstract: The palliative navigator approach is a key role in the education, training, and mentorship of caregivers.

Cited by 9 publications

References 31 publications

Caring for the caregiver: a systematic review characterising the experience of caregivers of older adults with advanced cancers

Caring for the caregiver: a systematic review characterising the experience of caregivers of older adults with advanced cancers

Support for Informal Caregivers in Canada: A Scoping Review from a Hospice and Palliative/End-of-Life Care Lens

Impact of demographic, clinical and psychological variables of patients and caregivers on the perception of burden among the family caregivers of patients with cancer

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