Article
Diagnoses, labels and stereotypes: Supporting children with intellectual disabilities in the hospital Megan Aston
Journal of Intellectual Disabilities 2014, Vol. 18(4) 291–304 ª The Author(s) 2014 Reprints and permission: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/1744629514552151 jid.sagepub.com
School of Nursing Dalhousie University, Canada
Lynn Breau Glenrose Rehabilitation Hospital, Canada
Emily MacLeod School of Nursing Dalhousie University, Canada Date accepted: 8 August 2014
Abstract Children with intellectual disabilities (IDs) and their parents continue to experience stigma within health-care systems. Whilst some research studies have examined the stigma associated with children who have IDs, there continues to be a gap in understanding how the experiences of these children, their parents and nurses have been constructed personally, socially and institutionally. Face-to-face semi-structured interviews were conducted with 17 mothers, 12 nurses and 8 children. Feminist post-structuralism and discourse analysis were used to examine the experiences of children, parents and nurses with the intent of understanding the dominant taken-for-granted everyday practices as well as hidden or marginalized practices. Four main themes emerged, which included the theme of Diagnoses, Labels and Stereotypes, which will be discussed in this article. Participants provided rich detail about their experiences in the hospital and how they addressed and often attempted to challenge the stigma associated with children with IDs. Keywords children, intellectual disabilities, stigma, feminist post-structuralism, hospital
Corresponding author: Megan Aston, School of Nursing Dalhousie University, 5869 University Ave Halifax, Nova Scotia B3H 4R2, Canada. Email: [email protected]
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Social and institutional stereotypes and stigma associated with children with intellectual disabilities (IDs) often create uncomfortable and difficult situations for everyone involved. Whilst interactions of the general public as well as health-care providers with children with IDs may be well intentioned, the way in which IDs have been socially constructed through particular beliefs and values continues to marginalize children with IDs and their parents. In other words, because they are not part of ‘mainstream’ ways of acting, communicating and participating in society, they become seen as ‘other’ and are often marginalized. This creates many challenging situations for parents and their children with IDs, both in society and the health-care system. A number of researchers have identified that stigmatization of patients with IDs is prevalent in hospital settings (Gibbs et al., 2008; Matziou et al., 2009; Shanley and Guest, 2005). For example, two separate studies, completed in the United Kingdom and Greece, examined nursing attitudes towards individuals with disabilities and found less positive attitudes towards this population compared to the mainstream patients (Lewis and Stenfert-Kroese, 2010; Matziou et al., 2009). Matziou et al. (2009: 457) concluded that ‘our society, despite scientific progress and technological development, treats disabled children with prejudice, stigma and labelling’. Although this finding may not be particularly surprising, it is disheartening to realize that despite efforts by many advocate groups, government and education to include children with IDs, stigma still exists. What we found missing in our literature review was a lack of research that focused on the reasons why and how stigma still exists, particularly in the health-care system. Therefore, in order to better understand this phenomenon, we felt it was important to conduct a study that would examine the hospital experiences of children with IDs, their parents and nurses with a focus on relations of power. More specifically, this entailed a unique exploration of how their personal experiences had been constructed through social and institutional beliefs, values and practices. In our findings, we will present how various discourses associated with IDs were experienced in complex ways by all three participant groups.
Background Children with IDs experience higher levels of hospital stays and longer admissions than ‘typically developing children’ (Mahon and Kibirige, 2004; Williams et al., 2005). Williams et al. (2005) found in their comprehensive study of a 10-year cohort in Western Australia that, compared to children under the age of 5 years who had no IDs, those with an ID had both more hospital admissions (5.3 vs. 2.2) and spent more days in the hospital (29.9 days vs. 8.3 days). Children with Down syndrome have also been reported to average just under 25 days in hospital between birth and 3 years, and close to 56 days between birth and 10 years of age (Frid et al., 2002). Many people with IDs also have complex medical conditions that result in more intense medical care or extended admissions (Walsh et al., 1997) and often have co-morbid conditions such as feeding difficulties, enuresis or mobility challenges that require ongoing management in hospital, adding to their care needs (Baxter et al., 2006; Berg et al., 2007; Kwok and Cheung, 2007; Yam et al., 2008). Research pertaining to the experiences of children with IDs within the hospital setting is minimal. A systematic review of research pertaining to experiences of secondary health-care for children with IDs completed by Baker, et al. (2009) found only 13 studies in the United Kingdom which met their inclusion criteria. The research that has been conducted reports that there is higher reliance on caregivers, ineffective communication and lack of nurse education and knowledge. Brown and Guvenir (2008: 112) interviewed the parents or caregivers and the nursing staff of children with IDs and found that nurses reported feeling ‘apprehension’ because they did not ‘know what to expect’ and parents recounted feeling ‘helpless’ and ‘anxious’ because the health-care staff
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did not know their child or their needs. A strong reliance on the parent or caregiver was described by both the nursing staff and the caregivers themselves. Nurses expressed inability to manage their caseload if the parent was not present with the child. Further studies into stereotyping and stigmatization suggest that nurses may treat individuals with IDs differently. As mentioned above, a study completed by Lewis and Stenfert-Kroese (2010) surveyed 262 nurses to determine their attitudes towards individuals with IDs. Results suggest that nurses have less positive attitudes towards individuals with IDs and that they are more likely to ask the caregivers to remain on the unit to assist them with their care. Nurses asserted being less likely to explain treatment plans to individuals with IDs and reported that they did not feel they had sufficient skills or training to meet the needs of this population. Additional studies have identified feelings of discrimination and stigmatization by individuals with IDs and their families. Gibbs et al. (2008) completed focus group studies with adults with IDs and their parents or caregivers to determine their experiences in the hospital setting. Caregivers reported hearing negative comments about the individuals they cared for and parents described some uncertainty among health-care professionals about appropriate ways to treat and care for their child. Additional concerns were that nursing staff often underestimated the patient’s abilities and would do more for the patient than required, risking the individual losing necessary skills. Communication with individuals with IDs was also described as poor at times. However, some caregivers felt this was not necessarily specific to individuals with IDs but rather applicable to everyone. Webber et al. (2010) also completed a study of hospital experiences of older individuals with IDs in Australia and found similar results. Caregivers suggested that health-care professionals were uncomfortable with an individual’s additional needs; they felt that health-care professionals had very minimal knowledge about disabilities and, as a result, did not respond to the patient appropriately. Assumptions were also made about an individual’s ability to understand treatment plans or medical information. In some instances, health-care professionals were said to have ‘spoken over’ the individual, whilst at other times assumptions were made that individuals with IDs could not understand something when they actually could. Research studies have identified that the care of children with IDs is physically, mentally and emotionally complex. In particular, a lack of education and understanding on how to care for children with IDs as well as stigma, stereotypes and fear were identified as factors that lead to misunderstandings and ultimately poor care. Little research has been conducted that examined these complexities from a critical social perspective that included a combination of personal, social and institutional discourses. Therefore, this study examined the personal experiences of children with IDs, their parents and nurses who cared for them.
Purpose The purpose of the study was to better understand how children with IDs, their parents and nurses experience care whilst interacting with each other during the child’s hospital visits.
Methodology Feminist post-structuralism Feminist post-structuralism was used to examine the hospital experiences of children with IDs, their parents and nurses who cared for them (Butler, 1992; Cheek, 2000; Foucault, 1983). In
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particular, this methodology enabled us to understand how participants negotiated institutionally and socially constructed everyday practices associated with IDs and children. It also supported a deeper analysis of stereotypes and stigma by looking at how relations of power were experienced by participants. A feminist methodology was used to look for moments (as described by participants) that had been informed by social constructs of (dis)abilities, culture, gender, race, class or any other socially constructed position that was important to them. Discourse analysis (Butler, 1992; Cheek, 2000; Foucault, 1983) enabled us to look at specific words, meanings and personal beliefs and values that participants used to describe their experiences and then to analyse how social and institutional beliefs and values affected these experiences. For example, hospital practices that had been influenced by broader medical discourses about care ultimately affected personal practices between nurses, children with IDs and their parents. This use of discourse analysis not only enabled us to identify moments of tension, differences and similarities between different beliefs, values and practices but also provided a unique understanding of relations of power. Foucault (1983) stressed that power cannot be understood to be a simple binary. In other words, power is complex and relational, and individuals are constantly negotiating their power. People are not powerless and do not experience power as an outside force imposed by institutions or others. Instead, feminist post-structuralists discuss the importance of focusing on how individuals think about, challenge and negotiate moments where power is affecting their experience. A person’s ‘subjectivity’ positions him/her socially and contextually. For example, a person may experience herself as female, disabled and belonging to a certain race or age based on social norms. These social constructions of the self will then influence their experience and how they react, resist or agree with different practices. They negotiate through their own ‘agency’ where we can see how they may question or accept certain interactions, beliefs and values. Power is no longer seen as a simple construct that immobilizes people into static relationships. There is potential to move and change the status quo and ‘normal’ everyday practices by identifying and questioning what people do and how they do it. Power comes from within people and is negotiated through everyday practices. Power does not simply act upon people from outside forces. This study looked to identify these everyday moments and experiences of those living with IDs and those supporting and working with children with IDs.
Recruitment The research study took place over a 2-year period (from March 2011 to May 2013), with the majority of the interviews taking place in the first year. Ethical approval was obtained through the local paediatric hospital’s research ethics board prior to data collection to ensure the rights and protections of our study participants. Participants were recruited through the hospital as well as local support agencies. Thirty-seven participants agreed to participate in the study, and informed consent was obtained from all the participants prior to their participation. Parent authorization was received from the parent or the guardian of the child participants and child assent was obtained as well. Twelve nurse participants were recruited through study posters situated throughout the health centre and hosted on the internal health centre website. All nurses met the inclusion criteria of having worked with a child with an ID at the health centre during the past 2 years as well as being able to speak, read and understand English. Seventeen parents of children with IDs were recruited through mail-out packages as well as posters and postcards distributed throughout the health centre and other local support organizations.
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Although both mothers and fathers were invited to take part in the study, all participants were mothers and met the inclusion criteria that included the ability to speak, read and understand English and having a child with an ID who had obtained care at the health centre during the past 2 years. Eight child participants were recruited through mail-out packages and recruitment posters and postcards throughout the health centre and local support organizations. All children met the inclusion criteria of having a mental age of at least 7 years (as reported by a parent or guardian) having obtained care at the health centre during the past 2 years and being able to speak and understand English. Child participants had a variety of IDs, including autism, fetal alcohol syndrome and global developmental delay.
Data collection Semi-structured audiotaped interviews were completed with all participants. Interviews with children were conducted in the presence of mothers or caregivers and lasted approximately 30 minutes. The interviewer spoke directly with the children and asked them open-ended and closed-ended questions about their hospital experiences. Some children provided answers in a yes or no fashion and others offered more details and description. Some mothers and caregivers gently prompted their children throughout the interview to support their answers, but they did not influence their responses. Mothers and nurses were interviewed individually for about 60–90 minutes and were asked open-ended questions. For example, mothers were asked to describe their experiences whilst in the hospital with their children and nurses were asked to describe what it was like caring for children with IDs. Probes were used to dig deep and encourage participants to share what certain interactions meant to them and at times, how they felt. Interviews were transcribed verbatim by a transcriptionist who signed a confidentiality form. Any names and identifying information were removed from the transcripts at this time, and pseudonyms were used. All participants were given the choice of a gift certificate to a local restaurant or gift shop to thank them for their time, and mothers and caregivers were reimbursed for parking.
Data analysis Analysis took place throughout the data collection phase in order to ensure self-reflection and identify any necessary changes to interview questions or study protocol. Interview transcripts were analysed through a dual process of discourse analysis and thematic coding. However, discourse analysis was the central analysis process. Thematic coding. Each transcript was initially coded by the research coordinator using Nvivo 8 software. After a review of the first few interview transcripts, a list of codes were developed, which identified emerging themes. These codes were not finalized but rather evolved during the analysis process, merging and expanding throughout the course of the analysis. The thematic coding helped to facilitate and contextualize the discourse analysis process. Discourse analysis. Discourse analysis was the main method for data analysis, augmented by thematic analysis. In keeping with this methodology, each individual transcript was meticulously reviewed in order to understand how participants’ experiences were embedded in and influenced by social and institutional constructs. By closely examining these moments, we were able to identify participants’ unique beliefs and values and how they work within or against the institutional and social value systems around them. Participants’ beliefs, values and practices were
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initially examined on an individual basis and then the analysis took place across all transcripts by identifying common themes for further and more in-depth review of personal, social and institutional discourses. The first few transcripts were reviewed separately by each member of the research team and then discussed in order to identify emerging issues, discourses and relations of power. Subsequent transcripts were analysed by the research coordinator and then analysed using discourse analysis by the principal investigator. The research team met periodically to discuss emerging themes and then again at the end to agree upon final analysis. The following four main themes emerged: (1) diagnoses, labels and stereotypes; (2) building relationships; (3) reducing stigma through education and knowledge; (4) ID information sharing. In this article, we will discuss diagnoses, labels and stereotypes.
Findings and interpretations As we began analysing the transcripts, it quickly became evident that mothers and nurses wanted to talk about the stigma of ID and how it affected their experiences in the hospital. How stigma was experienced was woven into the stories told by the mothers about navigating the health-care system and advocating for their child. Stigma was also evident when the nurses spoke about their practice of advocating or negotiating care with the children and their parents. Whilst the children spoke about being scared of certain procedures or liking other procedures, overall they were very positive about coming to the hospital and liked the nurses and doctors. All mothers and nurses told us that they wanted to do the best thing possible for the child and shared a variety of success stories and challenges. By paying close attention to words and experiences of the participants and the meaning attributed to these words and experiences, we were able to begin to understand how relations of power affected them.
Diagnoses, labels and stereotypes The terms diagnoses, labels and stereotypes emerged as important concepts that deeply affected the experiences of all participants. By paying close attention to the language and meaning of these words, that have been socially and institutionally constructed, as well as how and when they were used, we were able to understand how access to services and relations between children, parents, nurses and other health-care professionals were experienced. The meaning of each of these words shifted and overlapped at times, depending on the context and experience of the participants. In this study, the word ‘diagnosis’ was predominantly understood to be a medical term that had been institutionally constructed. According to the participants, diagnoses were instrumental in guiding care for the children and provided insights into prognosis, treatment and support for both health-care professionals and parents. Stereotypes about children with IDs also significantly affected the care that the children received in the hospital. In this study, stereotypes were used to reflect a set of generalized beliefs associated with children with IDs. We also found that the term ‘label’ was often used interchangeably by both mothers and nurses with the terms ‘diagnosis’ and ‘stereotype’. It became evident that that the word label shifted meaning between diagnosis and stereotype, depending on the context and situation in which the participants were referring. The intent or meaning of all three words shifted between positive, negative and neutral, depending on the context. The following are the examples of how participants experienced the shifting and conflicting meanings of these three words through their experience in the hospital.
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Diagnoses and labels help negotiate care. Many mothers believed that diagnoses were essential to their child’s care to help them access services and support, and they spoke about how they used diagnoses to their advantage as they negotiated care for their child. It became evident that diagnoses could refer to more than just physical symptoms of their child and become a label that shifted meaning into a more social context that could benefit their child. The term label was used in place of, or interchangeably with, diagnosis when gaining access to care. So whether he has that label or not I think it’s actually getting him further than if he didn’t. (Mother)
Mothers also described diagnoses as potentially allowing individuals who worked with their child to better understand their child’s needs and tendencies. I’ve often wondered if he had a different diagnosis, a more clear diagnosis at that time [it] could have helped explain to them you just got to take it slow [ . . . ] and to give them some more guidance. (Mother)
Whilst using diagnoses as a type of label was common practice within the health-care discourse and often provided mothers with an ‘in’ to specialized services, some mothers experienced this dominant discourse as unsupportive. Although receiving a common diagnosis such as autism often opened the door to a myriad of services and support, a diagnosis of a rare condition did not have the same results for some mothers and children with IDs because support was contingent on specific, and often common, diagnoses. For us, we haven’t really gotten a lot of services. I find if Lucy was autistic she would get more but I find I have to really dig deep to get services here for her because she kind of falls through the cracks [ . . . ] so I just wish there was more for our specific needs, like for chromosome disorder children there isn’t a lot [ . . . ]. (Mother)
This mother has interpreted the system as creating hierarchies between diagnoses. Because her child had been diagnosed with a chromosomal disorder she could not access as many services as a child diagnosed with autism. Through discourse analysis, we can see how institutional and social constructions of different diagnoses are informed by relations of power that have created programmes and services for different diagnoses and not others. The mothers in this study were aware of this construction and the power that different diagnoses held. Mothers knew that a diagnosis was more than just identifying signs and symptoms. The term label and examples of how mothers used diagnoses to access services show how they were aware of the need to institutionally and socially label their children. Another parent identified that her son lost services that were helpful to him because his original diagnosis of autism was later removed. Unfortunately because the camp is built around the criteria that you have autism, when he lost his diagnosis of autism he lost his privilege of going to camp. (Mother)
Mothers in this study were keenly aware of the power of diagnoses and how this type of labelling was needed within the health institution as well as outside to access programming. In these cases, diagnosis meant more than understanding physical and mental aspects of a child and was used to describe and position the child in a way that would help him/her gain access to services and supports.
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That’s one sad thing about this whole necessity of labels. There’s a necessity for it in order to access resources and what happens is [ . . . ] some opportunities that would benefit somebody who doesn’t have that specific label just aren’t open to them because they don’t have that label. (Mother)
When labels shift to stereotyping. When the term label or labelling was more closely aligned with stereotyping, it predominantly carried a negative connotation. Labelling often involved making assumptions about certain attributes a child may or may not have based on a particular diagnosis. For example, some children in the study were given a diagnosis of autism and ‘labelled’ or ‘stereotyped’ as a ‘problem child’. Several mothers provided examples of negative assumptions that were made about their child’s abilities and quality of life based only on their diagnosis. These mothers experienced this practice as oppressive and unsupportive stereotyping. I mean James was healthy and really bright and he was interactive, very personable [and] we were told not to have any hope because, just because he past his first birthday didn’t mean he was going to make it to his second birthday, literally almost every visit [ . . . ] which was really upsetting because we could see how well he was doing and it was really hard to be hopeful because every visit you’re told [ . . . ] ‘well you’re seeing something we’re not seeing and you’re expecting too much and you’re not going to get it’. (Mother)
Another mother identified feeling pressured to have an abortion by doctors because there was a significant chance that her child would be born with Down syndrome. This mother chose not to have an abortion. At 24 weeks I was even encouraged to have an abortion again and it got to the point, after the second ultrasound I didn’t want to go back and my husband said ‘look we’ll go back for this other one’. I said, ‘I don’t know what the point is because I no longer know what the point of these ultrasounds are for’. They keep telling us there’s a good possibility she has Down syndrome and abortion is available [ . . . ]. (Mother)
Both of these examples show how mothers disagreed with the generalizations or stereotypes that a diagnosis carried. These mothers challenged the expert opinion, which was likely not an easy thing to do. Mothers in this study were aware of the pervasive negative social stereotypes about children with IDs. Another example demonstrates how expectations or stereotypes about children with IDs are often at the forefront of people’s minds. One mother commented that she was pleased that her child was not ‘spoken down to’ by health-care professionals, suggesting that this might be a common occurrence or expectation in other settings. Not here, not at all and what I appreciate too about the staff here, nurses and doctors and anybody we come in contact with -Janis, [she’s] a really smart little kid and she has a disability but nobody treats her like she’s, I don’t know what the right word is. People know there’s a lot going on up there and they don’t talk down to her. (Mother)
Although this mother stated that no one spoke down to her child in the hospital setting, she seemed to suggest that this may happen in other settings too. This is indicative of how children with IDs continue to be marginalized due to a dominant social discourse that constructs them to be different, less than, misunderstood or invisible. This type of stereotyping was addressed by other mothers as well as nurses and we found many instances where this stereotyping was challenged.
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Child participants did not describe feelings or experiences of stereotyping and repeatedly described liking the nurses, doctors and health centre staff. Most of the people there are, like are nice and stuff. I don’t know they just like, they were really cool. (Child)
Challenging stereotypes. The issue of stereotyping predominantly focused on stigma and negative beliefs and values about children with IDs. The three common labels or stereotypes that were most often described by both mothers and nurses included (1) children with IDs being unable to communicate and understand, (2) children with IDs being ‘difficult’ patients and (3) parents of a child with an ID being difficult or ‘bad’ parents. All three labels created moments of tension for mothers and nurses as well as opportunities for challenge and change. Children with IDs labelled as unable to communicate and understand. Communication with children with IDs can be challenging, particularly when one relies on the mainstream ways of communicating. Relying on dominant social and cultural beliefs, values and practices about communicating creates a mainstream discourse. There are, however, other ways to communicate that are not part of a dominant discourse such as sign language, pictures, eye contact, and so on. Children with IDs do communicate, just not always in the mainstream way. Unfortunately, it is a common practice in Western society to place responsibility on the individual who is ‘different’ to adapt to mainstream ways. This oppositional or binary construction of communication often leads to right and wrong ways of communicating and ultimately creates feelings of marginalization for children with IDs and their parents. The following examples exemplify how these binary opposites continued to be perpetuated as well as how they were challenged. Many of the nurses spoke about how they relied on parents to help them communicate with a child with IDs. [ . . . ] just deferring a lot of the questions back to the parents and in a lot of cases you can’t really ask the child. They’re either non-verbal or they can’t really explain what’s happening. (Nurse)
From the perspective of health-care professionals, this deferring to parents might be seen as a way of working with parents who are seen to be experts about their child’s health. However, many mothers in this study told us that they were frustrated when they were expected to speak on behalf of their child because it was disrespectful to their child. Mothers were concerned when health-care professionals assumed their child was non-verbal because this often led to a situation where they did not take time to get to know their child. One mother said: Kristy can talk [ . . . ] ask her first [ . . . ] don’t assume because they have an intellectual disability that they don’t understand. (Mother)
Nurses spoke about the fears they had about communicating with children with IDs. However, many nurses also spoke about how they believed communication and interactions with children with IDs were important. They provided examples of how they did not let their fears or stereotypes about children with IDs stop them from focusing on the child and how they were able to ‘communicate’ in creative ways. Some nurses described continuing to talk to the children even if they didn’t feel they understood them; others identified phrasing questions in a way that would allow either the child or the parent to answer.
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[ . . . ] engage the child in whatever form that makes them more comfortable during the experience, whether it’s touch or music or some distraction techniques or comfort items or the method that they communicate with. To find out exactly what they need to communicate whether it’s verbal, non-verbal, look at what’s the appropriate age level for communicating with them [ . . . ]. (Nurse)
Some nurses spoke about how they were aware of the negative beliefs and stereotypes that have been constructed around children with IDs, and this encouraged them to then challenge the stereotype. Children with IDs labelled as difficult patients. Mothers and nurses gave examples of how children with IDs were often labelled as difficult, bad or bothersome. This is an example of how labels about children with IDs can be socially constructed through hegemonic and negative beliefs and values. One nurse expressed her ‘surprise’ when an experience with an autistic child went ‘smoothly’, indicating her assumption that an autistic child would be difficult. [ . . . ] occasionally they really surprise you and they’ll go to sleep just fine like any other patient. They’ll be able to stay focused on the video that’s on the TV and be distracted by that [ . . . ] I definitely remember being totally surprised by a child with a disability who I wasn’t expecting to go so smoothly. (Nurse)
A mother also described her experience of feeling judged when her child ‘misbehaved’. People will look at him and either just think he’s misbehaving or that we’re bad parents and the comments you get even from qualified medical staff, you get the impression that [they] really don’t understand. (Mother)
It is important to deconstruct this mother’s comment about people not understanding her child’s behaviour. Children’s behaviour has been socially constructed for centuries. For example, a culturally constructed phrase ‘children should be seen and not heard’ is a statement implying that children who are not quiet are difficult or bad and is based on the assumption that all children are aware of this and able to show this behaviour. Whilst disruption by children is often seen to be bad, this mother is highlighting the importance of understanding how disruption by children with IDs is different. She is trying to shift the meaning of behaviour that is associated with children with IDs because she has clearly felt misunderstood and marginalized. It is also important to note that the judgement of bad in response to the child’s behaviour is directed at both the child and the parent. This mother is proposing a shift in meaning and the challenge is for others to view this situation differently. In other words, the stereotype or stigma needs to be challenged. Parents of children with IDs labelled as difficult or bad parents. Some nurses described how parents were often labelled as bad or neglectful for various reasons associated with their child’s ID. However, they also recognized that these negative labels were unfounded. The families that come through for dental procedures I find very interesting because kids that get dental surgery they often get labelled as being uneducated about oral hygiene [ . . . ] I have that insight because my son also came here for dental surgery a lot. So I’m really careful not to label because the parents feel very guilty about it. There’s all kinds of reasons why kids have oral hygiene issues, it’s not always because the parents have been negligent. (Nurse)
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This nurse cautions us to look below the surface and find out what is going on before making judgements about families and family members. Starting with negative labels and stereotypes can be damaging and hurtful. In this study, there were many examples of how parents were judged based on stereotypes about themselves as neglectful or bad. Other types of stereotypes attributed to parents in this study included being difficult or a ‘knowit-all’. One mother described how her attempt to inform emergency room staff about her child’s health-care needs was not appreciated. I found as soon as I started to talk and say what James’ meds were, what his seizure activity was, that he was non-verbal, I didn’t stop [ . . . ] and it was just like all of a sudden ‘well she’s a know-it-all’ and that’s not my intent, my intent was so that people knew James. (Mother)
The role of parents in the hospital setting was a confusing issue that was described by both mothers and nurses. Parents found that negotiating their respective responsibilities during an interaction involving care was often frustrating and filled with judgements and stereotypes. On one hand, we have seen that health-care professionals expected and relied on parents to talk for their children. However, in other circumstances, it was not appreciated when parents shared lots of information on behalf of their child. There were numerous examples given by mothers and nurses about how they had to challenge negative labels and stereotypes that interfered with communication and care. Although these experiences are disconcerting, they also provide us with deconstructed moments where we can see how relations of power operate through moments of conflict or tension. When stereotypes and labels interfere with effective care for children with IDs, we need to stop and reflect upon what is happening. Only then can we clearly recognize competing discourses and what the possibilities for change might be. As parents and nurses continue to recognize and collaboratively work through moments of tension where stereotypes and labelling interfere with effective care for children with IDs, opportunities for change will be recognized.
Discussion As other studies have found, our research suggests that children with IDs were often stigmatized during their experiences in hospital. However, our study was unique in that it examined the meaning of different perspectives and ultimately provided examples of how mothers and nurses were able to challenge certain diagnoses, labels and stereotypes in order to access services or to ensure safe and respectful care was given to children with IDs. With the use of feminist poststructuralism, it was easy to see that individual experiences and practices of nurses need to be contextualized within social and institutional discourses to understand how and why they interact with children with IDs in certain ways that address socially constructed stereotypes. Gibbs et al.’s (2008) study found that parents of adults with IDs were spoken to more often than the individual with an ID and that time was not taken to understand the adult through drawing or direct talking. McConkey and Truesdale (2000) found nurses were less confident working with patients with learning disabilities than they were with patients with physical disabilities because they did not know what to say and a research study conducted by Lewis and Stenfert-Kroese (2010: 360) identified that nurses believed that patients with IDs would be ‘difficult to nurse, more emotional, easily distressed, aggressive and less co-operative’. All of these studies support the notion that lack of information and misinformation can lead to discomfort and fear of the unknown. As
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our study demonstrates, although diagnoses were usually available, and some mothers reported there were situations in which these could be helpful for their child, stereotypes continued to be created through a lack of information and gross generalizations. Many studies have suggested that the best way to minimize stereotypes, stigma and labelling is through education and knowledge (Gibbs et al., 2008; Iacono and Davis, 2003; Matziou et al., 2009; Shanley and Guest, 1995; Tracy and Iacono, 2008; Webb, 2009). Tracy and Iacono (2008) found that medical students experienced increased comfort after training sessions focused on individuals with IDs, and Shanley and Guest (1995) identified that health-care professionals had more positive attitudes after ID training sessions. It is understandable that because nurses and other health-care professionals may only have skills and knowledge for communicating with mainstream children and adults, they are not well prepared to work with children with IDs. Our study also found that many nurses had not received education or training pertaining to children with IDs. This comes as no surprise as medical, nursing and clinical training is predominantly focused on mainstream children and adults with little focus on the other (Walsh et al., 2000). We were pleased, however, to find that a school of nursing in Ireland now offers a nursing stream that focuses on IDs (Dublin City University) (McKeon, 2009). In our study, although some nurses spoke about their fear and lack of training to work effectively with children with IDs, others challenged the stereotypes and labels by clearly articulating how they chose to question labels associated with an ID diagnosis. These nurses spoke about how they were creative and able to take the time to get to know the children and parents. These were the moments when children with IDs, their mothers and nurses experienced positive interactions. Many children in the study also spoke about how they enjoyed coming to the hospital because they liked the nurses. I talk to her about um my life [ . . . ] And then she um measures me and she weighs me [ . . . ] She’s awesome. (Child)
Conclusion It is imperative that we continue to question everyday practices between children with IDs, parents and nurses in the context of diagnoses, labels and stereotypes. This study has provided examples of how all three groups of participants experienced negative interactions; however, there were also examples of mothers and nurses who challenged the labels and stereotypes to create positive interactions and develop positive relations with children with IDs. In fact, all of the children interviewed spoke about how much they enjoyed being with the staff at the hospital. Whilst increased knowledge, education and understanding about children with IDs are needed, we cannot only focus on health-care providers. Starting with undergraduate programmes for health-care providers may be a good idea to begin with; however, this study also demonstrated how diagnoses, labels and stereotypes were intricately connected and entrenched in social and institutional discourses. Changing beliefs, values and practices within society at large as well as in the healthcare system needs to occur. Acknowledgements We would like to acknowledge the children, parents and nurses who shared their stories and experiences for this research as well as the IWK Health Centre. We would also like to acknowledge the Canadian Institute for Health Research and the Atlantic Health Promotion Research Centre for financial support of this research.
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Funding This research was supported through grant funding from the Canadian Institute for Health Research (FRN #106601) and the in-kind support of the Atlantic Health Promotion Research Centre.
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Walsh KK, Kastner T and Criscione T (1997) Characteristics of hospitalizations for people with developmental disabilities: utilization, costs, and impact of care coordination. American Journal on Mental Retardation 101: 505–520. Webb J (2009) Working with primary care practices to improve service delivery for people with learning disabilities – a pilot study. British Journal of Learning Disabilities 37: 221–227. Webber R, Bowers B and Bigby C (2010) Hospital experiences of older people with intellectual disability: responses of group home staff and family members. Journal of Intellectual & Developmental Disability 35(3): 155–164. Williams K, Leonard H, Tursan d’Espaignet E, et al. (2005) Hospitalisations from birth to 5 years in a population cohort of western Australian children with intellectual disability. Archives of Disease in Childhood 90: 1243–1248. Yam WK, Tse PW, Yu CM, et al. (2008) Medical issues among children and teenagers with Down syndrome in Hong Kong. Down Syndrome Research and Practice 12: 138–140.
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Diagnoses, labels and stereotypes: Supporting children with intellectual disabilities in the hospital Megan Aston
Journal of Intellectual Disabilities 2014, Vol. 18(4) 291–304 ª The Author(s) 2014 Reprints and permission: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/1744629514552151 jid.sagepub.com
School of Nursing Dalhousie University, Canada
Lynn Breau Glenrose Rehabilitation Hospital, Canada
Emily MacLeod School of Nursing Dalhousie University, Canada Date accepted: 8 August 2014
Abstract Children with intellectual disabilities (IDs) and their parents continue to experience stigma within health-care systems. Whilst some research studies have examined the stigma associated with children who have IDs, there continues to be a gap in understanding how the experiences of these children, their parents and nurses have been constructed personally, socially and institutionally. Face-to-face semi-structured interviews were conducted with 17 mothers, 12 nurses and 8 children. Feminist post-structuralism and discourse analysis were used to examine the experiences of children, parents and nurses with the intent of understanding the dominant taken-for-granted everyday practices as well as hidden or marginalized practices. Four main themes emerged, which included the theme of Diagnoses, Labels and Stereotypes, which will be discussed in this article. Participants provided rich detail about their experiences in the hospital and how they addressed and often attempted to challenge the stigma associated with children with IDs. Keywords children, intellectual disabilities, stigma, feminist post-structuralism, hospital
Corresponding author: Megan Aston, School of Nursing Dalhousie University, 5869 University Ave Halifax, Nova Scotia B3H 4R2, Canada. Email: [email protected]
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Social and institutional stereotypes and stigma associated with children with intellectual disabilities (IDs) often create uncomfortable and difficult situations for everyone involved. Whilst interactions of the general public as well as health-care providers with children with IDs may be well intentioned, the way in which IDs have been socially constructed through particular beliefs and values continues to marginalize children with IDs and their parents. In other words, because they are not part of ‘mainstream’ ways of acting, communicating and participating in society, they become seen as ‘other’ and are often marginalized. This creates many challenging situations for parents and their children with IDs, both in society and the health-care system. A number of researchers have identified that stigmatization of patients with IDs is prevalent in hospital settings (Gibbs et al., 2008; Matziou et al., 2009; Shanley and Guest, 2005). For example, two separate studies, completed in the United Kingdom and Greece, examined nursing attitudes towards individuals with disabilities and found less positive attitudes towards this population compared to the mainstream patients (Lewis and Stenfert-Kroese, 2010; Matziou et al., 2009). Matziou et al. (2009: 457) concluded that ‘our society, despite scientific progress and technological development, treats disabled children with prejudice, stigma and labelling’. Although this finding may not be particularly surprising, it is disheartening to realize that despite efforts by many advocate groups, government and education to include children with IDs, stigma still exists. What we found missing in our literature review was a lack of research that focused on the reasons why and how stigma still exists, particularly in the health-care system. Therefore, in order to better understand this phenomenon, we felt it was important to conduct a study that would examine the hospital experiences of children with IDs, their parents and nurses with a focus on relations of power. More specifically, this entailed a unique exploration of how their personal experiences had been constructed through social and institutional beliefs, values and practices. In our findings, we will present how various discourses associated with IDs were experienced in complex ways by all three participant groups.
Background Children with IDs experience higher levels of hospital stays and longer admissions than ‘typically developing children’ (Mahon and Kibirige, 2004; Williams et al., 2005). Williams et al. (2005) found in their comprehensive study of a 10-year cohort in Western Australia that, compared to children under the age of 5 years who had no IDs, those with an ID had both more hospital admissions (5.3 vs. 2.2) and spent more days in the hospital (29.9 days vs. 8.3 days). Children with Down syndrome have also been reported to average just under 25 days in hospital between birth and 3 years, and close to 56 days between birth and 10 years of age (Frid et al., 2002). Many people with IDs also have complex medical conditions that result in more intense medical care or extended admissions (Walsh et al., 1997) and often have co-morbid conditions such as feeding difficulties, enuresis or mobility challenges that require ongoing management in hospital, adding to their care needs (Baxter et al., 2006; Berg et al., 2007; Kwok and Cheung, 2007; Yam et al., 2008). Research pertaining to the experiences of children with IDs within the hospital setting is minimal. A systematic review of research pertaining to experiences of secondary health-care for children with IDs completed by Baker, et al. (2009) found only 13 studies in the United Kingdom which met their inclusion criteria. The research that has been conducted reports that there is higher reliance on caregivers, ineffective communication and lack of nurse education and knowledge. Brown and Guvenir (2008: 112) interviewed the parents or caregivers and the nursing staff of children with IDs and found that nurses reported feeling ‘apprehension’ because they did not ‘know what to expect’ and parents recounted feeling ‘helpless’ and ‘anxious’ because the health-care staff
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did not know their child or their needs. A strong reliance on the parent or caregiver was described by both the nursing staff and the caregivers themselves. Nurses expressed inability to manage their caseload if the parent was not present with the child. Further studies into stereotyping and stigmatization suggest that nurses may treat individuals with IDs differently. As mentioned above, a study completed by Lewis and Stenfert-Kroese (2010) surveyed 262 nurses to determine their attitudes towards individuals with IDs. Results suggest that nurses have less positive attitudes towards individuals with IDs and that they are more likely to ask the caregivers to remain on the unit to assist them with their care. Nurses asserted being less likely to explain treatment plans to individuals with IDs and reported that they did not feel they had sufficient skills or training to meet the needs of this population. Additional studies have identified feelings of discrimination and stigmatization by individuals with IDs and their families. Gibbs et al. (2008) completed focus group studies with adults with IDs and their parents or caregivers to determine their experiences in the hospital setting. Caregivers reported hearing negative comments about the individuals they cared for and parents described some uncertainty among health-care professionals about appropriate ways to treat and care for their child. Additional concerns were that nursing staff often underestimated the patient’s abilities and would do more for the patient than required, risking the individual losing necessary skills. Communication with individuals with IDs was also described as poor at times. However, some caregivers felt this was not necessarily specific to individuals with IDs but rather applicable to everyone. Webber et al. (2010) also completed a study of hospital experiences of older individuals with IDs in Australia and found similar results. Caregivers suggested that health-care professionals were uncomfortable with an individual’s additional needs; they felt that health-care professionals had very minimal knowledge about disabilities and, as a result, did not respond to the patient appropriately. Assumptions were also made about an individual’s ability to understand treatment plans or medical information. In some instances, health-care professionals were said to have ‘spoken over’ the individual, whilst at other times assumptions were made that individuals with IDs could not understand something when they actually could. Research studies have identified that the care of children with IDs is physically, mentally and emotionally complex. In particular, a lack of education and understanding on how to care for children with IDs as well as stigma, stereotypes and fear were identified as factors that lead to misunderstandings and ultimately poor care. Little research has been conducted that examined these complexities from a critical social perspective that included a combination of personal, social and institutional discourses. Therefore, this study examined the personal experiences of children with IDs, their parents and nurses who cared for them.
Purpose The purpose of the study was to better understand how children with IDs, their parents and nurses experience care whilst interacting with each other during the child’s hospital visits.
Methodology Feminist post-structuralism Feminist post-structuralism was used to examine the hospital experiences of children with IDs, their parents and nurses who cared for them (Butler, 1992; Cheek, 2000; Foucault, 1983). In
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particular, this methodology enabled us to understand how participants negotiated institutionally and socially constructed everyday practices associated with IDs and children. It also supported a deeper analysis of stereotypes and stigma by looking at how relations of power were experienced by participants. A feminist methodology was used to look for moments (as described by participants) that had been informed by social constructs of (dis)abilities, culture, gender, race, class or any other socially constructed position that was important to them. Discourse analysis (Butler, 1992; Cheek, 2000; Foucault, 1983) enabled us to look at specific words, meanings and personal beliefs and values that participants used to describe their experiences and then to analyse how social and institutional beliefs and values affected these experiences. For example, hospital practices that had been influenced by broader medical discourses about care ultimately affected personal practices between nurses, children with IDs and their parents. This use of discourse analysis not only enabled us to identify moments of tension, differences and similarities between different beliefs, values and practices but also provided a unique understanding of relations of power. Foucault (1983) stressed that power cannot be understood to be a simple binary. In other words, power is complex and relational, and individuals are constantly negotiating their power. People are not powerless and do not experience power as an outside force imposed by institutions or others. Instead, feminist post-structuralists discuss the importance of focusing on how individuals think about, challenge and negotiate moments where power is affecting their experience. A person’s ‘subjectivity’ positions him/her socially and contextually. For example, a person may experience herself as female, disabled and belonging to a certain race or age based on social norms. These social constructions of the self will then influence their experience and how they react, resist or agree with different practices. They negotiate through their own ‘agency’ where we can see how they may question or accept certain interactions, beliefs and values. Power is no longer seen as a simple construct that immobilizes people into static relationships. There is potential to move and change the status quo and ‘normal’ everyday practices by identifying and questioning what people do and how they do it. Power comes from within people and is negotiated through everyday practices. Power does not simply act upon people from outside forces. This study looked to identify these everyday moments and experiences of those living with IDs and those supporting and working with children with IDs.
Recruitment The research study took place over a 2-year period (from March 2011 to May 2013), with the majority of the interviews taking place in the first year. Ethical approval was obtained through the local paediatric hospital’s research ethics board prior to data collection to ensure the rights and protections of our study participants. Participants were recruited through the hospital as well as local support agencies. Thirty-seven participants agreed to participate in the study, and informed consent was obtained from all the participants prior to their participation. Parent authorization was received from the parent or the guardian of the child participants and child assent was obtained as well. Twelve nurse participants were recruited through study posters situated throughout the health centre and hosted on the internal health centre website. All nurses met the inclusion criteria of having worked with a child with an ID at the health centre during the past 2 years as well as being able to speak, read and understand English. Seventeen parents of children with IDs were recruited through mail-out packages as well as posters and postcards distributed throughout the health centre and other local support organizations.
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Although both mothers and fathers were invited to take part in the study, all participants were mothers and met the inclusion criteria that included the ability to speak, read and understand English and having a child with an ID who had obtained care at the health centre during the past 2 years. Eight child participants were recruited through mail-out packages and recruitment posters and postcards throughout the health centre and local support organizations. All children met the inclusion criteria of having a mental age of at least 7 years (as reported by a parent or guardian) having obtained care at the health centre during the past 2 years and being able to speak and understand English. Child participants had a variety of IDs, including autism, fetal alcohol syndrome and global developmental delay.
Data collection Semi-structured audiotaped interviews were completed with all participants. Interviews with children were conducted in the presence of mothers or caregivers and lasted approximately 30 minutes. The interviewer spoke directly with the children and asked them open-ended and closed-ended questions about their hospital experiences. Some children provided answers in a yes or no fashion and others offered more details and description. Some mothers and caregivers gently prompted their children throughout the interview to support their answers, but they did not influence their responses. Mothers and nurses were interviewed individually for about 60–90 minutes and were asked open-ended questions. For example, mothers were asked to describe their experiences whilst in the hospital with their children and nurses were asked to describe what it was like caring for children with IDs. Probes were used to dig deep and encourage participants to share what certain interactions meant to them and at times, how they felt. Interviews were transcribed verbatim by a transcriptionist who signed a confidentiality form. Any names and identifying information were removed from the transcripts at this time, and pseudonyms were used. All participants were given the choice of a gift certificate to a local restaurant or gift shop to thank them for their time, and mothers and caregivers were reimbursed for parking.
Data analysis Analysis took place throughout the data collection phase in order to ensure self-reflection and identify any necessary changes to interview questions or study protocol. Interview transcripts were analysed through a dual process of discourse analysis and thematic coding. However, discourse analysis was the central analysis process. Thematic coding. Each transcript was initially coded by the research coordinator using Nvivo 8 software. After a review of the first few interview transcripts, a list of codes were developed, which identified emerging themes. These codes were not finalized but rather evolved during the analysis process, merging and expanding throughout the course of the analysis. The thematic coding helped to facilitate and contextualize the discourse analysis process. Discourse analysis. Discourse analysis was the main method for data analysis, augmented by thematic analysis. In keeping with this methodology, each individual transcript was meticulously reviewed in order to understand how participants’ experiences were embedded in and influenced by social and institutional constructs. By closely examining these moments, we were able to identify participants’ unique beliefs and values and how they work within or against the institutional and social value systems around them. Participants’ beliefs, values and practices were
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initially examined on an individual basis and then the analysis took place across all transcripts by identifying common themes for further and more in-depth review of personal, social and institutional discourses. The first few transcripts were reviewed separately by each member of the research team and then discussed in order to identify emerging issues, discourses and relations of power. Subsequent transcripts were analysed by the research coordinator and then analysed using discourse analysis by the principal investigator. The research team met periodically to discuss emerging themes and then again at the end to agree upon final analysis. The following four main themes emerged: (1) diagnoses, labels and stereotypes; (2) building relationships; (3) reducing stigma through education and knowledge; (4) ID information sharing. In this article, we will discuss diagnoses, labels and stereotypes.
Findings and interpretations As we began analysing the transcripts, it quickly became evident that mothers and nurses wanted to talk about the stigma of ID and how it affected their experiences in the hospital. How stigma was experienced was woven into the stories told by the mothers about navigating the health-care system and advocating for their child. Stigma was also evident when the nurses spoke about their practice of advocating or negotiating care with the children and their parents. Whilst the children spoke about being scared of certain procedures or liking other procedures, overall they were very positive about coming to the hospital and liked the nurses and doctors. All mothers and nurses told us that they wanted to do the best thing possible for the child and shared a variety of success stories and challenges. By paying close attention to words and experiences of the participants and the meaning attributed to these words and experiences, we were able to begin to understand how relations of power affected them.
Diagnoses, labels and stereotypes The terms diagnoses, labels and stereotypes emerged as important concepts that deeply affected the experiences of all participants. By paying close attention to the language and meaning of these words, that have been socially and institutionally constructed, as well as how and when they were used, we were able to understand how access to services and relations between children, parents, nurses and other health-care professionals were experienced. The meaning of each of these words shifted and overlapped at times, depending on the context and experience of the participants. In this study, the word ‘diagnosis’ was predominantly understood to be a medical term that had been institutionally constructed. According to the participants, diagnoses were instrumental in guiding care for the children and provided insights into prognosis, treatment and support for both health-care professionals and parents. Stereotypes about children with IDs also significantly affected the care that the children received in the hospital. In this study, stereotypes were used to reflect a set of generalized beliefs associated with children with IDs. We also found that the term ‘label’ was often used interchangeably by both mothers and nurses with the terms ‘diagnosis’ and ‘stereotype’. It became evident that that the word label shifted meaning between diagnosis and stereotype, depending on the context and situation in which the participants were referring. The intent or meaning of all three words shifted between positive, negative and neutral, depending on the context. The following are the examples of how participants experienced the shifting and conflicting meanings of these three words through their experience in the hospital.
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Diagnoses and labels help negotiate care. Many mothers believed that diagnoses were essential to their child’s care to help them access services and support, and they spoke about how they used diagnoses to their advantage as they negotiated care for their child. It became evident that diagnoses could refer to more than just physical symptoms of their child and become a label that shifted meaning into a more social context that could benefit their child. The term label was used in place of, or interchangeably with, diagnosis when gaining access to care. So whether he has that label or not I think it’s actually getting him further than if he didn’t. (Mother)
Mothers also described diagnoses as potentially allowing individuals who worked with their child to better understand their child’s needs and tendencies. I’ve often wondered if he had a different diagnosis, a more clear diagnosis at that time [it] could have helped explain to them you just got to take it slow [ . . . ] and to give them some more guidance. (Mother)
Whilst using diagnoses as a type of label was common practice within the health-care discourse and often provided mothers with an ‘in’ to specialized services, some mothers experienced this dominant discourse as unsupportive. Although receiving a common diagnosis such as autism often opened the door to a myriad of services and support, a diagnosis of a rare condition did not have the same results for some mothers and children with IDs because support was contingent on specific, and often common, diagnoses. For us, we haven’t really gotten a lot of services. I find if Lucy was autistic she would get more but I find I have to really dig deep to get services here for her because she kind of falls through the cracks [ . . . ] so I just wish there was more for our specific needs, like for chromosome disorder children there isn’t a lot [ . . . ]. (Mother)
This mother has interpreted the system as creating hierarchies between diagnoses. Because her child had been diagnosed with a chromosomal disorder she could not access as many services as a child diagnosed with autism. Through discourse analysis, we can see how institutional and social constructions of different diagnoses are informed by relations of power that have created programmes and services for different diagnoses and not others. The mothers in this study were aware of this construction and the power that different diagnoses held. Mothers knew that a diagnosis was more than just identifying signs and symptoms. The term label and examples of how mothers used diagnoses to access services show how they were aware of the need to institutionally and socially label their children. Another parent identified that her son lost services that were helpful to him because his original diagnosis of autism was later removed. Unfortunately because the camp is built around the criteria that you have autism, when he lost his diagnosis of autism he lost his privilege of going to camp. (Mother)
Mothers in this study were keenly aware of the power of diagnoses and how this type of labelling was needed within the health institution as well as outside to access programming. In these cases, diagnosis meant more than understanding physical and mental aspects of a child and was used to describe and position the child in a way that would help him/her gain access to services and supports.
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That’s one sad thing about this whole necessity of labels. There’s a necessity for it in order to access resources and what happens is [ . . . ] some opportunities that would benefit somebody who doesn’t have that specific label just aren’t open to them because they don’t have that label. (Mother)
When labels shift to stereotyping. When the term label or labelling was more closely aligned with stereotyping, it predominantly carried a negative connotation. Labelling often involved making assumptions about certain attributes a child may or may not have based on a particular diagnosis. For example, some children in the study were given a diagnosis of autism and ‘labelled’ or ‘stereotyped’ as a ‘problem child’. Several mothers provided examples of negative assumptions that were made about their child’s abilities and quality of life based only on their diagnosis. These mothers experienced this practice as oppressive and unsupportive stereotyping. I mean James was healthy and really bright and he was interactive, very personable [and] we were told not to have any hope because, just because he past his first birthday didn’t mean he was going to make it to his second birthday, literally almost every visit [ . . . ] which was really upsetting because we could see how well he was doing and it was really hard to be hopeful because every visit you’re told [ . . . ] ‘well you’re seeing something we’re not seeing and you’re expecting too much and you’re not going to get it’. (Mother)
Another mother identified feeling pressured to have an abortion by doctors because there was a significant chance that her child would be born with Down syndrome. This mother chose not to have an abortion. At 24 weeks I was even encouraged to have an abortion again and it got to the point, after the second ultrasound I didn’t want to go back and my husband said ‘look we’ll go back for this other one’. I said, ‘I don’t know what the point is because I no longer know what the point of these ultrasounds are for’. They keep telling us there’s a good possibility she has Down syndrome and abortion is available [ . . . ]. (Mother)
Both of these examples show how mothers disagreed with the generalizations or stereotypes that a diagnosis carried. These mothers challenged the expert opinion, which was likely not an easy thing to do. Mothers in this study were aware of the pervasive negative social stereotypes about children with IDs. Another example demonstrates how expectations or stereotypes about children with IDs are often at the forefront of people’s minds. One mother commented that she was pleased that her child was not ‘spoken down to’ by health-care professionals, suggesting that this might be a common occurrence or expectation in other settings. Not here, not at all and what I appreciate too about the staff here, nurses and doctors and anybody we come in contact with -Janis, [she’s] a really smart little kid and she has a disability but nobody treats her like she’s, I don’t know what the right word is. People know there’s a lot going on up there and they don’t talk down to her. (Mother)
Although this mother stated that no one spoke down to her child in the hospital setting, she seemed to suggest that this may happen in other settings too. This is indicative of how children with IDs continue to be marginalized due to a dominant social discourse that constructs them to be different, less than, misunderstood or invisible. This type of stereotyping was addressed by other mothers as well as nurses and we found many instances where this stereotyping was challenged.
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Child participants did not describe feelings or experiences of stereotyping and repeatedly described liking the nurses, doctors and health centre staff. Most of the people there are, like are nice and stuff. I don’t know they just like, they were really cool. (Child)
Challenging stereotypes. The issue of stereotyping predominantly focused on stigma and negative beliefs and values about children with IDs. The three common labels or stereotypes that were most often described by both mothers and nurses included (1) children with IDs being unable to communicate and understand, (2) children with IDs being ‘difficult’ patients and (3) parents of a child with an ID being difficult or ‘bad’ parents. All three labels created moments of tension for mothers and nurses as well as opportunities for challenge and change. Children with IDs labelled as unable to communicate and understand. Communication with children with IDs can be challenging, particularly when one relies on the mainstream ways of communicating. Relying on dominant social and cultural beliefs, values and practices about communicating creates a mainstream discourse. There are, however, other ways to communicate that are not part of a dominant discourse such as sign language, pictures, eye contact, and so on. Children with IDs do communicate, just not always in the mainstream way. Unfortunately, it is a common practice in Western society to place responsibility on the individual who is ‘different’ to adapt to mainstream ways. This oppositional or binary construction of communication often leads to right and wrong ways of communicating and ultimately creates feelings of marginalization for children with IDs and their parents. The following examples exemplify how these binary opposites continued to be perpetuated as well as how they were challenged. Many of the nurses spoke about how they relied on parents to help them communicate with a child with IDs. [ . . . ] just deferring a lot of the questions back to the parents and in a lot of cases you can’t really ask the child. They’re either non-verbal or they can’t really explain what’s happening. (Nurse)
From the perspective of health-care professionals, this deferring to parents might be seen as a way of working with parents who are seen to be experts about their child’s health. However, many mothers in this study told us that they were frustrated when they were expected to speak on behalf of their child because it was disrespectful to their child. Mothers were concerned when health-care professionals assumed their child was non-verbal because this often led to a situation where they did not take time to get to know their child. One mother said: Kristy can talk [ . . . ] ask her first [ . . . ] don’t assume because they have an intellectual disability that they don’t understand. (Mother)
Nurses spoke about the fears they had about communicating with children with IDs. However, many nurses also spoke about how they believed communication and interactions with children with IDs were important. They provided examples of how they did not let their fears or stereotypes about children with IDs stop them from focusing on the child and how they were able to ‘communicate’ in creative ways. Some nurses described continuing to talk to the children even if they didn’t feel they understood them; others identified phrasing questions in a way that would allow either the child or the parent to answer.
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[ . . . ] engage the child in whatever form that makes them more comfortable during the experience, whether it’s touch or music or some distraction techniques or comfort items or the method that they communicate with. To find out exactly what they need to communicate whether it’s verbal, non-verbal, look at what’s the appropriate age level for communicating with them [ . . . ]. (Nurse)
Some nurses spoke about how they were aware of the negative beliefs and stereotypes that have been constructed around children with IDs, and this encouraged them to then challenge the stereotype. Children with IDs labelled as difficult patients. Mothers and nurses gave examples of how children with IDs were often labelled as difficult, bad or bothersome. This is an example of how labels about children with IDs can be socially constructed through hegemonic and negative beliefs and values. One nurse expressed her ‘surprise’ when an experience with an autistic child went ‘smoothly’, indicating her assumption that an autistic child would be difficult. [ . . . ] occasionally they really surprise you and they’ll go to sleep just fine like any other patient. They’ll be able to stay focused on the video that’s on the TV and be distracted by that [ . . . ] I definitely remember being totally surprised by a child with a disability who I wasn’t expecting to go so smoothly. (Nurse)
A mother also described her experience of feeling judged when her child ‘misbehaved’. People will look at him and either just think he’s misbehaving or that we’re bad parents and the comments you get even from qualified medical staff, you get the impression that [they] really don’t understand. (Mother)
It is important to deconstruct this mother’s comment about people not understanding her child’s behaviour. Children’s behaviour has been socially constructed for centuries. For example, a culturally constructed phrase ‘children should be seen and not heard’ is a statement implying that children who are not quiet are difficult or bad and is based on the assumption that all children are aware of this and able to show this behaviour. Whilst disruption by children is often seen to be bad, this mother is highlighting the importance of understanding how disruption by children with IDs is different. She is trying to shift the meaning of behaviour that is associated with children with IDs because she has clearly felt misunderstood and marginalized. It is also important to note that the judgement of bad in response to the child’s behaviour is directed at both the child and the parent. This mother is proposing a shift in meaning and the challenge is for others to view this situation differently. In other words, the stereotype or stigma needs to be challenged. Parents of children with IDs labelled as difficult or bad parents. Some nurses described how parents were often labelled as bad or neglectful for various reasons associated with their child’s ID. However, they also recognized that these negative labels were unfounded. The families that come through for dental procedures I find very interesting because kids that get dental surgery they often get labelled as being uneducated about oral hygiene [ . . . ] I have that insight because my son also came here for dental surgery a lot. So I’m really careful not to label because the parents feel very guilty about it. There’s all kinds of reasons why kids have oral hygiene issues, it’s not always because the parents have been negligent. (Nurse)
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This nurse cautions us to look below the surface and find out what is going on before making judgements about families and family members. Starting with negative labels and stereotypes can be damaging and hurtful. In this study, there were many examples of how parents were judged based on stereotypes about themselves as neglectful or bad. Other types of stereotypes attributed to parents in this study included being difficult or a ‘knowit-all’. One mother described how her attempt to inform emergency room staff about her child’s health-care needs was not appreciated. I found as soon as I started to talk and say what James’ meds were, what his seizure activity was, that he was non-verbal, I didn’t stop [ . . . ] and it was just like all of a sudden ‘well she’s a know-it-all’ and that’s not my intent, my intent was so that people knew James. (Mother)
The role of parents in the hospital setting was a confusing issue that was described by both mothers and nurses. Parents found that negotiating their respective responsibilities during an interaction involving care was often frustrating and filled with judgements and stereotypes. On one hand, we have seen that health-care professionals expected and relied on parents to talk for their children. However, in other circumstances, it was not appreciated when parents shared lots of information on behalf of their child. There were numerous examples given by mothers and nurses about how they had to challenge negative labels and stereotypes that interfered with communication and care. Although these experiences are disconcerting, they also provide us with deconstructed moments where we can see how relations of power operate through moments of conflict or tension. When stereotypes and labels interfere with effective care for children with IDs, we need to stop and reflect upon what is happening. Only then can we clearly recognize competing discourses and what the possibilities for change might be. As parents and nurses continue to recognize and collaboratively work through moments of tension where stereotypes and labelling interfere with effective care for children with IDs, opportunities for change will be recognized.
Discussion As other studies have found, our research suggests that children with IDs were often stigmatized during their experiences in hospital. However, our study was unique in that it examined the meaning of different perspectives and ultimately provided examples of how mothers and nurses were able to challenge certain diagnoses, labels and stereotypes in order to access services or to ensure safe and respectful care was given to children with IDs. With the use of feminist poststructuralism, it was easy to see that individual experiences and practices of nurses need to be contextualized within social and institutional discourses to understand how and why they interact with children with IDs in certain ways that address socially constructed stereotypes. Gibbs et al.’s (2008) study found that parents of adults with IDs were spoken to more often than the individual with an ID and that time was not taken to understand the adult through drawing or direct talking. McConkey and Truesdale (2000) found nurses were less confident working with patients with learning disabilities than they were with patients with physical disabilities because they did not know what to say and a research study conducted by Lewis and Stenfert-Kroese (2010: 360) identified that nurses believed that patients with IDs would be ‘difficult to nurse, more emotional, easily distressed, aggressive and less co-operative’. All of these studies support the notion that lack of information and misinformation can lead to discomfort and fear of the unknown. As
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our study demonstrates, although diagnoses were usually available, and some mothers reported there were situations in which these could be helpful for their child, stereotypes continued to be created through a lack of information and gross generalizations. Many studies have suggested that the best way to minimize stereotypes, stigma and labelling is through education and knowledge (Gibbs et al., 2008; Iacono and Davis, 2003; Matziou et al., 2009; Shanley and Guest, 1995; Tracy and Iacono, 2008; Webb, 2009). Tracy and Iacono (2008) found that medical students experienced increased comfort after training sessions focused on individuals with IDs, and Shanley and Guest (1995) identified that health-care professionals had more positive attitudes after ID training sessions. It is understandable that because nurses and other health-care professionals may only have skills and knowledge for communicating with mainstream children and adults, they are not well prepared to work with children with IDs. Our study also found that many nurses had not received education or training pertaining to children with IDs. This comes as no surprise as medical, nursing and clinical training is predominantly focused on mainstream children and adults with little focus on the other (Walsh et al., 2000). We were pleased, however, to find that a school of nursing in Ireland now offers a nursing stream that focuses on IDs (Dublin City University) (McKeon, 2009). In our study, although some nurses spoke about their fear and lack of training to work effectively with children with IDs, others challenged the stereotypes and labels by clearly articulating how they chose to question labels associated with an ID diagnosis. These nurses spoke about how they were creative and able to take the time to get to know the children and parents. These were the moments when children with IDs, their mothers and nurses experienced positive interactions. Many children in the study also spoke about how they enjoyed coming to the hospital because they liked the nurses. I talk to her about um my life [ . . . ] And then she um measures me and she weighs me [ . . . ] She’s awesome. (Child)
Conclusion It is imperative that we continue to question everyday practices between children with IDs, parents and nurses in the context of diagnoses, labels and stereotypes. This study has provided examples of how all three groups of participants experienced negative interactions; however, there were also examples of mothers and nurses who challenged the labels and stereotypes to create positive interactions and develop positive relations with children with IDs. In fact, all of the children interviewed spoke about how much they enjoyed being with the staff at the hospital. Whilst increased knowledge, education and understanding about children with IDs are needed, we cannot only focus on health-care providers. Starting with undergraduate programmes for health-care providers may be a good idea to begin with; however, this study also demonstrated how diagnoses, labels and stereotypes were intricately connected and entrenched in social and institutional discourses. Changing beliefs, values and practices within society at large as well as in the healthcare system needs to occur. Acknowledgements We would like to acknowledge the children, parents and nurses who shared their stories and experiences for this research as well as the IWK Health Centre. We would also like to acknowledge the Canadian Institute for Health Research and the Atlantic Health Promotion Research Centre for financial support of this research.
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Funding This research was supported through grant funding from the Canadian Institute for Health Research (FRN #106601) and the in-kind support of the Atlantic Health Promotion Research Centre.
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