Abstract
Background/aims: Children and young people (CYP) with life-limiting or life-threatening conditions (LLLTC) represent a group with complex care needs that are met by multiple services and thus may be subject to particular vulnerabilities.
Aim: To explore the impact of the COVID-19 pandemic and lockdowns on CYP with LLLTC and their families in the UK.
Methods: Sub-analysis of an emergent COVID-19 theme from a larger UK-wide semi-structured interview study investigating priority paediatric palliative care outcomes with key stakeholders (n=106 participants).
Results: COVID-19 was raised in 12/44 interviews conducted after the UK’s first confirmed COVID-19 case.
CYP with LLLTC and their families had to shield during lockdowns and faced additional challenges regarding service provision changes, appointment cancellation, delays in necessary home adaptations, and loss of both respite and in-home carers. This increased the workload of care on other family members and was compounded by loss of friend and family support networks, negatively impacting their psychological wellbeing. Many families were worried about COVID-19, but for CYP whose LLLTC increased vulnerability to infection, this was intensified.
Conclusions: Continued delivery of child- and family-centred palliative care requires innovative assessment and delivery of psycho-social support. Disruptions within treatment and care providers may compound support needs, requiring co-ordination for families facing multi-agency delays.
Aim: To explore the impact of the COVID-19 pandemic and lockdowns on CYP with LLLTC and their families in the UK.
Methods: Sub-analysis of an emergent COVID-19 theme from a larger UK-wide semi-structured interview study investigating priority paediatric palliative care outcomes with key stakeholders (n=106 participants).
Results: COVID-19 was raised in 12/44 interviews conducted after the UK’s first confirmed COVID-19 case.
CYP with LLLTC and their families had to shield during lockdowns and faced additional challenges regarding service provision changes, appointment cancellation, delays in necessary home adaptations, and loss of both respite and in-home carers. This increased the workload of care on other family members and was compounded by loss of friend and family support networks, negatively impacting their psychological wellbeing. Many families were worried about COVID-19, but for CYP whose LLLTC increased vulnerability to infection, this was intensified.
Conclusions: Continued delivery of child- and family-centred palliative care requires innovative assessment and delivery of psycho-social support. Disruptions within treatment and care providers may compound support needs, requiring co-ordination for families facing multi-agency delays.
| Original language | English |
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| Publication status | Published - 2022 |
| Event | 12th World Research Congress of the European Association for Palliative Care - Virtual Duration: 18 May 2022 → 20 Aug 2022 |
Conference
| Conference | 12th World Research Congress of the European Association for Palliative Care |
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| Period | 18/05/2022 → 20/08/2022 |
