From insiders' perspectives: adjusting to caregiving for patients with left ventricular assist devices

Marcuccilli, Linda; Casida, Jesus

doi:10.7182/prtr.21.2.dq53164u1464u683

Cited by 18 publications

(10 citation statements)

References 16 publications

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“…The survey was completed by each participant for each of the 14 materials. The survey collected multiple choice responses on (1) the amount of information provided, (2) how balanced the information was, (3) whether 1 option was presented as the best overall choice, (4) how clear information was presented, (5) how helpful the material was in decision making, and (6) if the responder would recommend the material to others. Each question used …”

Section: Biasmentioning

confidence: 99%

“…[1][2][3][4][5][6] The informed consent process, guided by the ethical principle of autonomy, calls for comprehension of the benefits and risks of the offered therapy and available alternatives. 7 Medical decision making around LVAD therapy, for both bridge-to-transplant (BTT) and destination therapy (DT), is improved if eligible patients and their caregivers are empowered to understand this complex treatment decision.…”

mentioning

confidence: 99%

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Educational Resources for Patients Considering a Left Ventricular Assist Device

Iacovetto

Matlock

McIlvennan

et al. 2014

Circ: Cardiovascular Quality and Outcomes

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A lthough left ventricular assist devices (LVADs) improve survival and quality of life in carefully selected patient populations, the risks associated with the operation and the necessary lifestyle changes make the decision to undergo LVAD implant a monumental one. [1][2][3][4][5][6] The informed consent process, guided by the ethical principle of autonomy, calls for comprehension of the benefits and risks of the offered therapy and available alternatives. 7 Medical decision making around LVAD therapy, for both bridge-to-transplant (BTT) and destination therapy (DT), is improved if eligible patients and their caregivers are empowered to understand this complex treatment decision. [8][9][10][11][12][13] The process of patient and caregiver education on complex medical therapies is an area of active development. Consultation by healthcare professionals is important, but opinions can vary between individuals and specialties, and discussions are often limited by time.14 Several forms of educational materials are available to patients. Not surprisingly, the accuracy, quality, and usefulness of such patient-oriented materials is varied and has been criticized when used in medical decisions for other diseases. [15][16][17][18] Although all formats of educational materials have potential value, formal decision aids seem to be particularly useful in preintervention education through their explicit goals of conveying to patients that they have a choice, providing details on practical alternatives and helping patients clarify their values. [19][20][21][22][23] As the use of LVADs continues to increase, so does the availability of LVAD-related educational materials. 24 Patients and families of those with severe heart failure are using these resources to educate themselves on LVAD therapy, which may in the end have an effect on medical decision making. However, the scope and quality of these materials has not been Background-Left ventricular assist devices (LVADs) are being used with increasing frequency to treat severe heart failure.Patients seek out informational resources when considering implantation. The primary study objective was to characterize the scope and quality of available LVAD educational materials. Methods and Results-In July 2013, we performed a cross-sectional search of Internet, print, and multimedia resources available to patients considering LVAD. Written materials <10 sentences, videos <2 minutes, and materials clearly directed to healthcare professionals were excluded. Seventy-seven materials met inclusion criteria. Potential benefits of LVAD therapy were discussed in all (n=77), whereas less often mentioned were risks (n=43), lifestyle considerations (n=29), surgical details (n=26), caregiver information (n=9), and hospice or palliative care (n=2 Methods Search StrategyTo identify existing educational resources written for a patient considering LVAD therapy, we used several targeted Internet searches and a survey of mechanical circulatory support coordinators. Two research librarians assisted in deve...

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Section: Biasmentioning

confidence: 99%

mentioning

confidence: 99%

Educational Resources for Patients Considering a Left Ventricular Assist Device

Iacovetto

Matlock

McIlvennan

et al. 2014

Circ: Cardiovascular Quality and Outcomes

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show abstract

“…The studies show that life on MCS required major adjustment for both patients and their caregivers, and that the early experience could be frightening and overwhelming. [28][29][30] Despite a new lease on life offered by the treatment, MCS affected multiple aspects of life, including hygiene, sleep, the environment, daily routines, and personal and intimate relationships. 28,31 An initial adjustment period of ≈3 months was difficult for both MCS recipients and informal caregivers.…”

Section: Expectations For Daily Lifementioning

confidence: 99%

“…28,31 An initial adjustment period of ≈3 months was difficult for both MCS recipients and informal caregivers. 28,30 Informal caregivers, who described caregiving as a 24/7 responsibility, settled into their role and new lifestyle with time. 28,30 Most MCS recipients reported being satisfied with intimate relations after implantation, after various adaptations and self-care behaviors were undertaken although some of their partners were fearful of sexual activity.…”

Section: Expectations For Daily Lifementioning

confidence: 99%

“…28,30 Informal caregivers, who described caregiving as a 24/7 responsibility, settled into their role and new lifestyle with time. 28,30 Most MCS recipients reported being satisfied with intimate relations after implantation, after various adaptations and self-care behaviors were undertaken although some of their partners were fearful of sexual activity. 31 Sleep disturbances were common: in a study of 12 patients (25% DT), all displayed both short sleep duration (average 4.5 hours) and poor sleep quality at 6 months after implantation despite significant improvement in overall quality of life.…”

Section: Expectations For Daily Lifementioning

confidence: 99%

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