key: cord-0903752-rq7ik3n6
authors: Scott, Hannah May; Coombes, Lucy; Braybrook, Debbie; Roach, Anna; Harðardóttir, Daney; Bristowe, Katherine; Ellis-Smith, Clare; Higginson, Irene; Gao, Wei; Bluebond-Langner, Myra; Farsides, Bobbie; Murtagh, Fliss EM; Frase, Lorna K; Harding, Richard
title: COVID-19: impact on pediatric palliative care
date: 2022-02-26
journal: J Pain Symptom Manage
DOI: 10.1016/j.jpainsymman.2022.02.330
sha: dd3e9599d34e267ec3a05db4ad9ef3a3e8a0cca9
doc_id: 903752
cord_uid: rq7ik3n6

CONTEXT: Children and young people (CYP) with life-limiting or life-threatening conditions (LLLTC) and their families are potentially vulnerable during COVID-19 lockdowns due to pre-existing high clinical support needs and social participation limitations. OBJECTIVES: To explore the impact of the COVID-19 pandemic and lockdowns on this population. METHODS: Sub-analysis of an emergent COVID-19 related theme from a larger semi-structured interview study investigating priority pediatric palliative care outcomes. 106 UK-wide purposively-sampled CYP with LLLTC, parent/carers, siblings, health professionals and commissioners. RESULTS: COVID-19 was raised by participants in 12/44 interviews conducted after the UK's first confirmed COVID-19 case. Key themes included loss of vital social support, disruption to services important to families, and additional psychological distress. 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.

Children and young people (CYP) living with life-limiting and life-threatening conditions (LLLTC) have many symptoms and concerns that span health and social care domains 1 . Social connectedness and retaining a degree of normalcy is vital for their quality of life 1 . In the context of the COVID-19 global pandemic CYP with LLLTC and their families in the UK were required to isolate indefinitely, from 29 th March 2020 onwards with no certainty of when restrictions would be lifted due to their 'extremely clinically vulnerable' health status [2] [3] [4] . The primary aim of the qualitative interview phase of the Children's Palliative Care Outcome Scale (C-POS) study was to identify which child-and familycentred outcomes are most important to CYP with LLLTC and their families. In subsequent phases we develop and test items to measure core outcomes for this population, as part of a cross-national programme to advance the science of measurement in paediatric palliative care. The theme of COVID-19 related issues emerged in interviews conducted after the UK's first confirmed COVID-19 case providing a unique opportunity to explore the impact of the pandemic on this population. This brief report describes how the COVID-19 pandemic and lockdown measures impacted CYP with LLLTC and their families.

Health and social care professionals (HSPCs) and CYP, parents/carers and siblings, identified by their palliative care teams were recruited from six hospitals and three children's hospices within the UK. Commissioners of UK pediatric palliative care services were recruited via a national children's palliative care non-governmental organisation and HSCPs recommendations. Inclusion criteria: CYP 5-17 years with any LLLTC; parents/carers with a CYP <18 with any LLLTC; siblings 5-17 years of CYP <18 with any LLLTC; any HSCP with >6 months experience caring for CYP <18 with any LLLTC; commissioners responsible for commissioning UK pediatric palliative care services.

Exclusion criteria: CYP unable to communicate any views or wishes; speaks a language not supported by the NHS Trust translation service; currently enrolled in another study; deemed clinically unable to give consent/assent. Parents/carers and siblings: deemed clinically unable to give consent/assent or speaks a language not supported by the NHS Trust translation service.

CYP and their families were purposively sampled to ensure a wide range of ages and LLLTC.

Granted by the Bloomsbury research ethics committee (HRA:19/LO/0033).

106 semi-structured interviews were undertaken by LC, DB, and AR from March 2019 to September 2020 as part of the larger C-POS study to identify the symptoms and concerns most important to CYP with LLLTC and their families across physical, emotional, social, and spiritual domains of care. 44 interviews (N=16 CYP, 18 parents/carers, four siblings, six commissioners) were conducted after the first UK cases of COVID-19 were confirmed by the Chief Medical Officer on 31st January 2020. All interviews with HSCPs were conducted in 2019. Whilst most were conducted face-to-face before the pandemic, later interviews were remote (telephone or video) following UK lockdown measures introduced in March 2020. Interviews were audio recorded, transcribed verbatim and pseudonymised.

Transcripts were coded by LC, DB, AR, DH, and HS in NVivo (Version 12). Inductive thematic coding used the 5-step process of Framework Analysis: familiarisation, constructing a thematic framework, indexing and sorting, charting, and mapping/interpretation.

COVID-19 related issues, although not directly asked about, were reported in 12 interviews. Of the 12 participants who mentioned COVID-related issues, 2/7 parent/carer interviews were between initial outbreak of COVID-19 and the start of the first UK lockdown on 23 rd March 2020; 3/3 CYP, 5/7 parent/carer, and 2/2 commissioner interviews were conducted after this date but during the early pandemic. To protect anonymity of CYP with rare LLLTC, International Classification of Diseases-10 (ICD-10) chapter headings have been used in lieu of precise diagnosis (see Table 1 ). 

Three main themes were identified that describe the additional impacts experienced by CYP with LLLTC and their families: loss of vital sources of social support, disruption to services important to families, and additional psychological distress.

CYP with LLLTC described their sadness at losing their already limited social contact.

School closures had a significant impact, further isolating CYP from their friends and unsurprisingly, like other children surveyed, CYP with LLLTC also described a loss of normalcy with limited social contact 5 . 

In addition, vital modifications to the home were delayed, and respite provision reduced or cancelled.

"prior to COVID, they have to, they will be doing adaptations to the bathroom. A lack of clear communication from schools also increased anxiety for parents and carers, particularly from specialist education provision where there were different rules in relation to school opening.

CYP with LLLTC and their families have faced additional challenges during the COVID-19 pandemic compared to before the pandemic. These challenges are related to changes in service provision, cancellation of appointments, delays in necessary home adaptations, and loss of both respite and inhome carers, each increasing the burden of care on other family members. For many families, this was compounded by the loss of friend and family support networks, which together had a negative psychological impact on their wellbeing. Many families were worried about COVID-19, but evidence suggests that CYP with 'extremely clinically vulnerable' health status and their families have particular concerns due to CYP being immunocompromised and at greater risk of poorer outcomes [2] [3] [4] .

Health services have faced significant challenges as a result of the pandemic 6 , and the impacts for CYP with LLLTC and their families have been wide ranging. Delays or cancellation of services that are important to families, alongside loss of informal sources of support, have left families feeling isolated. The increased use of telehealth and online consultations has brought opportunity and challenge 3 6 . HSCPs should communicate clearly with families if treatment plans need to change, provide up-to-date information about the impact of COVID-19 on treatment and services, and engage CYP and their families in decision-making processes.

Families also need additional support due to the reduction in respite, home care, and family support, which have led to increased burden of care on families 4 . Where possible, respite providers should consider novel ways in which they can continue to support families, such as through telehealth programmes 3 . The additional burden of care, coupled with isolation, requires timely psychological support by existing teams known to the family.

However, a key limitation of this analysis was the absence of non-English speaking participants in the study meaning issues arising as a result of language barriers were unable to be explored.

This brief report has revealed the ways in which the COVID-19 pandemic and subsequent response has impacted the lives of CYP with LLLTC and their families. The analysis has highlighted the wide ranging and long-lasting impact on family life of social isolation, increased family burden of caring, and disruption and delays to important health and social care provision. The psychological impact of the uncertainty about the pandemic and the future, and loss of support networks on the mental wellbeing of CYP and their families is also evident.

Going forwards, CYP and their families must be informed of the potential impact of the COVID-19 pandemic for them specifically. CYP and their families should also be actively engaged in decisionmaking if treatment plans change. Service providers should carefully review their responses to the pandemic to ensure they are able to continue to assess and support family psychosocial needs. 

Symptoms and Concerns Among Children and Young People with Life-Limiting and Life-Threatening Conditions: A Systematic Review Highlighting Meaningful Health Outcomes. The Patient -Patient-Centered Outcomes Research

COVID-19 Severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infection in children and adolescents: a systematic review of critically unwell children and the association with underlying comorbidities

A Virtual Children's Hospice in Response to COVID-19: The Scottish Experience

No end in sight: The Impact of the Pandemic on Disabled Children, their Parents and Siblings

Rapid Systematic Review: The Impact of Social Isolation and Loneliness on the Mental Health of Children and Adolescents in the Context of COVID-19

Global Experiences of Pediatric Palliative Care Teams During the First 6 Months of the SARS-CoV-2 Pandemic

We thank the European Research Council for the financial support needed to undertake this study. 

RH conceived the project and provided supervision throughout alongside IH, GW, MB-L, BF, FM, LF, CE-S and KB. LC, DB and AR did the data collection and LC, DB, AR, DH and HS performed initial analysis. HS performed further analysis and prepared the manuscript for submission.

This work was supported by the European Research Council's Horizon 2020 programme [Grant ID: 772635].

Permission given for anonymised direct quotes to be used in the report, publications and presentations