Caring for heart transplant recipients: The lived experience of primary caregivers

Sadala, Maria Lúcia Araújo; Stolf, Noedir; Bocchi, Edimar Alcides; Bicudo, María Aparecida Viggiani

doi:10.1016/j.hrtlng.2012.09.006

Cited by 14 publications

(28 citation statements)

References 22 publications

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“…Frankowska and Wiechula () found that study participants hesitated to disclose their caregiving role to others, because metaphorically this indicated they had “lost a partner.” By contrast, caregivers who identified themselves as partners, and as a couple, in both their private lives and with health care professionals, were strengthened by this bond and developed a more positive self‐concept (Donnelly, ; Galvin et al, ; Greenwood, Mackenzie, Wilson, & Cloud, ; Harrow et al, ; Liedstrom, Isaksson, & Ahlstrom, ; Lin, Lin, Lee, & Lin, ; Sadala, Stolf, Bocchi, & Bicudo, ).…”

Section: Resultsmentioning

confidence: 99%

“…Liminal caregivers experienced a reduced participation in life and neglected themselves as they focused on “becoming” (Bulley et al, ; Buschenfeld et al, ; Donnelly, ; Galvin et al, ; Liedstrom et al, ; Navab et al, ; Rydstrom, Dalheim‐Englund, Segesten, & Rasmussen, ; Sadala et al, ). Loss of social connections led to feeling “like a prisoner in your own home” (Valimaki et al, ), A reduction in participation in life was dissatisfying for many, who strove to adapt and learn to navigate the “roller coaster” or uncertainty of a chronic illness trajectory (Donorfio & Kellett, ; Liedstrom et al, ; Rydstrom et al, ).…”

Section: Resultsmentioning

confidence: 99%

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Liminality as a Conceptual Frame for Understanding the Family Caregiving Rite of Passage: An Integrative Review

Gibbons

Ross

Bevans

2014

Research in Nursing & Health

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Family caregiving is a significant rite of passage experienced by family caregivers of individuals with protracted illness or injury. In an integrative review of 26 studies, we characterized family caregiving from the sociocultural perspective of liminality and explored associated psychosocial implications. Analysis of published evidence on this dynamic and formative transition produced a range of themes. While role ambiguity resolved for most, for others, uncertainty and suffering continued. The process of becoming a caregiver was transformative and can be viewed as a rebirth that is largely socially and culturally driven. The transition to family caregiving model produced by this review provides a holistic perspective on this phenomenon and draws attention to aspects of the experience previously underappreciated.

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Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Liminality as a Conceptual Frame for Understanding the Family Caregiving Rite of Passage: An Integrative Review

Gibbons

Ross

Bevans

2014

Research in Nursing & Health

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“…Similarly, a systematic review in heart transplantation demonstrated that social support is a strong contributor to long‐term post‐transplant health . However, the lives of heart transplant recipient's carers were shown to change markedly following a transplant: A qualitative study of 11 caregivers demonstrated the caregivers’ primary focus became the care of the transplant recipient but this resulted in high levels of anxiety and distress because of uncertainty about prognosis in addition to concerns regarding various home, work, financial, family and personal issues . Incidence of depression and anxiety amongst a study of 242 caregivers of cardiothoracic transplant patients was shown to steadily increase throughout the first 3 years post‐transplant .…”

Section: Discussionmentioning

confidence: 99%

The effect of Liver Transplantation on the quality of life of the recipient's main caregiver – a systematic review

Young

Rowe

Absolom

et al. 2016

Liver International

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“…Management models that include educational interventions, periodic monitoring and telematic support extended to caregivers in the months following the transplant event are predictive of good adherence to treatment [215,216]. It is also recommended to provide interventions for the prevention of relapse in smoker patients [217].…”

Section: Management Interventionsmentioning

confidence: 99%

“…Poor physical health in the caregiver at 12 months after transplantation results in a lower patient survival during the next seven years [343]. After HT, considering the consequences on the psychophysical health and socio-economic level of caregivers, some authors have identified the need for psychological support to the family [344] and for psychotherapeutic interventions addressed to the family [345]; others, focusing on potential conflicts in the marital relationship, suggest the utility of psychosocial interventions of counseling addressed to the couple [346,347].…”

Section: ) Family Caregivers Of Patients Undergoing Heart Transplantmentioning

confidence: 99%

Best practice in psychological activities in cardiovascular prevention and rehabilitation: Position Paper

Angelino

Porta

Abatello

et al. 2018

Monaldi Arch Chest Dis

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Recent guidelines on cardiovascular disease prevention suggest multimodal behavioral interventions for psychosocial risk factors and referral for psychotherapy in the case of clinically significant symptoms of depression and anxiety overall. Accordingly, psychologists of the Italian Association for Cardiovascular Prevention, Rehabilitation and Epidemiology (GICR-IACPR) have reviewed the key components of psychological activities in cardiovascular prevention and rehabilitation (CPR). The aim of this study was to elaborate a position paper on the best practice in routine psychological activities in CPR based on efficacy, effectiveness and sustainability. The steps followed were: i) a review of the latest international guidelines and position papers; ii) analysis of the evidence-based literature; iii) a qualitative analysis of the psychological services operating in some reference Italian cardiac rehabilitation facilities; iv) classification of the psychological activities in CPR as low or high intensity based on the NICE Guidelines on psychological interventions on anxiety and depression. We confirm the existence of an association between depression, anxiety, social factors, stress, personality and illness onset/outcome and coronary heart disease. Evidence for an association between depression, social factors and disease outcome emerges particularly for chronic heart failure. Some positive psychological variables (e.g., optimism) are associated to illness outcome. Evidence is reported on the impact of psychological activities on 'new' conditions which are now indicated for cardiac rehabilitation: pulmonary hypertension, grown-up congenital heart, end-stage heart failure, implantable cardioverter-defribrillator and mechanical ventricular assist devices, frail and oldest-old patients, and end-of-life care. We also report evidence related to caregivers. The Panel divided evidence-based psychological interventions into: i) low intensity (counseling, psycho-education, self-care, self-management, telemedicine, self-help); or ii) high intensity (individual, couples and/or family and group psychotherapy, such as stress management). The results show that psychotherapy is mainly consisting of cognitive-behavior therapy, interpersonal therapy, and short-term psycho-dynamic therapy. The current data further refine the working tools available for psychological activities in CPR, giving clear directions about the choice of interventions, which should be evidence-based and have at least a minimum standard. This document provides a comprehensive update on new knowledge and new paths for psychologists working in the CPR settings.

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Caring for heart transplant recipients: The lived experience of primary caregivers

Cited by 14 publications

References 22 publications

Liminality as a Conceptual Frame for Understanding the Family Caregiving Rite of Passage: An Integrative Review

Liminality as a Conceptual Frame for Understanding the Family Caregiving Rite of Passage: An Integrative Review

The effect of Liver Transplantation on the quality of life of the recipient's main caregiver – a systematic review

Best practice in psychological activities in cardiovascular prevention and rehabilitation: Position Paper

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