COVID-19: experiences of lockdown and support needs in children and young adults with kidney conditions.
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ABSTRACT: Background
During the initial COVID-19 pandemic, young United Kingdom (UK) kidney patients underwent lockdown and those with increased vulnerabilities socially isolated or 'shielded' at home. The experiences, information needs, decision-making and support needs of children and young adult (CYA) patients or their parents during this period is not well known.Methods
A UK-wide online survey co-produced with patients was conducted in May 2020 amongst CYA aged 12-30, or parents of children aged < 18 years with any long-term kidney condition. Participants answered qualitative open text alongside quantitative closed questions. Thematic content analysis using a three-stage coding process was conducted.Results
One-hundred and eighteen CYA (median age 21) and 197 parents of children (median age 10) responded. Predominant concerns from CYA were heightened vigilance about viral (68%) and kidney symptoms (77%) and detrimental impact on education or work opportunities (70%). Parents feared the virus more than CYA (71% vs. 40%), and had concerns that their child would catch the virus from them (64%) and would have an adverse impact on other children at home (65%). CYA thematic analysis revealed strong belief of becoming seriously ill if they contracted COVID-19; lost educational opportunities, socialisation and career development; and frustration with the public for not following social distancing rules. Positive outcomes included improved family relationships and community cohesion. Only a minority (14-21% CYA and 20-31% parents, merged questions) desired more support. Subgroup analysis identified greater negative psychological impact in the shielded group.Conclusions
This survey demonstrates substantial concern and need for accurate tailored advice for CYA based on individualised risks to improve shared decision making.
SUBMITTER: Tse Y
PROVIDER: S-EPMC7979448 | biostudies-literature |
REPOSITORIES: biostudies-literature
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2021-09-22 | GSE166190 | GEO
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Project description:To reduce transmission of the coronavirus disease 2019 (COVID-19), many countries implemented lockdowns, causing the closure of childcare services. This study was designed to evaluate the impact of the COVID-19 lockdown in March-April 2020 on children, adolescents, and young adults with Prader-Willi syndrome (PWS) living in Germany. We recruited 180 participants with a genetically confirmed PWS. All families completed a questionnaire, and participants underwent a post-lockdown assessment; the last examination before the lockdown was determined as the pre-lockdown assessment. We used bivariate analyses to compare pre- and post-lockdown outcomes. Weight standard deviation scores (SDSPWS) and body mass index (BMI)-SDSPWS remained stable or even decreased in some age groups. A statistically significant gain in lean body mass (LBM) was found in all groups <18 years of age. We observed an increase in IGF-I and IGFBP-3 concentrations without a significant change in growth hormone (GH) dosage. Most families (95.4%) reported set mealtimes and implementation of structured activities (72.2%) during the lockdown period. We therefore suggest that the favorable development of weight/BMI and LBM was caused by an interplay of a suspected enhanced GH administration and continuous parental commitment. However, more intense behavioral problems were observed in 45.7%, which persisted post-lockdown in 33.7%.
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Project description:The COVID-19 pandemic continues to affect the world. Wuhan, the epicenter of the outbreak, underwent a 76-day lockdown. Research has indicated that the lockdown negatively impacted the quality of life of older individuals, but little is known about their specific experiences during the confinement period. Qualitative interviews were conducted with 20 elderly residents of Wuhan, aged 65 to 85, who experienced mandatory isolation throughout the pandemic. The interviews centered around three stages of experiences: the Early Lockdown stage (the first week of lockdown after the government implemented the lockdown policy in January 2020), Infection During Lockdown stage (from February to April 2020 when participants were affected by the lockdown), and the Post-Lockdown stage (after April 2020 when the government lifted the lockdown policy). We found that older adults experienced different core themes during each lockdown stage. In the Early Lockdown stage, they felt nervousness and fear while searching for information. During the Lockdown and Infection Stage, they relied on reciprocal support and adjusted to new lifestyles. In the Post-Lockdown stage, they expressed cautions, trust, and gratitude. The finding highlights the evolving emotions and coping strategies of older adults throughout the lockdown phases. This study has yielded valuable insights into the adaptations of behavior and the importance of social interactions, specifically emphasizing the significance of healthcare among the elderly population.
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Project description:BackgroundThe end of active treatment is a period of high stress for young people with cancer, but limited literature exists about their information and support needs during this phase. This study aimed to understand the needs of young people with cancer, how these needs are currently being met, and how best to provide information and support at the end of active treatment.MethodsThis was a multi-stage, mixed methods study exploring the end of treatment experience from the perspectives of young people, and the healthcare professionals caring for them. Semi-structured interviews were undertaken with healthcare professionals, which informed a survey administered nationally. Subsequently, semi-structured interviews were conducted with young people. These combined results informed a co-design workshop to develop recommendations.ResultsTelephone interviews were conducted with 12 healthcare professionals and 49 completed the online survey. A total of 11 young people aged 19-26 years (female = 8; 73%) were interviewed. The stakeholder workshop was attended by both healthcare professionals (n = 8) and young people (n = 3). At the end of treatment young people experience numerous ongoing physical issues including pain, fatigue and insomnia; in addition to a range of psychosocial and emotional issues including anxiety, fear of recurrence and isolation. The top three priorities for end of treatment care were: earlier provision and preparation around on-going impact of cancer and cancer treatment; standardised and continued follow-up of young people's emotional well-being; and development of more information and resources specific to young people.ConclusionThe access and availability of appropriate information and sources of support at the end of treatment is variable and inequitable. Young people's needs would be more effectively met by timely, structured and accessible information, and support provision at the end of treatment to both prepare and enable adaptation across their transition to living with and beyond cancer. This will require both organisational and practical adjustments in care delivery, in addition to a renewed and updated understanding of what the 'end of treatment' transition process means.
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Project description:BACKGROUND:As one of the 4 United Kingdom national centres for Lysosomal Storage Disorders, Birmingham Children's Hospital (BCH) cares for 49 patients with a mucopolysaccharide (MPS) disorder. Presently, their oral health needs have never been fully investigated. Enzyme therapies are revolutionising medical treatment, and will prolong life expectancy. Therefore, oral health and its impact on quality of life are increasingly important. HYPOTHESIS:Patients with an MPS disorder have greater oral health needs in comparison with the general population. DESIGN:Forty-six patients with an MPS disorder were investigated for caries, gingival health and enamel opacities. Questionnaires to establish the utilisation of dental services and assess the perceived difficulties in achieving adequate oral health care were completed. RESULTS:Patients with an MPS disorder have specific oral health needs depending on the type of MPS experienced. This study found 76% of patients with MPS IV had experienced dental caries and they all showed evidence of a generalised unspecified enamel defect. Subjects with MPS I, II and III did not have an increased caries rate; 50% of the study group had received dental treatment in the past, of which 74% (17, n = 23) required a general anaesthetic. CONCLUSION:The MPS disorders can have a significant effect on the developing dentition. Subjects with MPS IV do have an increased oral health need in comparison with the general population and the other MPS groups due to their increased caries rate and enamel defects. Further research is required to fully assess their needs and investigate any structural tooth defects.
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