Impact of COVID-19 on patient experience of kidney care: a rapid review.

INTRODUCTION: In March 2020, a pandemic state was declared due to SARS-COV-2 (COVID-19). Patients with kidney disease, especially those on replacement therapies, proved more susceptible to severe infection. This rapid literature review aims to help understand how the pandemic impacted patient experience of kidney care. METHODS: It was conducted in accordance with Cochrane Rapid Review interim guidance. Search terms, 'coronavirus', 'kidney care', and 'patient-reported experience' and terms with similar semantic meaning, identified 1,117 articles in Medline, Scopus, and Worldwide Science. Seventeen were included in the narrative synthesis. RESULTS: The findings were summarised into three themes: remote consultation and telemedicine (n = 9); psychosocial impact (n = 2); and patient satisfaction and patient-reported experience (n = 6). Patients were mostly satisfied with remote consultations, describing them as convenient and allowing avoidance of hospital visits. Anxieties included missing potentially important clinical findings due to lack of physical examination, poor digital literacy, and technical difficulties. Psychosocial impact differed between treatment modalities-transplant recipients expressing feelings of instability and dread of having to return to dialysis, and generally, were less satisfied, citing reduced ability to work and difficulty accessing medications. Those on home dialysis treatments tended to feel safer. Findings focused on aspects of patient experience of kidney care during the pandemic rather than a holistic view. CONCLUSIONS: There was little direct evaluation of modality differences and limited consideration of health inequalities in care experiences. A fuller understanding of these issues would guide policy agendas to support patient experience during future public health crises.

Achieving consensus on psychosocial and physical rehabilitation management for people living with kidney disease.

Background: People living with chronic kidney disease (CKD) need to be able to live well with their condition. The provision of psychosocial interventions (psychological, psychiatric and social care) and physical rehabilitation management is variable across England, as well as the rest of the UK. There is a need for clear recommendations for standards of psychosocial and physical rehabilitation care for people living with CKD, and guidance for the commissioning and measurement of these services. The National Health Service (NHS) England Renal Services Transformation Programme (RSTP) supported a programme of work and modified Delphi process to address the management of psychosocial and physical rehabilitation care as part of a larger body of work to formulate a comprehensive commissioning toolkit for renal care services across England. We sought to achieve expert consensus regarding the psychosocial and physical rehabilitation management of people living with CKD in England and the rest of the UK. Methods: A Delphi consensus method was used to gather and refine expert opinions of senior members of the kidney multi-disciplinary team (MDT) and other key stakeholders in the UK. An agreement was sought on 16 statements reflecting aspects of psychosocial and physical rehabilitation management for people living with CKD. Results: Twenty-six expert practitioners and other key stakeholders, including lived experience representatives, participated in the process. The consensus (>80% affirmative votes) amongst the respondents for all 16 statements was high. Nine recommendation statements were discussed and refined further to be included in the final iteration of the 'Systems' section of the NHS England RSTP commissioning toolkit. These priority recommendations reflect pragmatic solutions that can be implemented in renal care and include recommendations for a holistic wellbeing assessment for all people living with CKD who are approaching dialysis, or who are at listing for kidney transplantation, which includes the use of validated measurement tools to assess the need for further intervention in psychosocial and physical rehabilitation management. It is recommended that the scores from these measurement tools be included in the NHS England Renal Data Dashboard. There was also a recommendation for referral as appropriate to NHS Talking Therapies, psychology, counselling or psychotherapy, social work or liaison psychiatry for those with identified psychosocial needs. The use of digital resources was recommended to be used in addition to face-to-face care to provide physical rehabilitation, and all healthcare professionals should be educated to recognize psychosocial and physical rehabilitation needs and refer/sign-post people with CKD to appropriate services. Conclusion: There was high consensus amongst senior members of the kidney MDT and other key stakeholders, including those with lived experience, in the UK on all aspects of the psychosocial and physical rehabilitation management of people living with CKD. The results of this process will be used by NHS England to inform the 'Systems' section of the commissioning toolkit and data dashboard and to inform the National Standards of Care for people living with CKD.

Midwife-moderated social media groups as a validated information source for women during pregnancy.

BACKGROUND: Widespread use of the internet has fundamentally altered the way people access health information and communicate with health providers. Pregnant women are a group who are particularly highly motivated to seek out information online. However, where mothers actually obtain their information, who they trust to supply it, and whether or not it actually fulfils their needs is often unclear. This paper examines the experiences of women accessing advice and information on pregnancy and childbirth through a dedicated social-media platform, mediated by qualified midwives. The study formed part of a larger research project that focussed on professionally moderated online learning in maternity care, and the role of online communities. This paper reports on aspects of midwife mediated information provision in the context of these online communities. METHODS: Two secret (i.e. private / invitation only) Facebook groups were created. Both groups were moderated by 2 qualified midwives. One group had 17 mothers and the other 14 mothers. Both groups ran for 35 weeks. DATA AND ANALYSIS: The data included the written and spoken words of group participants and midwife-moderators in i) face-to-face (n = 4) and online (n = 4) post-intervention focus groups; ii) one-to-one interviews with group participants and midwife moderators (n = 24); iii) the complete corpus of text-based interaction across both groups; iv) a sub-set of private message sessions (n = 24) between individual participants and midwife-moderators. Thematic analysis was applied to the combined dataset. FINDINGS: Participants found engagement with midwives and other pregnant women via a social media group convenient and accessible. The groups provided a safe space for the sharing and validation of maternity relevant information. Members trusted their midwife-moderators to ensure information was reliable. For many members, the group became the primary source of pregnancy related information. CONCLUSION: Midwife-mediated social media groups offer a highly effective way of providing individualised information provision and social support for pregnant woman. Access to a group can also significantly impact on perceptions of relational continuity.

Midwifery continuity: The use of social media.

BACKGROUND: Continuity models of midwifery care improve women's experiences of care and clinical outcomes, but organisationally driven working practices do not facilitate a continuity model and the midwifery care received by most women is fragmented (Sandall et al., 2016, NHS England, 2016). Little is known about the potential for continuity of midwifery care to be achieved using an electronic platform. This paper examines the experiences of women accessing known midwives through a social media platform and their experiences and perception of continuity of care. METHODS: The study forms part of a larger research project aiming to increase understanding about online social learning within professionally moderated social media based communities. This paper reports specifically the concept of midwifery continuity within the online communities. Two secret Facebook groups consisting of 31 mothers and 4 midwife moderators were created (17 mothers & 2 midwives / 14 mothers & 2 midwives). Primary data included 8 online and face to face focus groups, conducted at approximately 10 week intervals, and 28 individual one to one interviews with members of the online community within six weeks of giving birth. DATA ANALYSIS: A thematic analysis using a priori themes was undertaken. This involved coding data which evidenced relational, informational and management continuity across the entire dataset (28 interviews and 8 focus groups). The analysis was undertaken broadly following the six stages described by Braun and Clarke (2006). FINDINGS: Relational and informational continuity were identified across the data. Relational continuity was evident for both the participants and the midwife moderators; informational continuity was described by the participants. Management continuity was not identified. Continuity through social media use was valued by both the mothers and the midwives. CONCLUSION: Information and relational continuity needs of women can be met using professionally moderated, social media based groups. They may provide an alternative means of facilitating the continuity that is so often lacking in traditional models of care.