ABSTRACT
BACKGROUND: Studies show that young people (YP) with chronic kidney disease do less well than their well peers in terms of mental health and employability. In the UK 30% of YP on renal replacement therapy have mental health issues compared to 15% of the general population and more are unemployed compared with their well peers. Many of the issues start in childhood as studies show that children with chronic kidney disease have significant psychosocial issues including: • Depression • Anxiety • Educational difficulties • Relationship issues • Lowself-esteem • Social isolation, family dependency • Professional restriction To address these issues, we developed the PEEER project to help improve Patient Empowerment, self-Esteem, Employability and Resilience. • PEEER brings YP together to participate in fun activities to help build selfesteem, develop an 'I can do' attitude, build a peer support group and reduce the sense of isolation patients feel. • PEEER offers a formal peer support mentorship and peer ambassador programme for those who wish to participate. Helping others will help the mentors and their peers by improving the self-esteem and psyche of both parties. PEEER offers the Duke Of Edinburgh Award and ASDAN to provide a range of nationally approved qualifications based around the development of individual and social skills leading to improved chances of employment. • Volunteering is an integral part of PEEER that helps to strengthen and improve self-esteem. • PEEER directly supports YP learn digital skills so they can develop appropriate information resources to help other young people, families and healthcare professionals. Pre-coronavirus disease (COVID-19) PEEER youth worker support was delivered face-to-face (F2F) in a 1:1 setting or group sessions in the hospital, youth spaces, or educational settings. With the onset of lockdown due to the COVID-19 pandemic from 23 March 2020 PEEER youth worker support was adapted to be delivered virtually on the ZOOM platform to meet the needs of CYP. AIMS: To assess the effectiveness of PEEER youth work project in meeting the psychosocial needs of children and young people with kidney disease when delivered virtually compared with F2F. METHOD: Group 1: Pre-COVID-19 lockdown: 1 January 2020-23 March 2020 CYP and their families received youth worker support F2F. Group 2: During COVID-19 lockdown: 23 March 2020-31 December 2020 youth work was delivered virtually. CYP in Groups 1 and 2 received 1:1 sessions, fun group activities and workshops. Feedback was collected on the effectiveness of these sessions. RESULTS: CYP: Group 1 n = 105. Group 2 n = 639. In Group 2 there was a 102% increase/month in CYP accessing PEEER events. In both Groups, 100% said they enjoyed the sessions, would like to attend future sessions. CYP in both Groups felt part of a friendship group, said the sessions allowed them to socialize with their peers. CYP in both Groups felt more confident, more independent and good about themselves. (See Table 2.) CONCLUSION: PEEER youth worker support is effective and can meet the psychosocial needs of CYP when delivered virtually and F2F. More work is needed on a hybrid approach of F2F and virtual delivery. (Figure Presented).
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. Objectives To understand the concerns and decision-making in CYA during the first lockdown, and perform subgroup analysis on shielded vs non-shielded patients Methods UK wide online survey co-produced with patients was conducted in May 2020 among CYA aged 12-30, or parents of children aged <18 years with any degree of chronic kidney disease. Participants answered qualitative open text alongside quantitative closed questions. Thematic content analysis using a three-stage coding process was conducted. Results 118 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%), that their child would catch the virus from them (64%) and adverse impact on other children at home (65%). CYA thematic analysis revealed: strong belief of becoming seriously ill if they contract COVID-19, lost educational opportunities, socialisation, and career development, and frustration at 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 is the first study specifically surveying CYA with kidney conditions and their parents' experience of the COVID-19 pandemic during lockdown. We found substantial concern and need for accurate tailored advice for CYA based on individualised risks to improve shared decision making.