Published for the British Institute of Learning Disabilities

Journal of Applied Research in Intellectual Disabilities 2015, 28, 111–120

Caregiver Experiences of Supporting Adults with Intellectual Disabilities in Pain Laura Findlay*, Amanda C. de C. Williams†, Sandra Baum‡ and Katrina Scior† *Specialist Healthcare Team, Service for People who have a Learning Disability, South Essex Partnership University NHS Foundation Trust, Twinwoods Resource Centre, Clapham, Bedfordshire, UK; †Research Department of Clinical, Educational and Health Psychology, University College London, London, UK; ‡Bromley Community Team for People with Learning Disabilities, Oxleas NHS Trust, London, UK

Accepted for publication 3 December 2013

Background Caregivers have an intimate knowledge of the individuals they care for and are therefore an important source of information on pain experiences. They are often relied upon to recognize pain-related behaviours and report them, but little is known as to how they experience their role. Methods Information was collected from 11 caregivers using semi-structured interviews about their experiences of caring for adults with intellectual disabilities who were suspected or definitely in pain. Transcripts were analysed using Interpretative Phenomenological Analysis. Results Six superordinate themes were identified from participants’ experiences: suffering in silence; searching for meaning to explain the complaint; knowledge and

skills needed to recognize and manage pain; perceptions of the pain experience; acting to try and reduce pain; and the emotional impact of pain. Conclusions There seems an art to detect pain using existing skills and knowledge of the individual’s ways of expressing pain. Despite best efforts, recognizing and treating pain was experienced as complex and ambiguous. Some caregivers described a negative emotional impact and dissatisfaction with the management of pain by health care services.


Caregiver experiences

Self-report of pain by people with intellectual disabilities is uncommon due to cognitive and communication impairments (Hadjistavropoulos et al. 2001; Bottos & Chambers 2006) and having fewer words in their vocabulary to describe pain (Beacroft & Dodd 2011). Caregivers are central to recognizing behaviours indicative of pain and reporting these to the relevant health professionals. They are an important source of information on the experience of pain because of an intimate knowledge of those they care for (Bottos & Chambers 2006) and because of their regular contact with service users. Health professionals often rely on caregivers attending consultations to provide information which helps assess and diagnose pain. Therefore, it is of great importance to consider caregivers’ perceptions and experiences of caring for people in pain.

Experiences of caring for people with intellectual disabilities in pain have been investigated in two previous studies. One involved interviewing eight nurses about a situation in which they thought a client was in pain (Donovan 2002). This highlighted the importance of a caring relationship and sharing in the person’s feelings, recognizing changes in verbal and non-verbal behaviour, including both conventional and ‘nonconventional’ communications of pain, searching for meaning in behaviour and negotiating with other health professionals. Interviews with eight parents about their experiences of managing pain in their adult offspring with intellectual disabilities (Clarke et al. 2008) showed that parents looked for visible signs indicating possible pain and used a process of trial and error to work out if they were in pain. Parents reported negative

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Keywords: caregivers, experience, intellectual disabilities, pain, parents, service user, staff


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psychological effects on themselves and often felt they could do little but ‘bearing it’.

Caregiver perceptions of pain Caregivers are typically involved in monitoring symptoms of illness and reactions to medication, acting as gatekeepers to health services, and advocating during encounters with health professionals (Langan et al. 1994). Successfully carrying out these roles can be fraught with challenges. Firstly, research has shown that often caregivers of people with intellectual disabilities do not identify health needs (Wilson & Haire 1990; Hogg 2001) and they have little knowledge of specific health needs of this population (Carnaby & Cambridge 2006). Turk et al.(2012) noted in their interviews with 59 carers and 98 adults with intellectual disabilities that health problems that were reported more commonly by the latter rather than their carers have not been identified as significant issues in research to date, for example, headaches/migraines and allergies. Caregivers also sometimes lack long-term knowledge of an individual’s health conditions and characteristic behaviours (Martin 2003). Secondly, caregivers were reluctant to seek healthcare if they thought the complaint was ‘trivial’ or the person would not benefit from the intervention (Alborz et al. 2005). Clarke et al. (2008) found that parents of adults with intellectual disabilities only rarely perceived their son or daughter to be in pain, despite them having diagnosed associated health problems and therefore an increased likelihood of pain. The authors suggested that pain may not have been detected by parents due to an overreliance on self-report, a lack of awareness of pain and lack of training, and an underestimation of health needs faced. Observations of others’ pain experience are affected by individual factors such as the observer’s background or prior experience with pain (Hadjistavropoulos et al. 2001). Furthermore, there is a widespread but inaccurate belief among carers and health professionals that people with intellectual disabilities have a higher pain threshold than members of the general population (Mencap 2007; Beacroft & Dodd 2010). Such beliefs will clearly affect how one responds to pain. So far, there have been two attempts to improve how caregivers recognize and manage pain. A training pack was created by Beacroft & Dodd (2010) to increase support staff ability to recognize and manage pain. A manual of practical guidance has also been produced for caregivers to support them in teaching people

with intellectual disabilities to manage chronic pain (McManus & McGuire 2010). These attempts are encouraging as they try to impart knowledge, change attitudes and offer guidance for everyday practice.

Objectives The present study attempted to explore in-depth, the experiences of formal and informal caregivers (i.e. paid staff and parents) supporting adults with intellectual disabilities who were possibly and/or definitely in pain. Specifically, we aimed to investigate: (i) how caregivers respond to possible or actual pain; (ii) if and how they recognize pain and (iii) what emotional impact these processes have on caregivers.

Materials and methods Participants Eleven participants (seven female and four male) took part in the study. They met the study’s inclusion criteria of being over 18 years; and of acting as the primary support for a person with intellectual disabilities (i.e. where the person with an intellectual disability was living in the family home, their parents as informal caregivers were invited to be interviewed; where they were living with staff support, formal carers were invited). Participants ranged in age from 29 to 67. The five formal caregiver participants had been working with this population for 1–8 years. Three worked in residential homes for both males and females with moderate to severe intellectual disabilities or additional health needs, and two in supported living, working with people with mild to moderate intellectual disabilities (one female only home, one mixed gender). Five of the six parent participants had daughters aged between 26 and 47 who did not communicate verbally. All but one of these daughters lived in the family home (two with Down’s syndrome, one with autism), with one daughter living in supported living. One parent had sons who did communicate verbally and lived at home. Each interview was transcribed and analysed upon completion, and data saturation was reached following 11 interviews, hence recruitment was halted at this point.

Interview schedule A semi-structured interview schedule was designed by the researchers, and refined in response to two pilot interviews (the data for which was not included in the © 2014 John Wiley & Sons Ltd, 28, 111–120

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final sample). Caregivers were first invited to recall and reflect in detail on two particular episodes they had experienced of pains that were easily recognized and not so easily recognized. They were also asked questions related to their experiences of caring for people in pain.


Table 1. Themes are illustrated with interview extracts, with FC denoting formal carers and IC informal carers. Text omitted from quotes is denoted by (. . .); ‘Q’ refers to clarifying questions asked by the interviewer. The first two superordinate themes addressed the question how caregivers respond to possible or actual pain.

Procedure Parents were recruited at a local carers group. Of six who expressed an initial interest, five agreed to be interviewed. Formal caregivers were invited, while the first author visited care homes for other non-clinical purposes; of six approached, five agreed to be interviewed. Interviews took place at participants’ home or work place depending on their preference. Interviews lasted 45–75 min. Ethical approval was obtained from the ethics committee of the Health Trust hosting the study. A summary of results was sent to all participants.

Data analysis Interviews were audiotaped and transcribed, and data were analysed using Interpretative Phenomenological Analysis (IPA; Smith et al. 2009). IPA aims to capture and explore how participants make sense of their personal and social worlds, emphasizing the meanings assigned to experiences (Smith & Osborn 2003). IPA was suitable because it offered a detailed first person account of participants’ experiences. The analysis involved coding transcripts, clustering statements into the themes invoked and writing a general statement to describe each theme, writing lists of themes with extracts and checking their fit, identifying themes shared by all participants, and finally developing and tabulating superordinate themes (Smith & Osborn 2003; Willig 2007; Biggerstaff & Thompson 2008). Guidelines to ensure the quality of the data were used (Barker & Pistrang 2005), which included reflecting back responses during interviews; keeping a research diary with reflections on interviews and memos to reflect category development. Credibility checks were carried out by a researcher experienced in the use of IPA with adults with ID for quality control purposes.

Results The results provide a summary of participants’ experiences under six superordinate themes, see © 2014 John Wiley & Sons Ltd, 28, 111–120

Superordinate theme 1: suffering in silence Three themes describe experiences of pain being invisible. Nine caregivers described general difficulties in recognizing pain in this population, and recalled incidents where they had not recognized that the person with intellectual disabilities had a health problem which likely caused significant pain. He had a hernia. And you couldn’t tell whether he was in pain or not. . .you never knew quite how much pain he was in. (FC3) Nine caregivers reported numerous occasions when the person had not complained when in pain. They seemed to expect that people would complain and were surprised when they did not. Because people think that he’s able to express himself, that he can come and tell us. And that’s what I get, well what he should tell us. But he doesn’t. (IC8) Some caregivers suggested reasons why pain may not be voiced, including being afraid of doctors and not knowing the appropriate language to describe pain. With X he registers pains, but I’m not quite sure he knows how to explain it. (FC3) Three caregivers described perceiving the person as deliberately hiding their pain. They can hide pain. X can hide pain. Even when they have pain they don’t want you to know. . . (Q) Yeah she can hide, because as I said, I mentioned the other day when you were there that she had this boil in her armpit, and she hide it so long and I didn’t even know. . .(Q) Coz she didn’t want me to see. (IC10) One informal caregiver felt that people with ID have difficulty in expressing their feelings, but that others misinterpret this as ‘hiding pain’.

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Table 1 A list of themes and superordinate themes

Superordinate themes


Number of participants who endorsed theme

Suffering in silence

Not recognizing pain Not voicing pain Hiding pain Verbal complaints of pain Communicating pain non-verbally Communicating with the person about pain Monitoring changes Noticing signs of pain Being a detective The individuality of pain expression Staff support, knowledge and consistency Awareness of risks of missing pain Training and education Confidence in recognizing pain Questioning the genuineness of pain Coping, pain threshold and tolerance Understandings of pain Mediating with healthcare professionals Involving parents Thinking/talking for the person Trying medical and alternative solutions Comfort Impact on the ‘sufferer’ Impact on the caregiver

9 9 4 7 6 10 9 9 6 6 3 2 2 8 3 10 6 10 3 4 10 3 3 7

Trying to understand

Knowledge and skills needed to recognize and manage pain

Perceptions of the pain experience Trying to reduce pain

Emotional impact of pain

Superordinate theme 2: trying to understand the complaint Seven themes illustrate the process by which caregivers and the person themselves come to a shared understanding that something is not right. Seven caregivers described verbal complaints of pain by the person, which some alluded to as a positive event. I think this is the main point, actually, because she can explain, she can. . .so it’s good because she can explain. (FC2) Six caregivers recalled the person communicating pain through non-verbal means including gestures and touch: When the foot is hurting her probably she will feel discomfort with the shoes, she’ll remove the shoes and maybe want another pair. . .. So these are all signs telling me “I am not comfortable in that shoe, I don’t want it, and that means it’s hurting me”. (IC9)

They also described the people they supported as behaving in challenging ways when in pain, such as appearing uncooperative and confrontational, screaming, and using aggressive language/behaviour. Alternative descriptions of pain communication were also provided, including becoming withdrawn and quiet. Some described self-injurious behaviour as a way to communicate pain or distress. All but one caregiver described how they would verbally communicate with the person, typically asking them directly if they felt pain (including those who did not communicate verbally). The reciprocal nature of communicating in whatever way possible was emphasized by many to detect whether pain was present. But then you have to ask her, is that a big toe, small toe? Or whatever. Then with (this) time, she said it’s the small toe. If you ask her, she’ll say. (IC11) Only one formal caregiver described how asking people whether they were in pain was not something they considered. © 2014 John Wiley & Sons Ltd, 28, 111–120

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Maybe ask him, but then again because people are just not in the habit of asking people. . .I guess you’re not really focussed on people having pain. And just simply you could ask people “Are you feeling ok, do you have any pain in your body?” It’s just not socially acceptable. Maybe in this environment you should, but we don’t. (FC1) Nine caregivers reported being vigilant for signs of pain/illness, particularly observing changes in usual behaviour, mood, body posture, eating and drinking. I think for anybody on shift in this business, to be honest, you’ve got to be vigilant at all times, you know. . . ‘Cos little behaviours-you’ll miss something out, you know(..). Especially, the meals – are they eating their meals well? Drinking? Their urine and faeces?. . .You just have to look out. . .. . . (FC4) Six caregivers described a process of guesswork to decide if pain was present, what caused it, and the location. Careful thought and effort was involved, with two caregivers describing themselves as ‘detectives’. You just have to guess and guess. Sometimes it will take a few days then you will just get it, “ooooh maybe it was this”. You don’t get it all, it’s very, very difficult. It’s very, very, very difficult. (IC10) Six caregivers felt pain expression was highly individual, so knowing the person was the key to recognizing if they were in pain. So you’ve got to know him very, very well to know all that kind of screaming. . . So you’ve got to know if he’s in pain, or he’s just in himself, you know. (. . .) I think that’s the key to be honest. Working with them for a while, getting to know them, you know. As individuals. (FC4) The following three superordinate themes relate to the answer if and how caregivers recognize pain in the individual they support.

Superordinate theme 3: knowledge and skills needed to recognize and manage pain Five themes describe what helped caregivers to identify and manage pain among those they cared for, as well as © 2014 John Wiley & Sons Ltd, 28, 111–120


attitudes to pain. Three formal caregivers believed that support and sharing of knowledge among staff was helpful, as well as consistency among the team. One formal caregiver thought that training about pain would be helpful, but had not received this. Another said training had helped her to better understand signs of pain in someone she cared for. Caregivers portrayed confidence and certainty in being able to recognize pain, as well as lacking of confidence and uncertainty. It’s difficult in a way because you’ve if you don’t know someone’s in pain you tend to almost ignore it. Not intentionally but you don’t know. (FC3) Three formal caregivers had questioned if the person was genuinely in pain or was complaining of pain to achieve a particular goal, such as avoiding an activity or gaining attention. They described trying to distinguish between what they perceived as ‘genuine’ and ‘exaggerated’ or even ‘made up’ pain. X, she complains all the time. Because, one reason, because she like attention. When she need attention, she want someone to care about her. (FC2)

Superordinate theme 4: perceptions of the pain experience Two themes describe caregivers appearing to put themselves in the position of the person in pain. There was a general sense that people they cared for seemed to tolerate more pain and that their pain thresholds were higher than in the general population. He’s got quite high threshold, I’ll be honest with you, very, like me. Again, that’s something we’ve built up, because if we didn’t, we wouldn’t have been able to live our life the way we have. So, you know, he’s got very high pain threshold. (IC8) Views regarding whether people with intellectual disabilities understand pain and can understand causes of pain and pain relief were mixed. I don’t know if it’s because we are more conscious, you know, of pain than them. Oh, and you thinking about, “oh what happens after?” I think (. . .) you consider a lot of things where it’s probably, but they don’t. (FC4)

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Superordinate theme 5: trying to reduce pain Five themes describe caregivers’ attempts to alleviate pain. All participants involved health care professionals and mediated during interactions to try and obtain appropriate pain treatment. Some described this as a positive experience, yet the majority expressed dissatisfaction with health care professionals, including poor communication with people with intellectual disabilities, not asking about pain, and not looking at the person holistically. But if the doctor never asks if you are in pain, and you cannot tell – you can tell the doctor you are in pain, but if somebody’s not talking, and the doctor is doing his professional work, he probably should say “are you in pain?”. But that was never asked of her, or me to say – “Yes I think she’s in pain”, or “no I don’t think she’s in pain”. (IC9) Caregivers talked about being reliant on professionals to judge and recognize pain. Three formal caregivers talked about involving the person’s parents to help identify pain and mediate with professionals. Four caregivers described thinking and/or talking ‘for the person’ to identify pain or consider treatment, with mixed views about how helpful this was. Some described feeling confident in this, others not feeling able to speak accurately on behalf of the person with ID. They (doctors) can’t rely on my answer, can they? (IC6)

I know she’s not like me who’ll be able to talk, and I have to talk for her. So her voice is my voice. And my voice is her voice. That’s how I look at me and her, we are married together. (IC9) All caregivers repeatedly sought out and tested pain relief solutions, including over-the-counter painkillers, strategies such as hot water bottles and alternative therapies. But if it’s not very bad I just give her little hot drinks, rub her with Vicks or I’ve got some oil, and rub her feet and keep her warm and if I see the sign of a cold coming, I give her two paracetamol and the cold disappears. (IC9) Three caregivers described providing comfort, verbal reassurance and/or trying to be supportive.

Just sit down, comfort her. . . Give her comfort. Make her feel assured and I’m there for her. (IC10) The final superordinate theme addressed the third research question regarding the emotional impact of the processes described on caregivers.

Superordinate theme 6: emotional impact of pain Two themes describe the emotional impact of pain on the person and their caregiver. Three caregivers perceived the impact on the ‘sufferer’ as stopping them enjoying daily activities and causing emotional distress: When he’s having an asthma attack, and he’s in pain and everything, because it all plays up. . .. He says that to me, he said, “Mum, I wish, you know, that I was dead”. (IC8) Seven caregivers described a variety of emotions when discussing the emotional impact of dealing with pain. These were most commonly worry/concern and distress while seeing the person in pain: That’s when I get really, really down when I see her tears. (IC10) Caregivers described feeling sympathy, experiencing vicarious pains or simply that it was ‘painful’ to see someone in pain – often accompanied by statements indicating a sense of helplessness: When she’s in pain, I am in pain. . . And the same way when she has pain, if she’s having the pain, I’m having the pain too. . .My pain is not the abdominal pain she have, but it’s another kind of pain which I am feeling that “what can I do for her, what can I do to release her from the pain she’s in? Is there anything more I can do?” (IC9) Caregivers also talked about feeling stressed and frightened: At first it was a bit of a shock ‘cos obviously never seen her like that before. (FC3) One caregiver described feeling frustration when dealing with professionals who she felt did not understand the pain her son was in. Another caregiver described feeling angry that she had not discovered

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earlier that her daughter was in pain. Finally, two formal caregivers said they felt no emotional impact. I’m sort of used to dealing with it, so you pretty much react by taking action, taking the person to GP or the A&E, whatever the case. Was it distressful? (. . .) No just probably my job I guess, I’m used to. (FC1)

Discussion The present results demonstrate that despite caregivers’ best efforts, recognizing and having pain treated is a complex and often ambiguous task. The results suggest a real art to detecting pain by looking for clues and guess work, consistent with previous research (Clarke et al. 2008). Caregivers used their skills and knowledge to understand and manage pain, but were sometimes unaware of pain, despite their best intentions. This is unsurprising given that pain is often not recognized in this population (Jancar & Speller 1994; Hinder & Perry 2000; Defrin et al. 2006; Clarke et al. 2008), in part due to misconceptions that people with intellectual disabilities have higher pain thresholds and tolerance for pain (Kerr et al. 2006; Beacroft & Dodd 2010). A worrying finding was that some caregivers questioned the genuineness of self-reported pain and suspected such reports were attempts to gain attention rather than genuine, in line with Walsh et al. (2011). The findings confirm Donovan’s (2002) observation that caregivers are aware of both conventional and nonconventional ways in which people with intellectual disabilities express pain. They were also aware that challenging behaviour can communicate pain. However, pain signs can be misinterpreted or missed in line with Biersdorff (1994). Descriptions by caregivers of people attempting to ‘hide’ pain could actually be misconceptions about signs of pain, e.g. keeping very still can be a sign of being free of pain, but can also indicate severe pain. In the current study, just three caregivers spoke of the person experiencing emotional distress associated with pain. Previous research suggests that caregivers underestimate the emotional distress, particularly depression, caused by chronic pain in adults with intellectual disabilities (Walsh et al. 2011). This is probably because caregivers do not accurately recognize symptoms of emotional distress or misattribute them to intellectual disability (Reiss et al. 1982). Thus, new and significant health and/or emotional problems may be missed. © 2014 John Wiley & Sons Ltd, 28, 111–120


Perhaps understandably, the present study found that caregivers appeared to rely on the person to verbally express pain, with an implicit assumption that anyone who could communicate verbally would report pain. Research with older adults shows that people refrain from reporting pain for various reasons, including thinking that others do not want to hear (Kumar & Allcock 2008). The present findings suggest that at least for some individuals with intellectual disabilities, whose reports of pain have been disbelieved or ignored in the past, the same may apply. Furthermore, one parent observed that people do not talk about pain in front of people with intellectual disabilities; this raises the question of how they acquire an appropriate language to report pain. Consideration should be given to whether this population are ‘shielded’ from discussions of pain, perhaps as they are not perceived as cognitively competent to participate, due to concerns that talking about pain may cause upset, or possibly due to fears that this may instil inappropriate ideas. Caregivers’ assessments of pain reflect their attentional and attitudinal characteristics, background and training, and setting (Hadjistravropoulos et al. 2004). For example, someone who has a close personal relationship with the person being assessed might provide a different assessment than a health professional (Hadjistravropoulos et al. 2004). The present study found that the relationship between the person concerned and their caregiver was central to identifying pain. This supports findings on children with intellectual disabilities, which demonstrate the importance of knowing the person well to notice subtle changes in behaviour and/or appearance that indicate pain (Carter et al. 2002). The present results highlight dissatisfaction with the management of pain by health care services. This is in line with Mencap’s (2012) report, describing families who felt pain was not recognized or treated well by health professionals. Caregivers in the current study described poor doctor–patient communication, and a failure to ask about pain. Research in this area generally concludes that caregivers often find their opinions and assessment ignored by professionals although they often have the best understanding and information about the person (Department of Health 2008). However, Walsh et al. (2011) found that 83% of caregivers were satisfied or very satisfied with medical treatment of chronic pain in the person with intellectual disabilities that they were caring for. Involving caregivers in pain assessment is very important (Clarke et al. 2008), as recognized by the 47%

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of health care professionals who were found in one study to base their assessment of pain in someone with intellectual disabilities on caregiver reports (Walsh et al. 2011). However, in the present study, caregivers appeared unaware of their vital role and of pain recognition and monitoring tools, with only one staff member saying their team used ‘health passports’. This is in line with evidence that, despite extensive efforts to develop health monitoring tools for this population, such as the Disability Distress Assessment Tool (DisDAT; Regnard et al. 2007) or the Abbey Pain Scale (Mackey & Dodd 2011), few caregivers use formal tools to assess pain in people who cannot communicate verbally. Furthermore, in line with evidence of a general lack of awareness of training about pain for those working with this population (Twycross 2002), in the current study, only one staff member said he would like training on the topic.

Methodological limitations A number of limitations to the current study need consideration. The recruitment and sampling of participants may be a limiting factor as participants were all volunteers introducing unknown biases. Furthermore, the perspectives and experiences of informal and formal caregivers may well differ in ways that were not apparent from the present small sample and analysis. Five of six parents who took part had sons/daughters who communicated with a few/no words, so the issues they discussed may not reflect those of caregivers of more verbally able individuals. Arguably, though recognition and assessment of pain is less of a concern for such individuals as pain may be more readily communicated. However, because so little is known about how caregivers of adults with intellectual disabilities experience caring for those in pain, there may be differences in experience which relate to the verbal communication skills of the cared for person, as well as differences varying with the severity of intellectual disability. For example, one may hypothesize that it is harder to notice pain in people with more severe intellectual disabilities. Furthermore, gender of the caregiver and the person being cared for may have an impact on caregiver perceptions and responses. Among informal parent carers, there was an overrepresentation of caring for females with intellectual disabilities, however, formal carers tended to be supporting both males and females, so gender of people with intellectual disabilities appeared to more equally

represented during interview discussions (except for one interviewee who only supported females currently, but had worked with males in the past). Interview content inevitably influences what is discussed and what is missed, and the use of pain pictures may have narrowed the scope of pains discussed. It is also important to be mindful of the potential limited utility of the concept of pain for some participants; judgements and knowledge of pain are inevitably influenced by individual, social and cultural values and beliefs that were not identified in the study.

Implications The present findings indicate that recognition and management of pain in adults with intellectual disabilities requires specialist and individualist knowledge of the person. Mencap (2012) noted that every member of staff whose role involves pain detection and treatment needs to be mindful of the potential difficulties in diagnosing pain in this population, especially those who cannot communicate verbally. There is always the potential for pain and health problems to be overlooked in people with intellectual disabilities as a result of diagnostic overshadowing (Reiss et al. 1982). This should be particularly borne in mind when faced with individuals who self-injure, behave in challenging ways, or appear to be experiencing depression or sleep difficulties, as pain may not ordinarily be considered as a contributory factor, but could well be a potential cause of difficulties. It appears that evidence and resources are not necessarily readily available to caregivers. None of the participants in the present study were aware, for example, of Bottos & Chambers’ (2006) taxonomy of common pains in this population, or evidence on the high prevalence of reflux oesophagitis in this population (Tracy & Wallace 2001). Furthermore, resources designed for health workers working with people with intellectual disabilities who experience chronic pain, such as McManus & McGuire’s (2010) guide on pain management based on cognitive behavioural principles, or Beacroft & Dodd’s (2008) staff training materials on awareness of pain and its communication may require much wider dissemination if they are to be of widespread use. Mainstream health care services are required by law to make reasonable adjustments for people with intellectual disabilities, but it seems that one seemingly easy adjustment, namely to make full use of caregivers’ knowledge and observations is frequently still © 2014 John Wiley & Sons Ltd, 28, 111–120

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overlooked, nor do caregivers always feel able to share their understanding with health care providers. Health inequalities relating to the misdiagnosis or failure to detect pain in this population should be addressed by engaging caregivers more effectively, for example, by asking them to keep pain diaries, pain profiles and the DisDAT (Regnard et al. 2007), which allow for monitoring of ‘typical states’ versus ‘pain states’. Training could be provided for professionals and caregivers in using Ruddick & Oliver’s (2005) Health Status Measure with individuals who can communicate verbally, or the observation-based Non-Communicating Adult Pain Checklist (NCAPC; Lotan et al. 2009a), which has high inter-rater reliability (Lotan et al. 2009b) and can be used in clinical settings (Lotan et al. 2010). Caregivers should be provided with information about tools which can aid conversations about pain such as pictorial communication cards, body maps, pain rating scales and resources such as Dodd & Brunker’s (1999) ‘Feeling Poorly’ pack, or Beacroft & Dodd’s (2011) booklet about pain written for adults with intellectual disabilities. Future research should examine communication about pain between caregivers and people with intellectual disabilities through observational data, given that the current findings are based on caregivers’ accounts of such communication. Another area for further research concerns best practice for pain relief or reduction in this population. To date, little has been done to examine the substantial experience caregivers have in this area. It is possible that their views on what helps can usefully supplement what is viewed as best practice.

Source of funding This study received no external funding.

Conflicts of interest No conflicts of interest to declare.

Correspondence Any correspondence should be directed to Dr Laura Findlay, Clinical Psychologist, Specialist Healthcare Team, Service for People who have a Learning Disability, Twinwoods Resource Centre, Milton Road, Clapham, Bedfordshire MK41 6AT, UK (e-mail: laura. [email protected]).

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Caregiver experiences of supporting adults with intellectual disabilities in pain.

Caregivers have an intimate knowledge of the individuals they care for and are therefore an important source of information on pain experiences. They ...
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