The provision of person‐centred care for care home residents with stroke: An ethnographic study
2022; Wiley; Volume: 30; Issue: 6 Linguagem: Inglês
10.1111/hsc.13936
ISSN1365-2524
AutoresEleanor Stevens, Stephanie G. Clarke, Jean Harrington, Jill Manthorpe, Finbarr C. Martin, Catherine Sackley, Christopher McKevitt, Iain Marshall, David Wyatt, Charles Wolfe,
Tópico(s)Dementia and Cognitive Impairment Research
ResumoHealth & Social Care in the CommunityVolume 30, Issue 6 p. e5186-e5195 ORIGINAL ARTICLEOpen Access The provision of person-centred care for care home residents with stroke: An ethnographic study Eleanor Stevens MPH, Corresponding Author Eleanor Stevens MPH eleanor.stevens@kcl.ac.uk orcid.org/0000-0002-1578-8449 School of Life Course & Population Sciences, King's College London, London, UK Correspondence Eleanor Stevens, School of Life Course & Population Sciences, 5th Floor, Addison House, Guy's Campus, 18-20 Newcomen Street, London, SE1 1UL, UK. Email: eleanor.stevens@kcl.ac.ukSearch for more papers by this authorStephanie G. Clarke BSc (Hons), Stephanie G. Clarke BSc (Hons) School of Life Course & Population Sciences, King's College London, London, UK Guy's and St Thomas' NHS Foundation Trust, London, UK University Hospitals Birmingham, Department of Physiotherapy, Birmingham, UKSearch for more papers by this authorJean Harrington PhD, Jean Harrington PhD School of Life Course & Population Sciences, King's College London, London, UKSearch for more papers by this authorJill Manthorpe MA, Jill Manthorpe MA orcid.org/0000-0001-9006-1410 National Institute for Health and Care Research (NIHR) Policy Research Unit in Health & Social Care Workforce, King's College London, London, UKSearch for more papers by this authorFinbarr C. Martin MBBS MRCP MSc MD FRCP FRCSLT, Finbarr C. Martin MBBS MRCP MSc MD FRCP FRCSLT orcid.org/0000-0002-6911-3498 School of Life Course & Population Sciences, King's College London, London, UK Guy's and St Thomas' NHS Foundation Trust, London, UKSearch for more papers by this authorCatherine Sackley PhD, Catherine Sackley PhD orcid.org/0000-0002-8580-6622 School of Life Course & Population Sciences, King's College London, London, UK Faculty of Medicine and Health Sciences, University of Nottingham, Nottingham, UKSearch for more papers by this authorChristopher McKevitt PhD, Christopher McKevitt PhD orcid.org/0000-0002-5290-4613 School of Life Course & Population Sciences, King's College London, London, UK National Institute for Health and Care Research (NIHR) Applied Research Collaboration (ARC) South London, London, UK National Institute for Health and Care Research (NIHR) Biomedical Research Centre (BRC), Guy's and St Thomas' NHS Foundation Trust and King's College London, London, UKSearch for more papers by this authorIain J. Marshall MBChB MRCGP PhD, Iain J. Marshall MBChB MRCGP PhD orcid.org/0000-0003-2594-2654 School of Life Course & Population Sciences, King's College London, London, UK National Institute for Health and Care Research (NIHR) Applied Research Collaboration (ARC) South London, London, UKSearch for more papers by this authorDavid Wyatt PhD, David Wyatt PhD orcid.org/0000-0001-5859-7389 School of Life Course & Population Sciences, King's College London, London, UK National Institute for Health and Care Research (NIHR) Biomedical Research Centre (BRC), Guy's and St Thomas' NHS Foundation Trust and King's College London, London, UKSearch for more papers by this authorCharles Wolfe MBBS MRCOG MD MFPH FFPH FRCOG, Charles Wolfe MBBS MRCOG MD MFPH FFPH FRCOG orcid.org/0000-0001-8264-0981 School of Life Course & Population Sciences, King's College London, London, UK Guy's and St Thomas' NHS Foundation Trust, London, UK National Institute for Health and Care Research (NIHR) Applied Research Collaboration (ARC) South London, London, UK National Institute for Health and Care Research (NIHR) Biomedical Research Centre (BRC), Guy's and St Thomas' NHS Foundation Trust and King's College London, London, UKSearch for more papers by this author Eleanor Stevens MPH, Corresponding Author Eleanor Stevens MPH eleanor.stevens@kcl.ac.uk orcid.org/0000-0002-1578-8449 School of Life Course & Population Sciences, King's College London, London, UK Correspondence Eleanor Stevens, School of Life Course & Population Sciences, 5th Floor, Addison House, Guy's Campus, 18-20 Newcomen Street, London, SE1 1UL, UK. Email: eleanor.stevens@kcl.ac.ukSearch for more papers by this authorStephanie G. Clarke BSc (Hons), Stephanie G. Clarke BSc (Hons) School of Life Course & Population Sciences, King's College London, London, UK Guy's and St Thomas' NHS Foundation Trust, London, UK University Hospitals Birmingham, Department of Physiotherapy, Birmingham, UKSearch for more papers by this authorJean Harrington PhD, Jean Harrington PhD School of Life Course & Population Sciences, King's College London, London, UKSearch for more papers by this authorJill Manthorpe MA, Jill Manthorpe MA orcid.org/0000-0001-9006-1410 National Institute for Health and Care Research (NIHR) Policy Research Unit in Health & Social Care Workforce, King's College London, London, UKSearch for more papers by this authorFinbarr C. Martin MBBS MRCP MSc MD FRCP FRCSLT, Finbarr C. Martin MBBS MRCP MSc MD FRCP FRCSLT orcid.org/0000-0002-6911-3498 School of Life Course & Population Sciences, King's College London, London, UK Guy's and St Thomas' NHS Foundation Trust, London, UKSearch for more papers by this authorCatherine Sackley PhD, Catherine Sackley PhD orcid.org/0000-0002-8580-6622 School of Life Course & Population Sciences, King's College London, London, UK Faculty of Medicine and Health Sciences, University of Nottingham, Nottingham, UKSearch for more papers by this authorChristopher McKevitt PhD, Christopher McKevitt PhD orcid.org/0000-0002-5290-4613 School of Life Course & Population Sciences, King's College London, London, UK National Institute for Health and Care Research (NIHR) Applied Research Collaboration (ARC) South London, London, UK National Institute for Health and Care Research (NIHR) Biomedical Research Centre (BRC), Guy's and St Thomas' NHS Foundation Trust and King's College London, London, UKSearch for more papers by this authorIain J. Marshall MBChB MRCGP PhD, Iain J. Marshall MBChB MRCGP PhD orcid.org/0000-0003-2594-2654 School of Life Course & Population Sciences, King's College London, London, UK National Institute for Health and Care Research (NIHR) Applied Research Collaboration (ARC) South London, London, UKSearch for more papers by this authorDavid Wyatt PhD, David Wyatt PhD orcid.org/0000-0001-5859-7389 School of Life Course & Population Sciences, King's College London, London, UK National Institute for Health and Care Research (NIHR) Biomedical Research Centre (BRC), Guy's and St Thomas' NHS Foundation Trust and King's College London, London, UKSearch for more papers by this authorCharles Wolfe MBBS MRCOG MD MFPH FFPH FRCOG, Charles Wolfe MBBS MRCOG MD MFPH FFPH FRCOG orcid.org/0000-0001-8264-0981 School of Life Course & Population Sciences, King's College London, London, UK Guy's and St Thomas' NHS Foundation Trust, London, UK National Institute for Health and Care Research (NIHR) Applied Research Collaboration (ARC) South London, London, UK National Institute for Health and Care Research (NIHR) Biomedical Research Centre (BRC), Guy's and St Thomas' NHS Foundation Trust and King's College London, London, UKSearch for more papers by this author First published: 23 July 2022 https://doi.org/10.1111/hsc.13936AboutSectionsPDF ToolsRequest permissionExport citationAdd to favoritesTrack citation ShareShare Give accessShare full text accessShare full-text accessPlease review our Terms and Conditions of Use and check box below to share full-text version of article.I have read and accept the Wiley Online Library Terms and Conditions of UseShareable LinkUse the link below to share a full-text version of this article with your friends and colleagues. Learn more.Copy URL Share a linkShare onFacebookTwitterLinkedInRedditWechat Abstract Care home residents with stroke have higher levels of disability and poorer access to health services than those living in their own homes. We undertook observations and semi-structured interviews (n = 28 participants) with managers, staff, residents who had experienced a stroke and their relatives in four homes in London, England, in 2018/2019. Thematic analysis revealed that residents' needs regarding valued activity and stroke-specific care and rehabilitation were not always being met. This resulted from an interplay of factors: staff's lack of recognition of stroke and its effects; gaps in skills; time pressures; and the prioritisation of residents' safety. To improve residential care provision and residents' quality of life, care commissioners, regulators and providers may need to re-examine how care homes balance safety and limits on staff time against residents' valued activity, alongside improving access to specialist healthcare treatment and support. What is known about this topic Many stroke survivors living in care homes have severe limitations regarding self-care. Many care home residents living with stroke have limited or no access to stroke specialist care. What this paper adds Having had a stroke with associated disability is not perceived by all care home staff to be an important attribute for care planning purposes. Meeting needs and preferences, particularly in valued activities, is often not achieved for residents with stroke-related disability. Care home staff have limited access to training and support to help them care optimally for residents with stroke and respond effectively to stroke-related changes. 1 INTRODUCTION In the United Kingdom (UK), although most stroke survivors return home after hospital treatment (King's College London, 2021a) some will need to move to a care home. An estimated 11% (United States [US]) to 18% (UK) of care home residents aged ≥65 years have a stroke diagnosis (Caffrey & Sengupta, 2014; Shah et al., 2011). We use 'care home' to include both care homes with a registered nurse on site and those without. Stroke survivors who move to care homes typically have severe limitations in daily self-care, including mobility, grooming, going to the toilet, dressing and eating (Clery et al., 2020; Dutta et al., 2018). The cohort moving to care homes from their own homes later on after a stroke has not been characterised; dementia and increasing disability are likely to contribute to deciding to move. UK stroke care guidelines recommend that care home residents should receive the same standard of treatment/appropriate equipment as those in their own homes (Intercollegiate Stroke Working Party, 2016). The guidelines recommend training care home staff in stroke effects (physical, cognitive/communication, psychological, social) and managing common activity limitations. In practice, stroke-specific training is not mandatory for these staff. International reviews of stroke care in residential facilities describe inadequate and unequal access to rehabilitation therapists and equipment, stroke-specific care (formal reviews, health service contacts, nursing skills) and secondary stroke prevention (Gonçalves-Bradley et al., 2015; Teo & Slark, 2016). 'Person-centred care' describes approaches where care providers work in partnership with the care recipient, supporting informed choice in care and treatment, and make reasonable adjustments to meet individual needs and preferences. The concept of person-centred care has been used in research (Brownie & Nancarrow, 2013) and social care policy: for instance, it forms part of the regulation of UK care homes (Health and Social Care Act 2008 [Regulated Activities] Regulations 2014). However, research has highlighted a knowledge/practice gap among care home staff regarding the concept (Güney et al., 2021). Research on residents with stroke is limited (Teo & Slark, 2016). The main objective of this present study was to understand perceptions and experiences (of staff, affected residents, their relatives) of the needs and care of residents with stroke to better comprehend how their care and quality of life might be improved. While it is reasonable to think that 'person-centred' care should be sensitive to stroke-related disability, residents and staff may not prioritise stroke-specific care needs, given that most residents have multiple long-term conditions (Gordon et al., 2014). Therefore, we also sought to understand the relevance of stroke to care in perception and practice. 2 METHODS We undertook semi-structured interviews and overt observation (Atkinson & Hammersley, 1998) in care homes located in socio-demographically diverse urban South London, England. The methodology was chosen to reveal the reality of care practices and lived experiences (Hammersley & Atkinson, 2007). 2.1 Sampling and Recruitment 2.1.1 Care homes We aimed to recruit six diverse homes (based on resident number, ownership [independent/corporate group], registration/specialism, Care Quality Commission [CQC, England's independent health and social care regulator] rating) (Table 1). We used South London Stroke Register data to identify homes with resident stroke survivors (King's College London, 2021b). Fieldwork took place in four homes during 2018/2019; subsequently data collection ended due to the COVID-19 pandemic. TABLE 1. Characteristics of participating care homes and numbers of participating individuals at each care home Care home Resident number Facilities Care home registration Specialism Ownership Care quality commission rating—range Outstanding, Good, Requires Improvement or Inadequate Residents' funding source Participant number 1 48 4 resident floors. Recent part refurbishment of communal areas Care Home Dementia Not-for-profit national company Good Majority publicly funded 2 residents, 1 relative, 4 manager/staff 2 51 3 resident floors. Unused activity space. Undergoing modernisation Care Home with nursing Dementia For-profit regional company Requires Improvement Majority self-funded 2 residents, 1 relative, 3 manager/staff 3 70 4 resident floors Dual registered Dementia For-profit regional company Good Majority publicly funded 2 residents, 1 relative, 6 manager/staff 4 63 3 resident floors around a courtyard. In need of modernisation Care Home with nursing Dementia Physical disabilities Sensory impairments For-profit Requires Improvement Majority publicly funded 2 residents, 1 relative, 3 manager/staff 2.1.2 Participants Following agreement with home managers, researchers invited staff to participate, using convenience sampling based on a range of roles (Table 2). TABLE 2. Participant types and numbers Participant type (code prefix for quotes/excerpts) Participant number (of which, number interviewed) Resident with stroke (Res) 8a (4) Relative of resident (Fam) 4 (4) Registered manager (Man) 4 (4) Senior administrator (Adm) 1 (1) Senior nurse (SNu) 1 (1) Nurse (Nu) 3 (3) Senior care worker (SCW) 3 (3) Care worker (CW) 2 (2) Activity coordinator (AC) 1 (1) Physiotherapist employed by home (Ph) 1 (1) Total 28 (24) a Eight residents consented (or their consultee gave favourable opinion) to participate. Of these, three were unable to participate in an interview, and one declined an interview. We sought to include all residents with stroke in the observation element. Our protocol excluded from interview residents with severe communication or memory problems. In these instances, we sought to interview a relative. Home managers identified residents with a recorded stroke diagnosis (Table 2). If an unrecorded stroke was suspected, (where possible) researchers spoke with relatives to confirm. Staff asked eligible residents if they wished to speak with a researcher about the study. 2.1.3 Ethics We gave potential participants an information sheet, allowing 24 h (minimum) before seeking written consent. During interviews and observations, if participants appeared distressed or uncomfortable, the researcher changed topic or postponed/ended data collection. No personal care or other sensitive activities were observed. If the researcher judged that a resident did not have capacity to consent to an interview or observations, we sought advice on their participation from a consultee following the requirements of the Mental Capacity Act (Mental Capacity Act, 2005). In practice, we identified personal consultees (family/friend) via staff. We did not record data (directly heard or observed) without consent/consultee opinion. We sought consent from staff members working in participating residents' areas of the care home before observing interactions. Non-participating residents encountered in communal areas were told about the study and asked if they would prefer researchers to leave. Posters displayed in communal areas provided brief study information, researcher photographs and contact details. The London—Camberwell St Giles Research Ethics Committee (Ref 18/LO/0805) approved the study. 2.2 Data collection and analysis The fieldwork team comprised two social scientists, E.S. and J.H., and a researcher physiotherapist, S.C. When consent/consultee opinion allowed, we used an ethnographic approach, spending time observing, being with and speaking with participating residents and staff (we had little opportunity to observe managers). We held introductory 'off the record' conversations with managers, staff and residents during an initial familiarisation period. Interviews lasted 30 min on average, were audio-recorded and transcribed verbatim (see Supporting information S1: topic guides). We used unstructured observation to record daily life for residents with stroke. During our fieldwork, this mainly comprised routine events such as mealtimes, moving around the home, TV-watching, and interactions with staff and visitors. Each home was visited five/six times covering different days of the week and times of the waking day (approximately 12 h of observation per home). Handwritten field notes were typed up as soon as practicable after each visit. Transcriptions and observation notes (details anonymised) were stored securely. Thematic data analysis (Braun & Clarke, 2006) used both software (Nvivo v11 QSR International Pty Ltd) and paper-based methods (theme concept maps). Transcripts/observation notes were coded as a single dataset. First, researchers independently read and coded the data descriptively and inductively (i.e. not conforming to pre-specified codes, allowing 'unexpected' themes to develop) (Sandelowski, 2000). Second, the researchers and supervisor (C.M.) discussed code interpretations and their relevance to the research questions to develop a code categories framework (themes and sub-themes) (Timmermans & Tavory, 2012). The framework enabled material from observations and interviews to be grouped for comparison within and across themes and care homes. Similarities and divergences – stated practice/attitudes versus observed practice, and one source versus another – were noted in 'memos' which linked data extracts within themes. Themes and underlying data were discussed with all authors who included care home experts, clinical specialists in primary care, geriatric medicine and physiotherapy and health services researchers. 3 FINDINGS Three of the four participating homes provided nursing care alongside personal care and all specialised in caring for people with dementia (Table 1). They were similar in layout: ground floor reception area; keycode access to floors where residents with more complex needs had their bedrooms; individual ensuite bedrooms along corridors; communal spaces (seating area with TV/radio, dining area); kitchens (staff use only, on floors where we observed residents) and offices. Nursing care was provided on specific floors. We undertook 21 interviews (24 participants [three paired interviews]) and observations (28 participants) including managers, staff, residents and visiting relatives (Table 2). Staff had a range of job roles and grades: managers, (senior) care worker, (senior) nurse, activity coordinator, physiotherapist and administrator. Interviewed residents had lived in their home for between 2 and 8 years (approximately). Three participants (one in each of three homes) lived in nurse-led care areas of the home. We organised our findings into five main themes, incorporating data from both interviews and observations and evidence from all homes. We have omitted any home identifier to ensure participants' anonymity and specify where an observation relates to some rather than all homes. We use 'staff' to mean home staff in general. 3.1 Limited stroke awareness 3.1.1 Formal and informal training Care workers reported not having undertaken training in caring for people with stroke specifically (or other condition-specific training, except on dementia: such training is not mandatory for social care staff in England). They unsurprisingly reported skills gaps in various aspects of care, including secondary prevention, and knowing which professionals to contact about concerns. A manager explained how staff might receive 'indirect training' (Man02) from clinical specialists via their input into care plans. However, opportunities to improve knowledge/skills were not always taken up. One staff member (CW01) working in a non-professional role, but with more than 20 years of professional nursing experience (including time specialising in stroke), had offered to train colleagues, but this had not been taken up. 3.1.2 Awareness of residents' stroke diagnosis We found nursing and non-qualified staff had incomplete awareness of whether residents were stroke survivors; one nurse thought there were 'probably' (Nu02) residents with prior stroke of which staff were not aware. Indeed, in one home [author 2] confirmed with a relative that a resident was a stroke survivor, yet staff did not recognise the resident as such and reported that their records did not contain this diagnosis. One senior care worker (SCW01) reported that no residents had had a stroke (new or recurrent) in their 20 years of experience, which is improbable. 3.1.3 Knowledge of stroke prevention, signs and effects Staff had variable basic knowledge concerning stroke. Those who had witnessed an incident of stroke recognised it as a medical emergency. They had some understanding of stroke effects on mobility, continence and speech, based on resident observations. In general, they were unaware of other common long-term consequences of stroke, including cognitive and visual impairment and emotional/psychological problems. Risk factor and secondary prevention awareness was also low. Managers also reported receiving little relevant information from the discharging hospital regarding care needs of a new resident who had been treated for stroke. A nurse raised the potential to notice change in a resident which might indicate recurrent stroke: …there were days when [residents with stroke] have unusual behaviour, maybe they get confused or they have different movements […] [they can] develop a stroke any time again […] So we learned to be aware of that […] (Nu02) Nurses reported that changes in residents' health status or behaviour were recorded in daily care documentation and discussed at clinical risk meetings. A senior care worker implied that continuity of staff was important in recognising any such change (SCW01): …it's very seldom that I'm off two days in a row […] [so] I'll be able to say 'oh [resident] just doesn't seem right today.' (SCW01) 3.2 Sensitivity to stroke-specific needs 'Stroke' was rarely used descriptively in daily caregiving. One senior nurse described their home's lack of prior consideration of stroke-related care: …there is no specialities when it comes to delivering care. […] I don't know why […], we've not picked on that to say OK let's sit down and do something about stroke. (SNu01) Managers however perceived a need for awareness of a resident's disabilities, including stroke-related disability, to deliver 'person-centred' care: …if they had a stroke maybe they need a bit more support, because they have parts of their body that are weaker […] but I don't think that it's going to be something specific […] for stroke survivors. (Man03) [staff would say to the general practitioner, GP] '[resident with stroke] has swallowing difficulties and you've given him all tablets so could you change it to liquids' […] that's what person-centred care is all about. (Man02) Similarly, a nurse conveyed the importance of early therapeutic intervention after stroke: …if [upper limb rehabilitation] not being done in the beginning, it might be too late. […] [Muscles] become very quickly contracted (Nu01) Staff two homes reported that colleagues lacked disability awareness. One care worker commented that their colleagues needed to be more 'aware of what they are doing with a patient with stroke' (CW01), that is, sensitivity to one side of the body being affected. Similarly, a physiotherapist commented on the need for specific staff training to avoid injury when assisting residents with stroke-related impairment: Especially with stroke, you have to treat them a bit different, you have to teach [staff] about the shoulder or the dragging leg. (Ph01) 3.3 Met and unmet needs of residents with stroke 3.3.1 Rehabilitation and promoting independence Some participants expressed a belief that a lack of physical or occupational therapy since moving to the home had led to avoidable deterioration (mobility, upper limb function). Based on participants' comments, interventions or contacts by National Health Service (NHS) community therapy services varied between homes but was generally limited, particularly occupational therapy (two homes employed their own physiotherapists suggesting they were under-served by community NHS services). Other needs described as not fully met included psychological support to adjust to disability, and support to identify accessible activities. In general, staff conveyed an understanding of the importance of residents being permitted or enabled to do things for themselves. For example, one senior care worker said, 'we try to let them be as independent as they possibly can for as long as they can' (SCW02). This perhaps indicates the influence of dementia training and awareness. However, another staff member perceived that the lives of residents with stroke-related disability were inherently limited: …they are either bed-bound or chair-bound, so there is nothing much to do with them [other] than to have a good talk. (SNu01) Relatives commented on a lack of rehabilitative activity or encouragement to attempt self-care (Fam02, Fam04). A care worker (CW01) mentioned that residents with upper limb impairment did not have adapted cutlery; it appeared that the home staff had not considered providing this. Another relative (Fam03) described how the home's physiotherapist had to persuade other staff to support transfers from bed to chair for their parent. This had 'taken a while' (Fam03) to be normalised. The resident in question described staff as being 'very cautious' (Res03). Another relative reported that their parent had developed hand contractures: their hand splint had not been used (Fam04). 3.3.2 Participation in planned activities We observed or heard of examples of staff supporting residents with stroke, who had limited mobility, to participate in activities delivered by staff or others: chair-based exercise, 'music and movement' (Res08), taking a resident to a concert (Fam03) or providing art materials: [Resident with stroke] loves her colouring so we can bring her paints and if we're doing arts or crafts […], [staff] will bring the stuff into her room. (Man01) However, some planned activities were not differentiated by ability or inclusive. Discussing a recent activity (beanbag throwing/catching) a resident said: …it's all right for everybody else that hasn't had a stroke, I can't do what other people are doing. (Res08) One relative perceived that differentiation must be too 'difficult' (Fam04) for staff to manage. An activity coordinator (AC01) had a different perspective, reporting a perception among colleagues that leisure activities were unimportant (compared to care tasks). Supporting this, we observed occasions when residents were not invited to attend activities taking place on a different floor of that home. Another home's 'activity space' was used for storage. 3.3.3 Participation and autonomy in valued activity Residents with stroke said they valued purposeful activities, similar to those in which they used to engage. For example, one resident, a keen library user, was asked about their aspirations for daily life: Very limited really. I would like to walk to some of the places we take the wheelchair to […]. To the library, a long distance to go. (Res03) Another resident was reported to enjoy purchasing items from the home's 'pop-up shop' for themself and for others unable to access it. An instance of staff engaging with a resident's valued activity was recorded in another fieldnote: Music is being played in the lounge. [Res06] stands up with a hand on their walking aid. A care worker comes over. She begins dancing, taking hold of [resident]'s hand to prompt them to join in, which they do with a smile. [Res06] tells her 'You are a sister to me now, not a friend'. (Observation excerpt, Res06) Although managers and staff often referred to the importance of person-centred care, residents' interests and preferences were not always supported. Overall, activity in the homes revolved around care routines and staff availability. One resident (Res01) (a wheelchair user) complained they had no opportunity to do any gardening tasks in the home's garden. Another expressed sadness wh
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