Pandemic impact on patients with advanced non-COVID-19 illness and their family carers receiving specialised palliative home care: a qualitative study

Abstract

ObjectivesTo investigate the experiential impact of the COVID-19 pandemic on patients with non-COVID, life-threatening disease and their family carers.DesignAn interpretative qualitative design informed by phenomenological hermeneutics and based on data from in-depth interviews, performed between June and September 2020.SettingPatients receiving specialised palliative home care and their family carers living in Sweden.Participants22 patients (male/female 11/11) and 17 carers (male/female 5/12) aged 50 years and older. All the patients received specialised palliative home care and most were diagnosed with cancer. Inclusion criteria: aged 18 years or older, diagnosed with an incurable life-threatening, non-COVID disease, sufficient strength to participate and capacity to provide informed consent. Participants were selected through a combination of convenient and consecutive sampling.ResultsThe significance of the pandemic for both patients and carers showed a continuum from being minimally affected in comparison to the severe underlying disease to living in isolation with constant fear of becoming infected and falling ill with COVID-19, which some likened to torture.The imposed restrictions on social contact due to the pandemic were particularly palpable for this group of people with a non-COVID-19, life-limiting condition, as it was said to steal valuable moments of time that had already been measured.Most patients and carers found access to specialised palliative home care was maintained despite the pandemic. This care was of paramount importance for their sense of security and was often their sole visiting social contact.ConclusionsIn the pandemic situation, highly accessible support from healthcare and social care at home is particularly important to create security for both patients and carers. Thus, to provide appropriate support, it is important for healthcare and social care personnel to be aware of the great diversity of reactions patients in palliative care and their carers may have to a pandemic threat.

Palliative care for cancer patients during the COVID‐19 pandemic: A narrative synthesis from 36 studies of 16 countries

“…Several patients have reported decreased quality of life and depression because of the COVID‐19 epidemic (Beltran‐Aroca et al, 2021; Dhavale et al, 2020; Mishra et al, 2022; Nyblom et al, 2022; Yennurajalingam et al, 2022; Yildiz Kabak et al, 2021). This change may be related to fear of infection with COVID‐19 (Mishra et al, 2022), fear of disease progression (Yildiz Kabak et al, 2021), and fear of incomplete treatment (Dhavale et al, 2020).…”

“…Many studies have pointed out the increased psychological burden of providing palliative care at special times (de Azeredo Siqueira et al, 2021; Dhavale et al, 2020; Franchini et al, 2021; Santin et al, 2022; Varani et al, 2021). The stress faced by caregivers stems from fear of making mistakes (Dhavale et al, 2020; Franchini et al, 2021), deterioration of their own physical health (Dhavale et al, 2020; Santin et al, 2022), additional tasks, limited support (Santin et al, 2022), fear of contracting COVID‐19 (Nyblom et al, 2022; Santin et al, 2022), the creation of social distance, and financial stress (Santin et al, 2022). One study showed that medical workers have higher rates of psychological morbidity and are more prone to burnout than before (Varani et al, 2021).…”

“…The impact of related policies has made it difficult for patients to access hospitals, resulting in a decrease in institutional admissions and a significant increase in palliative consultation referrals. This situation has made it difficult for institutions to provide and manage palliative care services, and staff have suffered as a result (de Azeredo Siqueira et al, 2021; Dhavale et al, 2020; Franchini et al, 2021; Mishra et al, 2022; Moriyama et al, 2021; Nyblom et al, 2022; Penel et al, 2021; Rahnea‐Nita et al, 2021; Santin et al, 2022; Varani et al, 2021). Many options for improving palliative care during the COVID‐19 epidemic have also been proposed in the literature, including modification of treatment protocols, enhanced caregiver training, use of electronic patient symptom management programs, and use of telemedicine (Adhikari et al, 2021; Almouaalamy et al, 2022; Biswas, Adhikari, Gupta, et al, 2020; Calton et al, 2020; Caraceni et al, 2022; Cardoso et al, 2021; Frydman et al, 2022; Ghoshal et al, 2022; Jacobson et al, 2021; Palma et al, 2021; Rosa et al, 2022; Wujcik et al, 2022).…”

Palliative care need screening and specialised referrals fell during the COVID-19 pandemic: a nationwide register-based study

“…Most patients and carers did, however, not think their contact with the specialised palliative care service was reduced and they valued the contact highly. 18 Danish caregivers of patients in specialised palliative homecare also expressed the fear of themselves or other would pass on COVID-19 to the patient and how it was difficult to get the most out of life due to COVID-19 restrictions. During some period of the pandemic they, also, expressed the frustration of not being able to visit the patient in the hospital and having less physical contact with the palliative home care service.…”

Hospice and Palliative Care during Disasters: A Systematic Review

“…The reasons for this shift appear manifold: Foremost, PC patients themselves did not want to be admitted because they were afraid of catching the infection. Furthermore, they wanted to stay close to the people who were important to them [56,58]. An overall reduction in referrals to hospitals from primary care was observed, as they appear to have been carried out only in particularly complex clinical cases [28,58].…”