Caring for patients with end‐stage renal disease during COVID‐19 lockdown: What (additional) challenges to family caregivers?

Sousa, Helena; Frontini, Roberta; Ribeiro, Óscar; Paúl, Constança; Costa, Elísio; Amado, Leonilde; Miranda, Vasco; Ribeiro, Fernando; Figueiredo, Daniela

doi:10.1111/scs.12980

Cited by 17 publications

(29 citation statements)

References 27 publications

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“…A further two papers were related to mental health conditions [ 28 , 30 ] and another examined carers for people with neuro-palliative care conditions (mainly Parkinson’s and Alzheimer’s disease) [ 29 ]. One study [ 18 ] focused on carers of people with end-stage renal disease. Two studies focused on carers of people with cancer [ 23 , 25 ], one focused on caregiving of older adults and adults with learning disabilities [ 20 ], and another on the experiences of carers of stroke survivors [ 21 ].…”

Section: Resultsmentioning

confidence: 99%

The Experiences of Informal Carers during the COVID-19 Pandemic: A Qualitative Systematic Review

Bailey

Guo

MacArtney

et al. 2022

IJERPH

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Objectives: To identify, critically appraise and synthesise the qualitative literature on the experiences of informal carers of people with long-term conditions during the COVID-19 pandemic. Design: A qualitative systematic literature review. Data Sources: Eight electronic databases were systematically searched (Medline, Embase, CINAHL, PubMed, PsychINFO, Web of Science, Nursing and Allied Health and ASSIA) along with Google Scholar and handsearching via secondary sources. Study selection: Eligible studies had to include the experiences of informal carers (adults who are 65 or older), use a qualitative methodology and had to be written in English. Data extraction and synthesis: Retrieved papers were quality assessed using the Critical Appraisal Skills Programme qualitative checklist and ranked for quality. Thematic analysis was used to synthesise the findings. Results: Fourteen studies were included, all from medical or nursing journals (n = 5 specifically gerontology). Four main themes were identified: (i) fear, (ii) uncertainty, (iii) burden and (iv) staying connected. Caregiving demands have increased for carers during the pandemic, as well as negative emotions such as fear and uncertainty. At the same time, less social support has been available, leading to concerns about carers’ wellbeing and ability to cope. Conclusion: Carers’ needs have been exacerbated by the COVID-19 pandemic. Greater practical and emotional support is needed for carers from both formal services and community sources that considers their changing needs and offers educational and emotional support for long-term wellbeing. Strengths and Limitations: (1) This is the first systematic review to explore in depth the experiences of informal carers caring for people with a range of long-term conditions and from an international context. (2) The review includes an analysis of the quality of the studies, as well as a study of their relative contributions. (3) Further research is needed to explore the physical, emotional and financial impact of the pandemic for bereaved carers which is not captured in this review due to the lack of empirical data available at the time of review.

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Section: Resultsmentioning

confidence: 99%

The Experiences of Informal Carers during the COVID-19 Pandemic: A Qualitative Systematic Review

Bailey

Guo

MacArtney

et al. 2022

IJERPH

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“…They, therefore, belong to a population group that itself requires special protection and is at high risk of a particularly severe course of COVID‐19 (Parohan et al, 2020 ). Regardless of the measures implemented by the government to restrict public life, it can be assumed that burdens for caregiving relatives therefore also arise from fears of infecting care recipients or even themselves (Sousa et al, 2021 ). An online survey conducted among family caregivers in April and May 2020 found that 54% of the respondents reported being worried about contracting SARS‐CoV‐2 themselves and 69% reported being worried about infecting the person they provide care for (Teubner et al, 2020 ).…”

Section: Introductionmentioning

confidence: 99%

Additional burdens of family caregivers during the COVID‐19 pandemic: A qualitative analysis of social media in Germany

Fieselmann

Wahidie

Yılmaz-Aslan

et al. 2022

Nursing & Health Sciences

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Caregiving is associated with various burdens for family caregivers. The COVID‐19 pandemic and the protective measures implemented to restrict public life, such as social distancing and the closure of services and educational institutions, add further challenges. Little is known about how they are perceived by family caregivers. Based on an analysis of German social media posts, the aim of this study was to explore the additional strains family caregivers experience during the pandemic. The websites of three social media services were searched using the respective search engines provided by the websites. Data from a 10‐month period (March to December 2020) were identified and examined. A total of 237 publicly available posts were included in the analysis. Seven main categories were identified using a thematic approach: care and support, deterioration of the condition of the person being cared for, psychological challenges, financial challenges, infection control, access to protective equipment, and acknowledgement of family caregivers. Family caregivers are affected by additional burdens during the pandemic, which makes the development of support and relief services tailored to this population group necessary.

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“…Family caregivers have an essential role in enabling the connectedness of patients. Family caregivers for other severely ill patients reported similar experiences, for example end-stage renal disease [40], Alzheimer's dementia [41], neurodegenerative diseases [42], hematopoietic stem cell transplantation [43], and cancer [29]. However, the findings of this study highlighted the conflicts of family caregivers between minimizing the patient's risk of contagion with restricted visits, and supporting connectedness at the end of life.…”

Section: Pandemic-dependent Palliative Care Needsmentioning

confidence: 70%

The Impact of the SARS-CoV-2 Pandemic on the Needs of Non-Infected Patients and Their Families in Palliative Care—Interviews with Those Concerned

Gerlach

Ullrich²,

Berges³

et al. 2022

JCM

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During humanitarian crises, such as a pandemic, healthcare systems worldwide face unknown challenges. This study aimed to explore and describe the effect of the SARS-CoV-2 pandemic on the needs of non-infected patients and family caregivers in specialist palliative care, using qualitative, semi-structured interviews. Data were analyzed using inductive content analysis, following the framework approach. Thirty-one interviews were conducted with patients/family caregivers (15/16) in palliative care units/specialist palliative home care (21/10) from June 2020 to January 2021. Well-known needs of patients and family caregivers at the end of life remained during the pandemic. Pandemic- dependent themes were (1) implications of the risk of contagion, (2) impact of the restriction of social interactions, (3) effects on the delivery of healthcare, and (4) changes in the relative’s role as family caregiver. Restriction on visits limited family caregivers’ ability to be present in palliative care units. In specialist palliative home care, family caregivers were concerned about the balance between preserving social contacts at the end of life and preventing infection. Specialist palliative care during a pandemic needs to meet both the well-known needs at the end of life and additional needs in the pandemic context. In particular, attention should be given to the needs and burden of family caregivers, which became more multifaceted with regards to the pandemic.

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Caring for patients with end‐stage renal disease during COVID‐19 lockdown: What (additional) challenges to family caregivers?

Cited by 17 publications

References 27 publications

The Experiences of Informal Carers during the COVID-19 Pandemic: A Qualitative Systematic Review

The Experiences of Informal Carers during the COVID-19 Pandemic: A Qualitative Systematic Review

Additional burdens of family caregivers during the COVID‐19 pandemic: A qualitative analysis of social media in Germany

The Impact of the SARS-CoV-2 Pandemic on the Needs of Non-Infected Patients and Their Families in Palliative Care—Interviews with Those Concerned

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