赵蕊 , 周清 , 沈霞 , 张慧 , 翟亦晖 , 顾莺 , 沈茜 , 徐虹
复旦大学附属儿科医院
Background:
Disruptions of healthcare are ubiquitous with the COVID-19 spread and its attendant containment measurements. Peritoneal dialysis (PD) is a preferred dialysis modality for children with end-stage kidney diseases (ESKD) [1] and gains more popularity and attention in the COVID-19 era for its lower risks of acquiring COVID-19 compared with hemodialysis [2],[3]. However, caring for children on PD requires persistent efforts and may encounter many challenges, especially during the early stage of the COVID-19 outbreak with strong containment measurements[4]. Understanding the experience of caregivers with a child on PD during this special time will potentially facilitate the decision-making of dialysis modality and better support the home care of PD.
Objectives: To describe home care experience, challenges, coping strategies of caregivers with children on automatic peritoneal dialysis in mainland China during the early stage of the COVID-19 outbreak.
Methods: The qualitative descriptive approach is an important tool to study questions focusing on experience and perspectives[5]. We adopted this method because it aligns with the research aim of learning experience and gaining insights from families with children on PD. From February 2th to 10th, 2020, a purposive sample of 14 families with a child on automatic peritoneal dialysis from 11 provinces in mainland China was recruited with the maximum variation in COVID-19 caseload. The care routine, stress, and coping strategies of caregivers of children on peritoneal dialysis were collected using semi-structured telephone interviews. All interviews were recorded and transcribed verbatim and analyzed using thematic analysis. The study was reported according to the Consolidated Criteria for Reporting Qualitative Research (COREQ)[6]. To ensure the trustworthiness and credibility of the study[7], we adopted multiple approaches. The two researchers (RZ and QZ) who conducted the data collection and analysis had already established rapport and empathy with the participants before the interviews to gain depth of information. The severity of the coronavirus spread was considered with participants from various parts of China. The interview transcripts and the interpretation were sent back to caregivers for member-checking. RZ and QZ conducted initial coding of the data separately and then discussed and compared the codes and themes. Codes and themes were cross-checked within these two researchers (RZ and QZ) until the consensus was reached. Saturation was reached after twelve interviews, and we conducted another two to ensure saturation.
Findings: Four key themes were defined: (1) concerns of PD treatment intertwined with worries of COVID-19; (2) remaining a sense of normality in the middle of the challenges; (3) stay safe; (4) stay positive and carry on.
Conclusions: Families with children on automatic peritoneal dialysis addressed the stress from COVID-19 and its containment measures by closely adhering to COVID-19 preventative measures, actively adjusting the mentality, and managed to remain a sense of normality during the outbreak. Healthcare staff has played a key role in offering information and resources to sustain high-quality peritoneal dialysis care. Institutional support should be ready to address the logistic and financial hardships to ensure the continuous care of children on peritoneal dialysis.
PS:I deleted part of the abstract due to the character limitations here. Full version of the abstract is attrached. Thank you.