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Introduction Information on care home residents in England is captured in numerous data sets (care home records, General Practitioner records, community nursing, etc.) but little of this information is currently analysed in a way that is useful for care providers, current or future residents and families or that realises the potential of data to enhance care provision. The DACHA study aimed to develop and test a minimum data set (MDS) which would bring together data that is useful to support and improve care and facilitate research. It is that utility that underscores the importance of meaningful public involvement (PI) with the range of groups of people affected. This paper analyses the involvement of family members of care home residents and care home staff through a PI Panel. Objectives The objective for the PI activities was to consistently bring the knowledge and perspectives of family members and care home staff to influence the ongoing design and conduct of the DACHA study. Methods The bespoke methods of PI included a dedicated PI team and a PI Panel of public contributors. Meetings were recorded and minutes agreed, resulting actions were tracked and reflections on the PI recorded. A democratic, social relations approach was used to frame the analysis. Results A PI panel met 17 times. All meetings included both family members and care home staff. Analysis of the records and reflections developed the following themes about the operation of the PI: deepened understanding of the data environment in care homes; Influence on the pilot MDS; aiming for best research practices with care homes; personal/professional development for PI members; expectations of the project. Learning points for future research projects are developed. Conclusions PI shaped the design and conduct of the DACHA study, grounding it in the needs and perspectives of people using and providing social care. Data research has a huge responsibility to accurately incorporate relevant public perspectives. There is an implicit assumption that records and data are objective and ‘speak for themselves’ however there can be unintended consequences from introduction of new data requirements in practice. Patient or Public Contribution Public contributors to this manuscript include family members of older people living in care homes and staff of care homes. The wider study also involved as the public, older people living in care homes. Public contributors helped develop the project, contributed throughout the conduct of the study and some chose to be involved in preparing this manuscript.

Background In care home research, residents are rarely included in patient and public involvement and engagement (PPIE) despite their lived experiences of day-to-day care. This paper reports on a novel approach to PPIE, developed in response to Covid-19, and utilised in a large UK-based study focused on care homes. PPIE sessions were facilitated on behalf of the research team by Activity Providers (APs) already working within the care homes. This paper provides an account of how PPIE with care home residents can be achieved. Methods An exploratory design was used to see if it was possible to support “in-house” PPIE, with researchers working at a distance in partnership with care home staff. The National Activity Providers Association recruited five APs working in care homes. A series of optional discussion or activity sessions were developed by the research team in partnership with APs, tailored to reflect the research topics of interest and to make sessions accessible to residents with differing needs. Results APs facilitated four rounds of PPIE with up to 56 residents per topic, including individuals living with cognitive and communication impairments. Topics discussed included residents’ views on data use, measuring quality of life and the prioritisation of care-related data for study collection. Feedback from the residents was observed to have unexpected and positive changes to participating care homes’ practice. APs valued participation and working with researchers. They identified acquisition of new skills and insights into residents’ thoughts and preferences as direct benefits. Challenges included time pressures on APs and managing emotive feedback. APs were able to approach residents at times convenient to them and in ways that best suited their individual needs. PPIE with residents provided different perspectives, particularly with respect to the importance of different types of data, and constructive challenge about some of the research team’s assumptions. Conclusions PPIE with APs as research partners is a promising approach to working in an inclusive and participatory way with care home residents. The voices of older care home residents, including those living with cognitive or communicative impairments, are important for the successful and meaningful completion of research. Plain English summary In recent years there has been increasing interest in research relating to care homes. It is relatively rare that care home residents are given the chance to influence this research; often, family members or care home staff are asked to speak on their behalf. Research can influence residents’ future care, and it is important to find ways of involving residents in research that are meaningful and enjoyable. This research paper discusses a new approach to involving care home residents in research. It begins by recounting how the approach came about, then covers how well it has worked so far, finally reflecting on the benefits and challenges of working in a new way. The researchers originally planned to go into care homes themselves to speak to residents, but with the onset of the Covid-19 pandemic this was no longer possible. Instead, Activity Providers already working in care homes were recruited via the National Activity Providers Association (NAPA) to help. They used activities and discussion prompts developed with the research team to speak to residents about the study. The research team hoped to make getting involved in research meaningful and interesting for residents. The team also wanted to make sure that as many people as possible living with conditions like dementia could get involved too. Comments and suggestions from residents were fed back to the research team to help them make decisions about how the research should be done.

IntroductionInformal carers play a key supportive role for patients with Chronic Obstructive Pulmonary Disease. The care they provide also plays a vital role in relieving pressure on health and social services. However, caring can have a considerable impact on health and wellbeing and carers may have unidentified support needs that could be a target for intervention. Literature on the support needs of these carers has not been fully synthesized, and our knowledge of the comprehensiveness of the Carer Support Needs Assessment Tool (CSNAT) for these carers is limited.MethodsEnglish language studies published between 1997–2017 were identified against predetermined inclusion/exclusion criteria through searches of MEDLINE, CINAHL, EMBASE, CDSR, ASSIA, PsycINFO and Scopus. Further studies were identified through searching reference lists and citations of included papers. Papers were critically appraised and data extracted and synthesised by two reviewers. Identified needs were mapped to CSNAT items.Results24 studies were included. Results suggest that carers have support needs in a range of domains including physical, social, psychological and spiritual. Many of these needs are unmet. Particular areas of concern relate to: prolonged social isolation, accessing services, emotional support and information needs.Findings also suggest additional CSNAT items may be required in order to encompass the full range of needs of this group, particularly relating to difficulties within patient-carer relationships and carer-clinician relationships.ConclusionBased on this review, there is evidence to suggest that COPD carers would benefit from identification and response to their support needs by healthcare professionals but to enable this the CSNAT requires additional items. Future planned work will develop these items with COPD carers.

IntroductionInformal carers play a key supportive role for patients with chronic obstructive pulmonary disease (COPD) but with considerable impact on their health and wellbeing.1 2 The literature on support needs of these carers has not been fully synthesised and our knowledge of the comprehensiveness of the Carer Support Needs Assessment Tool3 (CSNAT) for carers of patients with COPD is limited.AimTo identify relevant carer support needs from the published literature in order to explore the comprehensiveness of the CSNAT for carers of patients with COPD.MethodsEnglish language studies published between 1997–2017 were identified against predetermined inclusion/exclusion criteria through searches of MEDLINE, CINAHL, EMBASE, CDSR, ASSIA, PsycINFO and Scopus. Further studies were identified through searching reference lists and citations of included papers. Papers were critically appraised and data extracted and synthesised by two reviewers. Identified needs were mapped to CSNAT items.Results24 studies were included in the review. Preliminary results (synthesis ongoing: completes September 2018) indicate that carers have support needs in a range of domains that include physical psychological spiritual and social needs. Early findings suggest additional CSNAT items may be required in order to encompass the full range of needs of this group particularly relating to difficulties within the patient-carer relationship and accessing services.ConclusionBased on preliminary results there is evidence to suggest the need for additional CSNAT items for COPD carers and that these carers would benefit from identification and response to their support needs by healthcare professionals to improve carer support.References. Cruz J, Marques A, Figueiredo D. Impacts of COPD on family carers and supportive interventions: A narrative review.Health and Social Care in the Community2017;25(1):11–25.. Grant M, Cavanagh A, Yorke J. The impact of caring for those with chronic obstructive pulmonary disease (COPD) on carers’ psychological well-being: A narrative review. International Journal of Nursing Studies2012;49:1459–1471.. Ewing G, Grande G. The CSNAT2018. Available at: http://csnat.org/ (Accessed: 29/05/18)