Indigenous peoples’ experiences and preferences in aged residential care: a systematic review

Although the demand for aged residential care increases, low use of aged residential care by Indigenous people raises questions about unrecognised barriers to health care. The objectives of this systematic literature review are to (a) examine current scientific literature that reports older Indigenous people’s experiences in aged residential care and (b) describe critical factors that shape Indigenous people’s preferences in aged residential care settings. We conducted a systematic review of studies using an online search of the literature. A total of 6,233 citations were retrieved, and 45 studies examined in full-text. Eight studies met the study inclusion criteria. Indigenous older people were found to be younger, had higher prevalence of complex health conditions, and were less likely to receive dental and mental health services on admission to aged residential care. Their preferences for care were more likely to be evident in aged residential care facilities where the Indigenous composition of staff reflected the Indigenous makeup of its residents.

Bladder and bowel preferences of patients at the end of life: a scoping review

Background: Following patient preferences at the end of life should improve outcomes of care, yet patient preferences regarding bladder and bowel care are not often accommodated, as they are not well known in the literature. Aims: This scoping review sought to identify bladder and bowel care preferences of patients at the end of life in published literature. Methods: Papers published in or after 1997 (in English) that focused on adult preferences for bladder and bowel care at the end of life were included. Findings: Scant literature exists on preferences for bladder and bowel care for adult patients at end of life. Further investigation is warranted to arrive at a better understanding of preferences regarding bladder and bowel symptom management. Conclusions: Future research should explore if prioritising the symptoms caused by incontinence, among the many symptoms experienced at the end of life, could be achieved through careful questioning and development of a standardised tool focused on improving patient care and incorporating patient preferences for care.

Who Cares? Preferences for Formal and Informal Care Among Older Adults in Québec

Policy makers, practitioners, and scholars are increasingly examining the types of care services (formal vs. informal) offered to older adults. This study evaluates predictors of these adults’ preferences for care types in Québec, Canada, based on a province-wide survey inserted in a magazine of the largest seniors’ club in Canada (FADOQ). More than twice as many respondents indicated a preference for formal rather than informal care. Multinomial logistic regressions demonstrate that older adults’ past and current experiences and perceptions of formal and informal services continue to play an important role in their preference formation regarding care services. The study determined that preferring informal care is significantly more prevalent when one is accustomed to this type of care, and that men are significantly more likely to prefer informal care than women, and that lower-income individuals are less likely to favor formal care.

Me & My Wishes Videos: Congruence of End-of-Life Preferences Between Residents With Dementia, Family, and Staff

Me & My Wishes are person-centered videos of long term care residents (ages 65-95) living with dementia discussing their preferences for care including end-of-life (EOL) medical intervention. We evaluated the congruence of six EOL treatment preferences between the residents’ personal videos, medical records (e.g. advance directive), and surveys of family (n= 49) and staff (n=37; 118 responses) knowledge of their preferences. Results were highly discordant. Treatments with the most discordance when comparing videos to comparison groups were IV fluids (medical record, 57.1%) and life support (family, 69.4%; staff, 82.2%). Residents reported EOL treatments were considered acceptable if they were temporary, would relieve suffering, or enabled a return to baseline health. These caveats may lead to discordance if they are not conveyed to family or staff. Our findings highlight the need for conversations among residents living with dementia and their caregivers to improve understanding, congruence and adherence of resident EOL preferences.

Caregiver and Adolescent Patient Perspectives on Comprehensive Care for Inflammatory Bowel Diseases: Building a Family-Centered Care Delivery Model

Background Children with inflammatory bowel diseases (IBDs) require primary and gastrointestinal (GI) care, but little is known about patient and family preferences for care receipt. We aimed to understand caregiver perceptions of current healthcare quality, describe barriers to receiving healthcare, and elicit caregiver and adolescent preferences for how comprehensive care ideally would be delivered. Methods This was an anonymous survey of caregivers of 2- to 17-year olds with IBD and adolescents with IBD aged 13–17 years at a large, free-standing children’s hospital. Surveys assessed patient medical history, family demographics, perceptions of health care quality and delivery, barriers to primary and GI care, and preferences for optimal care delivery. Results Two hundred and seventeen caregivers and 140 adolescents were recruited, 214 caregivers and 133 adolescents consented/assented, and 160 caregivers and 84 adolescents completed the survey (75% and 60% response rate, respectively). Mean patient age was 14 years (SD = 3); 51% male; 79% Crohn’s disease, 16% ulcerative colitis, and 4% indeterminate colitis. Caregivers were primarily female (86%), Caucasian (94%), and living in a 2-caregiver household (79%). Most caregivers reported that their child’s primary care physician (PCP) and GI doctor oversaw their primary care (71%) and their IBD care (94%), respectively. Caregivers were satisfied with communication with their PCP and GI providers (>90%) but did not know how well they communicated with one another (54%). Barriers to primary and GI care varied, and few caregivers (6%) reported unmet healthcare needs. Caregivers and adolescents saw PCPs and GI doctors having important roles in comprehensive care, though specific preferences for care delivery differed. Conclusion Caregivers and adolescent perspectives are essential to developing family-centered care models for children with IBD.

Women’s expectations and preferences for care of the newborn in the immediate postpartum period

Background: The Regulation of the Minister of Health issued on 16th August 2018 addressed the matter of the organizational standard of perinatal care which determines guidelines concerning care of the newborn baby, in which skin-to-skin contact and early breastfeeding are important. Aim of the study: The aim of this study is to explore women's preferences concerning care of the newborn in the immediate postpartum period. Material and methods: 130 patients attending the Pro-Familia specialist hospital in Rzeszow participated in this research. The cohort consisted of pregnant women who had attended the doctor supervising their pregnancy before delivery. The research was carried out from March to April 2013 and the data collected was statistically analyzed, assuming a significance level of p<0.05. Results: Pregnant women most often expressed a preference of an accompanying person to cut the newborn’s umbilical cord (59.2%), with 23.1% preferring a member of the medical team to do so. The majority (89.2%) of pregnant women wanted their baby to be laid on their stomach immediately following delivery to ensure skin-to-skin contact. In terms of Apgar scoring, 69.2% of women expected information about the Apgar score of their newborn immediately after delivery. Most women (60%) wished their newborn to be given routine vaccinations for hepatitis B and tuberculosis (BCG). Patients most often declare that they want to breastfeed exclusively (77.7%), with 29.2% of women expressing a wish to obtain more information about breastfeeding and 31.5% wishing to consult with a lactation specialist. Conclusions: Pregnant women expect skin-to-skin contact immediately after delivery, the umbilical cord to be cut by an accompanying person and would like to be told their newborn’s Apgar score. The women studied prefer exclusively breastfeeding, and express a wish to obtain information regarding lactation, and expect to be able to consult with a lactation specialist.

P76 The experiences of and preferences for delivery of outpatient rheumatology services in adults diagnosed with axSpA living in the UK: a qualitative study

Background Rising healthcare demand for people with rheumatic and musculoskeletal diseases in the UK is set to continue. Delivering sustainable outpatient rheumatology services, with a shift towards remote patient monitoring, virtual consultations, shared decision-making and supported self-management, is now a key NHS priority. Involving patients in outpatient rheumatology services transformation is considered a core prerequisite for success; a first step being to understand the perspectives of and preferences for care of patients with rheumatic and musculoskeletal diseases. Current evidence of perceived health service needs in people with inflammatory arthritis centres on rheumatoid arthritis; understanding about perceptions of people with axial spondyloarthritis (axSpA), in particular younger adults, is limited. The aim of this qualitative study was to explore in depth the experiences of, and preferences for, the delivery of NHS outpatient rheumatology services in adults diagnosed with AxSpA. Methods Five semi-structured focus groups were conducted between 2018 and 2019 with younger (age &lt;45 years) and older (age ≥45 years) adults diagnosed with AxSpA living in the UK. Participants were recruited from the National Ankylosing Spondylitis Society (one group) and hospital outpatient rheumatology clinics in two NHS Trusts in England (four groups). Focus groups were audio-recorded, transcribed verbatim, anonymised and uploaded to NVivo 12. Data were analysed thematically and validated by including deviant accounts and single counting. Initial codes were generated, and subsequent themes developed through iterative discussions among the researchers. Results Thirty-three adults with AxSpA (18 men and 15 women) from diverse ethnic backgrounds and with a range of disease-related characteristics participated in the study. Thirteen participants were aged &lt;45 years (M = 33, SD = 5.88) and twenty were aged ≥45 years (M = 59.6, SD = 9.79). Four key themes were developed from the data: (i) early access to specialist rheumatology services staffed by health professionals with up-to-date knowledge and expertise in AxSpA. ii) preferences for need-based flexibly delivered patient-centred consultations with shared decision-making (specifically in younger adults) and continuity of care that is integrated across providers. iii) opportunities to discuss different treatment options with clinicians (younger adults) and information about rapid access at time of flare (younger and older adults). iv) self-management, including the value of peer support and reliable sources of evidence-based information about AxSpA. Conclusion Focus group members described a picture of inconsistent delivery of NHS rheumatology outpatient services in the UK. Preferences for care in adults with AxSpA largely align with proposals to transform NHS outpatient services and revolve around flexible delivery of patient-centred consultations, underpinned by shared decision-making and supported self-management. However, integrating these preferences into new models of care delivery to ensure optimal patient outcomes will require transformative action. These data can inform local and national developments to reconfigure outpatient services for people with AxSpA. Disclosures N. Wilson None. N. Kaiser None. J. Roose None. R. Martinez None. S. Steer None. H. Lempp None.