All time references are in CEST
Surveying people living in nursing homes and other institutions: Challenges and solutions |
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| Session Organisers | Dr Mareike Bünning (German Centre of Gerontology) Dr Michael Weinhardt (German Centre of Gerontology) Dr Michael Bergmann (SHARE) Dr Katrin Drasch (FAU Erlangen-Nürnberg) |
| Time | Tuesday 18 July, 09:00 - 10:30 |
| Room | |
A substantial part of every society's population resides in nursing homes, long-term care facilities or residential homes for disabled adults. However, many surveys restrict their samples to people living in private households, excluding institutionalised populations. This leads to biased estimates in population-level research. Including these populations is crucial for providing a more comprehensive understanding of social outcomes across different living conditions and informing policies that address the needs of vulnerable groups. Yet, even if surveys attempt to collect data from people living in institutions, this comes with particular problems and challenges. Finding a suitable sampling frame is often challenging and may require a two-step procedure, where institutions are sampled first and individuals within institutions second. In panel studies, tracking the transition into institutionalised living is particularly difficult. Moreover, gaining the cooperation of institutions, which are not the primary research target but play a key role as 'gatekeepers', is essential. Conducting the interview itself may pose further challenges, including finding a suitable location in the institution and scheduling interviews around tight routines. Finally, depending on the institution, the health status of residents may limit their ability to participate in the survey, and alternative methods like assisted or proxy interviews may be necessary to maintain data quality and representativeness.
This session invites contributions that address these challenges and propose solutions for surveying institutionalised populations. Topics may include, but are not limited to:
• Sampling institutions, including questions of suitable sampling frames or other approaches
• Sampling procedures for individuals residing within institutions
• Monitoring transitions to institutional living in panel studies
• Engaging institutional managers and stakeholders to support research efforts
• Practical challenges in conducting interviews within institutions and nursing homes
• Ethical issues in surveying the institutionalised population, such as consent and vulnerability
• Enhancing data quality in surveys on institutionalised populations
Keywords: institutionalised populations, nursing homes, care facilities, hard-to-survey populations
Mrs Julia Harand (infas Institute for Applied Social Science) - Presenting Author
Dr Sebastian Link (infas Institute for Applied Social Science)
The “Representative Survey on the Participation of People with Disabilities” (German Participation Survey) is the largest nationwide study in Germany examining the participation of people with impairments and disabilities across various life domains. This panel study has been running since 2017. The primary objective of the German Participation Survey is to gain insights into the life situations and participation opportunities of individuals with impairments and disabilities, regardless of whether these people live in a private household, an institutional setting or “on the street” (homeless people).
This presentation focusses on the sub-study of persons with disabilities living in institutional settings. It includes persons living in residential facilities for persons with disabilities, assisted living and nursing homes. The methodological approach employs a multistage probability sampling process: first selecting a probability sample of institutions and then randomly sampling residents within those institutions. During the first wave of the study more than 3.354 interviews were conducted in 327 institutions all over the country. 805 of the respondents could be interviewed again in the second wave, together with 1.156 persons taking part in the study for the first time.
The study faces many practical challenges, including gaining access to residents, conducting on-site interviews, ensuring high data quality and addressing panel attrition during the second wave of this longitudinal study. Successful implementation relies on collaboration with institutional managers and stakeholders, who play a crucial role in providing access to the residents and coordinating interview appointments. The presentation will address these challenges and discuss strategies for overcoming them, offering insights into the complexities of surveying people with impairments and disabilities in institutional settings.
Mr Jakub Hrkal (Eurostat) - Presenting Author
Mr Lucian Agafitei (Eurostat)
Mrs Teodora Tchipeva (Eurostat)
Mrs Jeannette Klimont (Statistics Austria)
The European Health Interview Survey (EHIS) is the main source of information on health status, health determinants and healthcare activities based on sample surveys in the EU. Like any other social survey conducted by the European Statistical System, it covers persons living in private households, thereby excluding those living in institutions and in other non-private households. Long-term nursing care facilities, mental health and substance abuse facilities, and other residential long-term care facilities were identified as primarily targeted institutions. The persons living in those institutions are likely to be older and, on average, less healthy than those living in private households. By excluding them from the target population, the estimations of specific indicators on total population might therefore be biased.
Acknowledging the need for data in relation to the persons living in institutions, Eurostat, together with the EU Member States and other stakeholders, are preparing methodological guidelines to extend to this group the coverage of EHIS data collection. To this aim, feasibility and pilot studies will be conducted. The results of the work will serve discussions on the feasibility of extending EHIS and other social surveys to population living in institutions.
Based on an EU survey conducted in 2024 among the national representatives responsible for EHIS, this paper provides an overview of countries’ experience with collecting data on persons living in institutions, highlighting the issues countries encountered with implementation. The paper also describes the arrangement and the process of developing feasibility and pilot studies to collect data on persons living in institutions. Finally, it presents the current state of play and provisional conclusions that would guide the implementation of such studies.
Mrs Irina Meinke (Federal Statistical Office Germany (Destatis)) - Presenting Author
The establishment of a centralised permanent database of all institutions and collective living quarters, which is to be built up as a statistical register and which is to be regularly updated in short survey cycles, has not yet been achieved in Germany. This register will include e.g. nursing homes and accommodations for homeless people or refugees.
In the 2011 and 2022 census rounds, a database of all institutions and collective living quarters has already been built up through extensive manual research by the state statistical offices and through several rounds of surveys for the respective census reference dates. As part of the further development of the census methodology for the next round, a similar database on institutions and collective living quarters will be established, but this time as a statistical register. The method of updating the data is currently undergoing further refinement with a focus on using existing data sources (primarily administrative data, supplemented by other data sources like privately held data). Data sources for capturing accommodations for hard to reach populations were identified. These data sources are systematically evaluated to ascertain their quality. Furthermore, the potential for publication and use will be expanded and represents a further development compared with the 2022 census. The aim is not only to make this database usable for future census operations and beyond for other official statistics, but also to establish it as a relevant data basis for the public, science and politics.
The register can make a valuable contribution to supporting overarching social policy or planning decisions at the federal, state and local levels: How many facilities of a certain type of sector are there in Germany, in a federal state or in a municipality? Where can the construction of certain facilities be planned?
Mr Thomas Renaud (University Paris Dauphine - PSL) - Presenting Author
Mr Yves Fradier (Verian Group)
Mr Clément Collin (Verian Group)
The increase in the elderly population in Europe (21% aged 65+ and 6% aged 80+) brings forth issues unique to advanced aging. The growing need for support in loss of autonomy and the diversification of housing arrangements for the elderly underline the importance of targeted data collection among residents in “collective” housing. Indeed, beyond ordinary private housing, a diversity of collective housing arrangements is developing, with varying degrees of services and medicalization. As a result, the scope and concept itself of “residential care” or “nursing home” can refer to distinct realities in different countries
In France, such collective housing options include EHPAD (“maisons de retraite médicalisées”) and other intermediary collective arrangements (“logements-foyers” and “residences services”). Around 5% of the 65+ live in collective housing, less than in Germany or the Netherlands (6 to 8%). However, the longitudinal survey on ageing SHARE struggles to represent the institutionalized population in France due to sampling limitations and difficulties in conducting interviews in nursing homes. Unlike other SHARE countries, the sampling frame in France does not cover nursing home residents, who are not included in refreshment samples so far. Using a new sampling frame based on tax data (FIDELI) will open up the possibility of including these people in future refreshments.
Currently, only panelists who move into EHPAD facilities remain eligible, resulting in limited number of interviews (30 to 60 per wave). Survey administration in nursing homes poses unique challenges. Interviewers often face difficulty determining respondents’ ability to provide informed consent or handling cognitive impairments, which extend interview duration despite a shorter questionnaire. Moreover, practical issues hinder respondent participation, including the gatekeeping role of relatives and nursing home staff
Our work qualitatively examines the difficulties encountered by interviewers and empirically explores the participation characteristics of people living in collective facilities.
Ms Katharina Kraff (ceres - University of Cologne) - Presenting Author
Ms Andrea Albrecht (ceres - University of Cologne)
Ms Jaroslava Zimmermann (ceres - University of Cologne)
Introduction: Although people aged 80 years or older belong to the fastest growing age group in Europe, they often remain underrepresented in surveys due to the poor health or residency in nursing facilities. In Germany, one-tenth of the oldest old live in institutionalized settings. Emerging evidence suggests that exclusion of institutionalized population leads to biased estimates particularly in the oldest old. This study aims to discuss challenges of including nursing home residents in two surveys on the oldest old.
Methods: We used data from the nationally representative study “Old Age in Germany” (D80+) and longitudinal population-based study “Quality of Life and Well-Being of the Very Old in North Rhine-Westphalia” (NRW80+). Both included individuals aged 80 years or older living in private households (PH) and nursing homes (NH). Descriptive statistics and multivariate analyses were used to examine differences between PH and NH according to response and missing rate as well as mode, duration and circumstances of interviews.
Results: In D80+ and NRW80+, response rates were lower in NH in case of using written questionnaires than in face-to-face interviews. Interview duration did not differ between PH and NH. In NH, interviews were conducted more often with a proxy person. While missing rates did not differ between PH and NH in D80+, it was higher in NH within NRW80+. This has been also confirmed in adjusted regression models. The presence of a third person was more often in NH than in PH in case of written questionnaires, whereas it was higher in PH than in NH when using face-to-face interview.
Discussion: Our findings suggest that successful inclusion of NH residents may depend on survey mode and enabling of proxy interviews. Moreover, inclusion of NH did not negatively influence data quality nor interview duration.
Dr Daniele Zaccaria (University of Applied Sciences and Arts of Southern Switzerland (SUPSI)) - Presenting Author
Mr Michael Bergmann (SHARE BERLIN Institute (SBI))
Ageing surveys often face the challenge of potential underestimation of the health status of older populations, particularly in panel studies and for the 'oldest-old'. This bias arises from the over-representation of healthier individuals, who typically exhibit higher participation rates and lower attrition, skewing the data towards a healthier-than-average depiction of the population. As a result, the data may not accurately reflect the true health status, leading to under-reporting of health decline or disability.
To mitigate this problem, proxy respondents are often employed when the primary respondent is unable to provide answers – typically due to cognitive or physical limitations. The use of proxies allows the continued participation of individuals who would otherwise be excluded, maintains the integrity of longitudinal datasets, and reduces selective attrition. However, concerns persist regarding the validity of proxy-reported data. The extent to which proxy responses diverge from self-reported data remains uncertain, with mixed evidence suggesting that for instance proxies may either overestimate or underestimate certain aspects of respondents’ health status. A deeper understanding of how proxies affect different types of data, and addressing the ethical implications of excluding vulnerable populations, will be essential to improving methodologies and ensuring the quality of research on older adults.
Against this background, we use data from Wave 9 of the Survey of Health, Ageing and Retirement in Europe (SHARE) to analyse the role of proxies on data quality. Preliminary results show that the socio-demographic and health characteristics of respondents who require assistance to answer questions in an ageing survey differ from those of regular respondents. Moreover, excluding proxy responses can alter the interpretation of key findings, such as the explanation of self-perceived health—a critical construct in quantitative health research.
Ms Rebecca Schmelzle (German Center of Gerontology) - Presenting Author
Ms Mareike Bünning (German Center of Gerontology)
Ms Marie Franz (German Center of Gerontology)
Mr Michael Weinhardt (German Center of Gerontology)
People living in nursing homes are often underrepresented in general population surveys. As a hard-to-survey group they are often directly excluded from the target population as studies often focus on people living in private households only. However, including nursing home residents is essential for ensuring the generalizability of survey results to the whole population, particularly in research on older adults.
The German Ageing Survey (DEAS) is a nationwide cross-sectional and longitudinal study representative for the German population aged 40 and above. In 2026, for the first time, nursing homes residents will be explicitly included in the sample. We are currently conducting an exploratory pilot study in one nursing home to assess the feasibility of adapting our study design to the specific characteristics of this population.
The aim of the pilot is to identify and develop best practice guidelines to be implemented in DEAS 2026. The nursing home’s management will select 15 participants based on specific physical and mental conditions. At the respondent's request, a trusted person may assist with the interview. A short proxy paper questionnaire is used if the respondent is unable or unwilling to participate. All observations made during the interview will be documented by the interviewer in a feedback report. Through this, we will get a clearer picture which subgroups can or cannot be interviewed, which interview duration is feasible, and to what extent the long-established measurement instrument needs adaptation in terms of length, wording, content or additional aids for the nursing home context. Practical aspects, such as collaborating with nursing staff and identifying suitable interview spaces, will also be considered.
We will share our experiences and results from the pilot study and report on the adaptations we implemented in the DEAS to the situation in nursing homes for 2026.
Dr Annette Scherpenzeel (Nivel) - Presenting Author
Dr Manon Ceelen (Public Health Service of Amsterdam (GGD Amsterdam))
Ms Nina Eckhardt (Public Health Service of Amsterdam (GGD Amsterdam))
Research institute Nivel, in cooperation with the Public Health Service of Amsterdam (GGD Amsterdam) studied the health effects of the conductive energy weapon (CEW) used on individuals by the Dutch National Police. This weapon, also known as ‘taser’ has been available to the Dutch police since 2022. A key target group of this study consisted of individuals in state of confusion, crisis or with mental health issues, who were either taken to a mental health care institution after the use of the taser or who were already residing in such an institution at the time of its use. The goal was to conduct in-depth interviews with a sample from this potentially vulnerable group, as to gain insights into the physical and psychological health effects they may have experienced.
However, the inclusion of individuals from this target group proved to be challenging. Contacting and inviting the target group was hindered by legal and privacy regulations, leading to a significant loss of potential responses. In addition, obtaining co-operation of the organizations and staff of mental health care institutions posed significant difficulties, requiring considerable time and effort, not resulting in the desired contact rate. Furthermore, medical staff frequently reported difficulties in obtaining the cooperation of the target individuals.
In this presentation, we will discuss the obstacles we faced in reaching this hard-to-reach target group and the solutions we attempted to address these challenges.