Children with medical complexities: their distinct vulnerability in health systems’ Covid-19 response and their claims of justice in the recovery phase

Lignou, Sapfo; Sheehan, Mark

doi:10.1007/s11019-022-10119-7

Cited by 5 publications

(2 citation statements)

References 21 publications

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“…The importance of social support in this context is further emphasized by the potential long-term impact of the COVID-19 pandemic on CSHCN due to persisting unequal access to treatment (e.g., financial barriers in accessing telehealth), associated poor health outcomes such as developmental delays or delays in diagnosis and treatment, and dependence on multidisciplinary support. These indirect impacts of the pandemic in turn increase the vulnerability of an already particularly vulnerable group leading to calls that “inequities and prior disadvantage […] [be] addressed in current policies regarding the recovery of healthcare services” ( 19 ) (p. 18).…”

Section: Introductionmentioning

confidence: 99%

Perceived social support and characteristics of social networks of families with children with special healthcare needs following the COVID-19 pandemic

Geweniger,

Barth,

Haddad

et al. 2024

Front. Public Health

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BackgroundChildren with special healthcare needs (CSHCN) require more support than the average of their peers. Support systems for CSHCN were particularly affected by pandemic control measures. Perceived social support is a resource for health and wellbeing for CSHCN and their families. Associations of social support, mental health and socioeconomic status (SES) have been described. This study aims to (1) assess perceived social support in families with and without CSHCN; (2) describe structure and types of social networks of families with and without CSHCN; and (3) explore associations between perceived social support, disease complexity, child and caregiver mental health, and SES.MethodsThis is the third of a sequential series of cross-sectional online surveys conducted among caregivers of children ≤ 18 years in Germany since the beginning of the COVID-19 pandemic, administered between 1st December 2022 and 10 March 2023. The Brief Social Support Scale (BS6) assessed perceived social support. Child and parental mental health were assessed using the Strengths and Difficulties Questionnaire (SDQ) and WHO-5 Wellbeing index. The CSHCN-Screener identified CSHCN. Descriptive statistics and linear regression modeling assessed associations between perceived social support, parent-reported child mental health problems, disease complexity, caregiver mental wellbeing and SES.ResultsThe final sample included 381 participants, among them 76.6% (n = 292) CSHCN. 46.2% (n = 176) of caregivers reported moderate, i.e., at least occasional social support. Social support was largely provided by informal social networks consisting of partners, relatives and neighbors/friends. Linear regression modeling revealed associations of lower perceived social support with higher disease complexity of the child, lower caregiver mental wellbeing, lower SES and increasing caregiver age.ConclusionThe results of this study describe inequalities in perceived social support according to disease complexity of the child, caregiver mental health and socioeconomic status. They highlight the importance of social support and support networks as a resource for wellbeing of caregivers and CSHCN. Moving on from the COVID-19 pandemic, recovery strategies should focus on low-threshold interventions based in the community to improve social support for families with CSHCN and actively involve caregivers in identifying needs and co-creating new approaches.

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Section: Introductionmentioning

confidence: 99%

Perceived social support and characteristics of social networks of families with children with special healthcare needs following the COVID-19 pandemic

Geweniger,

Barth,

Haddad

et al. 2024

Front. Public Health

View full text Add to dashboard Cite

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“…Children who experience multiple interacting and often compounding disadvantages are more likely to experience diminished health and quality of life and reduced opportunities to experience a range of other important goods, 5 such as attending school, socialising with friends and developing skills and abilities necessary to maximise developmental potential and pursue life goals. Given the cumulative effects on long-term life prospects, health and care inequalities in childhood may translate into social and economic inequalities over time.…”

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confidence: 99%

Healthcare prioritisation and inequitable inequalities: why a child health perspective should be incorporated into the current NHS guidance

Lignou

Wolfe

2023

Arch Dis Child

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Accessing healthcare during the COVID-19 pandemic: a qualitative exploration of the experiences of parents and carers of children with chronic illness to inform future policies in times of crisis

Reed

Wolfe

Greenwood

et al. 2023

BMC Health Serv Res

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Background The purpose of thispaper is to explore the experiences of parents and carers of children with chronic health conditions in accessing healthcare during the Covid-19 pandemic. Children with chronic conditions typically rely on both planned and unplanned care, and contact with healthcare professionals over extensive periods of time. Their distinct care needs render these children vulnerable to even to minor changes in healthcare provision. The wide-ranging care disruptions during the pandemic were therefore likely drastically to affect their health and wellbeing; an assessment of the effects of Covid-19 policies on healthcare access and quality of care delivered for this group is needed. Methods From 25/01/2022 to 25/05/2022, four focus groups were held with parents/carers of children with diabetes, neurodivergence, mental health conditions, and medical complexities to explore their experiences in navigating the healthcare system during the pandemic. Interviews were transcribed and then subjected to thematic analysis using NVivo qualitative research software. Results Our results indicate that children with chronic health conditions (and their parents/carers) experienced difficulties accessing healthcare during the pandemic. Problems with late diagnosis, prolonged waiting times, and deficiencies with telemedicine were identified, as were impacts of healthcare disruptions on children’s wellbeing, and the wellbeing of wider families. We found that children with neurodivergence and those with mental health conditions were particularly affected with their health needs repeatedly de-prioritised. Furthermore, the loss of contact with multi-specialty clinical teams profoundly affected parents and carers, leaving them feeling isolated in managing their children’s health. These diminished relationships became another vector for uncertainty in supporting children’s health. Conclusion The effects of healthcare disruptions on the welfare of children with chronic conditions (and their families), are well evidenced in this work, providing deeper understandings of the relationships between these children, their families and clinicians. The evidence in this paper aims to inform future policy and ethical guidelines so that the needs of children with long-term health conditions can be properly considered in times of crisis.

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Children with medical complexities: their distinct vulnerability in health systems’ Covid-19 response and their claims of justice in the recovery phase

Cited by 5 publications

References 21 publications

Perceived social support and characteristics of social networks of families with children with special healthcare needs following the COVID-19 pandemic

Perceived social support and characteristics of social networks of families with children with special healthcare needs following the COVID-19 pandemic

Healthcare prioritisation and inequitable inequalities: why a child health perspective should be incorporated into the current NHS guidance

Accessing healthcare during the COVID-19 pandemic: a qualitative exploration of the experiences of parents and carers of children with chronic illness to inform future policies in times of crisis

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