Life Beyond Heart Failure—What Are the Long-Term Challenges, Supportive Care Needs, and Views Toward Supportive Care of Multiethnic Asian Patients With Left Ventricular Assist Device and Their Caregivers?

Neo, Shu Hui; Ku, Jasmine Si Min; Wong, G; Tan, Boon Cheng; Tan, Eugene Yong Wei; Tan, Jasmine Yun Ting; Kerk, Ka Lee; Sim, David Kheng Leng; Sivathasan, Cumaraswamy; Yoon, Sungwon

doi:10.1016/j.jpainsymman.2020.03.022

Cited by 9 publications

(16 citation statements)

References 31 publications

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“… 29 32 33 35 For some participants work served as a distraction from worries and gave a feeling of mastery 29 33 and self-confidence. 32 33 For others, early return to work, even against medical advice, was reported as a problem-solving strategy to reinforce self-confidence and overcome stress. 33 Additionally, one Dutch study reported how no physical complaints and feeling good after a cardiac event also served as facilitators of re-employment.…”

Section: Resultsmentioning

confidence: 99%

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Barriers and facilitators to return to work following cardiovascular disease: a systematic review and meta-synthesis of qualitative research

2023

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ObjectivesReturn to work is a key rehabilitation goal, however, people recovering from cardiovascular disease (CVD) often struggle with returning to work. The aim of this study was to conduct a systematic review and meta-synthesis of the existing qualitative evidence on barriers and facilitators to return to work experienced by people with CVD.MethodsA systematic literature search was conducted in PubMed, Embase, Web of Science, PsycINFO, Scopus and CINAHL in August 2022. The reference lists of the included articles were searched. The Critical Appraisal Skills Programme was used for quality appraisal and a meta-synthesis was employed.FindingsThis review includes 15 studies of overall high methodological quality. Barriers covered four themes: physical limitations, psychological and relational factors, the working context and support within health and social care systems. Facilitators were related to five themes: return to normality, enhancing well-being, financial concerns, the working context and support within health and social care systems.ConclusionOur findings highlight that return to work following CVD is a complex process influenced by individual factors, as well as work-related factors, factors in the health and social care systems and social security policies and regulations. To improve return to work, this review illustrates a need for individualised, multidisciplinary and coordinated vocational rehabilitation programmes that accommodate potential barriers to re-employment. Similarly, this review highlights how vocational rehabilitation programmes should ensure individualised information and support early in the rehabilitation process, as well as the importance of engaging relevant stakeholders, such as employers, in making individualised return-to-work plans.

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Section: Resultsmentioning

confidence: 99%

“… 35 Lastly, participants in a Singaporean study mentioned that a greater awareness of left ventricular assist devices would be beneficial for return to work, as it would reduce their feeling of stigmatisation. 32 …”

Section: Resultsmentioning

confidence: 99%

Barriers and facilitators to return to work following cardiovascular disease: a systematic review and meta-synthesis of qualitative research

2023

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“…In terms of needs and support, in our previous work on LVAD patients' unmet needs and challenges, 18 we have shed light on possible interventions. They included (1) having regular assessment of needs and proactive interventions to manage these needs, (2) greater advocacy, and (3) developing a holistic supportive care program to supplement conventional disease-directed care so as to provide an additional layer of support.…”

Section: Discussionmentioning

confidence: 99%

Lived Experiences and Long-Term Challenges and Needs of Asian Left Ventricular Assist Device Caregivers

Neo

Tan

et al. 2021

Palliative Medicine Reports

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Background: Caregivers are essential for improved outcomes in patients living with left ventricular assist device (LVAD). There is a paucity of research on a long-term LVAD caregivers' experiences and burdens. Objectives: The aim of this study was to explore long-term challenges and needs of LVAD caregivers in the Asian health care setting. Design: We conducted semistructured interviews with caregivers of patients who were currently or previously living with the LVAD. Settings/Subjects: Caregivers were recruited from the National Heart Centre Singapore. Measurements: Interviews were conducted in English and Chinese. All interviews were transcribed verbatim and analyzed based on grounded theory. Chinese interviews were translated to English before transcription. Results: A multiethnic and multireligious sample of 11 caregivers participated. Median caregiving duration was 45 months. Caregivers described long-term challenges that were multifaceted. Misaligned patient expectations, stigmatization and limited social resources within the family and society affected caregivers' coping. Existing gender roles and spiritual and cultural influences shaped how caregivers appraised, made meaning of caregiving, and assessed support. Long-term caregivers' needs included learning from role models, shifting perspectives, enhancing communication between patient and caregivers, advocacy efforts, and holistic medical care. Conclusions: Gender roles as well as cultural and spiritual influences affected coping and access to support in long-term Asian LVAD caregivers. Future interventions should consider culturally relevant approaches to improve well-being and quality of life of caregivers.

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“…7 BTT and DT patients and caregivers often live long-term with the LVAD due to low organ transplant rates; enduring multi-dimensional challenges in the physical, financial, psycho-emotional, and spiritual domains. 8,9…”

Section: Introductionmentioning

confidence: 99%

“…7 BTT and DT patients and caregivers often live long-term with the LVAD due to low organ transplant rates; enduring multidimensional challenges in the physical, financial, psychoemotional, and spiritual domains. 8,9 Therefore, for advanced HF patients and their caregivers who are considering an LVAD, engaging in shared decisionmaking with their healthcare team will ensure that decisions are informed and their right to health and well being is protected. 10 In doing so, the healthcare team can provide care that is aligned with patients' preferences and expectations.…”

Section: Introductionmentioning

confidence: 99%

Deciding to Live (or Not) With a Left Ventricular Assist Device-a Thematic Analysis Exploring Factors Influencing the Decision-Making Process in Advanced Heart Failure Patients in Singapore

Neo

Tan

et al. 2022

Am J Hosp Palliat Care

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Background: It is often difficult for patients with advanced heart failure (HF) to decide whether to live with a left ventricular assist device (LVAD) or not. Little is known about their decisional needs prior to LVAD implantation and if these needs were met in the Asian cultural setting. Aims: We aimed to explore the influences, concerns, and needs surrounding the decision-making process of the LVAD implantation among multi-ethnic Asian patients with HF. Methods: Semi-structured interviews with HF patients and caregivers were conducted, based upon the grounded theory approach. Participants were purposively recruited from the inpatient and outpatient setting of the National Heart Centre Singapore. Results: A total of 31 patients and 11 caregivers participated. Mindsets that shaped decision-making ranged from “having no choice,” “being reflective,” “taking a gamble,” and “fighting on.” Instead of making a sole decision, many patients reported that decisions were shared with the family or medical team. Current LVAD patients who acted as patient ambassadors were also strong influences. Spiritual support was pivotal to decision-making for some participants. Goals influencing decision-making including protecting the family and life prolongation improving quality of life. Values held close included sanctity of life, trusting in a higher power, believing in pre-destination or karma, and preserving family harmony. Participants had concerns about cost, employment, and health outcomes. Conclusions: Asian LVAD patients and caregivers had culturally specific mindsets, goals, and values and concerns around decision-making. Our findings have implications for the design of interventions and supportive care models.

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Life Beyond Heart Failure—What Are the Long-Term Challenges, Supportive Care Needs, and Views Toward Supportive Care of Multiethnic Asian Patients With Left Ventricular Assist Device and Their Caregivers?

Cited by 9 publications

References 31 publications

Barriers and facilitators to return to work following cardiovascular disease: a systematic review and meta-synthesis of qualitative research

Barriers and facilitators to return to work following cardiovascular disease: a systematic review and meta-synthesis of qualitative research

Lived Experiences and Long-Term Challenges and Needs of Asian Left Ventricular Assist Device Caregivers

Deciding to Live (or Not) With a Left Ventricular Assist Device-a Thematic Analysis Exploring Factors Influencing the Decision-Making Process in Advanced Heart Failure Patients in Singapore

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