The tension between carrying a burden and feeling like a burden: a qualitative study of informal caregivers’ and care recipients’ experiences after patient discharge from hospital

Lilleheie, Ingvild; Bye, Asta; Bergland, Astrid

doi:10.1080/17482631.2020.1855751

Cited by 24 publications

(26 citation statements)

References 66 publications

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“…Some key findings in our review resonate with non-palliative care literature on how concordance and discordance manifest between patients and family caregivers in decision-making about care. For example, patients with generic healthcare needs and their family caregivers also feel conflicted about caregiver burden 60. People with non-life-limiting illness and their family caregivers also make decisions in the context of knowledge about disease and treatment options,61 and the strain and demands of living with debilitating illness 62.…”

Section: Discussionmentioning

confidence: 99%

Decision-making in palliative care: patient and family caregiver concordance and discordance—systematic review and narrative synthesis

Symmons

Ryan

Aoun

et al. 2022

BMJ Support Palliat Care

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BackgroundDecision-making in palliative care usually involves both patients and family caregivers. However, how concordance and discordance in decision-making manifest and function between patients and family caregivers in palliative care is not well understood.ObjectivesTo identify key factors and/or processes which underpin concordance and/or discordance between patients and family caregivers with respect to their preferences for and decisions about palliative care; and ascertain how patients and family caregivers manage discordance in decision-making in palliative care.MethodsA systematic review and narrative synthesis of original studies published in full between January 2000 and June 2021 was conducted using the following databases: Embase; Medline; CINAHL; AMED; Web of Science; PsycINFO; PsycARTICLES; and Social Sciences Full Text.ResultsAfter full-text review, 39 studies were included in the synthesis. Studies focused primarily on end-of-life care and on patient and family caregiver preferences for patient care. We found that discordance between patients and family caregivers in palliative care can manifest in relational conflict and can result from a lack of awareness of and communication about each other’s preferences for care. Patients’ advancing illness and impending death together with open dialogue about future care including advance care planning can foster consensus between patients and family caregivers.ConclusionsPatients and family caregivers in palliative care can accommodate each other’s preferences for care. Further research is needed to fully understand how patients and family caregivers move towards consensus in the context of advancing illness.

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Section: Discussionmentioning

confidence: 99%

Decision-making in palliative care: patient and family caregiver concordance and discordance—systematic review and narrative synthesis

Symmons

Ryan

Aoun

et al. 2022

BMJ Support Palliat Care

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“…Salah satu kesulitan besar dalam kegiatan pembelajaran adalah kurangnya perhatian pendidik terhadap peserta didiknya (Novitasari et al, 2021). Ahli psikologi Alfred Adler menegaskan bahwa orang yang mengalami kesulitan terbesar dalam hidupnya dan yang paling menyulitkan orang lain adalah orang yang tidak mempunyai perhatian pada orang lain (Lilleheie et al, 2021). Begitu juga dalam kegiatan pembelajaran, kesulitan besar terjadi (Mohammad & Hazarika, 2016) karena kurangnya kepedulian dan perhatian pendidik terhadap peserta didiknya (Darong et al, 2020).…”

Section: Pendahuluanunclassified

“…Begitu juga dapat dikatakan bahwa salah satu masalah terbesar dalam kegiatan pembelajaran, adalah karena kurangnya kepedulian dan perhatian pendidik kepada peserta didiknya. Perhatian yang tulus dan jujur dari seorang pendidik, membawa dampak positif yang sangat besar terhadap motivasi belajar peserta didik, sebab pendidik yang pemerhati, pasti disenangi oleh peserta didiknya, dan kegiatan pembelajaran yang diselenggarakannya (Lilleheie et al, 2021). Dari hasil analisis data penelitian yang telah dilakukan diperoleh skor sikap kepribadian pendidik yang suka memberi perhatian yang tulus dan jujur kepada peserta didik, sebesar 19,58 atau 65,28% dari skor ideal 30.…”

Section: Hasil Dan Pembahasanunclassified

Sikap Kepribadian Guru PAUD yang Menarik dan Disukai Peserta Didik

Lase¹,

Zega²

2021

J. Obs. J. Pendidik. Anak Usia Dini

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Penelitian ini bertujuan untuk mengungkap, mengkaji lebih dalam apa adanya, secara spesifik dan urut mengenai kualitas sikap kepribadian guru dalam mendidik peserta didik. menggunakan metode deskriptif bersifat kuantitatif-kualitatif. Pengumpulan data dengan teknik skala likert menggunakan kuesioner, dan instrumen berupa angket tertutup yang dikembangkan berdasarkan pokok-pokok penelitian. Instrumen ini disebar secara acak dari populasi guru-guru PAUD di kota Gunungsitoli sebagai responden dan sumber data penelitian. Data dianalisis secara kuantitatif, dan selanjutnya hasilnya akan dideskripsikan secara kualitatif. Hasil penelitian mengungkap bahwa kualitas sikap kepribadian guru berada pada kategori kurang dan sikap kepribadin ini berdampak besar terhadap motivasi belajar peserta didik, baik secara positif maupun negatif. Direkomendasikan kepada para pendidik agar mengembangkan kualitas sikap kepribadian yang baik

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“…Recent qualitative research conducted with caregivers of older adults discharged from hospital indicated that negative impacts of caregiving at this time can stem from feelings of uncertainty exacerbated by gaps in formal support, the strain of balancing caregiving with other life demands and a sense of helplessness. 22 Therefore further trials that design and evaluate interventions to support caregivers when the older adult they care for is transitioning from hospital to home are required.…”

Section: Open Accessmentioning

confidence: 99%

Evaluating the provision of Further Enabling Care at Home (FECH+) for informal caregivers of older adults discharged home from hospital: protocol for a multicentre randomised controlled trial

et al. 2021

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IntroductionThere are personal and societal benefits from caregiving; however, caregiving can jeopardise caregivers’ health. The Further Enabling Care at Home (FECH+) programme provides structured nurse support, through telephone outreach, to informal caregivers of older adults following discharge from acute hospital care to home. The trial aims to evaluate the efficacy of the FECH+ programme on caregivers’ health-related quality of life (HRQOL) after care recipients’ hospital discharge.Methods and analysisA multisite, parallel-group, randomised controlled trial with blinded baseline and outcome assessment and intention-to-treat analysis, adhering to Consolidated Standards of Reporting Trials guidelines will be conducted. Participants (N=925 dyads) comprising informal home caregiver (18 years or older) and care recipient (70 years or older) will be recruited when the care recipient is discharged from hospital. Caregivers of patients discharged from wards in three hospitals in Australia (one in Western Australia and two in Queensland) are eligible for inclusion. Participants will be randomly assigned to one of the two groups. The intervention group receive the FECH+ programme, which provides structured support and problem-solving for the caregiver after the care recipient’s discharge, in addition to usual care. The control group receives usual care. The programme is delivered by a registered nurse and comprises six 30–45 min telephone support sessions over 6 months. The primary outcome is caregivers’ HRQOL measured using the Assessment of Quality of Life—eight dimensions. Secondary outcomes include caregiver preparedness, strain and distress and use of healthcare services. Changes in HRQOL between groups will be compared using a mixed regression model that accounts for the correlation between repeated measurements.Ethics and disseminationParticipants will provide written informed consent. Ethics approvals have been obtained from Sir Charles Gairdner and Osborne Park Health Care Group, Curtin University, Griffith University, Gold Coast Health Service and government health data linkage services. Findings will be disseminated through presentations, peer-reviewed journals and conferences.Trial registration numberACTRN12620000060943.

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The tension between carrying a burden and feeling like a burden: a qualitative study of informal caregivers’ and care recipients’ experiences after patient discharge from hospital

Cited by 24 publications

References 66 publications

Decision-making in palliative care: patient and family caregiver concordance and discordance—systematic review and narrative synthesis

Decision-making in palliative care: patient and family caregiver concordance and discordance—systematic review and narrative synthesis

Sikap Kepribadian Guru PAUD yang Menarik dan Disukai Peserta Didik

Evaluating the provision of Further Enabling Care at Home (FECH+) for informal caregivers of older adults discharged home from hospital: protocol for a multicentre randomised controlled trial

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