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Experiences of Nurses Working at Day-Service Centres for People with Intellectual Disabilities/Intellectual and Physical Disabilities and Their Interactions with Service-Users

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Title: Experiences of Nurses Working at Day-Service Centres for People with Intellectual Disabilities/Intellectual and Physical Disabilities and Their Interactions with Service-Users
Language: English
Authors: Yoshimi Ito, Kyoko Asakura, Shoko Sugiyama, Nozomu Takada
Source: British Journal of Learning Disabilities. 2024 52(1):66-75.
Availability: Wiley. Available from: John Wiley & Sons, Inc. 111 River Street, Hoboken, NJ 07030. Tel: 800-835-6770; e-mail: cs-journals@wiley.com; Web site: https://www.wiley.com/en-us
Peer Reviewed: Y
Page Count: 10
Publication Date: 2024
Document Type: Journal Articles
Reports - Research
Descriptors: Foreign Countries, Nurses, Intellectual Disability, Physical Disabilities, Interaction, Day Programs, Social Services, Interpersonal Relationship, Caring, Social Support Groups, Social Life, Mental Health, Physical Health, Psychological Patterns, Adjustment (to Environment), Participation, Activities, Attitudes
Geographic Terms: Japan
DOI: 10.1111/bld.12546
ISSN: 1354-4187
1468-3156
Abstract: Background: People with intellectual/intellectual and physical disabilities frequently use day-service centres, an array of services that involve the provision of care and social activities during the daytime and offer homebound people with disabilities opportunities to live in their communities. While nurses working at day-service centres for people with disabilities are expected to promote service-users' health, little research has focused on this area. Nurses' relationships with service-users of day-service centres have not been sufficiently investigated regarding how their interactions determine service-users' specific activities and daily lives within such facilities. This study sought to address this research gap. Methods: We conducted a qualitative descriptive study with six nurses working at day-service centres located in Tohoku region, Japan. Six participants were interviewed 16 times. The psychological-phenomenological method developed by Amedeo Giorgi was used as the model for data analysis. Findings: The analysis generated five themes. First, nurses show interest in service-users by 'continuing to show interest' and by 'trying to understand the service-users from the perspective of what they can do'. Additionally, the nurses ensure that service-users enjoy their time in the facility by 'supporting enjoyment through nursing and medical care', 'stabilising feelings' and 'creating an environment conducive to everyone's comfort'. Conclusions: Nurses working at day-service centres for people with intellectual/intellectual and physical disabilities provide support for social participation while maintaining the service-users' mental and physical health. Thus, these nurses support enjoyment among service-users from the nursing and medical care aspect; they also devise ways for service-users to interact and adjust to the environment to improve service-users' comfort at day-service centres. Furthermore, participation in daytime activities at day-service centres indicated that nurses are interested in service-users' activities, and they perceive service-users as positive individuals.
Abstractor: As Provided
Entry Date: 2024
Accession Number: EJ1410326
Database: ERIC
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  Value: <anid>AN0175229972;f0401mar.24;2024Feb06.04:20;v2.2.500</anid> <title id="AN0175229972-1">Experiences of nurses working at day‐service centres for people with intellectual disabilities/intellectual and physical disabilities and their interactions with service‐users </title> <p>Background: People with intellectual/intellectual and physical disabilities frequently use day‐service centres, an array of services that involve the provision of care and social activities during the daytime and offer homebound people with disabilities opportunities to live in their communities. While nurses working at day‐service centres for people with disabilities are expected to promote service‐users' health, little research has focused on this area. Nurses' relationships with service‐users of day‐service centres have not been sufficiently investigated regarding how their interactions determine service‐users' specific activities and daily lives within such facilities. This study sought to address this research gap. Methods: We conducted a qualitative descriptive study with six nurses working at day‐service centres located in Tohoku region, Japan. Six participants were interviewed 16 times. The psychological‐phenomenological method developed by Amedeo Giorgi was used as the model for data analysis. Findings: The analysis generated five themes. First, nurses show interest in service‐users by 'continuing to show interest' and by 'trying to understand the service‐users from the perspective of what they can do'. Additionally, the nurses ensure that service‐users enjoy their time in the facility by 'supporting enjoyment through nursing and medical care', 'stabilising feelings' and 'creating an environment conducive to everyone's comfort'. Conclusions: Nurses working at day‐service centres for people with intellectual/intellectual and physical disabilities provide support for social participation while maintaining the service‐users' mental and physical health. Thus, these nurses support enjoyment among service‐users from the nursing and medical care aspect; they also devise ways for service‐users to interact and adjust to the environment to improve service‐users' comfort at day‐service centres. Furthermore, participation in daytime activities at day‐service centres indicated that nurses are interested in service‐users' activities, and they perceive service‐users as positive individuals.</p> <p>Accessible summary: This study shows how nurses working at day‐service centres for people with disabilities in Japan understand their approach and engage with service‐users.Nurses working at day‐service centres understood the service‐users and focused on what they were good at and what they were able to do. Based on this understanding, the nurses use specialised knowledge to ensure that service‐users can enjoy their time at the day‐service centres, while providing approaches for mental and physical stability and support for daytime activities.Nurses attempt to make service‐users feel comfortable at day‐service centres to encourage them to continue visiting the centres.This study is relevant to people with disabilities, as it contributes to future nursing care direction for this population from the perspective of nurses' professional experiences.</p> <p>Keywords: day services; day‐service centres; nurses; people with intellectual disability; qualitative research</p> <hd id="AN0175229972-2">INTRODUCTION</hd> <p>People with disabilities have a right to activity and participation (United Nations, [<reflink idref="bib23" id="ref1">23</reflink>]). However, people with intellectual disabilities or severe physical and mental disabilities do not fully enjoy this right (Dusseljee et al., [<reflink idref="bib8" id="ref2">8</reflink>]; Vlaskamp et al., [<reflink idref="bib25" id="ref3">25</reflink>]). To guarantee this right, the Convention on the Rights of Persons with Disabilities imposes various obligations on State parties (United Nations, [<reflink idref="bib23" id="ref4">23</reflink>]). Based on the normalisation principle, it is important to use local resources to meet the needs of people with disabilities; however, they can use only a few facilities in Japan with peace of mind, and there are issues in gaining understanding from local people (Nakamura et al., [<reflink idref="bib21" id="ref5">21</reflink>]). People with disabilities need greater support in various aspects of daily life and social participation (Verdugo et al., [<reflink idref="bib24" id="ref6">24</reflink>]; Wilson et al., [<reflink idref="bib29" id="ref7">29</reflink>]). Furthermore, they are more likely to develop various health problems than people without disabilities (While & Clark, [<reflink idref="bib27" id="ref8">27</reflink>]); therefore, observation and care by supporters involved in familiar situations are important. To effectively provide support according to these people's characteristics, day‐service centres are available. Day services provide diverse activities and recreation opportunities besides nursing care such as feeding assistance to people with disabilities (Munde & Vlaskamp, [<reflink idref="bib20" id="ref9">20</reflink>]) and relieve their families of caregiving responsibilities (Fleming et al., [<reflink idref="bib10" id="ref10">10</reflink>]).</p> <p>Supporters at day‐service centres provide important services to people with disabilities. As noted in previous research, people with disabilities generally prioritise their relationships with staff members (Mason et al., [<reflink idref="bib15" id="ref11">15</reflink>]). As support is entrusted to day‐service centres' staff members, they are viewed as 'key stakeholders' with the power to influence important decisions in users' lives (Mason et al., [<reflink idref="bib15" id="ref12">15</reflink>]). Additionally, in a case of profound disability, the high degree of impairment renders it difficult for individuals to set goals for themselves, forcing them to entrust decisions to someone close to them (Doody et al., [<reflink idref="bib7" id="ref13">7</reflink>]). These findings clarify that staff relationships and support tremendously affect this population's daily activities and quality of life. Nurses provide different important healthcare roles to ensure that people with disabilities who are prone to various health challenges participate in daily activities. Moreover, nurses help promote health and prevent diseases in all healthcare settings and communities (International Council of Nurses, [<reflink idref="bib13" id="ref14">13</reflink>]). For effective practice, nurses at day‐service facilities are required to engage with and practice care according to the individuality of people with disabilities who are the target of care. Nurses address the physical, mental and social needs of people with intellectual disabilities across the continuum of care through health‐related management, promotion and education (Doody et al., [<reflink idref="bib7" id="ref15">7</reflink>]). Nurses in Japan are required to work in day‐service centres and medical institutions, and while working in day‐service centres, they assist service‐users in maintaining and improving their health.</p> <p>The degree of individualisation in managing relationships with people with intellectual disabilities is hardly exclusive to day‐service centres. Nurses are known to learn and interpret intellectually disabled users' specific communication styles (While & Clark, [<reflink idref="bib28" id="ref16">28</reflink>]). This is necessary because people with severe and profound intellectual disabilities also use non‐verbal methods, such as facial expressions, sounds, movement, body posture or muscle tension (Vos et al., [<reflink idref="bib26" id="ref17">26</reflink>]), to express themselves. Furthermore, a long‐term provider–patient relationship is considered a prerequisite for nurses to understand patients with intellectual and developmental disabilities (Appelgren et al., [<reflink idref="bib1" id="ref18">1</reflink>]). Previous studies have focused on the stress nurses experience as they take care of people with intellectual disabilities, finding that although devoid of overt prejudice and discrimination, their perceptions can be infused with attitudes of infantilisation and paternalism (Capri & Buckle, [<reflink idref="bib4" id="ref19">4</reflink>]; Desroches, [<reflink idref="bib5" id="ref20">5</reflink>]). Thus, even as nurses acknowledge the highly individualised approaches and time required for caring for people with intellectual disabilities in various settings, they can still feel that they are not performing their duties effectively.</p> <p>To build a more inclusive society, Japan's government has provided policies to integrate people with disabilities into community life and thus support self‐actualisation by maximising their ability to participate of their own volition in the full range of activities in society (Cabinet Office, [<reflink idref="bib2" id="ref21">2</reflink>]). These policies have increased the number of people with disabilities residing at home, and the effect can be seen in the 2016 report in which an estimated 962,000 people with intellectual disabilities were classified as homebound (Cabinet Office, [<reflink idref="bib3" id="ref22">3</reflink>]). Approximately 22% of homebound people with disabilities in Japan utilise day services meant for people with disabilities (Harada, [<reflink idref="bib12" id="ref23">12</reflink>]). Day‐service centres are one of the day services provided for them. This service category—sometimes called care for daily life—is intended for people with disabilities who require continuous nursing care (Ministry of Health, Labour and Welfare, [<reflink idref="bib16" id="ref24">16</reflink>]). Day‐service centres' staff comprise a manager, a service manager, lifestyle support staff and nurses. Day‐service centres are provided for these groups through necessary care and various activities during the daytime. In this service, they are obligated to employ nurses who collaborate with lifestyle support staff to aid service‐users. Nurses are employed to provide medical care and help maintain mental and physical health. However, no study has clarified the experiences of nurses working with this population at day‐service centres. Thus, this study clarifies how nurses working in day‐service centres for people with disabilities perceive their approach and engagement with service‐users, to propose future directions of nursing care for this population from the perception of nurses' professional experiences.</p> <hd id="AN0175229972-3">METHODS</hd> <p></p> <hd id="AN0175229972-4">Research design</hd> <p>This study adopted a qualitative descriptive design and data were analysed using the psychological‐phenomenological approach developed by Giorgi (2009/[<reflink idref="bib11" id="ref25">11</reflink>]).</p> <hd id="AN0175229972-5">Participants</hd> <p>Participants were purposively selected among nurses working in day‐service centres, a class of day‐service facilities for people with disabilities. There are 8268 day‐service centres for people with disabilities in Japan (Ministry of Health, Labour and Welfare, [<reflink idref="bib18" id="ref26">18</reflink>]). Only nurses who had worked as registered or assistant nurses at day‐service centres for 1 year or longer were considered eligible to participate. This minimum work history was adopted to ensure all nurses had the chance to witness normal operations within their centre for a full year.</p> <p>Nurses were solicited to participate by letter or phone call. Six nurses, comprising four registered and two assistant nurses working at day‐service centres in Japan's Tohoku region, agreed to participate. In Japan, both registered and assistant nurses assist with medical treatment and provide medical care; however, their chains of command when performing these tasks differ. Licensed assistant nurses can practice under the direction of a doctor or nurse. The participants had provided care to people with intellectual disabilities and/or profound motor and intellectual disabilities. They were between 40 and 60 years old with 2–25 years of working experience in day‐service centres. Before working at the current centre, each participant had worked in a hospital or clinic. Their responsibilities at the centres included daytime activities such as occupational and recreational support besides healthcare and medication management. Only one nurse was employed by the centre for every five participants. One participant's employer had two nurses, but they worked on different, nonoverlapping days of the week. Thus, these nurses assisted service‐users in collaboration with lifestyle support staff.</p> <p>People with intellectual disabilities constituted a majority of the centres' service‐users, and people with intellectual and physical disabilities occupied the second‐largest proportion. Service‐users were between 20 and 80 years old. Most lived with family members, but some commuted from a group home. Daily, 15–40 service‐users visited each centre. People with disabilities in Japan are assigned a <emph>disability support classification</emph>—a standard, integrative measure of the degree of assistance they require based on different aspects of disability and other physical and mental considerations. Grade 1 indicates the lowest level of support, and Grade 6 is the highest (Ministry of Health, Labour and Welfare, [<reflink idref="bib17" id="ref27">17</reflink>]). Of the service‐users included in this study, 80% were Grade 4 or higher. Some service‐users at some centres also required medical procedures, such as feeding via a nasal tube or gastric fistula, sputum aspiration and stoma management.</p> <hd id="AN0175229972-6">Data collection</hd> <p>Data were collected during January–December 2020 through two or three semistructured interviews per participant. The first author (Y.I.) conducted all interviews. Before conducting the interviews, Y.I. observed each participant for a day (shadowing). Participants were interviewed based on their usual work routines, which were observed and noted during shadowing. Shadowing was only employed to generate interview items and was, therefore, excluded from the analysis.</p> <p>Each participant was shadowed by Y.I. from 0900 to 1600, the time of day when service‐users were present at the centre, on a day of the nurse's choice. Y. I. recorded in a field notebook what she noticed about nurses' interactions with people with disabilities, their relationships with other staff and other related observations. These notes were utilised during subsequent interviews for memorising purposes.</p> <p>Each interview was held in a location of the participants' preference, where their privacy could be ensured. Two or three interviews were conducted per nurse; each session lasted for 30–70 min. The number of interviews differed between participants because either we were unable to obtain the necessary data in two sessions or because the interviews could not be conducted due to the participants' circumstances. The interviews were recorded using an electronic device, with the participants' consent. Nurses were encouraged to respond freely and candidly while following the interview guide. The major interview topics were specific duties and roles at the day‐service centre, approaches taken to ascertain service‐users' thoughts, how nurses personally wanted service‐users to spend their time at the facility and how they shaped their interactions with them for that purpose. Participants were also presented with memorable situations and episodes recorded by Y.I. during the observation day; they were asked to share what they were thinking and feeling at that time, what thoughts were guiding those interactions, etc.</p> <hd id="AN0175229972-7">Data analysis</hd> <p>Giorgi (2009/[<reflink idref="bib11" id="ref28">11</reflink>]) psychological‐phenomenological approach served as the model for data analysis. First, Giorgi's approach was selected because of its status as a widely recognised, established and structured technique for analysing qualitative data. Second, its confirmed aim is to describe as completely as possible the experience of interest as felt by subjects aligned well with our study objective.</p> <p>The responses were first analysed individually by the participants and then compared across all participants to identify common themes. Per the research objective, the following points were examined: (<reflink idref="bib1" id="ref29">1</reflink>) What is the level of interest of nurses working in day‐service centres towards service‐users? (<reflink idref="bib2" id="ref30">2</reflink>) How do nurses practice nursing in the context of their interest in nursing service‐users?</p> <p>First, the interviews' audio recordings were transcribed. Second, the researchers familiarised themselves with the data by repeatedly perusing all transcripts to obtain a comprehensive understanding of the data. Third, another close reading to identify important shifts in meaning; at each shift, the transcript was annotated to segment it into units of meaning. Finally, we extracted semantic units related to the research's purpose and described each semantic unit so the meaning of participants' experiences could be conveyed more clearly. The themes were derived by comparing the semantic units and considering their mutual relationships.</p> <hd id="AN0175229972-8">Validity, reliability and rigour</hd> <p>Data were analysed in parallel with their collection. During the entire process, the authors consulted university instructors and graduate students with a wealth of experience in qualitative research to discuss their analysis and interpretation. Validity was ensured by repeatedly discussing points of divergence until all parties' interpretations concurred.</p> <hd id="AN0175229972-9">Ethical considerations</hd> <p>The study was approved by the Ethics Committee at Tohoku University Graduate School of Medicine (accession no. 2019‐1‐507). Written informed consent was obtained from all participants before data collection. Participation was voluntary. Participants were informed and reminded of their right to withdraw from the study and that their participation or withdrawal would not affect their employment status. Participants' names and the day‐service centres they worked for are replaced with pseudonyms to protect their anonymity.</p> <p>Permission was obtained from service users for observation. First, Y.I. explained that she would observe the nurses and obtain verbal permission from the service‐users. Next, Y.I. and the nurse verbally asked and obtained permission from a service‐user, each time, before Y.I. observed the nurse providing care to that service‐user. Even after obtaining permission from the service‐user, if the nurse thought that the service‐user did not want to be observed, Y.I. stopped the observation.</p> <hd id="AN0175229972-10">FINDINGS</hd> <p>Collectively, the six participants were interviewed 16 times. Five themes were generated through data analysis. As outlined in Analysis 1, the results clarified that nurses showed interest in service‐users by 'continuing to show interest' and 'trying to understand the service‐users from the perspective of what they can do'. As outlined in Analysis 2, nurses practice nursing so that service‐users can enjoy their time at the centre. Specifically, the results revealed that nurses 'support enjoyment through nursing and medical care', 'stabilise feelings' and 'creating an environment conducive to everyone's comfort'. Each theme is explored in detail below. Data that clearly represent the theme are quoted.</p> <hd id="AN0175229972-11">How do nurses show interest to service‐users?</hd> <p>Nurses who participated in this study showed their interest in the service‐users by 'continuing to show interest' and 'trying to understand the service‐users from the perspective of what they can do'.</p> <hd id="AN0175229972-12">Continuing to show interest</hd> <p>People with intellectual disabilities and severe mental and physical disabilities often find it difficult to express their intentions and feelings through language. Nurses continued paying attention to the intentions and wishes of service‐users who have difficulty in verbal communication from the beginning of their involvement to the present. When the nurses began working with service‐users, they failed to understand the service‐users, and service‐users also had no idea about the nurses. Nurses approached service‐users whenever they saw them and tried to understand their interests and how they can help them. Checking on service‐users whenever they saw them meant that the nurses were constantly concerned about their presence and eager to pay attention to them. Sara was sometimes intimidated by service‐users' behaviour while establishing relationships with them. Nevertheless, Sara continued engaging and interacting with the service‐users, gradually understanding what they were attempting to communicate.</p> <p>Sara: I want to complain, but I'm not sure if they will understand whatever I say because they have that condition. They bite and scratch people when they're angry. I have lost count [of] how many times my hair was pulled or how many times I was bitten. Despite that, I spent time with them every day and gradually understood what they wanted to say.</p> <p>However, despite several interactions, nurses still wanted to know more about the service‐users and had doubts about their assumptions' accuracy. Nurses observed changes in service‐users' behaviours and inferred their feelings based on those changes. Due to service‐users' difficulties in verbally expressing themselves, Hana felt that their judgements were merely figments of their imaginations, believing that they cannot grasp the service‐users' true feelings. Moreover, Hana believed that service‐users have difficulty communicating verbally; thus, it was important to continue showing interest in their behavioural changes and paying attention to what they were trying to say.</p> <p>Hana: He can't speak. So, he can only feel and is only able to express himself by making strange sounds. That's why I always wonder if something happened to him. This is the only thought that comes across my mind.</p> <hd id="AN0175229972-13">Trying to understand the service‐users from the perspective of what they can do</hd> <p>Nurses focussed on what service‐users could do and were good at rather than what they could not do or could not do well. Furthermore, they understood what service‐users were unable to do and attempted to avoid making them feel uneasy in the day‐service centre or on matters affecting their activities. Nurses recognised that service‐users could not do some things even if they tried; thus, nurses encouraged service‐users to focus on what they could do rather than what they could not. Hana tried to determine what the service‐users were currently able to do. She considered service‐users being able to do something as a strength and thought it important to encourage activities that highlighted their strengths and provide care for the same. She believed that the service‐users played a central role in the activities, and nurses were in a position to support them.</p> <p>Hana: We are supporters and can only support them with what they cannot do. Moreover, I think it is our job to find the strengths of the service‐users. It is good when they are able to do more things, and we celebrate this increase together.</p> <p>What service‐users can do refers to things that are important not only now but will also in the future. Nurses focus on what service‐users can do because they care about their users' future. When family members can no longer provide the care a person with a disability requires, service‐users are frequently forced to stay in a residential facility. When a service‐user's living environment changes and the primary caregiver shifts from a family member to a support staff member in an inpatient facility, Sara wants them to feel as at ease as possible. When service‐users are not bothered, they find other ways to express their intentions, making it easy for nearby support staff to notice them and allow them to do things with ease in the support staff's presence.</p> <p>Sara: It's impossible for them to live alone forever, and in the future, they'll need to enter a residential facility. So, when that time comes, I feel sorry for them because they are told that 'they can't do it'. That's why I feel sorry that they are unable to express their feelings. So, as much as possible, I want them to be able to do what they can do, and I want to give them the means to complain.</p> <hd id="AN0175229972-14">Nursing practice</hd> <p>Nurses considered their role as that of providing care for service‐users so that service‐users could enjoy their time at day‐service centres. Helping them have a good time included ensuring that the moment was enjoyable preparing them physically and mentally so they had fun while at the centre, and helping them acquire the skills they need to have fun in the future. To achieve these, nurses were expected to 'support enjoyment from the standpoint of nursing and medical care', 'stabilise feelings', and 'creating an environment conducive to everyone's comfort'.</p> <hd id="AN0175229972-15">Supporting enjoyment from the standpoint of nursing and medical care</hd> <p>Nurses understood that their role was to support service‐users' health. Nurses believe that service‐users have health values; their actions are based on these values and cannot be imposed on matters pertaining to their health. For example, the service‐user may be physically unhealthy. However, after considering that person's entire life, Karen decided that instructing the service‐user on diet matters would be inappropriate. Karen believed that service‐users have a sense of worth and that their health decisions should be made by them rather than imposed by medical personnel. Consequently, while Karen explains desirable health behaviours, service‐users decide what actions to take. Furthermore, Karen pays attention to service‐users and shares information with their supporters in the community and families so that abnormalities can be identified quickly. For example, service‐user's supporters informed Karen that his room at home was like a garbage dump. However, she realised that the service‐user's room contained things that were irreplaceable and important to him. Therefore, she did not encourage the service‐user to clean his room; rather, she supported him to continue enjoying daily life by monitoring his progress. Nurses consider ways to stabilise service‐users' mental and physical conditions to promote their ability to continue enjoying daily life without direct intervention.</p> <p>Karen: That person's room is filled with garbage stacked like mille‐feuille, but they treat everything like treasure, so they buy and eat whatever they want to eat. They also look forward to eating there. From a health standpoint, it's unhealthy, but from the standpoint of their quality of life, it's very good. I can't unreasonably force things on them that they don't want themselves, from what you can understand.</p> <p>Nurses also identified service‐users who struggle to make decisions and act independently. In such cases, nurses provided health support and held discussions with service‐users, their families and other supporters after determining that the difficulties could affect not only the service‐users' current health condition but also their future health. Even if a service‐user did not like the assistance, Sara found solutions that the service‐user could accept and implement. For example, Sara may occasionally sing songs to distract service‐users while she provides necessary care. Consequently, nurse‐provided care protects service‐users' health and contributes to their attendance at day‐service centres.</p> <p>Sara: There are service‐users who do it on their own initiative, and there are service‐users who say they don't like it, but nurses distract them by singing songs while they provide support. Once or twice a year, the dentist comes to check their teeth, so they're surprisingly good at brushing their teeth because the dentist tells them that the condition of one's mouth is related to pneumonia and that taking care of one's teeth is important in preventing cold and aspiration.</p> <hd id="AN0175229972-16">Stabilising feelings</hd> <p>Service‐users may come to day‐service centres with unresolved issues from their homes or group homes. The nurses wanted the day‐service centre to be enjoyable, so they attempted to soothe the service‐users' feelings. Taking note of their complaints was not going to help them feel better. For example, Naomi responded to service‐users who complained of pain by examining their temperature and observing the pain locations. Naomi perceived that service‐users desired more than just treatment; they desired someone who cared about them and was only interested in them for a short time.</p> <p>Naomi: I want you to do something. That person will come. They will say 'My hand hurts'. When I request to see it, I discover that nothing happened to them, so I ask them where it hurts. They then say, 'It hurts here', and with an innocuous medicine, I tell them 'Okay. I'll apply the medicine right here'. When I do that, they just say, 'thank you', and go home cheerfully. At first, they would say, 'It hurts here'. They're not forceful, but they are frustrated, so when I respond to their complaints, they calm down and go home.</p> <p>Furthermore, nurses investigate the reason service‐users are unable to remain calm and try to understand their situation. Nurses would sometimes listen to the service‐users' mothers to understand how to approach them. While speaking on behalf of the service‐users' alleged feelings, Sara attempted to reflect on the conflict and loneliness. While acknowledging that it will not be a permanent solution, Sara assessed the service‐users' feelings at the time and attempted to interact with them to reduce their loneliness as much as possible.</p> <p>Sara: He doesn't have a place to call his own (at home), and whenever he comes here, he doesn't want to go home and refuses to even get in the car. I thought he may have conflicts of his own. He can't say it in words, but he expresses them through his actions. He complains that his knee hurts. I tell him to let me see it, and he could only say, 'Hmm?' However, when I say, 'It hurts, right?' it means that I'm going to touch it.</p> <hd id="AN0175229972-17">Creating an environment conducive to everyone's comfort</hd> <p>Day‐service centres are places away from people's homes where they can spend time with others. The nurses thought it was important for service‐users to come to day‐service centres from their homes because it allowed them to interact with different people and participate in different activities. Sara recognised that day‐service centres increase their experience and provide them with skill acquisition for effective communication with others by expanding the world in which they are active.</p> <p>Sara: If these service‐users stay at home with their mothers, they will be trapped in a very tiny world. So, once they leave their home, they would be able to interact with different people and try out new activities. They can also go out and to other places like the library and get along with the people in the library. They can go to festivals with people from the community centre. They are also surprisingly good friends with the people in the neighbourhood.</p> <p>Nurses are concerned with individuals' and service‐users' comfort in the centre. They devised ways to improve the facility's environment and interactions with service‐users while thinking about this balance. First, precautions were taken to ensure that the supporters and the facility's environment did not endanger the service‐users. Megumi tried not to stop what the service‐users were doing because she was aware that service‐users' feelings were stable when performing the act. These considerations are intended to put service‐users at ease and keep nurses from being perceived as a threat.</p> <p>Megumi: I think it's probably better for mental stability not to stop ritualistic behaviour. That's why, I wonder if I'm expected to have the attitude of patiently waiting patiently.</p> <p>Each service‐user's behaviour does not necessarily lead to the comfort of everyone present. Other service‐users may be annoyed or feel uncomfortable due to a service‐user's casual behaviour. Nurses continued to tell them that they should not do things that they judge would have a negative impact on the people around them. Even if a service‐user does not intend to, the other party may feel offended. Therefore, nurses considered how the other party feels when deciding how to respond. Furthermore, nurses pondered about whether service‐users' behaviour is acceptable given the societal norms, according to which, behaving in an undesirable way carries the risk of being ostracised by society. Megumi thought that it was important for service‐users to behave in a way that does not deviate from societal norms.</p> <p>Megumi: (Taking) someone else's things can be a crime if you go out into society, so I wondered what it would be like.</p> <p>Nurses wanted to use day‐service centres' (where people spend time in groups) characteristics and encourage service‐users to have fun. When one service‐user was being loud and having a good time with the other service‐users, Sara did not say anything and enjoyed herself with them.</p> <p>Sara: There is a difference between a loud voice, having fun and laughing, and a voice that wants to appeal to something and is saying it. When service‐users are having fun and laughing or singing, I don't say anything.</p> <hd id="AN0175229972-18">DISCUSSION</hd> <p>This study is the first to investigate nurses' relationships with service‐users of Japanese day‐service centres for people with disabilities. This survey's results indicate that nurses tried to stabilise physical and psychological aspects of the service‐users' lives by 'supporting enjoyment from the nursing and medical care standpoint' and 'stabilising feelings'. Based on service‐users' mental and physical stability, the nurses try to 'create a comfortable environment conducive for everyone', so the users can continue going to the day‐service centres. Going to the centre meant creating relationships with people outside their family and establishing a connection with society. That is, nurses support the service‐users' social participation, starting from commuting to day‐service centres in the community. However, service‐users had limited life experiences, making it difficult to recognise their wishes and articulate them to others. Consequently, nurses attempt to understand service‐users' desires and intentions by 'trying to understand the service‐users from the perspective of what they can do' and 'continuing to show interest'. In this study, we examined the meaning of nurses promoting service‐users' social participation and how to understand service‐users' daily experiences.</p> <p>Based on the principle of normalisation, which aims to create a society where both people with and without disabilities can support each other and live in the community, Japan promotes the independence and social participation of people with disabilities (Ministry of Health, Labour and Welfare, [<reflink idref="bib19" id="ref31">19</reflink>]), and day‐service centres attempt to play a role in this. Going to day‐service centres allows them to spend time away from their families (people who are familiar with them) and interact with the world outside their homes. Nurses who were interviewed for this study also stated that they help service‐users increase their interactions with others and improve their life experiences at day‐service centres; simply going to the day‐service centre could lead to social participation for service‐users.</p> <p>Nurses recognise that it is important for service‐users to continue attending day‐service centres and, therefore, consider it their responsibility to improve service‐users' mental and physical conditions. While understanding the service‐users' wishes, the nurses attempted to find and implement a care method that would suit them. Furthermore, for a service‐user to participate in activities safely, nurses must understand the activity's content, determine whether the service‐user is able to participate based on their physical and mental condition and identify the parts in which the service‐user can participate with adequate assistance. Nurses in day‐service centres create an environment in which service‐users can connect with society by maintaining health conditions and activities rather than relieving boredom and a lack of stimulation for people with disabilities (Femia et al., [<reflink idref="bib9" id="ref32">9</reflink>]). The findings of this study are in line with Appelgren et al. ([<reflink idref="bib1" id="ref33">1</reflink>]), who highlight that nurses, nevertheless, felt that the care had to be based on the perspective of patients with intellectual and developmental disabilities, and it has to be what they wanted before it was modified to what seems reasonable. Furthermore, the nurses were trying to monitor the progress of the service‐users' health, including their diet, so that they could remain involved and ensure that they do not miss the right moment to intervene, suggesting the importance of a long‐term perspective.</p> <p>Nurses were more interested in what service‐users were able to do and what they were good at rather than what they were unable to do or were not good at. Furthermore, nurses shared fun times with service‐users through activities and have positive feelings towards them. This result differed from that of Lee and Kiemle's ([<reflink idref="bib14" id="ref34">14</reflink>]) study, which revealed the need for psychological distancing because nurses may have negative feelings towards people with intellectual disabilities. Support staff's negative emotional reactions towards people with intellectual disabilities were positively correlated with challenging behaviour (Reyes‐Martín et al., [<reflink idref="bib22" id="ref35">22</reflink>]). In this survey, nurses regarded service‐users' violent behaviour as wanting to convey something when they did not know how to do so. This study's participants understood that not only was it difficult for nurses themselves to reflect service‐users' intentions in their care, but service‐users themselves also had difficulties because they did not have the means to communicate. Therefore, this study's participants were not afraid of service‐users' violent behaviour. For nurses to see service‐users in this way, it was assumed that they needed to understand the service‐users' personalities. That is, we believe that the service‐user's negative feelings expressed through problematic behaviour were alleviated when nurses understood service‐users' feelings and hopes behind the behaviour, and not just the service‐users' superficial behaviour.</p> <p>We believe that nurses' positive perception of service‐users was influenced by day‐service centres' characteristics. Nurses enjoyed their time with the service‐users and were pleased with changes observed in them. Desroches et al. ([<reflink idref="bib6" id="ref36">6</reflink>]) reported on the number of adults with intellectual disabilities cared for during their nursing careers and professional contact frequency; they pointed out that this contact increases positive attitudes and feelings towards caring for people with intellectual disabilities—a finding supported by this study's results. Furthermore, this study's participants showed interest in the service‐users' latent abilities looking at them positively and encouraging them to demonstrate their inherent abilities. This may be influenced by the nurses' experience of working with service‐users and enjoying it.</p> <p>Based on this study's findings, it is suggested nurses in day‐service centres should encourage social participation by supporting service‐users in their daily lives and daytime activities. As demonstrated by the nurses studied, these activities require nurses to participate in support activities besides providing medical and nursing care. Furthermore, it is important to focus on care's positive aspects, such as what service‐users are doing. We believe that through these practices, nurses will gain an experiential understanding of the meaning of social participation for service‐users, leading to positive feelings towards service‐users.</p> <p>Despite this study's significance, there are some limitations. Our participants consisted exclusively of nurses working in a few communities within Japan; nurses working in day‐service centres in different regions may have different experiences from those identified here. Additionally, as the data were primarily collected through interviews, the only information that was verbalised by nurses could be analysed. Further research must endeavour to adopt other participant recruitment and data collection methods to accumulate more findings.</p> <hd id="AN0175229972-19">CONCLUSION</hd> <p>In this study, nurses working in day‐service centres for people with intellectual and physical disabilities provided support for social participation while maintaining the service‐users' mental and physical health. Consequently, nurses encouraged service‐users to enjoy nursing and medical care aspects, and they devised methods to adjust the environment and interact with service‐users to make day‐service centres more comfortable for service‐users. Furthermore, nurses participating in daytime activities at day‐service centres show interest in service‐users' activities and view them positively. Nurses who participated in this study demonstrated that they could understand the meaning of service‐users' social participation through experience and develop positive feelings towards service‐users by participating in daytime activities with lifestyle support staff.</p> <hd id="AN0175229972-20">AUTHOR CONTRIBUTIONS</hd> <p>Research idea and design by Kyoko Asakura, Shoko Sugiyama, Nozomu Takada and Yoshimi Ito; data collection by Yoshimi Ito; data analysis by Kyoko Asakura, Shoko Sugiyama, Nozomu Takada and Yoshimi Ito; writing—original draft preparation by Yoshimi Ito; writing—review and editing by Kyoko Asakura, Shoko Sugiyama and Nozomu Takada. All authors have read and agreed to the published version of the manuscript.</p> <hd id="AN0175229972-21">ACKNOWLEDGEMENTS</hd> <p>We are grateful to all the nurses, facility staff and users for their assistance with this study. This work was supported by Grant‐in‐Aid for Scientific Research (JPSS KAKENHI Grant Number JP21K21117; research representative: Yoshimi Ito).</p> <hd id="AN0175229972-22">CONFLICT OF INTEREST STATEMENT</hd> <p>The authors declare no conflict of interest.</p> <hd id="AN0175229972-23">DATA AVAILABILITY STATEMENT</hd> <p>Data are not available due to ethical and privacy considerations.</p> <ref id="AN0175229972-24"> <title> REFERENCES </title> <blist> <bibl id="bib1" idref="ref18" type="bt">1</bibl> <bibtext> Appelgren, M., Persson, K., Bahtsevani, C., & Borglin, G. (2022). Swedish registered nurses' perceptions of caring for patients with intellectual and developmental disability: A qualitative descriptive study. 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Items – Name: Title
  Label: Title
  Group: Ti
  Data: Experiences of Nurses Working at Day-Service Centres for People with Intellectual Disabilities/Intellectual and Physical Disabilities and Their Interactions with Service-Users
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  Label: Language
  Group: Lang
  Data: English
– Name: Author
  Label: Authors
  Group: Au
  Data: <searchLink fieldCode="AR" term="%22Yoshimi+Ito%22">Yoshimi Ito</searchLink><br /><searchLink fieldCode="AR" term="%22Kyoko+Asakura%22">Kyoko Asakura</searchLink><br /><searchLink fieldCode="AR" term="%22Shoko+Sugiyama%22">Shoko Sugiyama</searchLink><br /><searchLink fieldCode="AR" term="%22Nozomu+Takada%22">Nozomu Takada</searchLink>
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  Label: Source
  Group: Src
  Data: <searchLink fieldCode="SO" term="%22British+Journal+of+Learning+Disabilities%22"><i>British Journal of Learning Disabilities</i></searchLink>. 2024 52(1):66-75.
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  Label: Availability
  Group: Avail
  Data: Wiley. Available from: John Wiley & Sons, Inc. 111 River Street, Hoboken, NJ 07030. Tel: 800-835-6770; e-mail: cs-journals@wiley.com; Web site: https://www.wiley.com/en-us
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  Data: Y
– Name: Pages
  Label: Page Count
  Group: Src
  Data: 10
– Name: DatePubCY
  Label: Publication Date
  Group: Date
  Data: 2024
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  Data: Journal Articles<br />Reports - Research
– Name: Subject
  Label: Descriptors
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  Data: <searchLink fieldCode="DE" term="%22Foreign+Countries%22">Foreign Countries</searchLink><br /><searchLink fieldCode="DE" term="%22Nurses%22">Nurses</searchLink><br /><searchLink fieldCode="DE" term="%22Intellectual+Disability%22">Intellectual Disability</searchLink><br /><searchLink fieldCode="DE" term="%22Physical+Disabilities%22">Physical Disabilities</searchLink><br /><searchLink fieldCode="DE" term="%22Interaction%22">Interaction</searchLink><br /><searchLink fieldCode="DE" term="%22Day+Programs%22">Day Programs</searchLink><br /><searchLink fieldCode="DE" term="%22Social+Services%22">Social Services</searchLink><br /><searchLink fieldCode="DE" term="%22Interpersonal+Relationship%22">Interpersonal Relationship</searchLink><br /><searchLink fieldCode="DE" term="%22Caring%22">Caring</searchLink><br /><searchLink fieldCode="DE" term="%22Social+Support+Groups%22">Social Support Groups</searchLink><br /><searchLink fieldCode="DE" term="%22Social+Life%22">Social Life</searchLink><br /><searchLink fieldCode="DE" term="%22Mental+Health%22">Mental Health</searchLink><br /><searchLink fieldCode="DE" term="%22Physical+Health%22">Physical Health</searchLink><br /><searchLink fieldCode="DE" term="%22Psychological+Patterns%22">Psychological Patterns</searchLink><br /><searchLink fieldCode="DE" term="%22Adjustment+%28to+Environment%29%22">Adjustment (to Environment)</searchLink><br /><searchLink fieldCode="DE" term="%22Participation%22">Participation</searchLink><br /><searchLink fieldCode="DE" term="%22Activities%22">Activities</searchLink><br /><searchLink fieldCode="DE" term="%22Attitudes%22">Attitudes</searchLink>
– Name: Subject
  Label: Geographic Terms
  Group: Su
  Data: <searchLink fieldCode="DE" term="%22Japan%22">Japan</searchLink>
– Name: DOI
  Label: DOI
  Group: ID
  Data: 10.1111/bld.12546
– Name: ISSN
  Label: ISSN
  Group: ISSN
  Data: 1354-4187<br />1468-3156
– Name: Abstract
  Label: Abstract
  Group: Ab
  Data: Background: People with intellectual/intellectual and physical disabilities frequently use day-service centres, an array of services that involve the provision of care and social activities during the daytime and offer homebound people with disabilities opportunities to live in their communities. While nurses working at day-service centres for people with disabilities are expected to promote service-users' health, little research has focused on this area. Nurses' relationships with service-users of day-service centres have not been sufficiently investigated regarding how their interactions determine service-users' specific activities and daily lives within such facilities. This study sought to address this research gap. Methods: We conducted a qualitative descriptive study with six nurses working at day-service centres located in Tohoku region, Japan. Six participants were interviewed 16 times. The psychological-phenomenological method developed by Amedeo Giorgi was used as the model for data analysis. Findings: The analysis generated five themes. First, nurses show interest in service-users by 'continuing to show interest' and by 'trying to understand the service-users from the perspective of what they can do'. Additionally, the nurses ensure that service-users enjoy their time in the facility by 'supporting enjoyment through nursing and medical care', 'stabilising feelings' and 'creating an environment conducive to everyone's comfort'. Conclusions: Nurses working at day-service centres for people with intellectual/intellectual and physical disabilities provide support for social participation while maintaining the service-users' mental and physical health. Thus, these nurses support enjoyment among service-users from the nursing and medical care aspect; they also devise ways for service-users to interact and adjust to the environment to improve service-users' comfort at day-service centres. Furthermore, participation in daytime activities at day-service centres indicated that nurses are interested in service-users' activities, and they perceive service-users as positive individuals.
– Name: AbstractInfo
  Label: Abstractor
  Group: Ab
  Data: As Provided
– Name: DateEntry
  Label: Entry Date
  Group: Date
  Data: 2024
– Name: AN
  Label: Accession Number
  Group: ID
  Data: EJ1410326
PLink https://search.ebscohost.com/login.aspx?direct=true&site=eds-live&db=eric&AN=EJ1410326
RecordInfo BibRecord:
  BibEntity:
    Identifiers:
      – Type: doi
        Value: 10.1111/bld.12546
    Languages:
      – Text: English
    PhysicalDescription:
      Pagination:
        PageCount: 10
        StartPage: 66
    Subjects:
      – SubjectFull: Foreign Countries
        Type: general
      – SubjectFull: Nurses
        Type: general
      – SubjectFull: Intellectual Disability
        Type: general
      – SubjectFull: Physical Disabilities
        Type: general
      – SubjectFull: Interaction
        Type: general
      – SubjectFull: Day Programs
        Type: general
      – SubjectFull: Social Services
        Type: general
      – SubjectFull: Interpersonal Relationship
        Type: general
      – SubjectFull: Caring
        Type: general
      – SubjectFull: Social Support Groups
        Type: general
      – SubjectFull: Social Life
        Type: general
      – SubjectFull: Mental Health
        Type: general
      – SubjectFull: Physical Health
        Type: general
      – SubjectFull: Psychological Patterns
        Type: general
      – SubjectFull: Adjustment (to Environment)
        Type: general
      – SubjectFull: Participation
        Type: general
      – SubjectFull: Activities
        Type: general
      – SubjectFull: Attitudes
        Type: general
      – SubjectFull: Japan
        Type: general
    Titles:
      – TitleFull: Experiences of Nurses Working at Day-Service Centres for People with Intellectual Disabilities/Intellectual and Physical Disabilities and Their Interactions with Service-Users
        Type: main
  BibRelationships:
    HasContributorRelationships:
      – PersonEntity:
          Name:
            NameFull: Yoshimi Ito
      – PersonEntity:
          Name:
            NameFull: Kyoko Asakura
      – PersonEntity:
          Name:
            NameFull: Shoko Sugiyama
      – PersonEntity:
          Name:
            NameFull: Nozomu Takada
    IsPartOfRelationships:
      – BibEntity:
          Dates:
            – D: 01
              M: 01
              Type: published
              Y: 2024
          Identifiers:
            – Type: issn-print
              Value: 1354-4187
            – Type: issn-electronic
              Value: 1468-3156
          Numbering:
            – Type: volume
              Value: 52
            – Type: issue
              Value: 1
          Titles:
            – TitleFull: British Journal of Learning Disabilities
              Type: main
ResultId 1