ESRA 2025 Preliminary Program
All time references are in CEST
Surveying people living in nursing homes and other institutions: Challenges and solutions 2 |
| 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)
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| Time | Friday 18 July, 11:00 - 12:30 |
| Room |
Ruppert C - 0.23 |
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
Papers
Surveying people with disabilities in institutional settings: Lessons from the “German Participation Survey”
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.
Establishment of a statistical register of all institutions and collective living quarters
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?
Inclusion of nursing home residents in representative surveys on the oldest old
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.
Proxy Respondents in Longitudinal Ageing Studies: Can They Help to Reduce Bias in Ageing Research?
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.
