Expectations of nursing home residents and their family members during the COVID-19 epidemic: A qualitative study

doi:10.21203/rs.3.rs-2357088/v1

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Research Article

Expectations of nursing home residents and their family members during the COVID-19 epidemic: A qualitative study

https://doi.org/10.21203/rs.3.rs-2357088/v1

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Journal Publication

published 06 Oct, 2023

Read the published version in BMC Nursing →

You are reading this latest preprint version

Background

COVID-19 has spread worldwide. Older people are at the greatest risk of contracting and dying from the virus. Nursing homes are densely populated places for older adults who are generally vulnerable and at high-risk. Although Chinese nursing homes have been trying to protect their residents, the needs and expectations of the residents and their families have been ignored. The aim of this study was to explore and better understand the expectations of nursing home residents and their family members during the COVID-19 epidemic in China.

Methods

Data was collected via face-to-face semi-structured interviews with nursing home residents and focus group online interviews with family members between June 2021 and February 2022. Data analysis followed inductive content analysis.

Results

16 residents and 24 family members were interviewed. Four themes with 11 sub-themes were identified from the descriptions of participants. Their expectations were mainly focus on prevention and control measures for COVID-19, medical capacity of nursing homes, health education and expectations for some aged care policies.

Conclusions

In the face of concerns about the impact of COVID-19 on nursing homes, we sought to bring firsthand perspectives to the forefront by interviewing residents and their family members about their expectations to address this issue. Our findings provide important areas on which should be focused and may improve the sense of gain, happiness, and security of nursing home residents during the COVID-19 epidemic.

Expectations

nursing home residents

family members

qualitative

COVID-19

Since 2020, COVID-19 has spread worldwide. Older people are at the greatest risk of contracting and dying from the virus. A case analysis reported a mortality rate of 8.0% in the 70–79 age group and 14.8% in the 80 years and older age group [1]. Nursing homes (NHs) are densely populated places for older adults who are generally vulnerable and at high-risk. Chinese NHs have taken measures to reduce the risk of epidemic transmission, such as social isolation, confinement, and strict quarantine [2]. However, the fear caused by COVID-19 and some measures have negatively impacted NH residents [3]. Although NHs have been trying to protect their residents, the needs and expectations of the residents and their families have been ignored.

The purpose of this study is to explore the expectations of NH residents and their family members in the context of COVID-19 to better understand NH residents, improve the sense of gain, happiness, and security of them with a view to informing future quality improvement efforts of aged care.

Aim

The aim was to explore and better understand the expectations of nursing home residents and their family members during the COVID-19 epidemic in China.

Study Design and Sample

Descriptive qualitative design with semi-structured and focus group interviews was conducted. Participants including NH residents and their family members were recruited purposively in two NHs (range 260–300 beds) in Jinan, Shandong, China. Residents were recruited by nurses, and family participants were contacted through video-based technology by managers. The criteria for the residents were: (a) being admitted to the NH for ≥ 3 months [4], (b) ≥ 60 years of age [5], (c) cognitively able to communicate normally with a score of more than 26 on the Mini-Mental State Examination [6] and (d) willing to share their thoughts. Sampling of residents was considered adequate when data saturation was achieved. 16 residents and 24 family members participated in the study.

Data collection

We collected data through face-to-face interviews with residents and online focus group interviews [7] with family members.

Semi-structured interview guides were developed based on prior literatures [8, 9]and optimized through pilot interviews. The final guides for residents were: (a) How is your life in the NH? (b) What changes have you experienced since the beginning of COVID-19? (c) What is your need during the COVID-19 epidemic? (d) What are your expectations for NH in COVID-19 epidemic? The guides also included questions on the strengths and challenges of NH care. Residents were interviewed in their living rooms or in NH gardens between November 2021 and February 2022. We started the interviews with their experiences in NHs and encouraged them to speak freely. We told them could stop when they were tired and made an appointment for another time. According to their physical condition and expression willingness, six residents were interviewed once, and ten residents were interviewed twice. Each interview lasted between 40 and 90 minutes and was recorded throughout. Non-verbal messages, including tone of voice, facial expressions, and body language, were also noted down.

Family members were divided into four groups of six, and online focus group interviews were conducted from June to November 2021. C.B. and J.Y. conducted the interviews. Family members were asked to share their expectations, hopes and suggestions for NH in the COVID-19 epidemic. Each interview lasted for approximately 90 minutes and was recorded using screen recording.

Data Analysis

After each interview, the recordings were transcribed into textual material within 24 hours, which explored the emergent themes in subsequent interviews and identified when data saturation occurred until there was no new data. Inductive content analysis [10] including open-ended coding, category creation, and abstraction was carried out to analyze data. We read through the written materials repeatedly and understood non-verbal information. Two researchers analyzed independently. Any questionable derivation was reconciled through research team meetings. Finally, all researchers reviewed the data and findings.

Ethical considerations

Ethical approval

was granted by the Research Ethics Committee of the Second hospital of Shandong University. Electronic or on-paper written informed consent was obtained from all participants, and they could refuse to answer any questions or withdraw from the study at any time. All recordings were kept under the principle of confidentiality.

Rigor

A four-dimensional criterion was used to assess rigor of the research [11]. Pilot interview ensured the rationality of the interview outline. Interviews were conducted according to the residents’ condition with familiar environment, which improved the credibility of data. The study was conducted in the context of a global pandemic of COVID-19 for transferability. Research team meetings and reviewing of all researchers increased the confirmation of findings.

Participants

Characteristics of 16 residents (represented as R1-R16) and 24 family members (represented as FM1-FM24) are shown in Table 1–2. The median age of the residents was 76.3 years (range = 60.0–87.0 y), and all of them had chronic underlying medical disorders. They all had children and only 30% received higher education. The median age of the family members was 49.5 years (range = 29.0–67.0 y). Most of them were children, sons-in-law, or daughters-in-law of NH residents (87.4%), and 87.5% of them lived in the same city where the NH is located.

Table 1

Characteristics of residents (N = 16)
Characteristics	N (%)	Characteristics	N (%)
Gender		Marital status
Female	9 (56.3)	Widowed	6 (37.5)
Male	7 (43.7)	Married	10 (62.5)
Age (years)		Education
60–64	1 (6.1)	Higher education	5(31.3)
65–69	3 (18.8)	Secondary education	6(37.5)
70–74	3 (18.8)	Primary education	5(31.3)
75–79	3 (18.8)	Suffered from chronic underlying medical disorders
80–84	4 (25.0)	Yes	10 (100.0)
≥ 85	2 (12.5)	Months since moving in a NH
Number of children		3–12	3 (18.8)
1	11 (68.8)	13–24	6 (37.5)
2	3 (18.8)	25–36	4 (25.0)
3	1 (6.2)	≥ 37	3 (18.8)
4	1 (6.2)

Table 2

Characteristics of family members (N = 24)
Characteristics	N (%)	Characteristics	N (%)
Gender		Relationship with the resident
Male	11 (45.8)	Spouse	1 (4.2)
Female	13 (54.2)	Child or son-in-law or daughter-in-law	21 (87.5)
Age (years)		Grandchildren	1 (4.2)
20–29	1 (4.2)	Others	1 (4.2)
30–39	1 (4.2)	Place of residence and NH
40–49	10 (41.6)	In the same city	21 (87.5)
50–59	7 (29.2)	In different cities	2 (8.3)
60–69	5 (20.8)	In different countries	1 (4.2)

Expectations of residents and their family members covered four themes and 11 sub-themes, which are shown in Table 3 and are described below.

Table 3

Summary of themes and subthemes
Themes	Subthemes
Prevention and control measures for COVID-19	The necessary supplies for prevention
	Disinfection management of NH
	Access management and visitation regulations
Medical capacity	Professional medical team
	Stable caregiver team with medical knowledge
	More humanistic care
	Psychological counseling service
Health education	Prevention knowledge and skills of infectious disease
Health education	Health care knowledge for older adults
Expectations for some aged care policies	Establishment of community NHs
Expectations for some aged care policies	The publicity of NH

Themes

Theme 1: Prevention and control measures for COVID-19

Sub-theme 1: The necessary supplies for prevention

Residents expressed some concerns about the adequacy of protective materials in NH. Each of them consumed at least two masks per day, which made them worry about the stock of masks. Some others considered whether there would be enough disinfectants and protective clothing for doctors and nurses if COVID-19 invaded. Families also described their concern about the supply of protective materials, such as masks and sanitizers. They all expected that the NH would stock up enough materials to face the threat of COVID-19.

“Nurses ask us to change masks every four hours. The consumption of masks is so high that I hope the free supply will not be cut off.” (R3)

Sub-theme 2: Disinfection management of NH

Residents hoped that the floors, beds, water dispensers and other personal belongings could be disinfected as well as the public environments every day. A dedicated clothes disinfection device and harmless disinfectant with no irritating odor were also on their wish list. Family members wanted the courier packages to be sterilized before entering the NH, and recommended placing quick-drying hand sanitizers in crowded places such as communication rooms, canteens and exercise rooms.

“The virus is so terrible that I hope everything in the house is to be disinfected every day.” (R7)

“Express parcels are easily contaminated with viruses during the mailing process. NH should disinfect the parcels before receiving them.” (FM2)

Sub-theme 3: Access management and visitation restrictions

Family members suggested the NH adopt strict access restrictions. Couriers and material delivery personnel should be restricted to enter in, and items should be handed over without contact. They hoped that the NH workers, including medical staff and caregivers, would house in NH during the epidemic. Even so, residents still expected their families could be allowed to visit them.

“I will miss my kids for sure as time goes by and I hope they can come often.” (R11)

“It is safest for people in the NH not to go out and people outside not to come in, including their staff.” (FM6)

Theme 2: Medical capacity

Sub-theme 1: Professional medical team

Residents were convinced that Chinese medicine would have a preventive effect on the COVID-19 infection, so they expected the NH to provide traditional Chinese medicines to enhance daily health care and increase their resistance. The ability of NH to provide emergency and critical care for COVID-19 patients was the biggest concern of family members. They said that their parents would be difficult to resist infectious diseases with chronic underlying medical disorders, so they hoped the NH have a high-level medical aid team dealing with critical and severe cases.

“I believe that traditional Chinese medicine is more effective against COVID-19, and even if it is used for health care.” (R4)

“....... I really hope the NH would save him when something urgent happens, at least let me see him for the last time. ” (FM11)

Sub-theme 2: Stable caregiver team with medical knowledge

Residents described that the turnover of caregivers was very high. They needed to keep getting familiar with new caregivers and were prone to anxiety. Both residents and family members said that some caregivers could only do simple living care with little knowledge of basic medicine and infectious disease, which was not conducive to limiting the spread of COVID-19.

“When I call my father’s caregiver to know dad’s condition, he doesn’t seem to understand any of the questions I ask about the illness.” (FM9)

“He (caregiver) wiped the ground with 84 disinfectant directly, instead of diluting it in a certain proportion.” (R13)

Sub-theme 3: More humanistic care

Residents said that the visitation restrictions for their family members made them yearn for more care and attention, so they expected doctors and nurses to visit them more often so that they could feel cared for and protected. They hoped NH to offer more recreational activities to distract them from missing their families.

“I want more smiles, more greetings and more love to help drive away my fear (of COVID-19).” (R10)

“I hope there will be more entertainments to make our life different, rather than immersed in missing my family because of the damn pandemic.” (R6)

Sub-theme 4: Psychological counseling service

Residents indicated that the NH services were mainly limited to physical activities and disease treatments, with little psychological care. With fewer opportunities of families visiting, some residents felt anxious, lonely or depressed while struggling with their relatives’ absence. Nearly half of the residents needed psychological counseling or intervention. Family members hoped professional psychologists would be employed by the NH to help the residents in need.

“My mother is prone to anxiety. The epidemic made her even more frightened and disturbed. I hope a psychologist can enlighten her.” (FM17)

Theme 3: Health education

Sub-theme 1: Prevention knowledge of infectious disease

Being unfamiliar with internet, the knowledge of infectious disease of residents mainly came from TV programs or newspapers. They wanted to learn more about COVID-19, especially self-protection methods, the correct choice and wearing method of masks, the transmission route of new coronavirus, and the clinical symptoms of COVID-19.

“I would like to know more clearly what the symptoms will be if I get infected with COVID-19 so that I can receive treatment in the early stages.” (R16)

“If only doctors or nurses could give regular lectures on infectious diseases, so that I can better protect myself.” (R9)

Sub-theme 2: Health care knowledge for older adults

Residents generally attached great importance to their own health. They expected that the NH would hold regular health lectures to broaden their medical knowledge and enrich daily activities at the same time. Family members hoped NH to popularize the knowledge of rehabilitation and exercise of older people so that they could better understand the conditions of their parents.

“I hope the NH could popularize medical and health knowledge to us, so that I will talk with my mother about physical recovery more than just about eating and sleeping.” (FM24)

Theme 4: Expectations for some aged care policies

Sub-theme 1: Establishment of community NHs

Residents described that most NHs were built in the suburbs. The long distance between NH and their home made them feel psychologically alienated. They expressed that if a NH could be established in their communities, the familiar environment would encourage them to give full play to their initiative and boost psychological comfort for them.

“It took us forever to drive here for the first time. The further I was away from home, the more scared I felt.” (R2)

“I really wish the NH is close to home. I would feel much cared for even when family visits were forbidden during the pandemic.” (R8)

Sub-theme 2: The publicity of NH

All participants appreciated the integrated model combining medical services with aged care. But influenced by Chinese traditional culture, both of them also expected the government would publicize the advantages of NH widely, so that people could have a correct understanding of NH.

“Since I sent my mother to the NH, my relatives living in the countryside have accused me of failing to fulfill my duty of supporting my mother.” (FM16)

“People say that I have been abandoned by my daughter (wry smile), but my life in the NH is full and happy.” (FM19)

COVID-19 is a highly contagious, ongoing epidemic that brings challenges to NHs [12]. Although NHs have taken measures to protect their residents, the expectations of residents including family members provide a viewpoint for addressing and understanding this issue, which focused on prevention and control measures for COVID-19, medical capacity of NH, health education and expectations for some aged care policies.

Prevention and control work is crucial to preventing COVID-19.

Residents as well as family members were mainly concerned about the effectiveness of disinfection measures and the reserve of protective materials. Cleaning and disinfection of the environment could effectively control the spread of COVID-19 [13]. Residents mentioned that NH staff lack disinfection knowledge and enough executive power. So NHs should be responsible for training staff on disinfection, and grasp the sterilization intensity because excessive disinfection not only wastes the operating costs, but also exposes the residents to the environment of “potentially excessive sterilization” [14]. NHs should also reserve emergency protective materials, obtain multiple channels for resources, and formulate distribution strategies when materials are insufficient.

Staff access is an extremely risky factor. If the staff could be accommodated in NHs, the risk of staff moving between facilities and their homes might be reduced. Visitation restrictions could interrupt the spread of COVID-19 to some extent, but also affect psychological health of residents [15]. NHs may establish flexible and diversified visitation system, such as video chatting to ease the older adults’ yearning for their families.

Medical team is key to protecting residents from virus threats.

NH residents have high healthcare needs [16]. Because of their weak immunity and resistance, they have become the susceptible and vulnerable groups of COVID-19. In front of the epidemic, their vulnerability becomes obvious, including physical, psychological and emotional aspects [17]. Approximately 58.3% of NH residents have depressive symptoms [18], which had been exacerbated by the epidemic. Therefore, NHs need to establish professional medical teams, such as multidisciplinary health care team, which could not only meet the residents’ needs of daily medical care and psychological interventions, but also have the ability to treat COVID-19 as well as its complications [19].

Turnover or short of caregiver staff is a pervasive challenge for many NHs [20], and their lack of medical knowledge is also a common problem in China [21]. A professional caregiver team could improve the life quality of residents, and solve the contradiction between supply and demand between the residents and the NH. So NHs should be staffed with adequate caring staff which also help to prevent and control infection, help eliminate the residents’ anxiety and bring a sense of security to them.

Improve the health literacy of residents and their family members.

Both residents and their families expected to obtain knowledge of infectious disease and health care to improve their own health literacy. Health literacy refers to the ability of people to obtain health-related information, make health-related evaluations, and improve disease prevention and health decisions [22]. Because of limited access, older adults belong to the weak health literacy group. In terms of the knowledge of infectious disease, targeted education should be conducted on residents’ knowledge blind spots and shortcomings. NHs could carry out popular science publicity through lectures, posters, broadcasts, or sitcoms to improve their health literacy.

Aged care services need policy support.

With advantages in medical care, NHs should be attractive to older adults. However, it seems to be ignored by a large number of Chinese people. Studies have found that awareness of the model of “combining medical service and aged care” among middle-aged and older adults is low [23]. Moreover, due to traditional Chinese culture, many people hold prejudice against institutionalized care. So, Chinese government should publicize the characteristics and advantages of NHs to let more people accept NH.

Community NH is an institution established in the community providing residents with health care, medical treatment, and aged care services [24]. Community-based interventions could effectively reduce the psychological vulnerability [25]. We suggested to build community NHs to meet the multiple needs of medicine, aged care and family emotional support for older people.

Our findings explored the expectations of NH residents and their families, and suggested the importance of psychological and emotional needs of older people in the context of COVID-19. Moreover, this result reinforces the ongoing need for regulating NH development to ensure aged care services are in accordance with the expectations of their residents and family members.

Limitations

Interviews were conducted with nursing home residents and their family members from a single geographic region. The absence of police-makers and is also a limitation. The potential for response bias is another limitation.

Nursing Home

Ethics approval and consent to participate

Ethical approval was granted by the Research Ethics Committee of the Second hospital of Shandong University [KYLL-2021(LW)096] according to The Chinese ethical Code of Statutes, the law concerning concerning human life science and medical research (2019). This research has been performed according to correct ethical practice, as outlined in the Declaration of Helsinki, and adheres to Chinese laws and regulations concerning informed consent and confidentiality. Electronic or on-paper written informed consent was obtained from all participants prior to any interviews, and the participants could refuse to answer any questions or withdraw from the study at any time. All recordings were kept under the principle of confidentiality and were used solely to address the aim of this study.

Consent for publication

All co-authors have read the manuscript and approved its submission to BMC Nursing.

Availability of data and materials

Most data generated or analyzed during this study are included in this published article, and other data could be obtained from the corresponding author.

Competing interests

No conflict of interest exits.

Funding

This work was supported by National Key Research and Development Program of China (2020YFC2006104) and Social Science Planning Project of Shandong (22CZXJ05).

Authors’ contributions

The authors meet the criteria for authorship and have approved the final article. Study concept and design: YX J, QS S; Acquisition of data: BJ C, HL, YC, JM W; Analysis and interpretation of data: BJ C, HL, YC, JM W, YX J, QS S; Drafting of the manuscript: BJ C, YX J; Critical revision of the manuscript for important intellectual content: YX J, QS S.

Acknowledgements

We acknowledge and thank the nursing home residents and family members who participated in interviews and generously shared their perspectives and expectations.

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No competing interests reported.

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Journal Publication

published 06 Oct, 2023

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Editorial decision: Major revision
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You are reading this latest preprint version

Expectations of nursing home residents and their family members during the COVID-19 epidemic: A qualitative study

Status:

Journal Publication

Version 1

Abstract

Background

Methods

Results

Conclusions

Background

Methods

Aim

Study Design and Sample

Data collection

Data Analysis

Ethical considerations

Rigor

Results

Participants

Themes

Theme 1: Prevention and control measures for COVID-19

Sub-theme 1: The necessary supplies for prevention

Sub-theme 2: Disinfection management of NH

Sub-theme 3: Access management and visitation restrictions

Theme 2: Medical capacity

Sub-theme 1: Professional medical team

Sub-theme 2: Stable caregiver team with medical knowledge

Sub-theme 3: More humanistic care

Sub-theme 4: Psychological counseling service

Theme 3: Health education

Sub-theme 1: Prevention knowledge of infectious disease

Sub-theme 2: Health care knowledge for older adults

Theme 4: Expectations for some aged care policies

Sub-theme 1: Establishment of community NHs

Sub-theme 2: The publicity of NH

Discussion

Limitations

Conclusions

Abbreviations

Declarations

References

Additional Declarations

Status:

Journal Publication

Version 1