Ward atmosphere for inpatients with intellectual disability and mental illness: family members’ perceptions and experience

Abstract

Inpatient admission may be necessary and effective in treatment of mental illness in people with intellectual disabilities. Although risk of mental illness is increased in this population, adaptations of inpatient treatment and ward atmosphere for this population remain sparsely described. For the current qualitative study, family members were interviewed about their experiences of ward atmosphere and mental health nursing in a specialised inpatient ward for adults with intellectual disabilities. Using thematic analysis, four themes were identified. Two concerned participants’ perceptions of the patient’s experience (patients’ therapeutic relationships with staff members, and staff attitudes and specific expertise in working with people with intellectual disabilities), while two concerned the patients’ own experiences (feeling safe and involved, and gaining new knowledge and understanding). These findings indicate that trust in staff is important for family members to feel safe, and that extra effort may be necessary to build such trust among the families of inpatients with intellectual disabilities. Developing good 1:1 therapeutic relationships with the patient, helping the patient feel safe and understood, demonstrating specific experience and skills relating to mental health care for this specific population, family involvement, and understanding inpatient treatment as a collaborative effort, may all contribute to facilitating this trust.

Keywords:

• Intellectual disability
• mental health
• ward atmosphere
• inpatient services
• families

Introduction

The understanding of mental health inpatient units as potentially therapeutic settings goes back about a hundred years (Sullivan 1931). The term ward atmosphere, also referred to as social or emotional climate, was coined by Moos and Houts (1968) to describe the therapeutic characteristics of inpatient wards. People with intellectual disabilities are at increased risk of mental illness (Deb, Perera, et al. 2022; Cooper, Bertelli, and Bradley 2022; Perera et al. 2020; Buckley et al. 2020). They may also be in need of, and profit from, inpatient treatment (Bakken and Martinsen 2013; Bakken, Røssberg, and Friis 2012; Langdon, Swift, and Budd 2006). While there is apparent consensus that approaches used in the general population can often be adapted and applied in treatment of mental illness in people with intellectual disabilities (Didden et al. 2022; Deb, Bertelli, et al. 2022; Siegel et al. 2020), knowledge is currently limited with regard to the specifics of such adaptations. This includes adaptation of mental health nursing strategies (Bakken and Sageng 2016), and few studies to date have explored ward atmosphere for this population (Sommerstad et al. 2021; Bakken, Røssberg, and Friis 2012).

For inpatients without intellectual disabilities, several studies have found ward atmosphere to be associated with patient outcome and satisfaction (e.g. McAndrew et al. 2014; Carr and Ball 2014; Johansson and Eklund 2004; Røssberg and Friis 2003; Maree 2001; Eklund and Hansson 1997; Smith, Gross, and Roberts 1996; Friis 1986). A scale to measure the individual’s perception of ward atmosphere, the Ward Atmosphere Scale (WAS) was constructed by Moos and Houts (1968) and is widely used in this literature. While the WAS has been used for people with mild or moderate intellectual disabilities (McGee and Woods 1978), it has proved challenging to use in inpatient settings for people with intellectual disabilities who have co-occurring mental illness (Bakken, Røssberg, and Friis 2012). Nevertheless, research to date indicates that ward atmosphere affects treatment outcomes and patient satisfaction for inpatients with intellectual disabilities in similar ways to other inpatients (Sommerstad et al. 2021; Bakken, Sageng, et al. 2017; Bakken, Røssberg, and Friis 2012; Langdon, Swift, and Budd 2006).

Largely overlapping with the contents of the WAS, Gunderson (1978; Maree 2001) conceptualised the five components of a therapeutic environment in inpatient units. These are containment (provision of protection, shelter, seclusion, meeting basic needs), support (supporting and strengthening ego-functions, facilitating well-being), structure (provision of predictability, adapting the environment to the individual’s needs), involvement (facilitating social interaction and connection, breaking out of isolation), and validation (respect, affirming thoughts, feelings, and personality, as well as seeing symptoms as meaningful). A recent qualitative study found these components to be applicable also to the perceptions and experiences of inpatients with intellectual disabilities and mental illness (Sommerstad et al. 2021). Moreover, this study found that the individual’s perceptions of their personal, therapeutic relationships with staff members appeared to fundamentally affect their experiences of the five components. These findings are in line with previous research conducted in general mental health wards, where the 1:1 therapeutic relationship with ward staff is emphasised as critical to effective mental health nursing (McAndrew et al. 2014; Maree 2001). In addition, Sommerstad and colleges suggested that concrete signifiers of Gunderson’s five components may be more important to people with intellectual disabilities, as they may struggle to abstract their own experiences (e.g. staff may need to be physically and visually present to be perceived as accessible). Finally, the participants in the study reported having limited influence on treatment choices.

Family members’ efforts are often critical to ensure access to mental health services for individuals with intellectual disabilities (Ali et al. 2013; Whittle et al. 2018). Moreover, family members, typically parents, often contribute as proxy informants in assessment and treatment evaluation for individuals with intellectual disabilities and mental illness (Kildahl, Oddli, and Helverschou 2023; Deb, Perera, et al. 2022; Siegel et al. 2020). While information from proxy reports is not interchangeable with self-reporting (Kildahl, Oddli, and Helverschou 2023; Scott and Havercamp 2018; Andresen, Vahle, and Lollar 2001), reliance on proxy reports in these assessments increases with decreasing verbal language abilities in the subject (Kildahl, Oddli, and Helverschou 2023). It follows that family members are often involved when an individual with intellectual disability is admitted to an inpatient unit (Chester et al. 2020; Hellerud and Bakken 2019; Bakken, Sundby, et al. 2017). Also for mental health nursing, information from families can be essential to make effective and appropriate treatment choices (Rysstad et al. 2022; Kildahl et al. 2021). However, family members’ views on ward atmosphere for inpatients with intellectual disabilities remain understudied (Melvin et al. 2022).

Aim

The aim of the current study is to explore family members’ perceptions and experience of the ward atmosphere in a specialised mental health inpatient unit for adults with intellectual disabilities:

What aspects of the ward atmosphere and mental health nursing did the family members perceive as helpful to the patient or themselves?

Methods

Design and setting

The study was conducted in a regional, specialised mental health department for adults with intellectual disabilities. The department accepts referrals only from other hospital-level services in mental health care or habilitation, serving a geographical area comprising more than half of Norway’s population (for further information regarding the organisation of services in Norway, see Bakken et al. 2018). At the time of the study, the department consisted of two separate inpatient units, each with capacity for five patients. The department emphasises family involvement in assessment and treatment; family members participate in regularly scheduled meetings with psychiatrists/psychologists and ward staff. Ward staff are available to answer telephone calls, and families are able to visit the patients regularly, in addition to providing necessary information for adequate assessment and treatment. Ward staff are organised in teams around each patient, in order to reduce the number of staff members with whom patients and families need to interact. Each team has a psychologist, a psychiatrist, and a team leader from the ward (a mental health or intellectual disability nurse), as well as other team members from the ward staff.

This study is part of a larger project, where perceptions and experience of ward atmosphere in these units were concurrently explored in patients, family members, and staff members in the units (Sommerstad et al. 2021)

Participants and recruitment

From the ten participants in the previous study interviewing patients (Sommerstad et al. 2021), eight had close family members who were in some way involved in their treatment. These eight families were invited, and family members for six patients consented to participate in the study. The characteristics included gender, age, intellectual disability/autism, mental health disorder diagnosis at discharge, and length of stay.

The patients (four female, six male, ages 16–46) were all diagnosed with and treated for a mental health disorder during their admission. Diagnoses included schizophrenia, personality disorder, obsessive-compulsive disorder, depressive disorder, and anxiety disorder. The level of intellectual disability was classified as mild (5 patients) or moderate (3 patients). Two participants were diagnosed with autism but not intellectual disability. However, these two patients had levels of adaptive functioning in the mild-moderate intellectual disability range. Three were diagnosed autism additional to intellectual disability. The length of stay was between three and six months (M = 4.4 months).

One family member was interviewed for each patient, and participants for the current study included four mothers, one father, and one sister.

Measures

A semi-structured interview guide was constructed to capture the family members’ perspectives. It included three introductory questions, and six questions about ward atmosphere/emotional climate, patient well-being, and mental health nursing interventions. The interview guide included a combination of open-ended questions, and yes/no questions where the participants were asked to elaborate on their answers, see Appendix for the full interview guide.

Procedure

The participants were interviewed individually by HSS or TLB, both of whom are clinicians with extensive experience of working with people with intellectual disabilities and mental illness. Interviews were audio recorded and transcribed verbatim. While they are employed by the department where the study was conducted, neither of the researchers conducting the interviews were involved in the treatment of the specific patients in the study. Interviews lasted from 30 to 60 min.

Ethical considerations

The study was approved by the Division of Mental Health and Addiction, and the Data Protection Official at the Oslo University Hospital, Oslo, Norway. Written, informed consent was provided by all patients in the study, as well as by all family members participating in the current study.

Analyses

The transcripts were analysed using thematic analyses (Braun and Clarke 2006). A six-step analytic process was applied (Braun and Clarke 2006): Step 1 involved transcription and familiarisation with the data. Step 2 included identifying initial codes constituting the most basic elements of the raw data. In step 3, the identified codes were sorted into potential, ‘candidate’ themes. In step 4, all candidate themes were re-evaluated, and the final themes were established, in part by merging candidate themes. In step 5, the themes were defined, named, and grouped into the final theme structure. In step 6, quotes substantiating the themes were selected, and the manuscript was written, providing an opportunity for further clarification of the themes and their structure. Quotes to substantiate each theme were chosen to reflect variation within each theme. The quotes were translated from Norwegian to English after finalisation of the analysis. All participants are represented with at least two quotes in the presentation below.

Results

The four emergent themes were organised in two groups: (1) themes relating to families’ perceptions of the patient’s experience in the ward, and (2) themes relating to the families’ own experiences. All participants contributed to all themes (See Table 1). In general, family members perceived the inpatient admission to have been helpful to the patient and themselves. Three of the participants expressed that the assessment and treatment in the ward had positively impacted the community services following discharge.

Table 1. Emergent themes.

Group	Themes
Families’ perceptions of the patient’s experience in the ward	Patients’ therapeutic relationships with staff members
	Staff attitudes and specific expertise in working with people with intellectual disabilities
Families’ own experiences of the admission	Feeling safe and involved
	Gaining new knowledge and understanding

The families’ perceptions of the patient’s experience in the ward

Patients’ therapeutic relationships with staff members

All six participants described how developing personal, therapeutic relationships with specific staff members had been important for the patient during the admission. These relationships were perceived as facilitating trust, and the patient feeling understood: ‘She experienced being understood. It’s about who can and cannot be trusted. The staff members were helpful and trustworthy’. Availability was emphasised as facilitating the building of these relationships, with the same staff working days, evenings, and weekends, making it possible for staff members to get to know the patient well: ‘The staff members are easily accessible for the patient; they have good relationships with the staff members. Spending a lot of time together strengthens the relationship’.

Good relationships with staff were perceived as essential in making patients feel safe in the ward, an important foundation for more specific treatment interventions: ‘He felt safe. It’s the staff, I think. He felt very much taken care of, and he felt that safety, I think’. Participants reported observing the effects of these relationships in the patients’ behaviours: ‘Simply calmer, she is more peaceful. She’s not as stressed, not as restless. She’s just… calmer. And more at ease’. Furthermore, family members saw these relationships as directly affecting treatment outcomes: ‘We have observed a great improvement during the stay. Staff have interacted with her in a positive way, which has elicited personal growth in her’. Incidentally, the family members themselves reported having good relationships with the same staff members with whom they perceived the patient to have a good relationship.

Staff attitudes and specific expertise in working with people with intellectual disabilities

All six participants described observing specific professional skills relating to working with people with intellectual disability, and/or autism, which they perceived as important for the patients’ treatment. One of the participants quoted their child’s description of the ward: ‘I have been in a closed and safe world. They understand how it is to be autistic, how I feel inside. I think they are almost the only people who have ever expressed having understood this’, highlighting the importance of specific expertise in order to be able to make the patient feel understood.

One participant expressed that ‘They see my little child, behind her good verbal skills’, reflecting relief that the staff understood that adapting care and communication requires taking account of more than the individual’s verbal language skills. Furthermore, this understanding made participants feel confident that more challenging situations would be managed in a helpful manner, despite previous negative experiences: ‘It’s not a risk if she gets angry. Normally, services are so afraid that she’ll get angry. But she needs to be protected from herself. She doesn’t look disabled, she looks normal’.

Beyond understanding the patient’s individual characteristics and adapting to these, participants described more specific treatment interventions used by nursing staff: ‘It was so good for him that it was possible to have in-depth communication with staff members. He liked it a lot. The staff made him understand that he could master his anger’. Some participants highlighted staff attitudes, including how they perceived that staff saw the patients as important, as well as equally deserving of respect and understanding as other people: ‘The staff members are skilled professionals. The staff members have good attitudes’.

The families’ own experiences of the admission

Feeling safe and involved

Families reported feeling safe when the patients were admitted to the ward. Observing that the patients felt safe contributed to families feeling safe: ‘My daughter knew the names of the staff and told me who she could really trust in the ward. That was comforting to me’. This feeling of safety was emphasised as important by all participants: ‘We handed over our child; he has never been away from us before. It was his first time away, and then we counted on him being taken care of in a good way’. Moreover, family members’ own relationships with ward staff were perceived to contribute to this feeling: ‘Very safe. I liked everyone there’. Feeling safe was related to trust, ongoing trust that staff were caring for and looking after the patient, as one participant expressed, ‘at all times’. ‘Nursing staff made time for them, and that contributed to the feeling of safety’.

One participant described feeling some apprehension: ‘I leave the most precious thing I have to you in the ward. Her needs exceed what most ordinary people need’, reflecting apprehension about whether staff would understand the patient’s needs, and the level of trust required for this parent to feel safe during the admission. This indicates that observing staff’s specific expertise relating to intellectual disabilities contributed to family members feeling safe during the admission. Finally, family members’ involvement in assessment and treatment contributed to feeling safe: ‘We have been involved all the way’. ‘The co-operation with staff members worked well. They listened to me’. Staff members being available to answer phone calls and frequent contact points were emphasised by the participants as facilitating involvement and collaboration.

Gaining new knowledge and understanding

Family members expressed gaining new knowledge, insights, and understanding into the patients’ conditions and behaviours. ‘Earlier I knew a little. Now I know a lot! I have learned a lot more about her illness. This extended to affecting the relationships family members had with the patients: ‘We learned a lot about how to be together with our daughter’. Family members reported that they had gained new insights during the stay in the ward, not only with regard to the patients’ mental illness, but also concerning autism spectrum disorder and intellectual disability. One family, coming from a different cultural background, reported that the stay had helped them understand the organisation of the health care system, and that they were thereby better equipped to help the patient access the appropriate services: ‘We learned about the health care system. We learned about our rights and our son’s rights’.

Discussion

Family members interviewed about the ward atmosphere in specialised inpatient wards for people with intellectual disabilities emphasised the patient’s perspective, in particular with regard to the importance of the patient developing personal therapeutic relationships with specific members of the ward staff. While families reported feeling safe during the admission, they also expressed some apprehension, and the specific expertise of ward staff with regard to intellectual disabilities and autism appeared to contribute to alleviating this apprehension. Moreover, families’ feelings of safety appeared to primarily revolve around whether they perceived the patients to feel safe, understood, and having their needs met. Staff attitudes towards people with intellectual disabilities appear likely to affect how family members perceive and interact with services.

Sommerstad et al. (2021) found that the quality of the relationships with staff members affected how inpatients with intellectual disabilities experienced the therapeutic components described by Gunderson (1978). In line with this, the family members interviewed for the current study also emphasised the importance of developing 1:1 therapeutic relationships between patients and staff members during the admission. Establishing such a relationship with individuals with intellectual disabilities who have co-occurring mental illness can be challenging, and an inpatient ward is an unusual, and occasionally frightening, setting for some people with intellectual disabilities. However, these findings indicate that families also see 1:1 therapeutic relationships with staff as an essential component of inpatient treatment, for the patient as well as for themselves. This is in line with previous research in mental health nursing more generally (e.g. McAndrew et al. 2014; Meleis 2011; Stuart 2001), emphasising the emotional and personal bond that evolves when the patient and staff work together towards the common goal of symptom relief (Stuart 2001).

Inpatient treatment for individuals with intellectual disabilities in mental health services is a collaborative effort, involving mental health professionals, community caregivers, and family members (Chester et al. 2020; Codd and Hewitt 2021; Whittle et al. 2018; Bakken, Sundby, et al. 2017; Leonard et al. 2016). In the current study, feeling involved appeared to contribute to family members feeling safe and experiencing trust in ward staff. When adapting mental health services for people with intellectual disabilities, it is likely to be helpful to take account of the fact that family relationships often are different for people with intellectual disabilities. Parents of people with intellectual disabilities do not stop ‘parenting’ when their children become adults (Codd and Hewitt 2021; Leonard et al. 2016), and the relationship between adults with intellectual disabilities and their parents may remain at a similar level of asymmetry as in childhood. Thus, adults with intellectual disabilities often depend more on their families, and it is perhaps not surprising that some participants expressed apprehension with regard to leaving their child in the care of others. Moreover, family members may have negative experiences with the health care system, including having their knowledge of the patient disregarded or being seen as ‘pushy’ or over-protective (Ali et al. 2013). In other words, in adapting inpatient treatment for individuals with intellectual disabilities, an extra effort may be necessary than for other inpatient populations to enable families to trust ward staff. The current findings indicate that in addition to working with and involving families, specific expertise concerning intellectual disabilities and helping the patient develop good relationships with ward staff may contribute to building such trust.

People with intellectual disabilities and co-occurring mental illness may struggle to convey their own needs and wishes verbally (e.g. Sommerstad et al. 2021; Bakken, Sageng, et al. 2017; Kildahl et al. 2017), requiring staff members to explore and hypothesise to a greater degree than what is common in mental health nursing for other populations (Donner and Gustin 2020; Bakken, Sageng, et al. 2017). Parents may have a more intuitive understanding of their children, and may therefore contribute with valuable perspectives about routines, interests, and needs that are important to the specific person (Rysstad et al. 2022; Kildahl et al. 2017). Such information about the patients’ interests and preferred activities may be helpful to ward staff when attempting to develop personal therapeutic relationships with the patient, suggesting that family involvement may facilitate building these relationships and thereby mental health nursing efficacy in this population.

In addition to specific interests and activities, mental health nursing strategies need to take account of the individual’s underlying disability. One participant expressed relief that the staff had understood that communication and care needed to be adapted not only to the patient’s verbal language skills, but also to other aspects of development affected by their intellectual disability. Emotional development, for instance, may not be at the same level as intellectual or verbal language development (Sappok, Heinrich, and Böhm 2020). It is likely that understanding the individual’s basic emotional needs is necessary for ward staff to build relationships, communicate appropriately, and help the patient feel understood (Sappok, Zepperitz, and Hudson 2021); these were aspects that family members described as important and helpful elements of the ward atmosphere.

While the current findings are unlikely to be empirically generalizable, findings such as these can be transferrable (Maxwell and Chmiel 2014), i.e. they provide understandings that are relevant to other contexts and cases. While the current findings are unlikely to be representative due to the limited sample size, findings from a larger Australian study including 42 family members/service providers are in line with the current findings regarding the importance of maintaining contact with the patients’ close relatives during inpatient stay (Weise et al. 2020). Another larger scale study from the US asked 450 family members about their experiences with a crisis inpatient unit for people with intellectual disabilities and mental health/behavioural issues (Holingue et al. 2020), with findings in line with the current study’s: clinicians being available to families and treating families as equal partners were seen as important. In addition, co-ordination of services and communication were seen as important, and the family members in the study by Holingue and colleagues express gratitude towards mental health professionals, as did the informants in the current study. As such, the current participants’ perspectives may be helpful in other settings and contexts involving adaptation of mental health inpatient treatment for individuals with intellectual disabilities and their families.

Limitations

The sample for this qualitative study was small and obtained in a specific context, limiting the generalisability of these findings. Moreover, the researchers were employed and working in the same department where the study was conducted, potentially influencing the participants’ reports by making them less likely to report negative experiences or perceptions. However, neither of the researchers conducting the interviews was directly involved in treatment of any of the participating families, and family members were assured of their complete anonymity prior to interviews. In addition, the authors all differ as to the type of clinical roles in which they have experience, to ensure different perspectives in the analyses. To ensure rigour and transparency, at least two of the authors were involved in all steps of the analytic process. Finally, not all the participants in the study by Sommerstad and colleges had close family members, and not all the families consented to participate in the current study, which may have affected the perspectives reported for the current study.

Conclusions

The present findings underpin that the most important theme for the families is that their son or daughter is provided adequate treatment for their mental health disorder. In addition, trust is important for family members in order to feel safe, and an extra effort may be necessary to build such trust for the families of inpatients with intellectual disabilities. Family involvement, and understanding inpatient treatment as a collaborative effort, may further facilitate this trust. Thus, family involvement and information may help to facilitate the efficacy of mental health nursing for inpatients with intellectual disabilities.

Data availability statement

There are no data from this project available.

Disclosure statement

No potential conflict of interest was reported by the authors.