The social, psychological, and physical impact of COVID-19 restrictions for institutionalized adults with intellectual and developmental disabilities

Abstract

During the COVID-19 pandemic, drastic measures to interrupt SARS-CoV-2 infection chains were implemented. In our study we investigated the consequences of pandemic related restrictions on the social, psychological, and physical well-being of institutionalized adults with intellectual and developmental disabilities. Methods: Online survey among professional caregivers in 71 residential groups, caring for 848 residents. Findings: (i.) A lack of participation concerning infection protection measures of the residents, their relatives, and their caregivers; (ii.) A 20% increase in doctor contacts during the pandemic; (iii.) A considerable deterioration in at least one item of the subdomains mood (49%), everyday skills (51%), social interaction (29%), exercise and coordination skills (12%), behavior (11%) and cognition and communication (7%); (iv.) A deterioration of the overall condition in 41%; Summery: Intensive attempts should be made to find individual and less categorical contra-infectious measures without questioning the basic everyday needs of people with intellectual and developmental disabilities.

1. Introduction

Meeting the needs of people with intellectual and developmental disabilities proves to be particularly difficult during the pandemic outbreak of Severe Acute Respiratory Syndrome CoronaVirus-2 (SARS-CoV-2). People with intellectual disabilities are susceptible to the negative effects of the pandemic, such as mental stress, challenging behavior, exploitation by others, or they may be denied life-saving care (Courtenay and Perera, 2020; Silverman, 2020). Different demands need to be balanced. On the one hand, people with intellectual disabilities need to be protected from viral infections. On the other hand, their individual needs regarding support and maintaining autonomy should be considered.

SARS-CoV-2 is causing the 3rd respiratory endemic or pandemic triggered by coronaviruses, after SARS in the early 2000s and MERS in 2012 (Haque et al., 2020). SARS-CoV-2 infections, known as Corona Virus Disease 2019 (COVID-19), may lead to variable clinical infection patterns ranging from asymptomatic courses to death by cross-organ inflammation, sepsis, and multi-organ failure (Wiersinga et al., 2020). The overall mortality of COVID-19 in the 20 most-affected countries ranges from 0.1% to 5.5%(Nuzzo et al., 2021). By the end of 2022, the WHO had registered more than 643 million infections and 6.6 million deaths (https://covid19.who.int). In addition to country-specific differences, risk factors for increased mortality are older age, male sex, pre-existing comorbidity, and socioeconomic status (Makary, 2020) and intellectual and developmental disabilities (Doody and Keenan, 2021), with the latter also suffering from higher hospitalization levels (Gleason et al., 2021). Since infection often occurs through asymptomatic and oligosymptomatic carriers, social distancing is a central tool for containing the pandemic.

Because of increasing outbreaks of COVID-19 in nursing homes with high mortality rates in spring 2020 (Krone et al., 2021), authorities and care organizations across the world have taken drastic measures to interrupt nosocomial infection chains (Salcher-Konrad et al., 2020). The high time pressure, lack of sufficient experience from prior endemics, and little scientific data finally led to the implementation of partly rigid, undifferentiated, and often inadequately communicated measures. In Germany, older and often multimorbid residents in nursing homes mostly undergo the same life restrictions as people with intellectual and developmental disabilities living in residential homes. Although being carried out strictly under the objective of infection protection, the restrictions are not without negative consequences for the residents. As in all social groups, cohorting and quarantinization lead to social isolation, loss of everyday structure, and limited access to in-person educational and healthcare services in a substantial number of people with intellectual and developmental disabilities too (Jeste et al., 2020), for the latter, however, with much more lasting consequences. In contrast to other population groups, motor- and intellectual under-exposure following COVID-19 restrictions, especially in institutionalized people with intellectual and developmental disabilities, is a substantial risk for ongoing functional deterioration of pre-existing cognitive and physical skills.

To shed light on this additional burden of the COVID-19 pandemic in this particularly vulnerable population, the study presents the results of an online survey among employees of long-term care organizations on the social, psychological, and physical consequences of the COVD-10 associated restrictions for institutionalized adults with intellectual and developmental disabilities.

2. Methods

The online survey among caregivers from long-term facilities for people with intellectual and developmental disabilities was conducted from November 2020 to January 2021. This period covers the second wave of COVID-19 infections in Germany. During that period, workshops and other sheltered outpatient employment services for people with disabilities were temporarily closed by law. Partners, friends, and relatives were prohibited from visiting the residential facilities. Leaving the residential facility was permitted only under certain conditions, mainly for health matters.

Potential participants were facilities in Lower Saxony and Bremen affiliated with the Medical Center for Adults with Disabilities, AGAPLESION Diakonieklinikum Rotenburg. The authors contacted the managing directors by phone, explained the study, and asked them to participate. In the case of their agreement, the access data for the online survey was sent by e-mail. Part 1, covering institutional characteristics, was completed once per institution by the managing director. Part 2, covering the daily living of the residents, was distributed by the managing director to all residential groups of the institution. The questions were answered by the professional caregivers only for the group of people directly cared for by themselves. The survey was conducted using the software Webropol® (Webropol Deutschland GmbH). The following items were surveyed:

Part I Regarding institutional characteristics covered the following topics:

• • General structure and financial sponsorship of the institution

• • Existence and type of additional outpatient care

• • Number and available description of the residents under supervision in the individual institution

• • Monetary compensation related explicitly to the COVID-19 pandemic

• • Education, training, and participation in decision-making processes concerning infection protection measures of (a) the residents, (b) their partners, (c) relatives, (d) legal guardians, and (e) employees of the institutions by official authorities

• • Cooperation with healthcare providers and possible changes in quality of medical care caused by or simultaneous to infection protection measures

Part II of the survey was aimed at the caregivers and nurses working in the residential groups. The reply to Part II was made anonymously and independent of the managing directors` supervision. The answers from Part II related exclusively to the residents directly supervised in the residential group. The aim was to get a realistic picture of the consequences of infection protection measures for the residents. Part II covered the following topics:

• • Characteristics of the residential group including the number of residents, level of intellectual and physical impairments.

• • Changes in physical, psychological, and social impairments following the infection protection measures

• • Way of communicating restrictive measures

• • Management of protection measure violations

• • Degree of influence on education about infection protection measures and on the handling of rule violations by the residential groups

• • Changes in living situation interrupting inpatient care in the residential group, such as external care by the family

3. Results

3.1 Participants

In total, 71 residential groups from 9 different residential institutions participated, taking care of 848 residents (367 female, 443 male, 38 inter/diverse). The degree of intellectual disability was mild (n = 108), medium (n = 284), severe (n = 267), and most severe (n = 165). Ten residents with no stated intellectual disability remained for analysis because they were subject to the same regulations as the rest of the cohort. In addition to intellectual disabilities, the facilities indicated physical disabilities (89%), mental and psychological disabilities (78%), psychosocial disabilities (44%), and other disabilities (22%) of their residents.

3.2 Institutional characteristics

Outpatient care services affiliated with the residential institutions were vocational training centers (7/9), schools for people with intellectual and developmental disabilities (5/9), sheltered workshops (9/9), and structuring occupational support (9/9). The institutions were ecclesiastical (1/9), private foundations (2/9), societies/organizations/specialist societies (5/9), and others (1/9).

One out of the 9 residential institutions received compensation payments related to the COVID-19 pandemic from organizations and societies, three facilities by public authorities, while five residential institutions received no compensation payments. Staff were informed by health- or social authorities about pandemic aspects (4), health aspects (3), social aspects (2), and society aspects (1). Two institutions did not receive any information from public authorities. Representatives of the residential institutions were actively involved in decision-making processes concerning relevant restrictions on the fundamental freedoms by health- or social authorities in 3 out of 9 facilities. The employees of those three facilities rated the level of participation as appropriate to their level of knowledge and ability to participate in 2/3 facilities, whereas 1/3 facility indicated that new suggestions, suggestions for improvement, or objections were only partially considered. Only one facility indicated further participation of legal supervisors and/or authorized representatives, relatives, partners of people with disabilities, or the residents themselves, whereas 8/9 facilities indicated that the groups mentioned above did not participate in the decision-making process.

To maintain medical care during the pandemic, the facilities indicated separate arrangements with special outpatient departments (1/9), hospital departments (1/9), hospitals (1/9), facility-affiliated outpatient departments (2/9), specialist practices (2/9), general practitioners (3/9) and non-physician service providers (e.g. physiotherapy, occupational therapy, speech therapy; 4/9). The quality of medical care during the observation period was stated as unchanged (2/9), largely unchanged, but with isolated restrictions (6/9), or with relevant restrictions, yet without critical shortage (1/9). No facility stated substantial medical undersupply.

3.3 Infection protection measures in the residential groups

Seventy-one residential groups reported on daily living and symptomatology. The following communication strategies for mediating restrictions in mobility, establishing and maintaining social contacts, and disturbances in the everyday structure (the value in brackets denotes the percentage of residential groups) were reported:

• • Exclusively using clearly formulated rules and prohibitions (8%)

• • Exclusively using explanations and appeals (18%)

• • Occasionally using explanations and appeals, mainly using clearly formulated rules and prohibitions (20%)

• • Mainly using explanations and appeals, occasionally using drafted restrictions and bans (54%)

Thirty-nine percent of the residential groups reported violations of infection protection measures by the residents. If rules were violated, the following actions were taken:

• • Individual care (28%)

• • Violations were tolerated without consequences (7%)

• • Individual measures (detailed by groups; 4%)

• • Restrictions using pedagogical measures (detailed by groups; 3%)

Seventy-two percent of the residential groups reported that caregivers on site were able to assess situations individually and make their own pedagogical decisions in addition to cross-residential assessments and action concepts predefined by managing directors or authorities. 16% of the residential groups denied possibilities of participation in pedagogical decision-making and action processes, and 12% judged that cross-residential assessments and action concepts predetermined by the managing directors or authorities were not available, were not feasible, or not helpful, and the team primarily made those situation assessments and pedagogical decisions on site.

Twenty-two residential groups reported changes in living situations interrupting inpatient care by the residents or their relatives due to institutional contact barriers or other restrictions during the COVID-19 pandemic in 35 of the 848 residents.

Using a catalog of given answer options, the residential groups indicated several psychiatric, cognitive, social, and physical changes following the pandemic-related restrictions in everyday life. The results are summarized in Figure 1. The residential groups reported a deterioration in general condition across all factors in 334/848 (39.4%), an improvement in 24/848 (2.8%), and an unchanged general condition in 458/848 residents (54%; no information for 32 residents).

Figure 1.

Cumulative illustration of social and psychological (upper columns) and physical reactions and changes in medical supplies (lower columns) indicated by the residential groups during the pandemic-related restrictions. The percentages shown describe the sum of all residents with an improvement (green columns), without changes (yellow columns), or with deteriorations (red columns) of the respective item queried, based on all 848 residents (=100%). The Grey Columns reflect the proportion of people with intellectual and developmental disabilities in which the individual item was neither present nor significant before nor during the pandemic.

Finally, the residential groups assessed the implementation modalities and consequences of the pandemic-related restrictions concerning the risk of infection with COVID-19 and the resulting significant damage to health as follows:

• • The measures were fully adequate (35%)

• • Most of the measures were appropriate, but in individual cases, the adverse psychosocial and/or health effects of the restrictions predominated (58%)

• • A minor part of the measures was appropriate. In most cases, adverse psychosocial and/or health effects of the restrictions predominated (7%)

• • All measures were excessive and mainly led to adverse psychosocial and/or health effects (0%)

As far as any speech impairment allowed, 111 comments on the lock-down measures by the residents were reported. The content and frequency of the statements made are summarized in Table 1.

Table 1.

Free comments on the lock-down measures by the residents (Grouped by parent content).

Content	n (%)
Missing the daily structure of work, school, or other outpatient participation services	16 (14.4%)
Missing leisure activities	14 (12.6%)
Anger	14 (12.6%)
Missing family / loved ones	10 (9%)
Limitation of autonomy	10 (9%)
When is Corona over?	8 (7.2%)
Missing social contacts in general	6 (5.4%)
The residents feel locked up	5 (4.5%)
Missing special activities (traveling, partying)	5 (4.5%)
Anxiety	4 (3.6%)
The disturbance caused by individual measures (mask, ventilation)	3 (2.7%)
Acceptance of the overall situation	2 (1.8%)
Doesn't want to know anything more about Corona	1 (0.9%)
Others	13 (11.7%)

4. Discussion

Due to the global spread of COVID-19, governments worldwide felt obliged to drastically restrict their citizens' mobility and freedom. Particularly in the case of vulnerable population groups such as people with intellectual and developmental disabilities, these measures lead to considerable restrictions on access to specialized activities and therapies. As people with intellectual and developmental disabilities often depend on a comprehensive support system, the loss of physical and cognitive support and social integration caused by this pandemic usually leads to a substantial and often persistent loss of relevant skills.

As one main result of our study, it turned out that restrictive measures implemented to protect the residents against COVID-19 virus infections had severe side effects on the mental health, psychosocial situation, and physical health of people with intellectual and developmental disabilities.

Our study showed a relevant deterioration of mood and emotionality in over one-third of the residents. In a smaller number, this led to relevant behavioral disorders such as auto stimulation, self-harm, tics, and committing verbal, physical, or sexual abuse. These data corroborate comparable proxy-reported observations from a number of transnational studies evidencing the negative toil of the pandemic on persons with intellectual and developmental disabilities (Theis et al., 2021; Linehan et al., 2022; Rauf et al., 2021; Wieting et al., 2021; Schuengel et al., 2020; Ammar et al., 2021; Drum et al., 2020; Gleason et al., 2021; Navas et al., 2021) and seems to be particularly pronounced in the elderly (McCarron et al., 2021). Several factors might contribute to the deterioration in mental health and behavioral disorders during the pandemic. With mild to moderate intellectual disabilities and a basic understanding of the biological risks of a pandemic, people with intellectual and developmental disabilities might develop considerable fears about the physical consequences of an infection. Limited ability to qualify, objectify, and evaluate the risk of infection and the effects of protective measures and the reduced ability to develop coping strategies might foster emotional disturbances. These limitations highlight the need for a collective support from direct care staff to overcome the effects of COVID-19 lockdown, such as missing social contact, change of daily life, and understanding the preventing measures (Embregts et al., 2022). Due to the restricted access to psychological and educational support measures, the risk of pathological behavior or conflict processing might increase. In addition, studies have shown a relevant increased risk of mental disorders with additionally reduced physical activity (Ammar et al., 2021). Further consequences such as reduced opportunities for positive feedback or success, loneliness, and losing feeling part of a peer group might further exacerbate mental health problems. This assumption is corroborated by the personal statements of those affected regarding social, cultural and physical deprivation (Tab. 1) and is also found as a result of two online surveys in the Netherlands and USA (Tull et al., 2020; van Tilburg et al., 2021)

As shown in other studies (Embregts et al., 2022; Jeste et al., 2020), in our data the loss of daily routines proved to be a central negative consequence of lockdown as well, as outpatient care services were mainly closed. The additional lack of almost all cultural events during the pandemic reinforced this loss of structure. The resulting social breakdown, the lack of interpersonal encounters, and the elimination of essential time structures often led to considerable psychosocial stress and personal and cognitive deprivation. The lock-down and social distancing effect seem to be more severe and prolonged-lasting than in people without intellectual impairments due to limited coping strategies in the case of loss of their familiar and structured frameworks for action. Regardless of the presence and degree of intellectual disabilities, a self-determined structuring of everyday life, based on their own wishes, goals, and standards, represents a core element of individualization from youth to age. Accordingly, months' restrictions in this essential domain bear the risk of long-lasting adverse effects on individualization and personal development of people with intellectual and developmental disabilities. In some studies, the authors describe the use of online media (e.g., video calls) by both individuals with intellectual and developmental disabilities and their caregivers to address the problem of growing social deprivation (Jeste et al., 2020; Willner et al., 2020). Due to communicative impairments of a relevant part of the persons examined, such techniques represent a temporary alternative only for a small part of the persons concerned.

Very few people benefited from the omission of the usual daily structure, providing evidence that a low number of individuals were overstrained with their – usually externally predetermined - daily structure. The author F.B. followed up on these cases in personal communication outside the online survey and noticed that this positively rated effect of the lock-down was frequently observed in people with autistic disorders. This observation might be explained by eliminating frequent or intensive social contacts, which are usually emotionally aversive in autism.

In 21% of the residents, a weight gain during the pandemic was reported, which is also seen in one transnational study (Linehan et al., 2022). Since a considerable proportion of those depends on orthotics, individually adapted wheelchairs, and other mobility-promoting aids, this is a particular challenge in the clientele examined here. In addition, about one in ten was presumed to experience a deterioration of motor skills due to physical inactivity, in about half of them accompanied by a worsening of pre-existing palsies. In subsequent personal communications with one of the authors (F.B.), employees of the residential groups reported a frequent reduction in physiotherapy and occupational therapy treatment offers. As reasons for this, entry- or contact bans on the part of the institutions and reduction of the therapy offered by the therapists themselves were cited, which contradicted the official decrees and provisions of the authorities in Germany, which explicitly provided for the maintenance of outpatient medical-therapeutic measures.

In contrast to the study of Linehan (Linehan et al., 2022), our data showed no significant seizure worsening in epilepsy patients during the pandemic. This may be due to the maintained access to medical care structures as listed below. Regarding the institutional part of this survey, the managing directors revealed that the education about pandemic-relevant aspects and the related financial support services by the authorities varied greatly. The residents themselves, their relatives, and the residential facility were rarely involved in decision-making processes concerning infection control measures, the degree of mobility restriction, or other freedom restrictions. As stated by other authors (Doody and Keenan, 2021), this lack of participation carries the risk of further uncertainties about how to deal appropriately with the special needs of the pandemic. In addition, valuable practical experiences of employees in dealing with conflict-ridden everyday situations are lost.

Relying on cooperation between various healthcare providers, the quality of medical care of the residents examined in our study could largely be maintained, and none of the institutions reported medical undersupply. This is in contrast to a pandemic-related compromised access to healthcare facilities shown in other studies (Drum et al., 2020; Jeste et al., 2020; Rosencrans et al., 2021) and corroborates the need for structured and reliable healthcare even in a situation as challenging as a pandemic.

The type and stringency of implementing infection control measures within the residential groups varied significantly, e.g. concerning concomitant education, degree of restrictions, or consequences of non-adherence. Factors for divergent handling are probably the degree of intellectual disability, pre-existing behavioral disorders, and the essential attitude of the care team. Interestingly, the handling strategies of the managing directors or the authorities were often rated to be ineffective or not feasible, so residential groups adapted strategies to their individual situations. This might be interpreted as a reaction to the fast and highly authoritative form of decision-making during the pandemic.

In relation to pandemic-related health risks, most survey participants (93%) rated the infection prevention measures as appropriate or predominantly appropriate even if accompanied by restriction of the freedom rights. A possible reason might be that employees experienced fear of pandemic-associated health risks. One's own concern and the resulting uncertainty may have led to a higher acceptance of the sometimes rigid, restrictive measures. Another reason for the high acceptance rate could be a role- or self-determination conflict of the residential group employees: Although it is not in line with the self-determination paradigm of modern assistance for the disabled, employees in specialized institutions often talk about their clients as the "people entrusted to us". This view may be construed as a mandate to protect the persons served.

A limitation of our study is the methodological restriction to a principally proxy-oriented data collection because of considerable communicative impairments of the persons concerned as well as the lack of access to the residential groups due to the lock-down regulations. On the other hand, our survey also included direct statements by the respondents in a rather general section with open-ended questions on pandemic-related content (Tab. 1). However, due to their diverging intellectual capabilities, a systematic evaluation of their personal statements was not possible. As all persons investigated are supported in congregated settings, our data do not allow conclusions about comparable effects for individuals cared for in home settings. Further limitations of our study are the restriction to residential groups and caregivers with access to online devices and substantial data dropout from facilities not participating due to pandemic-related reduced staff resources.

5. Conclusion

Accordingly, in the case of future socio-pandemic comparable challenges, more intensive attempts should be made to find individual and less categorical contra-infectious measures without questioning the basic everyday needs of people with intellectual and developmental disabilities. Since the maintenance of structured supports in the sectors of health, social and cultural integration, and participation in working life is a necessary condition for maintaining the quality of life for people with intellectual and developmental disabilities, even temporary interruptions in support pose a high risk of negative long-term effects on the well-being, health integrity and social equality.

ORCID iD

F Bösebeck https://orcid.org/0000-0003-1045-1422