Nurse-Mother Collaborations in Disability Day-Service Centres for Individuals with Intellectual Disabilities
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| Title: | Nurse-Mother Collaborations in Disability Day-Service Centres for Individuals with Intellectual Disabilities |
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| Language: | English |
| Authors: | Yoshimi Ito, Kyoko Asakura, Shoko Sugiyama, Nozomu Takada |
| Source: | British Journal of Learning Disabilities. 2025 53(3):351-359. |
| 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: | 9 |
| Publication Date: | 2025 |
| Document Type: | Journal Articles Reports - Research |
| Descriptors: | Nurses, Mothers, Cooperation, Child Care Centers, Social Services, Intellectual Disability, Child Caregivers, Interpersonal Relationship, Child Rearing, Foreign Countries |
| Geographic Terms: | Japan |
| DOI: | 10.1111/bld.12641 |
| ISSN: | 1354-4187 1468-3156 |
| Abstract: | Background: Day-service centres offer valuable support for individuals with intellectual disabilities, often referred to as service-users. Due to potential communication challenges, nurses must gather information from caregivers, particularly mothers. This study explores the collaboration between nurses at day-service centres and the mothers of service-users to enhance care quality. Methods: This qualitative study collected data from six nurses working at day-service centres in Japan and conducted an analysis using a descriptive narrative approach. Each nurse participated in two or three semi-structured interviews, where nurses were encouraged to speak freely, resulting in 16 interviews. Findings: Three key themes emerged from the collaboration between nurses and service-users' mothers: (1) 'building good relationships with parents to ensure a smooth exchange of information about service-users'; (2) 'providing the same care at the day-service centre as the service-user would receive at home'; and (3) 'identifying areas that nurses cannot compromise on while respecting how mothers care for their children'. Conclusions: These findings provide insights into effective nursing care for individuals with intellectual disabilities in day-service centres, emphasising the importance of productive engagement with their mothers. |
| Abstractor: | As Provided |
| Entry Date: | 2025 |
| Accession Number: | EJ1482057 |
| Database: | ERIC |
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| FullText | Links: – Type: pdflink Url: https://content.ebscohost.com/cds/retrieve?content=AQICAHj0k_4E0hTGH8RJwT4gCJyBsGNe_WN95AvKlDbXJGqwxwEToZwYtg5go4rUr2E6haWgAAAA4jCB3wYJKoZIhvcNAQcGoIHRMIHOAgEAMIHIBgkqhkiG9w0BBwEwHgYJYIZIAWUDBAEuMBEEDDgSNR5WU1UcnZ4QFAIBEICBmtSyspMlcpmAIObB5coWPKl2hB3pPBbtMRqv_HIYkv1rarSro4N_-gOEvoXIkm1lX_ILnXQXddgYL-aouioWri30Rll-f9Iy2Uq5JRwsaVM9ZYaMhfd6nHiST_AA_tmrJY_OYrRr1BCldfSQDpem6oxxbmtTCqS8kxRJKPiC5NOKSgsBtTWZGgliTCLxDmwn8da_B1ME688ADnw= Text: Availability: 1 Value: <anid>AN0187616971;f0401sep.25;2025Sep01.04:50;v2.2.500</anid> <title id="AN0187616971-1">Nurse–Mother Collaborations in Disability Day‐Service Centres for Individuals With Intellectual Disabilities </title> <p>Background: Day‐service centres offer valuable support for individuals with intellectual disabilities, often referred to as service‐users. Due to potential communication challenges, nurses must gather information from caregivers, particularly mothers. This study explores the collaboration between nurses at day‐service centres and the mothers of service‐users to enhance care quality. Methods: This qualitative study collected data from six nurses working at day‐service centres in Japan and conducted an analysis using a descriptive narrative approach. Each nurse participated in two or three semi‐structured interviews, where nurses were encouraged to speak freely, resulting in 16 interviews. Findings: Three key themes emerged from the collaboration between nurses and service‐users' mothers: (<reflink idref="bib1" id="ref1">1</reflink>) 'building good relationships with parents to ensure a smooth exchange of information about service‐users'; (<reflink idref="bib2" id="ref2">2</reflink>) 'providing the same care at the day‐service centre as the service‐user would receive at home'; and (<reflink idref="bib3" id="ref3">3</reflink>) 'identifying areas that nurses cannot compromise on while respecting how mothers care for their children'. Conclusions: These findings provide insights into effective nursing care for individuals with intellectual disabilities in day‐service centres, emphasising the importance of productive engagement with their mothers.</p> <p>Summary: This study reports the findings of interviews with nurses working at day‐service centres in japan for individuals with intellectual disabilities.Six nurses shared their experiences working with the mothers of adult service‐users.The interviews revealed three themes that show how nurses approach these interactions: building good relationships with parents, ensuring the care at the centre matches the care provided at home and identifying essential aspects of care while respecting each mother's unique caregiving style.Our findings clarify the factors that nurses consider when working with mothers, which can improve the care provided to adults with intellectual disabilities.</p> <p>Keywords: collaborations with mothers; day‐service centres; intellectual disability; mothers; nurses</p> <hd id="AN0187616971-2">Introduction</hd> <p>Day‐service centres are vital for supporting individuals with intellectual disabilities (often referred to as 'service‐users'), enabling them to live within their communities while receiving essential services. These centres allow homebound individuals to engage in diverse activities throughout the day while ensuring they receive necessary care. In Japan, nurses at day‐service centres work alongside support staff to provide comfort to service‐users, focusing on both nursing and medical care to help maintain their emotional stability (Ito et al. [<reflink idref="bib15" id="ref4">15</reflink>]). Since some individuals with intellectual disabilities may struggle to express themselves verbally, it is crucial for nurses to gather information from their regular caregivers to understand their wishes, intentions and symptoms. In countries with low gender gap indices, such as Japan, nurses often perceive mothers as the primary caregivers despite societal emphasis on gender equality (e.g., Ueto [<reflink idref="bib35" id="ref5">35</reflink>]). Therefore, effective care for individuals with intellectual disabilities requires nurses to obtain essential information from primary caregivers, often the mothers.</p> <p>Individuals with intellectual disabilities frequently live with their parents and continue to rely on parental support into adulthood (Zambrino and Hedderich [<reflink idref="bib36" id="ref6">36</reflink>]). The experiences of individuals with intellectual disabilities are closely intertwined with the lives of their families (Doody [<reflink idref="bib5" id="ref7">5</reflink>]). Factors such as maternal age, caregiver status and competence are significantly correlated with the care provided to such individuals (Sanderson et al. [<reflink idref="bib29" id="ref8">29</reflink>]). A study in Poland showed that mothers are often expected to provide dedicated, self‐sacrificial care for their adult children with intellectual disabilities, highlighting the societal expectation of a mother's duty to protect her children in public spaces (Aksamit and Del Mar Badia Martin [<reflink idref="bib1" id="ref9">1</reflink>]). Ee et al. ([<reflink idref="bib7" id="ref10">7</reflink>]) have noted that family caregivers—particularly mothers—of adults with intellectual disabilities frequently express concerns about their children's future. Even when facing their own health issues (Grey, Totsika, and Hastings [<reflink idref="bib12" id="ref11">12</reflink>]), these mothers remain dedicated to their role as caregivers.</p> <p>Mothers of children with intellectual disabilities seek personalised care and support, including information provision and collaboration with nurses. They emphasise the importance of establishing personal relationships between nurses and families, built on mutual familiarity (Doody, Slevin, and Taggart [<reflink idref="bib6" id="ref12">6</reflink>]). However, approximately half the nurses providing primary care report challenges in interacting with individuals with intellectual disabilities (Storms et al. [<reflink idref="bib32" id="ref13">32</reflink>]). Time constraints and staff shortages make it difficult for hospital‐based nurses to understand the desires of individuals with intellectual disabilities, develop therapeutic relationships and provide adequate care (Howie et al. [<reflink idref="bib14" id="ref14">14</reflink>]; Lewis, Gaffney, and Wilson [<reflink idref="bib18" id="ref15">18</reflink>]; Nthekang and du Plessis [<reflink idref="bib25" id="ref16">25</reflink>]). Importantly, effective communication is crucial for the provision of safe and optimal care (Appelgren et al. [<reflink idref="bib2" id="ref17">2</reflink>]). Consequently, nurses often rely on the family members of service‐users to understand their preferences and needs (Ndengeyingoma and Ruel [<reflink idref="bib24" id="ref18">24</reflink>]). Mothers who care for adult children with intellectual disabilities are deeply committed to providing both physical and emotional support. Nurses recognise the importance of obtaining information and collaborating with these mothers to ensure appropriate care for their adult children.</p> <p>Japan is striving to create a community‐based society where individuals with disabilities have the freedom to choose where and with whom they live (Cabinet Office [<reflink idref="bib4" id="ref19">4</reflink>]). Children with intellectual disabilities often prefer to live with their mothers well into adulthood, viewing them as central figures in their lives. The paternalistic dynamic between mothers and their children with disabilities persists into adulthood, often justified by notions of 'family love' and 'devoted affection' (Nakane [<reflink idref="bib23" id="ref20">23</reflink>]). In Japan, public services have limitations, and people with disabilities frequently face social oppression (Ueto [<reflink idref="bib34" id="ref21">34</reflink>]). Consequently, mothers are typically expected to take primary responsibility for the care of children with intellectual disabilities (Ueto [<reflink idref="bib35" id="ref22">35</reflink>]). These mothers are deeply involved in their children's care and play a critical role in making decisions that ensure their children can lead fulfiling daily lives. Therefore, when providing services to individuals with intellectual disabilities, support providers, including nurses at day‐service centres, must prioritise the wishes of parents (Okada [<reflink idref="bib27" id="ref23">27</reflink>]), particularly regarding their children's physical and mental health. Nurses at day‐service centres are, therefore, expected to extend their care to include mothers. Challenges in the relationships between nurses and mothers in day‐service care centres have been noted (Shimono and Ichihara [<reflink idref="bib31" id="ref24">31</reflink>]); however, research on collaborative efforts between nurses and mothers remains limited. Additionally, Japan's nursing education curriculum lacks specialised training in this area (Kim [<reflink idref="bib17" id="ref25">17</reflink>]). Consequently, nurses often begin their roles in day‐service centres without the necessary knowledge or experience, relying on trial and error to navigate their responsibilities.</p> <p>This study aimed to elucidate the collaboration between nurses at day‐service centres and the mothers of service‐users to enhance care. Furthermore, it seeks to explore how nurses establish relationships with mothers, share crucial care information and identify key considerations in their interactions.</p> <hd id="AN0187616971-3">Methods</hd> <p>This study employed a descriptive phenomenological approach based on Husserl's philosophy, which emphasises capturing the lived experiences of participants and elucidating their essential meanings (Gray and Grove [<reflink idref="bib11" id="ref26">11</reflink>]). This approach of returning to the phenomenon itself aligns with our goal to describe the everyday, routine practices of nurses at day‐service centres. The study adhered to the Standards for Reporting Qualitative Research (O'Brien et al. [<reflink idref="bib26" id="ref27">26</reflink>]).</p> <hd id="AN0187616971-4">Research Design</hd> <p>We conducted a qualitative research study. We analysed the data using the descriptive phenomenological method developed by Giorgi (2009/[<reflink idref="bib10" id="ref28">10</reflink>]). The study was approved by the Ethics Committee Tohoku University Graduate School of Medicine (approval number 2019‐1‐507), and written informed consent was obtained from all participants before data collection.</p> <hd id="AN0187616971-5">Participants</hd> <p>Participants were purposively selected from nurses working at day‐service centres for individuals in japan with intellectual disabilities. The inclusion criterion stipulated that participants have at least 1 year of experience as a nurse or assistant nurse at a day‐service centre. In Japan, nurses are licensed by the Ministry of Health, Labour and Welfare (MHLW), while assistant nurses are licensed by the prefectural governor. Although both perform similar duties, assistant nurses must work under the supervision of a nurse or a doctor. The 1‐year experience criterion ensured that participants had sufficient time to adapt to their roles and articulate their communication experiences with mothers in various situations.</p> <p>Day‐service centres, as defined by the Act for the Comprehensive Support of Persons with Disabilities, provide home‐based services to assist service‐users with daily living activities, such as toileting and eating; they also offer opportunities for creative and productive activities (Ministry of Health, Labour and Welfare [<reflink idref="bib21" id="ref29">21</reflink>]). Japan has 9056 such centres (Ministry of Health, Labour and Welfare [<reflink idref="bib20" id="ref30">20</reflink>]). In addition to nurses, these centres are staffed by managers, service managers and lifestyle support staff who also provide care.</p> <p>Participants were recruited through letters and phone calls, resulting in six nurses (four nurses and two assistant nurses) agreeing to participate. Each nurse worked at a different day‐service centre, was aged 40–60 years and had 1–12 years of experience at their current institution. The day‐service nurses monitored service‐users' health and provided medical care including nasogastric tube feeding, suctioning phlegm, managing breathing and treating injuries from falls. Additionally, they collaborated with the lifestyle support staff to assist with service‐users' eating, toileting, activity engagement and transportation. The nurses frequently interacted with service‐users' mothers during pick‐ups and drop‐offs, exchanging information. When nurses were responsible for transportation, they communicated with service‐users' mothers to exchange information. Service‐users brought a communication notebook to their day‐service centre visits, allowing the family and staff to share updates. In the notebook, mothers recorded their children's condition at home and any messages to convey to the nurses. The nurses reviewed these notes and incorporated the information into their care plans. Before the service‐users left, the nurses documented their progress at the day‐service centre and returned the notebook to the family. Communication with mothers of service‐users from group homes was less frequent but occurred when necessary, such as when a medical visit was required or when care deviated from the norm.</p> <p>Most service‐users had intellectual disabilities, with some also having physical disabilities or emotional and behavioural disorders. The majority were in their 30s–50 s and lived with their families, although some came from group homes. The number of service‐users per day ranged from 15 to 40. They required constant supervision, assistance with eating and toileting and support for various activities. Some service‐users also required medical care, including nasogastric tube feeding, gastric tube insertion, sputum suctioning and stoma management.</p> <hd id="AN0187616971-6">Data Collection</hd> <p>Data were collected through semi‐structured interviews conducted between January and December 2020. The interviews were conducted by the first author, who has experience working as a public health nurse in a government agency and working with nurses at day‐service centres to support people with intellectual disabilities. Before each interview, participants received both written and verbal explanations of the study and its ethical considerations, and they provided informed consent to participate.</p> <p>The interviews took place in private settings, such as a private room at a day‐service centre. Each participant was interviewed two or three times, with each session lasting approximately 30–70 min. The first interview was semi‐structured, following an interview guide, while the second and third sessions gathered any additional information not covered in the initial interview. The interviews were spaced about 1 month apart to allow time for verbatim transcription and to clarify any ambiguities before the next sessions. The number of interviews varied based on participants' schedules and need for further information.</p> <p>During the interviews, participants were encouraged to speak freely, with their responses being recorded on an integrated chip recorder with their consent. The interview guide served as a reference, and participants were first asked to provide basic information, such as age, years of nursing experience, years of experience at day‐service centres and the number and types of disabilities of the service‐users at their centres. Further probing questions were then asked based on their responses:</p> <p></p> <ulist> <item> 1. Could you describe in detail your experience interacting with the mothers of service‐users?</item> <p></p> <item> 2. What actions or considerations do you find important when interacting with the mothers of service‐users?</item> <p></p> <item> 3. What difficulties do you encounter when interacting with the mothers of service‐users?</item> </ulist> <hd id="AN0187616971-7">Data Analysis</hd> <p>The analysis was based on Giorgi's (2009/[<reflink idref="bib10" id="ref31">10</reflink>]) descriptive phenomenological method. This method was chosen for its emphasis on systematic procedures for conducting rigorous scientific research on psychological phenomena, established credibility as an analytical approach and ability to faithfully capture participants' lived experiences.</p> <p>The analysis was performed individually for each participant, followed by a cross‐participant examination to identify common themes. Sixteen interviews were conducted with the six participants. First, we transcribed the recorded interview data. The entire data set was then reviewed multiple times to gain a comprehensive understanding of the situation and familiarise ourselves with the data. Subsequently, we carefully reread the transcripts, dividing them into semantic units at each significant shift in meaning. We extracted and described these semantic units in line with the study's purpose, ensuring that participants' experiences were clearly conveyed. We compared the extracted semantic units across all participants and derived common themes by analysing their interrelationships.</p> <p>The analysis process was conducted concurrently with data collection. Throughout this period, interpretations were discussed with university lecturers and graduate students with extensive experience in qualitative research. To ensure the validity of our interpretations, we reviewed them multiple times until a consensus was reached.</p> <hd id="AN0187616971-8">Results</hd> <p>The analysis of the data revealed three key themes: (<reflink idref="bib1" id="ref32">1</reflink>) 'building good relationships with parents to ensure a smooth exchange of information about service‐users'; (<reflink idref="bib2" id="ref33">2</reflink>) 'providing the same care at the day‐service centre as the service‐user would receive at home'; and (<reflink idref="bib3" id="ref34">3</reflink>) 'identifying areas that nurses cannot compromise on while respecting how mothers care for their children'. Participants' narratives primarily referenced mothers, with few mentions of other family members, such as fathers. This suggests that participants primarily discussed interactions with service‐users' mothers. All participants' names are pseudonyms.</p> <hd id="AN0187616971-9">Building Good Relationships With Parents to Ensure a Smooth Exchange of Information about Ser...</hd> <p>The nurses interacted with service‐users' families, considering the need to build good relationships with service‐users and their families. To achieve seamless communication, nurses focused on 'understanding families' personalities and tailoring interactions' while maintaining trust through 'honest communication of unfavourable information'.</p> <p>As most service‐users were unable to express themselves verbally, information from their families was essential for understanding and supporting them. Nurses highly valued this information because they believed that the way service‐users spend their time at home significantly influences how they spend their time at the day‐service centre. Nurses also felt that such information helped ensure that parents were open to accepting the nurses' intentions and maintaining good relationships. Hence, nurses attempted to build strong relationships with the families and obtain the information necessary to provide quality care by allotting time to talk to the parents, such as when picking up and dropping off the service‐users.</p> <hd id="AN0187616971-10">Understanding Families' Personalities and Tailoring Interactions</hd> <p>Nurses believed that maintaining positive relationships with service‐users' families was essential for effective information exchange. They understood that without earning the families' trust, obtaining the necessary information for providing care is difficult. Yuka emphasised the importance of understanding the personalities, preferences and dislikes of family members and communicating accordingly. She made a deliberate effort to understand each family's dynamics and interacted with them in a way that suited their personalities.</p> <p> <emph>Yuka</emph>: As service‐users cannot speak, it is important to obtain information about them from their families and people around them. [omission] If you don't get along with the families, they won't talk to you. There are different types of family carers, and if they don't think I'm good, they won't interact with me at all.</p> <hd id="AN0187616971-11">Honest Communication of Unfavourable Information</hd> <p>At times, nurses needed to provide unfavourable information to service‐users' parents. Sara believed that consistent communication and trust with parents would help them understand the circumstances. It was crucial for nurses to convey information truthfully to build trust, as this made parents more receptive to receiving unfavourable information.</p> <p> <emph>Sara</emph>: If [service‐users] get hurt or injured, I'm honest, and I apologise to the parents, saying, 'I'm sorry, this is what happened'. If there's good communication and trust with the parents, they usually say, 'Oh, it's OK, don't worry about it'.</p> <hd id="AN0187616971-12">Providing the Same Care at the Day‐Service Centre as the Service‐User Would Receive at Home</hd> <p>Nurses replicated the care that service‐users received from their mothers at home. They recognised that through years of caring, the mothers had a deep understanding of their children's needs. Consequently, the nurses' priorities were to 'respect the history between service‐users and their families' and 'provide care while incorporating the methods employed by the mother'.</p> <hd id="AN0187616971-13">Respecting the History Between Service‐Users and Their Families</hd> <p>Nurses understood the importance of the longstanding relationships between service‐users and their mothers. Respecting this history was fundamental to delivering appropriate care. Sara believed that these relationships were significant, noting that mothers took pride in the care they had provided over the years. Without considering each mother's feelings and history, nurses felt they could not provide the necessary assistance.</p> <p> <emph>Sara</emph>: The family's thoughts are important. Some mothers feel like 'I have been taking care of my children by myself all my life, and I don't need a nurse to tell me'. [omission] From my perspective, I'm just informing them because I'm concerned about the conditions [of the service‐user], but they take it the wrong way, like 'it's none of your business'.</p> <hd id="AN0187616971-14">Providing Care While Incorporating the Methods Employed by the Mother</hd> <p>Nurses believed that adopting the caregiving methods used by service‐users' mothers at home would benefit both the mothers and the service‐users at the day‐service centres. Hana understood that nurses at day‐service centres were expected to provide care in a manner similar to that given in service‐users' homes. She observed that the interaction between nurses and mothers differed between medical institutions and day‐service centres, mainly because mothers are the primary caregivers at home and have a deep understanding of what is 'just right' for their children. When a situation did not pose a significant risk to the service‐user's life, Hana would confirm the suitable home care method with the mother and then replicate that care at the day‐service centre. She emphasised the importance of considering the wishes of the mothers, who are the primary caregivers at home, and understand their children's needs best. Nurses, she believed, could not fulfil their roles effectively at day‐service centres without aligning their care with the mothers' expectations.</p> <p> <emph>Hana</emph>: Nurses do not have as much authority [at day‐service centres as in hospitals]. Nurses are medical assistants, so we do what the mothers say is right. The nurse's work can be [done] at a [day‐service centre] in the same way as the service‐users' mothers provide it at home; this is closely intertwined with the service‐users' lives [omission]... Unless the issue is related to the life of the service‐user, each mother has her method that best suits her, acquired from caring for the service‐user at home. Thus, if a nurse does not follow that method and uses a different method of care, the relationship with the mother may be negatively impacted.</p> <p>Sara and other staff helped service‐users eat safely with mothers' guidance. One service‐user with dysphagia presented a particular challenge, but Sara was committed to respecting each mother's wishes.</p> <p> <emph>Sara</emph>: [One service‐user] had difficulty ingesting and swallowing, and there were limitations on what the service‐user could eat. Therefore, the mother understood that it was difficult for the service‐user to eat here, and every morning, she would prepare a meal that suited her child, [and] the service‐user would eat it. She was a really dedicated mother, always kind and helpful, and she cared deeply for us. [omission] The mother ensured that the service‐user had food that was easy to eat, [and] the staff members also assisted with meals under the mother's guidance.</p> <hd id="AN0187616971-15">Identifying Areas That Nurses Cannot Compromise on While Respecting How Mothers Care for Thei...</hd> <p>Even when nurses believed that certain care was necessary for the service‐user, there were instances when they attempted to 'understand the mother's circumstances and choose when to remain silent'. While assessing the service‐user's condition, the nurses also evaluated the mother's feelings and caregiving abilities, sometimes opting not to share certain information with her. Conversely, when a trusting relationship allowed for open discussion, they promoted collaborative decision‐making by 'working with mothers to determine the best care for the service‐user'. In this way, the nurses balanced respect for the mother's established care practices with their own professional judgement.</p> <hd id="AN0187616971-16">Understanding the Mother's Circumstances and Choosing When to Remain Silent</hd> <p>Nurses sometimes decided that the best course of action for the service‐user was not aligned with the mother's wishes or was difficult given her capacity. In such situations, the nurses remained respectful of the mothers' desires while carefully considering how to address the issue.</p> <p>At the day‐service centre where Sara worked, a local dentist was regularly invited to conduct check‐ups for service‐users. When the dentist recommended further dental treatment for specific service‐users, Sara encouraged their families to do so. However, the final decision was left to the family. Although Sara found it difficult to intervene in family decisions, she did what she could within her role as a nurse at the day‐service centre. She provided written and verbal explanations to families, emphasising the importance of taking the service‐users to a dentist for necessary treatment.</p> <p> <emph>Sara</emph>: If the dentist tells me that the service‐user's tooth needs urgent attention, I will inform the family; however, it is ultimately up to them to make the appointment and visit the dentist.</p> <p>Nurses were sometimes reluctant to offer advice to the mothers, understanding that implementing health‐related recommendations might be challenging given the mothers' circumstances. Owing to the characteristics of service‐users, controlling their demands requires considerable effort. Although Yuka felt that mothers giving into service‐users' demands were not preferable, she chose not to advise against it. Rather than doing nothing to support the service‐users' health, Yuka intervened directly with them whenever possible, collaborating with staff to address these needs within the day‐service centre.</p> <p> <emph>Yuka</emph>: Although we have our opinions as nurses, we can't say much because we know how hard it is for the families. Therefore, all the staff are working together to improve the health of the service‐users, at least when they are at the [day‐service centre].</p> <p>When nurses sensed that the mothers might not have the capacity to fully care for their children, they sometimes adjusted to ensure that the necessary care was provided at the day‐service centre. Ann, for example, assessed the mothers' ability to care for their children based on the service‐users' conditions. In one case, a service‐user came to the centre with an untreated burn on his foot. Ann believed that if the family was capable of treating the burn, they would have done so. Therefore, instead of educating the mother on burn care, Ann ensured the service‐user's health by collaborating with medical services.</p> <p> <emph>Ann</emph>: The service‐user said, 'I got burned' [upon arrival at the day‐service centre]. I asked, 'Where is it'? and got the service‐user to take off his socks. All the skin on the back of his foot had come off and was bright red, so I had him taken to the hospital immediately. [omission] If the family had been able to take care of him properly, the burn wouldn't have turned out this way. I couldn't leave his treatment to his mother, so I consulted with the hospital.</p> <hd id="AN0187616971-17">Working With Mothers to Determine the Best Care for the Service‐User</hd> <p>Based on the mutual understanding established with the mothers, the nurse engaged in discussions on how to enhance the care provided to the service‐users, fostering a collaborative approach. Hana recalled that when she first started working at the day‐service centre, some mothers occasionally questioned whether they were providing the best care for their children. Hana thought, 'I know better than them' because she was proud of her nurse experience, knowledge and skills. However, the mothers had been caring for their children for many years and were proud to know and practice what was best for them. This led to both Hana and the mothers feeling they could provide superior care. Nevertheless, Hana realised that appropriate care looked different for each service‐user and that the mothers knew their children better. She realised that the mothers were, 'in a sense, like teachers'. This realisation prompted Hana to shift her approach, choosing to learn from the mothers and replicate the care they provided at home. Hana also shifted her view on the importance of talking with families to provide better care for service‐users. Thus, she developed a more collaborative relationship with the mothers, working together to determine the best care strategies for the service‐users rather than simply agreeing on a single method.</p> <p> <emph>Hana</emph>: At first, I found it difficult to deal with the mothers. [omission] But, unlike in the hospital, the mothers are more like teachers than I am because they look after their children 24 hours a day, most of the time, when their children are not here. I think there are many cases where this is how it is done in medical care, but this is the right way for this person.</p> <p> <emph>Hana</emph>: We try to compromise and think together about what's best these days, so I don't unilaterally suggest 'it's better this way', and families no longer say, 'it absolutely has to be this way'. Instead, we collaborate, asking, 'What can we do to achieve this?'</p> <hd id="AN0187616971-18">Discussion</hd> <p>This study examined the collaboration between nurses at day‐service centres and the mothers of service‐users with intellectual disabilities. We found that nurses frequently communicate with family members by 'building good relationships with parents to ensure a smooth exchange of information about service‐users'. They also ensured the comfort of service‐users at the centre by 'providing the same care at the day‐service centre as the service‐user would receive at home'. Furthermore, they took care to maintain service‐users' health while being sensitive to the difficulties mothers faced in caring for their adult children by 'identifying areas that nurses cannot compromise on while respecting how mothers care for their children'.</p> <p>At day‐service centres, service‐users spend time without their family members present. Therefore, nurses typically care for service‐users independently but gather essential information from the mothers. Specialist nurses who work with individuals with intellectual disabilities highlight the importance of home visits and understanding the home environment to better support these individuals and their families (Doody, Slevin, and Taggart [<reflink idref="bib6" id="ref35">6</reflink>]). When nurses visit service‐users' homes, mothers and nurses can interact to provide care and address discomfort experienced by people with intellectual disabilities who have difficulty articulating their symptoms (Sato, Machida, and Hayama [<reflink idref="bib30" id="ref36">30</reflink>]). However, unlike home care nurses, nurses at day‐service centres cannot share the caring process with the mothers in real time. Consequently, they must rely on information provided by the mothers about appropriate home care methods, which they replicate at the day‐service centre.</p> <p>The participants recognised the importance of building relationships with the mothers and made concerted efforts to do so. Sanderson and Aquino ([<reflink idref="bib28" id="ref37">28</reflink>]) noted that finding available services and encouraging adult children with intellectual disabilities to participate in activities can be stressful and burdensome for parents. Thus, responding to mothers' requests may reinforce the mother–child relationship. Our participants listened to the mothers and attempted to alleviate their stress by respecting their caregiving preferences. Through these interactions, the nurses gained the mothers' trust while supporting the service‐users. In medical settings, when the responsibility for a child's care shifts from parents to professionals, establishing a trusting relationship is crucial (Stuart and Melling [<reflink idref="bib33" id="ref38">33</reflink>]). This study found similar results in day‐service centres, emphasising that earning mothers' trust is essential to provide appropriate care, irrespective of the setting.</p> <p>The nurses showed deep respect for the wishes of the service‐users' mothers, acknowledging and valuing their efforts and knowledge in providing the most comfortable care for their children. This respect likely stems from an awareness of the importance of consistent care. John ([<reflink idref="bib16" id="ref39">16</reflink>]) highlights the need for consistency between caregivers and families and the significance of maintaining the facility's routine at home. However, in this study, nurses focused on incorporating the home routine into the care provided at day‐service centres. They recognised the significance of the histories of both the service‐users and their mothers, leading them to adopt and respect the mothers' home care methods at the centres. Given the close bond between individuals with intellectual disabilities and their families (Doody [<reflink idref="bib5" id="ref40">5</reflink>]), the nurses understood that the mothers' wishes reflected the shared lives of both the mother and the service‐user. Consequently, they honoured these wishes, considering the experiences and the lives they represented.</p> <p>While respecting the mothers' wishes, the nurses also explored collaborative approaches to build relationships and enhance the care provided to the service‐users. Their approaches were situation‐dependent—they sometimes engaged in discussions with the mothers to find better solutions, while at other times, they assessed the mother's caregiving abilities and took on certain tasks themselves. Even in situations where the health of the service‐users and mothers' wishes may have conflicted, the nurses conducted thorough assessments of the service‐users' conditions and worked to resolve issues through discussions with the mothers. Additionally, the nurses collaborated with other staff to provide appropriate care for service‐users, which supports the findings from previous research (Heerings et al. [<reflink idref="bib13" id="ref41">13</reflink>]; Moore and McDougall [<reflink idref="bib22" id="ref42">22</reflink>]). Unlike previous studies highlighting the importance of educating families of individuals with intellectual disabilities (Bur, Missen, and Cooper [<reflink idref="bib3" id="ref43">3</reflink>]; Doody, Slevin, and Taggart [<reflink idref="bib6" id="ref44">6</reflink>]), this study did not focus on educational involvement. This difference might be attributed to the age of the service‐users; earlier research focused on children and adolescents, whereas this study involved adults. Nurses likely understood that, over time, mothers had developed effective caregiving methods and acquired the necessary knowledge as their children grew older. Additionally, parents can feel frustrated when their expertise is overlooked (Giambra, Stiffler, and Broome [<reflink idref="bib8" id="ref45">8</reflink>]). Additionally, joint decision‐making with families is crucial to provide optimal care to children with intellectual disabilities, with an emphasis on shared responsibility between medical professionals and families (Mestre et al. [<reflink idref="bib19" id="ref46">19</reflink>]). Similar to studies involving families of children with intellectual disabilities in medical settings, it was suggested that nurses should carefully listen to mothers' wishes and collaboratively discuss and establish a care policy for adults with intellectual disabilities in day‐service settings.</p> <p>Gilson et al. ([<reflink idref="bib9" id="ref47">9</reflink>]) underscored the importance of caregivers' psychological well‐being in service delivery, and Aksamit and Del Mar Badia Martin ([<reflink idref="bib1" id="ref48">1</reflink>]) observed that support tailored to mothers' needs enhances their self‐esteem, while support that does not can weaken psychological functioning. Nurses should understand mothers' wishes and provide support tailored to their needs, thereby reducing their stress and helping maintain their psychological well‐being. Thus, in addition to understanding and addressing the mothers' needs and feelings, the participating nurses fulfilled their professional roles by ensuring the health and well‐being of the service‐users. They carefully balanced two perspectives: respecting the mothers' wishes and safeguarding the health and active participation of the service‐users. The nurses also made a conscious effort to avoid projecting an overly professional demeanour, which could have inhibited mothers from sharing their perspectives. This approach was intended to prevent situations where families of individuals with intellectual disabilities perceive medical staff as 'experts' and feel unable to voice disagreements (Ee et al. [<reflink idref="bib7" id="ref49">7</reflink>]). Instead, the nurses attempted to foster collaborative relationships, encouraging open communication and making it easier for the mothers to express their intentions.</p> <p>Our findings indicate that nurses in day‐service centres must first establish good relationships with service‐users' mothers by understanding their circumstances and preferences. Nurses must consider both the mothers' wishes and the health condition of the service‐users. However, in situations that could significantly impact service‐users' health, nurses should be prepared to discuss these concerns with the mothers and collaborate to provide the best possible care. There is a need for a system that equips nurses in day‐service centres with the skills necessary for collaborating effectively with the mothers of individuals with intellectual disabilities. In countries like Japan, where nursing education on caring for individuals with intellectual disabilities is limited, nurses may lack the relevant knowledge and skills. Conversely, mothers often possess valuable insights and expertise about their children, leading to a potential imbalance in knowledge and skills between nurses and mothers. Therefore, nurses working in this field must respect mothers' caregiving styles and adopt an attitude of learning from them. Understanding the psychological characteristics of mothers caring for adults with intellectual disabilities; building collaborative relationships; and incorporating mothers' knowledge, values and cultural background into care are crucial. This highlights the importance of developing and providing a curriculum that systematically teaches the skills required for family‐centred care approaches. Moreover, promoting trusting relationships between nurses and mothers, along with joint decision‐making, aligns with findings in other settings, such as medical institutions (Mestre et al. [<reflink idref="bib19" id="ref50">19</reflink>]). Thus, the current results may apply to contexts beyond day‐service centres, with due consideration of the specific characteristics of each setting.</p> <p>Despite these important findings, this study has some limitations. The participants were nurses working in a specific region of Japan, and nurses in day‐service centres in other areas may face different challenges. The results may differ in countries with higher or lower gender gap indices than in Japan. Additionally, since this study focused on nurses caring for adults with intellectual disabilities, the concerns of nurses supporting individuals in other age groups might differ. Expanding the survey while controlling for the age group of service‐users could help clarify differences in collaboration between nurses and mothers based on the service‐users' age. Additionally, the nurses surveyed in this study viewed the mother as the primary caregiver, and collaboration with mothers was clearly observed. Future research investigating collaboration between nurses and fathers should examine the impact of caregivers' gender on collaboration with nurses.</p> <hd id="AN0187616971-19">Conclusion</hd> <p>Nurses in day‐service centres interacted with each service‐user's family in a manner that reflected the family's dynamics, ensuring effective collaboration with the mothers. By recognising the unique histories of service‐users and their mothers, the nurses provided care that honoured these backgrounds. They leveraged their professional expertise to balance the service‐users' health needs with the mothers' preferences. These findings underscore the importance of nurses listening attentively to mothers' wishes and adapting their care approaches accordingly. Since this study was conducted in a country with a low gender gap index, it is implicitly expected that mothers of service‐users will assume responsibility for general care. Maternal caregiving dynamics may differ in countries or regions with higher gender gap indices.</p> <p>This study highlights the critical role of collaborative relationships between healthcare providers and family members in achieving optimal care outcomes. This approach respects the caregiving methods preferred by mothers and integrates professional insights, ensuring a holistic and personalised care experience for service‐users. This study advocates for collaboration between mothers of community‐dwelling individuals with intellectual disabilities and nurses, noting key implications. Further, communication between the family and nurses and family‐centred care approaches are recommended. Future research could expand this area by controlling for the age group of service‐users and the primary caregiver's gender.</p> <hd id="AN0187616971-20">Acknowledgements</hd> <p>We are grateful to all the nurses, facility staff and service‐users for their assistance with this study. This work was supported by a Grant‐in‐Aid for Scientific Research (JPSS KAKENHI Grant #JP21K21117; research representative: Yoshimi Ito).</p> <hd id="AN0187616971-21">Ethics Statement</hd> <p>The study was approved by Ethics Committee Tohoku University Graduate School of Medicine (approval number 2019‐1‐507). We obtained written informed consent from all participants before data collection. We conducted this study in accordance with the ethical standards of the Declaration of Helsinki.</p> <hd id="AN0187616971-22">Consent Statement</hd> <p>The authors have nothing to report.</p> <hd id="AN0187616971-23">Conflicts of Interest</hd> <p>The authors declare no conflicts of interest.</p> <hd id="AN0187616971-24">Data Availability Statement</hd> <p>The authors have nothing to report.</p> <ref id="AN0187616971-25"> <title> References </title> <blist> <bibl id="bib1" idref="ref1" type="bt">1</bibl> <bibtext> Aksamit, D., and M. Del Mar Badia Martin. 2022. " Experiences of Mothers Who Care for Adults With Profound Intellectual Disabilities. Qualitative Study." International Journal of Special Education 36, no. 2 : 1 – 12. https://doi.org/10.52291/ijse.2021.36.13.</bibtext> </blist> <blist> <bibl id="bib2" idref="ref2" type="bt">2</bibl> <bibtext> Appelgren, M., C. Bahtsevani, K. Persson, and G. Borglin. 2018. 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INQUIRY: The Journal of Health Care Organization, Provision, and Financing 58 : 46958021991301. https://doi.org/10.1177/0046958021991301.</bibtext> </blist> </ref> <aug> <p>By Yoshimi Ito; Kyoko Asakura; Shoko Sugiyama and Nozomu Takada</p> <p>Reported by Author; Author; Author; Author</p> </aug> <nolink nlid="nl1" bibid="bib15" firstref="ref4"></nolink> <nolink nlid="nl2" bibid="bib35" firstref="ref5"></nolink> <nolink nlid="nl3" bibid="bib36" firstref="ref6"></nolink> <nolink nlid="nl4" bibid="bib29" firstref="ref8"></nolink> <nolink nlid="nl5" bibid="bib12" firstref="ref11"></nolink> <nolink nlid="nl6" bibid="bib32" firstref="ref13"></nolink> <nolink nlid="nl7" bibid="bib14" firstref="ref14"></nolink> <nolink nlid="nl8" bibid="bib18" firstref="ref15"></nolink> <nolink nlid="nl9" bibid="bib25" firstref="ref16"></nolink> <nolink nlid="nl10" bibid="bib24" firstref="ref18"></nolink> <nolink nlid="nl11" bibid="bib23" firstref="ref20"></nolink> <nolink nlid="nl12" bibid="bib34" firstref="ref21"></nolink> <nolink nlid="nl13" bibid="bib27" firstref="ref23"></nolink> <nolink nlid="nl14" bibid="bib31" firstref="ref24"></nolink> <nolink nlid="nl15" bibid="bib17" firstref="ref25"></nolink> <nolink nlid="nl16" bibid="bib11" firstref="ref26"></nolink> <nolink nlid="nl17" bibid="bib26" firstref="ref27"></nolink> <nolink nlid="nl18" bibid="bib10" firstref="ref28"></nolink> <nolink nlid="nl19" bibid="bib21" firstref="ref29"></nolink> <nolink nlid="nl20" bibid="bib20" firstref="ref30"></nolink> <nolink nlid="nl21" bibid="bib30" firstref="ref36"></nolink> <nolink nlid="nl22" bibid="bib28" firstref="ref37"></nolink> <nolink nlid="nl23" bibid="bib33" firstref="ref38"></nolink> <nolink nlid="nl24" bibid="bib16" firstref="ref39"></nolink> <nolink nlid="nl25" bibid="bib13" firstref="ref41"></nolink> <nolink nlid="nl26" bibid="bib22" firstref="ref42"></nolink> <nolink nlid="nl27" bibid="bib19" firstref="ref46"></nolink> |
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| Items | – Name: Title Label: Title Group: Ti Data: Nurse-Mother Collaborations in Disability Day-Service Centres for Individuals with Intellectual Disabilities – Name: Language 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> – Name: TitleSource Label: Source Group: Src Data: <searchLink fieldCode="SO" term="%22British+Journal+of+Learning+Disabilities%22"><i>British Journal of Learning Disabilities</i></searchLink>. 2025 53(3):351-359. – Name: Avail 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 – Name: PeerReviewed Label: Peer Reviewed Group: SrcInfo Data: Y – Name: Pages Label: Page Count Group: Src Data: 9 – Name: DatePubCY Label: Publication Date Group: Date Data: 2025 – Name: TypeDocument Label: Document Type Group: TypDoc Data: Journal Articles<br />Reports - Research – Name: Subject Label: Descriptors Group: Su Data: <searchLink fieldCode="DE" term="%22Nurses%22">Nurses</searchLink><br /><searchLink fieldCode="DE" term="%22Mothers%22">Mothers</searchLink><br /><searchLink fieldCode="DE" term="%22Cooperation%22">Cooperation</searchLink><br /><searchLink fieldCode="DE" term="%22Child+Care+Centers%22">Child Care Centers</searchLink><br /><searchLink fieldCode="DE" term="%22Social+Services%22">Social Services</searchLink><br /><searchLink fieldCode="DE" term="%22Intellectual+Disability%22">Intellectual Disability</searchLink><br /><searchLink fieldCode="DE" term="%22Child+Caregivers%22">Child Caregivers</searchLink><br /><searchLink fieldCode="DE" term="%22Interpersonal+Relationship%22">Interpersonal Relationship</searchLink><br /><searchLink fieldCode="DE" term="%22Child+Rearing%22">Child Rearing</searchLink><br /><searchLink fieldCode="DE" term="%22Foreign+Countries%22">Foreign Countries</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.12641 – Name: ISSN Label: ISSN Group: ISSN Data: 1354-4187<br />1468-3156 – Name: Abstract Label: Abstract Group: Ab Data: Background: Day-service centres offer valuable support for individuals with intellectual disabilities, often referred to as service-users. Due to potential communication challenges, nurses must gather information from caregivers, particularly mothers. This study explores the collaboration between nurses at day-service centres and the mothers of service-users to enhance care quality. Methods: This qualitative study collected data from six nurses working at day-service centres in Japan and conducted an analysis using a descriptive narrative approach. Each nurse participated in two or three semi-structured interviews, where nurses were encouraged to speak freely, resulting in 16 interviews. Findings: Three key themes emerged from the collaboration between nurses and service-users' mothers: (1) 'building good relationships with parents to ensure a smooth exchange of information about service-users'; (2) 'providing the same care at the day-service centre as the service-user would receive at home'; and (3) 'identifying areas that nurses cannot compromise on while respecting how mothers care for their children'. Conclusions: These findings provide insights into effective nursing care for individuals with intellectual disabilities in day-service centres, emphasising the importance of productive engagement with their mothers. – Name: AbstractInfo Label: Abstractor Group: Ab Data: As Provided – Name: DateEntry Label: Entry Date Group: Date Data: 2025 – Name: AN Label: Accession Number Group: ID Data: EJ1482057 |
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| RecordInfo | BibRecord: BibEntity: Identifiers: – Type: doi Value: 10.1111/bld.12641 Languages: – Text: English PhysicalDescription: Pagination: PageCount: 9 StartPage: 351 Subjects: – SubjectFull: Nurses Type: general – SubjectFull: Mothers Type: general – SubjectFull: Cooperation Type: general – SubjectFull: Child Care Centers Type: general – SubjectFull: Social Services Type: general – SubjectFull: Intellectual Disability Type: general – SubjectFull: Child Caregivers Type: general – SubjectFull: Interpersonal Relationship Type: general – SubjectFull: Child Rearing Type: general – SubjectFull: Foreign Countries Type: general – SubjectFull: Japan Type: general Titles: – TitleFull: Nurse-Mother Collaborations in Disability Day-Service Centres for Individuals with Intellectual Disabilities 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: 09 Type: published Y: 2025 Identifiers: – Type: issn-print Value: 1354-4187 – Type: issn-electronic Value: 1468-3156 Numbering: – Type: volume Value: 53 – Type: issue Value: 3 Titles: – TitleFull: British Journal of Learning Disabilities Type: main |
| ResultId | 1 |
