The Long Shadow: Collateral Impact and Finding Resilience Amidst a Global Pandemic <i>Pediatric Palliative Care Social Work During COVID-19</i>

Jonas, Danielle; Drouin, Kristin; Greenman, Jennifer; Klein, Victoria; Scanlon, Caitlin; Frechette, Eleanor; Cramer, Lauren McLeod; Eagan, Arielle Wilder; Rusch, Rachel; Joselow, Marsha; Purol, Nicholas

doi:10.1080/15524256.2021.1894312

Cited by 7 publications

(10 citation statements)

References 16 publications

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“…Whereas they typically rely on a host of in-home services and staff 17 , 34 , 35 , 36 and community support, families are now providing care in isolation. 2 Parents also reported isolation as a big problem when at health care facilities due to the limitation in number of family members per patient permitted. 5 As a result of these challenges, parents describe substantial feelings of distress.…”

Section: Discussionmentioning

confidence: 99%

“…The Coronavirus Pandemic (COVID-19) has affected daily life across the world, and this may be accentuated in families caring for seriously ill children. 1 , 2 Families have faced increased material hardships including housing and food insecurities and access to safe child care as a result of COVID-19. 3 , 4 Adverse outcomes observed in otherwise healthy children following the social isolation recommended by the CDC guidelines include delay in access to care, decreased physical activity, increased emotional distress, and increased domestic violence in the home.…”

Section: Introductionmentioning

confidence: 99%

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Parent and Adolescent Perspectives on the Impact of COVID on the Care of Seriously Ill Children

Beight

Helton

Avery

et al. 2022

Journal of Pain and Symptom Management

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Context : Few studies have explored the impact of the Coronavirus Pandemic (COVID-19) on the care of seriously ill children which may be especially affected due to the child's vulnerability, complexity of care, and high reliance on hospital-based care. Objective : To explore parental and adolescent perspectives on the impact of COVID-19 on care of seriously children. Methods : We recruited a convenience sample of families of seriously ill children between September and December 2020. The study involved a semi-structured interview through Zoom followed by an online sociodemographic survey. Interviews were transcribed and coded using the constant comparison method. The sample intended to represent diversity in child age and diagnoses, and family sociodemographic characteristics. Results : Sixty-four families were approached; 29 enrolled (response rate 45%), including 30 parents and three AYAs. Most parents and AYAs identified as white (62%). Some families reported new financial hardships, with 17.2% having difficulty paying bills after March 2020 compared to 6.9% before. Emerging themes from interviews included additional roles parents managed due to cancelled services or shifting to telehealth, increased isolation, high emotional distress due increased in-home demands, uncertainty, and visitor restrictions in medical facilities, and benefits and challenges to telehealth . One positive outcome was the use of a hybrid care model whereby families choose telehealth appointments and in-person services, when necessary. Conclusion : Families caring for seriously ill children during COVID-19 face increased challenges. Health systems should consider long-term telehealth/in-person hybrid care models that have potential to improve access to and satisfaction with care.

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Parent and Adolescent Perspectives on the Impact of COVID on the Care of Seriously Ill Children

Beight

Helton

Avery

et al. 2022

Journal of Pain and Symptom Management

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“…La pandémie de COVID-19 est responsable d’une anxiété accrue, d’un isolement et de problèmes émotionnels ou comportementaux chez les enfants qui éprouvent des vulnérabilités en matière de santé, comme le démontrent les enfants atteints de fibrose kystique ( 1 ), d’autisme ( 2–4 ) et de problèmes de santé mentale ( 5 , 6 ). Ces effets sont attribués aux craintes de contracter la COVID-19 ( 7 ), à la diminution des contacts sociaux ( 8 , 9 ) et à la baisse des mesures de soutien ( 8 , 9 ). Les services en ligne et les services de télésanté ont réduit le stress des familles ( 8 ) (p.…”

unclassified

“…Ces effets sont attribués aux craintes de contracter la COVID-19 ( 7 ), à la diminution des contacts sociaux ( 8 , 9 ) et à la baisse des mesures de soutien ( 8 , 9 ). Les services en ligne et les services de télésanté ont réduit le stress des familles ( 8 ) (p. ex., moins de déplacements pour se rendre à un rendez-vous), mais ont accru les problèmes de santé mentale en raison de transitions comme la diminution des interactions directe ( 8 , 9 ).…”

unclassified

“…Les services en ligne et les services de télésanté ont réduit le stress des familles ( 8 ) (p. ex., moins de déplacements pour se rendre à un rendez-vous), mais ont accru les problèmes de santé mentale en raison de transitions comme la diminution des interactions directe ( 8 , 9 ). En raison des modifications à la prestation des services, les professionnels de la santé se sont inquiétés de la qualité des soins ( 10 ).…”

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Les effets de la pandémie de COVID-19 sur la santé mentale des enfants atteints de problèmes de santé physique ou d’incapacités, des familles et des professionnels de la santé

Nicholas

Zulla

Conlon

et al. 2022

Paediatrics &Amp; Child Health

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Résumé Objectifs La pandémie de COVID-19 a influé sur la santé mentale de la population. Les familles des enfants qui ont des vulnérabilités en matière de santé ont été démesurément touchées par les politiques liées à la pandémie et les perturbations aux services, car elles s’appuient beaucoup sur le système de soins de santé et de services sociaux. Les chercheurs ont établi les répercussions de la pandémie de COVID-19 sur les enfants ayant des vulnérabilités en matière de santé physique et des incapacités, les familles et les professionnels de la santé. Méthodologie Des enfants ayant diverses vulnérabilités en matière de santé (transplantation cardiaque, affections respiratoires, anémie falciforme, trouble du spectre de l’autisme, troubles de santé mentale et approche de la fin de vie en raison d’une série de causes sous-jacentes), leurs parents et leurs professionnels de la santé ont participé à des entrevues semi-structurées. Les chercheurs ont utilisé des méthodes d’analyse qualitative et en ont extrait les thèmes liés aux effets et les recommandations en vue d’améliorer la pratique. Résultats Au total, 262 participants (30 enfants, 76 parents, 156 professionnels de la santé) ont été interviewés. Les enfants ont décrit leur solitude et leur isolement, les parents, leur épuisement, et les professionnels de la santé, la pression ressentie et un sentiment de détresse morale. Les thèmes reflétaient les effets de la pandémie sur la santé mentale des enfants, des familles et des professionnels de la santé, de même que les ressources insuffisantes pour soutenir la santé mentale, les influences organisationnelles et politiques qui ont façonné la prestation des services et les recommandations pour améliorer la prestation de ces services. Conclusion Les restrictions sanitaires imposées par la pandémie et les modifications aux soins ont eu de profondes répercussions sur la santé mentale des enfants qui ont des vulnérabilités en matière de santé, les familles et les professionnels de la santé. Les recommandations incluent la rédaction et l’adoption d’information ciblée sur la pandémie et la mise en œuvre de services de soutien en santé mentale. Ces résultats amplifient la nécessité de renforcer les capacités, y compris des stratégies proactives et la planification de mesures d’atténuation du risque dans l’éventualité d’une future pandémie.

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How did the COVID-19 Pandemic Affect Palliative Care Social Work Services? A Scoping Review

Roulston

Gerson

Csikai

et al. 2023

The British Journal of Social Work

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The SARS-CoV-2 coronavirus-19 (COVID-19) generated life-defining challenges on a global level, affecting healthcare professionals, who faced the same imminent public health threat as patients and families. Reduced face-to-face contact, wearing personal protective equipment and enforcing visitor restrictions generated moral distress in healthcare professionals, unable to provide holistic care. This scoping review explored the impact of the COVID-19 pandemic on palliative care social workers (PCSWs). PubMED, CINAHL and PsycINFO were systematically searched. Empirical studies and reflective articles about palliative care social work during the pandemic were screened. Data extraction used Arksey and O’Malley’s framework. Thematic analysis was underpinned by Braun and Clarke for identifying, analysing and reporting patterns. From 706 citations retrieved, 125 were selected for full-text review and 32 were included in the scoping review. Thematic analysis revealed three themes: (i) moral distress, (ii) transitioning and (iii) inequality. Implementing visitor restrictions caused moral distress and raised questions about their justification. Not being present at the time of death generated feelings of anger among bereaved family members. Virtual communication replaced face-to-face contact, yet improved access to Telehealth. Inequalities were illuminated and PCSWs advocated for disadvantaged populations, worked creatively to minimise suffering or stigma and supported peers.

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The Long Shadow: Collateral Impact and Finding Resilience Amidst a Global Pandemic Pediatric Palliative Care Social Work During COVID-19

Cited by 7 publications

References 16 publications

Parent and Adolescent Perspectives on the Impact of COVID on the Care of Seriously Ill Children

Parent and Adolescent Perspectives on the Impact of COVID on the Care of Seriously Ill Children

Les effets de la pandémie de COVID-19 sur la santé mentale des enfants atteints de problèmes de santé physique ou d’incapacités, des familles et des professionnels de la santé

How did the COVID-19 Pandemic Affect Palliative Care Social Work Services? A Scoping Review

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