Incidence, Prevalence, and Risk for Urinary Incontinence for People with Dementia in the Community in Aotearoa New Zealand: An interRAI Study.

OBJECTIVES: To identify 1-year period prevalence, 5-year incidence rate, and risks for urinary incontinence (UI) for people living with dementia. DESIGN: Retrospective cohort study. SETTING AND PARTICIPANTS: Participants completed an International Residential Assessment Instrument Home Care (interRAI-HC) assessment in a 5-year period between August 1, 2016 and July 31, 2021 in Aotearoa New Zealand (N = 109,964). METHODS: For prevalence analysis, a dementia cohort was selected for a 1-year period from August 1, 2020 to July 31, 2021 (n = 7775). For incidence analysis, participants in the dementia cohort were followed from the first dementia diagnosis during the 5-year period. Dementia was identified by combining diagnoses of "Alzheimer's disease" and "Dementia other than Alzheimer's disease." Participants were coded with UI if they were infrequently, occasionally, or frequently incontinent or if continence was managed with catheter/ostomy. Univariate and multivariate logistic regression analyses identified risk factors predicting UI onset. Cox regression analysis compared survival curves (months without UI) of the dementia and non-dementia cohorts, adjusting for variables significantly associated with incident UI in either cohort. RESULTS: The 1-year period (August 1, 2020 to July 31, 2021) prevalence of UI was 50.1% among people with dementia. The 5-year incident UI rate was 30.2 per 100 person-years for the dementia cohort and 24.5 per 100 person-years for the non-dementia cohort. Parkinson's disease posed the greatest risk of UI in both cohorts [dementia cohort odds ratio (OR), 3.0; 95% CI, 2.1-4.2; non-dementia cohort OR, 1.7; 95% CI, 1.4-2.0]. Controlling for risk factors, the hazard ratio for UI was 1.4 for people with dementia. CONCLUSIONS AND IMPLICATIONS: UI affects a significant proportion of people with dementia in Aotearoa New Zealand. Health professionals should directly ask about UI and consider living arrangements and comorbidities for people with dementia. Data-driven insights from interRAI-HC can guide resource allocation and service planning.

Rural unpaid caregivers' experiences in northern Aotearoa, New Zealand during the Covid-19 pandemic: A qualitative study.

OBJECTIVE: Rural unpaid caregivers experience different opportunities and challenges than their urban counterparts. Our aim was to understand rural unpaid caregivers' experiences of challenges and opportunities during the Covid-19 pandemic in New Zealand. SETTING: Rural northern New Zealand during the Covid-19 pandemic. PARTICIPANTS: A convenience sample of 10 unpaid rural caregivers, most supporting an older person living with dementia. DESIGN: A qualitative descriptive design. Data included interviews and online workshops, and a thematic analysis. RESULTS: Rural unpaid caregivers observed that some aspects of living in a rural context were helpful during the Covid-19 pandemic. However, tasks such as shopping and long-distance travel and communication (both telephonic and digital) became more complex. Abrupt changes to routine and closure of resources and support groups created challenges. Unpaid caregivers worried about what would happen if they were hospitalised themselves. There was a diversity of experience both across caregivers, of familiar routines and rural context as resources, increased challenges requiring resourcefulness to adapt, and experiences of crisis. Many experienced all three states at different times. CONCLUSION: This research provides valuable insights into challenges and opportunities experienced by rural unpaid caregivers during the Covid-19 pandemic and may help policy-makers and healthcare professionals develop improved emergency preparedness. Multilevel, multisector responses are needed to ensure effective health and social support and access to resources including health care, access to groceries and medication, transport, and communications (telephone and digital). Enhancing rural access to effective and inexpensive online services is particularly important, as is recognition of the value of rural sites or hubs of connection and social interaction.

Epidemiology of Faecal Incontinence for People with Dementia Living in the Community in New Zealand: A Retrospective Cohort Study Using interRAI Home Care Assessment Data.

INTRODUCTION: Globally, there are few studies but wide variation in the epidemiology of faecal incontinence (FI) for people living with dementia in the community. Our objectives are to identify 1-year period prevalence, 5-year incidence, and risks for FI for people living with dementia. METHODS: A retrospective cohort study comprising the International Residential Assessment Instrument Home Care version (interRAI-HC) assessments in a 5-year period in New Zealand (N = 109,964). For prevalence analysis, we selected a dementia cohort for a 1-year period from August 1, 2020, to July 31, 2021 (n = 7,775). For the incidence analysis, participants in the dementia cohort were followed up from the day of the first dementia diagnosis during the period August 1, 2016, and July 31, 2021. Dementia was identified by combining diagnosis of "Alzheimer's disease" and "Dementia other than Alzheimer's disease." Participants were coded with faecal incontinence if they were continent with a stoma, seldom incontinent, occasionally incontinent, often incontinent and incontinent. RESULTS: One year period (1 August 2020-31 July 2021) prevalence of FI was 26.7% (2,082/7,775) of people with dementia. 5-Year incident FI rate was 19.0 per 100 person-years for people with dementia and 12.3 per 100 person-years for people without dementia. Controlling for risk factors for FI in both groups the hazard ratio for FI was 1.7 for people with dementia. CONCLUSION: FI affects a significant proportion of people with dementia in New Zealand. interRAI-HC data could facilitate global epidemiological studies to estimate service or intervention needs for people with dementia to redress or manage FI.

Improving continence management for people with dementia in the community in Aotearoa, New Zealand: Protocol for a mixed methods study.

BACKGROUND: The number of people living with dementia (PLWD) in Aotearoa New Zealand (NZ) was estimated at 96,713 in 2020 and it is anticipated that this number will increase to 167,483 by 2050, including an estimated 12,039 Maori (indigenous people of NZ) with dementia. Experiencing urinary incontinence (UI) or faecal incontinence (FI) is common for PLWD, particularly at the later stages of the disease. However, there is no robust estimate for either prevalence or incidence of UI or FI for PLWD in NZ. Although caregivers rate independent toilet use as the most important activity of daily living to be preserved, continence care for PLWD in the community is currently not systematised and there is no structured care pathway. The evidence to guide continence practice is limited, and more needs to be known about caregiving and promoting continence and managing incontinence for PLWD in the community. This project will seek to understand the extent of the challenge and current practices of health professionals, PLWD, caregivers and family; identify promising strategies; co-develop culturally appropriate guidelines and support materials to improve outcomes; and identify appropriate quality indicators so that good continence care can be measured in future interventions. METHODS AND ANALYSIS: A four-phase mixed methods study will be delivered over three years: three phases will run concurrently, followed by a fourth transformative sequential phase. Phase 1 will identify the prevalence and incidence of incontinence for PLWD in the community using a cohort study from standardised home care interRAI assessments. Phase 2 will explore continence management for PLWD in the community through a review of clinical policies and guidance from publicly funded continence services, and qualitative focus group interviews with health professionals. Phase 3 will explore experiences, strategies, impact and consequences of promoting continence and managing incontinence for PLWD in the community through secondary data analysis of an existing carers' study, and collecting new cross-sectional and longitudinal qualitative data from Maori and non-Maori PLWD and their caregivers. In Phase 4, two adapted 3-stage Delphi processes will be used to co-produce clinical guidelines and a core outcome set, while a series of workshops will be used to co-produce caregiver resources.

Impacts of the COVID-19 lockdown on self-reported mood and self-rated health of community-dwelling adults with chronic illness.

AIM: To determine whether self-reported mood or self-rated health were affected in community-dwelling adults with chronic illness following COVID-19 lockdown. METHODS: This was a repeated cross-sectional study using secondary data. We included New Zealanders aged 40+ who underwent International Residential Instrument (interRAI) assessments in the year prior to COVID-19 lockdown (25 March 2019-24 March 2020) or in the year following COVID-19 lockdown (25 March 2020-24 March 2021). Pairwise comparisons were made between each pre-lockdown quarter and its respective post-lockdown quarter to account for seasonality patterns. Data from 45,553 (pre-lockdown) and 45,349 (post-lockdown) assessments were analysed. Outcomes (self-reported mood, self-rated health) were stratified by socio-demographic variables. RESULTS: Self-reported mood improved in the first quarter post-lockdown among those aged 80+, as well as among women, people of European ethnicity, those living alone and those living in more deprived areas. Self-rated health improved in these same groups, as well as among those aged 65-79, and among men. No differences in self-reported mood or self-rated health were found in the second, third, or fourth quarters post-lockdown. CONCLUSIONS: Self-reported mood and self-rated health of community-dwelling adults with chronic illness were not negatively affected following COVID-19 lockdown, and temporarily improved among some sub-groups. However, the longer-term impacts of the COVID-19 pandemic need to be closely monitored.

Health equity and wellbeing among older people's caregivers in New Zealand during COVID-19: Protocol for a qualitative study.

BACKGROUND: Knowledge of the challenges unpaid caregivers faced providing care to older people during the COVID-19 pandemic is limited. Challenges may be especially pronounced for those experiencing inequitable access to health and social care. This participatory action research study, located in New Zealand, has four main objectives, (i) to understand the challenges and rewards associated with caregiving to older care recipients during the COVID-19 pandemic restrictions; (ii) to map and collate resources developed (or mobilised) by organisations during the pandemic; (iii) to co-produce policy recommendations, identify useful caregiver resources and practices, prioritise unmet needs (challenges); and, (iv) to use project results in knowledge translation, in order to improve caregivers access to resources, and raise the profile and recognition of caregivers contribution to society. METHODS AND ANALYSIS: Maori, Pacific and rural-dwelling caregivers to 30 older care-recipients, and 30 representatives from organisations supporting caregivers in New Zealand will be interviewed. Combining data from the interviews and caregivers letters (from an archive of older people's pandemic experiences), framework analysis will be used to examine the interrelated systems of the human ecological model and the impact on caregiving experiences during the pandemic. Resources that service providers had created or used for caregivers and older people will be collated and categorised. Through co-production with caregivers and community partners we will produce three short films describing caregivers' pandemic experiences; identify a suite of resources for caregivers to use in future events requiring self-isolation, and in everyday life; and generate ideas to address unresolved issues.

Dignity and the provision of care and support in 'old age homes' in Tamil Nadu, India: a qualitative study.

BACKGROUND: In 2016, Tamil Nadu was the first state in India to develop a set of Minimum Standards for old age homes. The Minimum Standards stipulate that that residents' dignity and privacy should be respected. However, the concept of dignity is undefined in the Minimum Standards. To date, there has been very little research within old age homes exploring the dignity of residents. This study draws on the concepts of (i) status dignity and (ii) central human functional capabilities, to explore whether old age homes uphold the dignity of residents. OBJECTIVES: The study was designed to obtain insights into human rights issues and experiences of residents, and the article addresses the research question, "to what extent do old age homes in Tamil Nadu support the central human functional capabilities of life, bodily health, bodily integrity and play, and secure dignity for older residents?". METHOD: A cross-sectional qualitative exploratory study design was utilised. Between January and May 2018 face-to-face interviews were conducted using a semi-structured topic guide with 30 older residents and 11 staff from ten care homes located three southern districts in Tamil Nadu, India. Framework analysis of data was structured around four central human functional capabilities. RESULTS: There was considerable variation in the extent to which the four central human functional capabilities life, bodily integrity, bodily health and play were met. There was evidence that Articles 3, 13, 25 and 24 of the Universal Declaration of Human Rights were contravened in both registered and unregistered facilities. Juxtaposing violations of human rights with good practice demonstrated that old age homes have the potential to protect the dignity of residents. CONCLUSION: The Government of India needs to strengthen old age home policies to protect residents. A new legislative framework is required to ensure that all old age homes are accountable to the State. Minimum Standards should include expectations for quality of care and dignity in care that meet the basic needs of residents and provide health care, personal support, and opportunities for leisure, and socializing. Standards should include staff-to-resident ratios and staff training requirements.

Detecting Acute Deterioration in Older Adults Living in Residential Aged Care: A Scoping Review.

OBJECTIVES: To explore models, processes, or tools implemented in residential aged care (RAC) to support registered nurses (RNs) to identify and respond to the acute deterioration of residents. DESIGN: Scoping literature review of English Language articles published in peer reviewed journals. SETTINGS AND PARTICIPANTS: Studies were conducted in RAC facilities providing long-term 24-hour medical, nursing, and social care for people age 65 years or older with age-related disability. METHODS: We completed a MESH term and key word search of MEDLINE, Embase, CINAHL, PubMed, and Google Scholar. Included studies had (1) part of the intervention based in RAC; (2) had a direct impact on RAC day to day practice; and (3) contained or provided access to the detail of the intervention. Data was charted by author, date, country, study design and the components, genesis, and efficacy of the methods used to identify and respond to acute deterioration. RESULTS: We found 46 studies detailing models of care, clinical patterns of acute deterioration, and deterioration detection tools. It was not possible to determine which element of the models care had the greatest impact on RN decision making. The clinical patterns of acute deterioration painted a picture of acute deterioration in the frail. There was limited evidence to support the use of existing deterioration detection tools in the RAC population. CONCLUSION AND IMPLICATIONS: We found no straight forward systematic method to support RAC RNs to identify and respond to the acute deterioration of residents. This is an important practice gap. The clinical pattern of acute deterioration described in the literature has the potential to be used for the development of a tool to support RAC RNs to identify and respond to the acute deterioration of residents.

A research agenda for promoting continence for people living with dementia in the community: Recommendations based on a critical review and expert-by-experience opinion.

AIMS AND OBJECTIVES: To identify research undertaken in the last decade addressing continence for people living with dementia (PLWD) in the community. To highlight gaps and develop recommendations for future research, taking into account the experiences and priorities of PLWD, caregivers and healthcare professionals. METHODS: A critical review with an Expert Review Group (ERG) comprising researchers, PLWD and facing continence issues, caregivers and other professional stakeholders. Findings are reported in line with the COREQ and Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews checklists. BACKGROUND: Caregivers rate the independent use of the toilet as the most important activity for PLWD to retain. However, in 2009 a review identified shortfalls in knowledge and praxis around promoting continence and managing incontinence for PLWD in the community. As absolute numbers of people with dementia are predicted to increase, it is imperative to examine whether these deficits have been addressed. RESULTS: Of 3,563 records identified, 57 full-text articles were reviewed. The ERG developed a conceptual model to summarise research evidence according to the extent of the challenge (neuropathology and clinicopathology, prevalence and incidence), gateways to continence services, effectiveness of interventions, outcomes and the potential influences of personal resources, socio-cultural factors and environmental contexts. CONCLUSIONS: Research on (in)continence for PLWD in the community is under-developed and has not increased substantially over the last decade. ERG recommendations for future research included user involvement to identify appropriate quality indicators to assess the effectiveness of interventions. RELEVANCE TO CLINICAL PRACTICE: There is insufficient evidence on which to base decisions on continence care for PLWD in the community. Omission from continence care guidelines has the effect of marginalising and silencing this population. User involvement in clinical research and developing practice guidelines has the potential for positive systems change.

Impact of the COVID-19 Pandemic on Loneliness and Social Isolation: A Multi-Country Study.

The COVID-19 global pandemic and subsequent public health social measures have challenged our social and economic life, with increasing concerns around potentially rising levels of social isolation and loneliness. This paper is based on cross-sectional online survey data (available in 10 languages, from 2 June to 16 November 2020) with 20,398 respondents from 101 different countries. It aims to help increase our understanding of the global risk factors that are associated with social isolation and loneliness, irrespective of culture or country, to support evidence-based policy, services and public health interventions. We found the prevalence of severe loneliness was 21% during COVID-19 with 6% retrospectively reporting severe loneliness prior to the pandemic. A fifth were defined as isolated based on their usual connections, with 13% reporting a substantial increase in isolation during COVID-19. Personal finances and mental health were overarching and consistently cross-cutting predictors of loneliness and social isolation, both before and during the pandemic. With the likelihood of future waves of COVID-19 and related restrictions, it must be a public health priority to address the root causes of loneliness and social isolation and, in particular, address the needs of specific groups such as carers or those living alone.

Loneliness in mid-life and older adults from ethnic minority communities in England and Wales: measure validation and prevalence estimates.

We investigated the prevalence of loneliness among 1206 adults aged 40 + from six minority communities in England and Wales: Black Caribbean, Black African, Indian, Pakistani, Bangladeshi and Chinese. Replicating the approach from the previous studies, we demonstrate robust acceptability, reliability and validity for both the six-item De Jong Gierveld (DJG) and single-item loneliness scales in our six ethnic groups. The prevalence of loneliness using a single-item question (loneliness reported as often/always) ranges from 5% (Indian) to 14% (Chinese) compared with approximately 5% for the general population aged 40 + in Britain. Levels of loneliness are very much higher using the DJG scale. Using a loneliness threshold score of 5 +, the percentage ranged from 13% (Indian) to 36% (Chinese). We explored the importance of six established loneliness vulnerability factors for our sample using regression modelling. Three factors were not associated with loneliness-number of children, gender and health rating, and three factors were protective: younger age, being married and low financial strain. The addition of ethnicity did not change these relationships or enhance statistical power of our models. Being a member of the African Caribbean group was protective against loneliness but not for the other groups included in our study. We suggest that exposure to loneliness vulnerability factors rather than ethnicity per se or measurement artefact underpins differences in loneliness across ethnic groups.

A longitudinal exploration of mental health resilience, cognitive impairment and loneliness.

OBJECTIVE: There is a growing interest in how people living with dementia may achieve good outcomes and be resilient despite their health challenges. Understanding what might be important for resilience in this population is largely untested theory. METHODS: The analysis draws a subsample with cognitive impairment (N = 579) from two waves of the Cognitive Function and Ageing Studies Wales study, a nationally representative study of community-dwelling people aged 65+ in Wales. We constructed a measure of mental health resilience (MHR) defined as no depression, no anxiety and high well-being. Drawing on a resilience framework, we tested univariate and cumulative effects models of the factors that enable MHR, and then examined whether MHR is important for reducing loneliness over time. RESULTS: Across both waves of data 22% (n = 121) met the criteria for MHR. The cumulative effects model found the odds of MHR were greater for male gender, higher self-esteem, greater social resources and no subjective memory complaints. Controlling for these significant predictors, MHR significantly predicted lower total and sub-scale scores for loneliness at wave 2. Sensitivity analysis shows these effects held at lower levels of cognitive function when the Mini-Mental State Examination score was <25, but not at <23. CONCLUSIONS: This paper addresses a gap in research regarding the conceptualisation and measurement of resilience when facing cognitive impairment. Understanding what aspects of a person's life might enable good mental health despite cognitive impairment-to be resilient-could inform effective strategies for friends and families, along with health, and social policy and practice.

Impact of COVID-19 on the health and psychosocial status of vulnerable older adults: study protocol for an observational study.

BACKGROUND: Many countries around the world have adopted social distancing as one of the public health measures to reduce COVID-19 transmissions in the community. Such measures could have negative effects on the mental health of the population. The aims of this study are to (1) track the impact of COVID-19 on self-reported mood, self-rated health, other health and psychosocial indicators, and health services utilization of people who have an interRAI assessment during the first year of COVID-19; (2) compare these indicators with the same indicators in people who had an interRAI assessment in the year before COVID-19; and (3) report these indicators publicly as soon as data analysis is completed every 3 months. METHODS: interRAI COVID-19 Study (iCoS) is an observational study on routinely collected national data using the interRAI Home Care and Contact Assessment, which are standardized geriatric assessment tools mandated for all people assessed for publicly funded home support services and aged residential care in New Zealand. Based on the 2018/19 figures, we estimated there are 36,000 interRAI assessments per annum. We will compare the four post-lockdown quarters (from 25th March 2020) with the respective pre-lockdown quarters. The primary outcomes are self-reported mood (feeling sad, depressed or hopeless: 0 = no, 1 = yes) and self-rated health (0 = excellent, 1 = good, 2 = fair, 3 = poor). We will also analyze sociodemographics, other secondary health and psychosocial indicators, and health services utilization. Descriptive statistics will be conducted for primary outcomes and other indicators for each of the eight quarters. We will compare the quarters using regression models adjusted for demographic characteristics using weights or additional variables. Key health and psychosocial indicators will be reported publicly as soon as data analysis is completed for each quarter in the 12-month post-lockdown period by using a data visualization tool. DISCUSSION: This rapid translation of routinely collected national interRAI data will provide a means to monitor the health and psychosocial well-being of vulnerable older New Zealanders. Insights from this study can be shared with other countries that use interRAI and prepare health and social services for similar epidemics/pandemics in the future.

Consensus statement: loneliness in older adults, the 21st century social determinant of health?

OBJECTIVE: The purpose of this consensus statement is to determine the state of the field of loneliness among older people, highlighting key issues for researchers, policymakers and those designing services and interventions. METHODS: In December 2018, an international meeting on loneliness was held in Belfast with leaders from across the USA and Europe. A summary of the conclusions reached at this event is presented following a consensus-building exercise conducted both during this event after each presentation as well as after the event through the drafting, reviewing and agreement of this statement by all authors for over 6 months. RESULTS: This meeting resulted in an agreement to produce a consensus statement on key issues including definitions of loneliness, measurement, antecedents, consequences and interventions. DISCUSSION: There has been an exponential growth in research on loneliness among older adults. However, differing measurements and definitions of loneliness mean the incidence and prevalence, associated risk factors and health consequences are often conflicting or confusing especially for those developing policy and services.

Loneliness as a Biographical Disruption-Theoretical Implications for Understanding Changes in Loneliness.

OBJECTIVES: While a great deal is known about the risk factors that increase vulnerability to loneliness in later life, little research has explored stability and change in levels of loneliness. METHODS: Narrative interviews were conducted with 11 participants who were identified as being lonely during Wave 1 of the Maintaining Function and Well-being in Later Life Study Wales (CFAS Wales). The interviews were used to explore stability and change in levels of loneliness from the perspective of older people themselves. The interviews focused on participant's perspectives of the events that triggered loneliness, stability, and change in levels of loneliness over time as well as participant's responses to loneliness. RESULTS: The findings show that participants experienced losses and loneliness as biographical disruption. How participants and their wider social network responded to these losses had implications for the individual's trajectory through loneliness. DISCUSSION: Drawing on a biographical lens, the study reframed the events that triggered loneliness as disruptive events. This article discusses the utility of biographical disruption in understanding stability and change in loneliness. The findings suggest how drawing on valued identities may help lonely adults transition out of loneliness.

Technology-Mediated Communication in Familial Relationships: Moderated-Mediation Models of Isolation and Loneliness.

BACKGROUND AND OBJECTIVES: We examined whether technology-mediated communication has functional or emotional equivalence to face-to-face (FtF) contact in familial relationships, by scrutinizing the effects of phone, text/e-mail, and video contact on isolation and loneliness. RESEARCH DESIGN AND METHODS: We tested whether FtF contact with a relative would mediate the pathway between proximity to family and (i) isolation and (ii) loneliness. We then tested hypotheses that telephone, text/e-mails, and video contact would moderate this mediated pathway. We compared models for younger (<75) and older (≥75) cohorts, expecting to observe moderation effects for text/e-mail and video contact in the younger cohort only. Data were drawn from Wave 2 of CFAS Wales (United Kingdom) study (N = 2,099). RESULTS: Proximity to a relative had a significant indirect effect on isolation and loneliness through the mediating variable FtF contact. Phone and text/e-mail contact moderated the effect of FtF contact on isolation for all samples. None of the technologies moderated the impact of FtF contact on loneliness for the full sample. Telephone contact had a moderating influence on loneliness for the younger cohort only. Video calls had no significant moderation effect. DISCUSSION AND IMPLICATIONS: Telephone and text/e-mail contact have functional equivalence to FtF contact in familial relationships. None of the forms of technological communication have emotional equivalence to the "gold standard" of embodied presence. The study demonstrates the importance of theorizing about the pathways to isolation and loneliness to better understand the likelihood of implementing successful interventions using technology-mediated communication within families.

A critical review and development of a conceptual model of exclusion from social relations for older people.

Social exclusion is complex and dynamic, and it leads to the non-realization of social, economic, political or cultural rights or participation within a society. This critical review takes stock of the literature on exclusion of social relations. Social relations are defined as comprising social resources, social connections and social networks. An evidence review group undertook a critical review which integrates, interprets and synthesizes information across studies to develop a conceptual model of exclusion from social relations. The resulting model is a subjective interpretation of the literature and is intended to be the starting point for further evaluations. The conceptual model identifies individual risks for exclusion from social relations (personal attributes, biological and neurological risk, retirement, socio-economic status, exclusion from material resources and migration). It incorporates the evaluation of social relations, and the influence of psychosocial resources and socio-emotional processes, sociocultural, social-structural, environmental and policy contextual influences on exclusion from social relations. It includes distal outcomes of exclusion from social relations, that is, individual well-being, health and functioning, social opportunities and social cohesion. The dynamic relationships between elements of the model are also reported. We conclude that the model provides a subjective interpretation of the data and an excellent starting point for further phases of conceptual development and systematic evaluation(s). Future research needs to consider the use of sophisticated analytical tools and an interdisciplinary approach in order to understand the underlying biological and ecopsychosocial associations that contribute to individual and dynamic differences in the experience of exclusion from social relations.

A co-produced method to involve service users in research: the SUCCESS model.

BACKGROUND: Public and patient involvement is a routine element of health services research methods to produce better designed and reported studies. Although co-production is recommended when involving people in research, methods for involving people are usually designed and managed by researchers and there is little evidence about methods to co-produce models for effective public and patient involvement. We report the method used by a group of patient and carer service users to develop and implement a model for involving public members in research. METHOD: We recruited people with experience of chronic conditions, as patients and carers, and supported them to develop and implement the involvement model. We collected written records to describe the processes of co-production. RESULTS: Sixteen service users were involved through a series of workshop, meeting and email discussions. They specified principles and operating characteristics of the model which concerned an inclusive culture, adequate resources, accessibility, good communication and clarity of purpose and roles. Components of the model included an on-line Panel of members (n = 20), Steering Group meetings, representation and communication system, facilitator, supportive research environment and access to research activities. Over 8 years, members were active in 218 research activities and held 22 Steering Group meetings. The model was named SUCCESS standing for Service Users with Chronic Conditions Encouraging Sensible Solutions. CONCLUSION: We supported patients and carers to co-produce the SUCCESS model of involvement in research. The model's components, addressing their needs and priorities, led to sustained involvement in research over 8 years. Further work is needed to apply the model in different settings and assess impact of this method of involving people in research.