Using heart rate monitoring to discover pain and discomfort in non-verbal persons with severe intellectual disability: Caregivers’ experiences

Abstract

BACKGROUND

Non-verbal persons with intellectual disabilities (ID) may suffer from pain or discomfort, but caregivers may not notice this because of the communication difficulties. Previously, we conducted a study in which professional caregivers used heart rate (HR) monitoring to identify situations that cause acute pain or distress in the everyday life of non-verbal persons with ID.

OBJECTIVE

To explore professional caregivers’ experience with using HR monitors to better understand non-verbal persons with ID.

METHODS

Fifteen professional caregivers and 30 final-year students of social education were recruited as informants based on their experience with HR monitoring in non-verbal persons. The informants were interviewed, and they responded to a questionnaire with open-ended questions. The qualitative data were analysed thematically.

RESULTS

Caregivers reported that HR monitoring provided information about acute pain, acute or prolonged distress, occurrence of epileptic seizures, and the non-verbal persons’ preferences and dislikes. HR data had to be interpreted contextually to be meaningful. Some informants found HR monitoring time-consuming or the interpretation of HR data challenging due to multiple possible causes of increased HR.

CONCLUSIONS

Caregivers experience HR monitoring as a potentially important source of information that may help them better understand non-verbal persons with ID.

Keywords

Intellectual disability pain stress well-being heart rate monitoring caregivers

1. Introduction

The global prevalence of intellectual disability (ID) is approximately 1% [1]. Approximately 5% of this patient population have severe ID with an IQ score between 20 and 34, or profound ID (IQ $<$ 20) [2, 3]. Persons with severe or profound ID may lack adequate verbal language, and although they may be able to gesticulate, produce vocal sounds, facial expressions, or eye movements, this mode of communication is not unequivocal [4]. We here refer to these persons as “non-verbal persons with ID” or “users” as they are users of public services in assisted living facilities, at home or in day activity centres.

Caregivers who work in assisted living facilities for non-verbal persons with ID face a challenging task in trying to understand, and make meaningful communication with, their users. The ambiguity of the expressions used by a non-verbal person with ID and the subjectivity inherent in their interpretation have been described as quite frustrating for the caregiver [5, 6, 7, 8]. Among caregivers, there is a fear that non-verbal persons with ID may suffer from pain or discomfort that go unrecognized due to limited communication abilities [8]. This fear is substantiated by previous findings that persons with IDs are likely not to be diagnosed with a painful condition [9, 10], while they have been shown to be as sensitive to pain as the general population [11, 12, 13]. Caregivers have expressed a need for tools to better detect pain and discomfort among non-verbal persons with ID [8, 14].

The possibility of using physiological sensors to detect pain or distress has been researched for decades. In populations without ID, acute pain or strong emotions cause increased heart rate (HR) [15, 16, 17, 18, 19, 20, 21]. Similar results have been obtained in persons with ID, where studies have involved using sensors to assess physiological responses of pain and emotions [22, 23, 24]. In one study, HR monitoring provided insight into pain-provoking situations in the daily life of non-verbal persons with ID [25].

HR may be monitored with various techniques, all with different advantages and disadvantages in terms of obtrusiveness and accuracy. Monitors with chest straps that record ECG through surface electrodes provide ECG with good temporal resolution and is moderately obtrusive to the user. However, chest deformities such as scoliosis, which are common in persons with ID [26, 27, 28] may lead to loss of contact between the electrodes and the chest wall. HR understood as pulse at an artery may be measured by wrist-worn optical sensors, but these techniques tend to be somewhat less accurate than chest skin electrode measurements [29] and thus less suited to investigate high-resolution HR variations.

The research project “Understand how I am!” investigated whether a chest strap HR monitor may help non-verbal persons with ID communicate to their caregivers if they experience acute pain or discomfort [25]. The purpose of the present study was to explore whether caregivers found HR monitoring useful in their work with non-verbal persons with ID.

2. Methods

2.1. Informants

Informants in this study were professional caregivers ( $n=$ 15) or final-year students of social education (BSc) ( $n=$ 30).

The professional caregivers worked at assisted living facilities providing 24-hour care for non-verbal persons with ID who had worn an HR monitor over a period as part of the project “Understand how I am!” [8, 25]. We refer to the non-verbal persons with ID that took part in the project as participants. The caregivers were recruited by administrative leaders of the assisted living facilities based on their experience with working in close contact with the participants. Three of the 15 professional caregivers were males. The caregivers were informed on inclusion that the topic of the interview would be their experiences with use of HR monitors for persons with ID and limited communication abilities.

The final-year students of social education chose to take part in the presented study as the concluding project work part of their bachelor’s degree. The students were completing a three-year full-time study and based their bachelor’s theses on the data they collected during the 6–8 weeks in close contact with a non-verbal person with ID. Nine of the 30 students were males.

Table 1

Age range and gender of the participants

Age range	Male	Female	Total
11–20	1	0	1
21–30	6	6	12
31–40	1	3	4
41–50	2	2	4
51–60	1	4	5
61–70	0	1	1
71–80	1	0	1
Total	12	16	28

Figure 1.

Study set up: The participant wore an HR monitor. The observer wore the wristwatch and observed the participant. Staff worked as usual. Observers were free to decide whether to take an active part in daily routines or to stay as passive observer (Graphics design by macrovector/Freepik).

2.2. Participants: Non-verbal persons with ID using HR monitors

A group of 28 non-verbal persons with ID who were residents of assisted living facilities providing 24-hour care were recruited as participants by staff in their living facilities. Inclusion criteria were severe or profound ID and severely limited communications abilities. Two residents were recruited twice, so that a total of 30 test periods were completed during four years: 11 in 2018, 9 in 2019, 6 in 2020, and 4 in 2021. Table 1 displays the age ranges and gender of the participants. Apart from being non-verbal with ID, the participants formed a heterogenous group with individual challenges such as cerebral palsy, Rett’s syndrome, Down’s syndrome, DiGeorge syndrome or autism. Fifteen participants suffered from epilepsy. Only six participants could move independently.

2.3. Study design for use of HR monitoring

During a 6–8 weeks period, the participants wore an HR monitor, and each participant was closely monitored by a final-year student of social education (BSc) and/or by professional caregivers working in their staffed homes or daytime activity centres. Twenty-five participants wore a chest strap (Garmin HRM4-Run). Three participants could not use a chest strap due to physical or technical limitations; these participants used an HR strap on the upper arm instead (Polar OH1). Each HR monitor was paired with a wristwatch (Garmin Forerunner 235) to collect, display and store data for further analyses. The HR strap was worn for 4–7 hours daily, mainly on weekdays. An observer registered time and type of activities such as meals, resting, doing outdoors/indoors activities, transportation, and therapy sessions and behaviours such as screams, movements, grimaces, or other body language (Fig. 1). Situations that could affect HR levels, such as being in a noisy room or meeting a family member could also be registered. The observer was usually a student, but if the student was not present, regular staff could act as observers on some occasions.

Observers used the wristwatch to ensure synchronisation between observations and HR, and to detect possible loss of contact between the HR monitor and the skin of the participant or between the HR monitor and the wristwatch. They could also see the current HR, but they were urged to be more attentive to observations than to HR to ensure the quality of observations and reduce bias. Instead, HR measurements and observer registrations were aligned and analysed in retrospect with software tools developed in the project [25].

2.4. Data collection

An interview guide was developed prior to the interviews with the professional caregivers. Four semi-structured interviews were conducted as group interviews and one as an individual interview, all lasting between 70 and 100 minutes. Informants were included if they met one or more of the following criteria:

Had worked in close contact with a non-verbal study participant.

Had supervised a student who had been monitoring a study participant.

Had performed observations related to the HR monitoring during one or more study periods.

Had analysed and discussed HR and observation data with a student or with other colleagues with similar experience.

Group interviews were chosen as the preferred method, as the social interaction among informants could stimulate discussions and reflections among the informants based on their common knowledge of the study area [30]. Group sizes ranged from two to six informants. Group interviews were conducted in a room selected by the informants in their workplace, ensuring a physical setting and a psychological climate encouraging informants to share their opinions [31]. Interviewer(s) ensured that all informants were encouraged to bring forward their views on the topics discussed. In one of the residences, only one caregiver met the inclusion criteria, and the interview was conducted as an individual interview using the same interview guide as in the four group interviews. The individual interview and one of the group interviews were conducted by one interviewer, while two interviewers took part in the rest of the group interviews. All interviews were audio recorded, and observational notes were taken during the interviews. Recordings were transcribed word-by-word.

A separate interview guide was developed for individual debrief interviews with final-year students of social education. These interviews were conducted shortly after the students had completed their thesis work which was based on the 6–8 weeks study period with a participant using HR monitor. Interviews of 30 to 60 minutes duration were conducted by one interviewer as a part of a procedure to hand over HR monitors and computers that had been used for data collection, which provided a natural arena for an interview. The students were informed that the debrief interview was in the interest of the project to learn from the informants’ experiences and would be conducted by researchers that had no role in grading the student’s thesis. This information was repeated when setting up interview dates and again when the interviews took place. This was emphasized to ensure that the power balance during the interview should be in favour of the student and thus encouraging them to speak freely [32]. Field notes were taken during interviews that were shown to the informant at the end of the interview, both to ensure validity of the notes and to ensure informants yet again that emphasis was on their experiences and not as an evaluation of the “correctness” of their answers.

All 30 students were encouraged to answer in writing a set of open-ended questions before or right after the debrief interview; 23 students completed these questions.

2.5. Analysis

Thematic analysis was applied on the collected data [33, 34, 35, 36]. As we aimed to elucidate the experience of the caregivers, we used the informants’ account of observed variations in HR and their interpretation of whether or not there was a relationship between HR variation and the observed situation. We did not attempt to validate whether the change in HR constituted a statistically or biologically significate change or not, or to what extend the described situation, behaviour or activity was a plausible cause of change in HR from a physiological point of view.

A first level of codes was used to code transcripts and field notes in the initial analysis. After independent readings of the data sets by three researchers, this set was further refined and all interview transcripts and field notes reviewed. The material was coded using spreadsheets where each transcript or field note were given a separate sheet, and one or more relevant codes from the code list were mapped to the relevant lines of the transcripts and field notes The data set was then sorted by these codes and grouped together constructing two main themes Data and codes were written in Norwegian, and selected quotes were translated to English.

3. Results

From our analysis we identified two different aspects of the caregivers’ experiences with using HR with non-verbal persons with ID:

Aspect 1: Various categories of new insights in the participant’s wellbeing that the informants felt to have found using a HR monitor: acute pain, acute or long-term stress, identification of epileptic seizures, better insight in the participants’ preferences, lack of pain or stress, or no new information at all.

Aspect 2: The process of gaining this new insight in terms of the caregiver’s experiences with technical limitations of the HR monitors, observation of context and visual/audible signs and analysis and interpretation of HR data.

Quotes were chosen to illustrate typical empirical findings.

3.1. Aspect 1: Categories of new insight using HR

The experienced value of using HR monitors with non-verbal persons with ID could be grouped into six main insight categories where rise in HR, or lack thereof, provided some level of new insight into the participant’s wellbeing.

3.1.1. Category 1: Identifying acute pain

Informants described situations where they connected an observed rise in HR with a definite activity or behaviour that could potentially be painful, such as when a participant bit his hand or when a spastic limb was stretched during dressing or physiotherapy.

“Where we think this does not hurt, it actually hurts. So that way it [HR monitoring] was very valuable. We saw especially in the care situations, which I have not thought so much about, that one arm is very sore. We have always known that it is stiffer and that there are contractures and things like that, but we have not had the opportunity to find out that it is so painful because he has no language.” [Group interview 1].

The situations that were discovered to be painful were few compared to the total number of investigated situations. However, the informants described pain identification as a vital task as the presence of pain constitutes a major threat to the well-being of the non-verbal person with ID. Pain could also be a suspected cause of other observed behaviour such as screams, grimaces or moving limbs.

3.1.2. Category 2: Identifying acute or prolonged stress

Changes in HR have been observed by our informants in situations that were presumed to be stressful for the participant. These were situations where the informants suspected the participant felt unsafe or uncomfortable, but where physical pain was not expected. Examples of such situations included being in an environment that was noisy or unfamiliar, changing placement or position using a mechanical lift, or being transported in a vehicle. As HR monitoring was carried out over several weeks, our informants witnessed stressful situations of varying duration that they claimed were reflected in an increase in HR. The observations of one of the participants illustrate this: The participant was known to suffer from anxiety attacks, and the observer found that his HR increased during these attacks. Both the observer and the closest caregiver found a clear increase in HR in situations where the participant was moved using a mechanical patient lift. Keeping an eye on the rising HR, they were able to pause the initiated movement, calm the participant, and ward off an otherwise expected anxiety attack. Thus, the rise in HR was used as an indicator of acute stress. With the same participant, the informants witnessed an unintended long-term stress period:

One thing that became apparent due to HR monitoring was – he used sedatives, he used [name of primary medication], and it was not available, so he had to use [name of alternative medication] instead, and his average heart rate was greatly changed from [name of primary medication] to [name of alternative medication]. […] you would not see that without heart rate measurements. The average heart rate went up about 10–12 extra beats on average compared to [name of primary medication]. [Group interview 5].

Due to the situation described in the quote above, informants also observed more frequent anxiety attacks. This period of medication change was thus described as a long-term stress situation that was reflected by the increased HR level over time.

Our informants found a rise in HR when participants were clearly agitated and showed self-harming behaviour such as biting their hands or scratching themself. The rise in HR in some of these situations could stem from both the pain from biting or scratching, and from the psychological stress that was assumed to cause the behaviour, but it was unclear which was the dominant cause of the increased HR.

3.1.3. Category 3: Increasing HR during epileptic seizures

Epileptic seizures were common among the participants. Several of these seizures were described as difficult to detect as they were “silent seizures” where the participant had few visible or audible manifestations of the seizure activity. Our informants described examples where HR increased before any visible or audible signs of seizure were observed by caregivers or observer. Informants described this as valuable information, as they observed that the participants and other nearby persons with ID found seizures frightening. An early warning through a rising HR could enable caregivers to more quickly comfort and support the person experiencing a seizure and improve administration of medication following the start of a seizure. The ability to get an early warning from rising HR was described as useful also with persons that had other forms of epilepsy, such tonic-clonic seizures. These seizures are easier to detect, but still require observation or epilepsy monitors such as bed monitors. A sudden rise in HR could give caregivers more information about when seizures began and how frequently they occurred.

3.1.4. Category 4: Get to know the person better

Informants described that the HR information could give new insight into the participants’ well-being or reactions to their surroundings, and thus help the informants understand the participant better and adjust their interaction as caregivers with the participants. The informants already had some preconceptions of whether the participant was content or not from interpreting visual and audible cues. Adding HR information in these cases were considered useful because it could either support or help them adjust their interpretation of the participant’s mood or well-being by adding another piece in the puzzle of day-to-day communication. We provide two variants of this view:

The participant’s preferences: what brings dissatisfaction or joy

In some situations, participants exhibited behaviour that could be understood as reflecting dissatisfaction rather than distress or pain. HR measurements allowed informants (caregivers) to better understand which part of the situation the participant was discontent with, and staff could thus be more specific in trying to accommodate the participant’s preferences. In one such example, informants interpreted from visible and audible signs that the participant did not enjoy being bathed and shaved. Through the HR responses, caregivers could modify how this routine was performed, and the participant appeared more content, although he still seemed to be uncomfortable while being shaved.

Our informants also described how participants had expressions of joy through facial expressions or sounds when meeting certain relatives, listening to specific music or being involved in certain activities. In these cases, the informants already had a notion that the participants enjoyed the situation or activity, but HR gave clues about how much one thing was enjoyed, or it indicated which part of the situation was more enjoyable. One of our informants described how the regular staff found signs of joy, but the informant, being unfamiliar with the participant, could see no visual signs of this. However, the HR increased markedly, and our informant therefore felt he could trust the regular staff’s interpretation.

Caregivers’ awareness of their own behaviour

Variations in a participant’s HR could stem from the interaction between a participant and the staff who worked with them. Informants knew that the various caregivers performed the same procedure in slightly different ways and had experienced that a participant’s reactions to this could be visible in HR data. As an example, one informant described that experienced staff knew that a participant was uncomfortable with small rooms and people being too close to him. Being new to the participant, she (the informant) observed a sudden rise in his (the participant’s) HR when she inadvertently came very close to him in a wardrobe. She felt that HR monitoring was a valuable tool to get to know the participant and to help adjust her own behaviour and actions around him. Later, when they had gotten to know each other better, he seemed to accept her participating in intimate care routines without a rise in HR.

3.1.5. Category 5: Disprove suspicions of pain or stress

The main concern of the caregivers was whether the participant experienced pain or distress. In several cases the absence of increased HR was interpreted by informants as reflecting that the participant did not experience pain or distress. Caregivers described this discovery as a relief, as they were afraid to inflict pain or stress on the participant. Further, they stated that such knowledge could lead to better care for the participant: if physiotherapy was not painful, i.e. not causing increased HR, they could do more intense physiotherapy exercises and with potentially better outcome for the participant. Similarly, if a participant was found to accept sitting in a wheelchair rather than lying in bed, she could also participate more in social activities and thus have more (rather than nearly none) stimulating experiences in her life.

3.1.6. Category 6: No or ambiguous information from HR

Most informants described specific situations where they experienced that HR measurements did not give any useful information. This could be because the participant was very mobile and HR increases would likely stem from physical activity rather than from pain or distress. In other cases, the caregivers had not observed any visible or audible signs in the participant or their surroundings that could explain a sudden rise in HR.

3.2. Aspect 2: Gathering insight from HR measurements

Our informants were in general positive towards using HR monitors to better understand non-verbal persons with ID. They expressed that HR monitoring could give valuable insight about non-verbal persons with ID. This was so even if they had experienced limited or no specific value in the study they had participated in:

I had a perception that it is a useful tool. Although it was not functional with this participant, I believe it can have a great impact on other more sedentary persons before the technology is developed enough to also apply to active persons. [Questionnaire]

Straps with HR monitors placed on either chest or arm were widely accepted by the participants. Scoliosis, dry skin or the use of certain walking/standing aids were reported as causes of reduced contact between the chest strap and the skin and led to periods of HR signal loss for some participants. Informants also described that the contact between the HR strap and the wristwatch could be lost if the watch was too far from the HR strap or if something blocked the signals, such as the participant curling up or if the watch was in another room than the participant wearing the HR strap. These practical issues were experienced by most of the informants from time to time, but were described as manageable when the informants became familiar with the limitations of the technology.

However, the main concern of our informants was how to collect relevant observational data and how to analyse the HR variations correctly. One informant stated in the questionnaire what illustrates a general reflection among our informants: “My impression is that it [the use of HR monitoring] becomes more subjective than I had imagined.” Although the registered HR-data was objective, the observers themselves chose the level of detail and precision in observations. This would vary between observers. Informants also experienced that the task of observing could interfere with the interaction with the participant; this could lead to reduced quality of registrations, the interaction with the participant, or both. Another informant wrote in the questionnaire: “In order to get reliable [results], you are so dependent on accurate observations and registrations, and that is difficult if you are in the middle of interacting with another person”. The informants emphasized that without observations, they felt that HR data had little or no value.

Informants found data analyses challenging and sometimes confusing. This could be due to situations that included multiple possible causes for increased HR such as physical activity and a concurrent potentially stressful situations, or conflicting signs where neither surroundings nor activities were expected to cause pain, stress or any particular bursts of joy. Informants raised concerns about the risk of perceiving correlation between HR levels and observations in situations where no such correlation in fact existed (so-called apophenia). They were also at times unsure if their conclusions were valid, and feared that one could conclude erroneously that a participant did not experience pain or stress based on the lack of increased HR. Informants suggested that the interpretation of HR in some cases could be just as difficult as interpreting other communicative signs. Thus, it would require structured discussions among competent personnel to understand how and why HR would vary. Nevertheless, as the informants were accustomed to interpreting vague or conflicting signs of communication, they believed that HR monitoring provided a new and potentially useful tool that, if used with caution, could help them understand the non-verbal persons with ID better. They also pointed out that the focus on HR in relation to other signs of communication made them more aware of the participant’s reactions to surroundings, interactions, and activities.

4. Discussion

A main finding in this study was the positive attitude among caregivers toward the use of HR monitoring to discover pain and discomfort in non-verbal persons with ID. The positive attitudes expressed by the caregivers likely reflected a realization that non-verbal persons with ID are at risk of experiencing pain and discomfort without being able to tell their caregivers about it, which is in line with several studies [9, 10, 11, 12, 13].

Many of the situations our informants found interesting were situation where participants potentially experienced psychological stress. Persons with ID are at risk of experiencing psychological stress due to their intellectual disability [37], further aggravated by their lack of ability to communicate their perceived stress. Janssen et al. [38] suggest that better measurements of stress, increased sensitivity among caregivers and improved attachment between caregivers and users, can improve buffers against perceived stress and challenging behaviour. In this context, our informants’ use of HR to understand the user better could represent a potential tool for increased sensitivity and attachment between caregiver and user. The positive attitudes expressed by the caregivers reflected a strong wish to help the users avoid pain and stress and reduce the impact of stressful situations.

4.1. Not straightforward, but a supplementary means of communication

Our study found that caregivers did not find it straightforward to use HR monitors to assess whether a person experienced pain or stress in real-life settings: Correct interpretation of HR variation required insight in the individual communication signs of the person with ID, insight into the context, and knowledge about how HR can be affected by factors such as physical activity, pain, stress, and emotional arousal. In addition, variations in HR would occur that could not be related to any observations. This could be either because the variations were caused by inner arousal [39] or because the observer failed to detect the causing event. Caregivers still expressed belief that HR monitoring can be useful for the right person, despite the challenges mentioned. HR variations that are related to stress or pain can become more apparent for persons with a lower level of physical activity (sedentary lifestyle, using wheelchair or being bedridden) than for physically active persons.

Øderud et al. [8] describe how caregivers and parents of persons with little or no communication abilities continuously try to interpret vague or inadequate signs of communications. To create a shared understanding of these signs among relatives and caregivers, standardized frameworks, such as Inventory of Potential Communicative Acts (IPCA) [40] are used. Our study showed that HR, although vague or ambiguous in many cases, could add information and contributed to enhancing the caregivers’ interpretations of other signs. However, as interpretation of HR was still considered very subjective, a framework similar to IPCA should be developed and applied for interpreting HR to ensure a shared understanding among caregivers and relatives of how variations in the user’s HR can be interpreted.

4.2. Limitations of HR monitoring

Our informants emphasized that one should not rely on HR monitoring alone to determine whether the participant experienced pain or distress. They feared that pain or other negative emotions still could be experienced by the participant although it was not detected by HR monitoring. Their view is supported by previous studies [41] where HR seemed to normalize after a longer period of pain or stress. In these cases, chronic pain seems to cause lower heart rate variability [42, 43, 44]. Measurements of heart rate variability may thus have the potential to provide a more nuanced picture of how the person with ID is doing [45, 46], but was not investigated in the present study.

The student informants had to negotiate technical limitations in the HR monitors, such as signal loss and proximity requirements. These are challenges that have occurred because the technology has been used outside the physical exercise scenarios anticipated by the manufacturers. Our informants found ways to overcome these challenges, but it is evident that if HR monitoring is to be used in clinical practice, care must be taken to choose devices and measurement scenarios where these challenges are manageable. Similarly, the informants had limited tools to display and analyse HR data in relation to observations. Future implementations should support real-time display of HR data along with recent history and trends, as well as easy-to-use tools for retrospective analysis.

4.3. Strengths and limitations

Caregivers are eager to find new tools that can aid them in their work with non-verbal persons with ID [8]. Furthermore, the final-year students involved in the study presumably had a positive initial attitude towards monitors since they chose this thesis work topic. In an interview situation, the researchers could therefore be perceived as a representative for a desired solution. There was a risk that informants during the interview over-emphasize their positive experiences over the negative. This could be due to factors such as gratitude for their needs being recognized, fear of disappointing the researchers, cognitive dissonance resulting from the effort they themselves had put into the test period [47], or simply not wanting to create a negative atmosphere during the interview. The researchers have not observed the participants directly, but must rely on both observations, measuring routines, analyses and reflexions as they are conveyed by our informants. Care was therefore taken during interviews and questionnaire to probe both positive and negative aspects of the technology, its usage and limitations.

The researchers’ own interpretation may influence the analysis of interviews with student informants since these were collected through field notes. Therefore, the informants’ own statements in questionnaires were used to ensure that their views were interpreted correctly. Further, only quotes from questionnaires and transcriptions have been used to illustrate the results, as they are closer to the informants.

A strength of the study is the new information it brings into a field that suffers from a lack of research. As a qualitative study with a relatively small sample size, we should not generalize our findings, but our results indicate possible benefits as well as challenges that must be overcome. The study may therefore help pave the way for more active and practical use of physiological sensors in community care to assess the wellbeing of non-verbal persons with ID.

5. Conclusion

The use of HR monitoring to discover pain and discomfort in non-verbal persons with severe intellectual disability requires observations as well as caregivers’ reflection and interpretation. This would lead to a more interpretive approach to the person in general. Caregivers experience HR monitoring as an additional source of information that helps them understand the persons with ID better. The use of HR monitoring with non-verbal persons with ID is experienced by caregivers as useful in a wide range of situations. However, the experienced benefits vary between participants, and is dependent on the selected situations of study and the activity level of the person with ID.

Author contributions

B.H., T.Ø., E.S.B., F.S., and C.M. designed the study. F.S., E.S.B and T.Ø. drafted the interview guide with important input from I-L.D.; all authors critically revised the interview guide. E.S.B. T.Ø. and F.S. performed the interviews, E.S.B, E.S-M.K. and T.Ø. transcribed and analysed the interview data. T.Ø. and E.S.B drafted the questionnaire and analysed the survey data. All authors discussed the results and interpretations. I-L.D. and C.M. provided contact information for the informants. E.S.B. drafted the manuscript. All authors discussed the results and critically revised the manuscript. All authors approved the final version of the manuscript.

Ethical considerations

Informed consent was obtained for all informants. The study was beforehand approved by The Committee for Ethics in Medical Research for the Southern and Eastern parts of Norway (Concession #2016/1956) and the study conformed with the Declaration of Helsinki.

Every participant received a written description of the study prior to participation. Their parents or wardens signed a declaration of consent. Participation in the project did not affect the care services offer to the participant. The participant, via their relatives, had the opportunity to withdraw from the study at any time without having to state any reason.

Footnotes

Acknowledgments

We would like to thank all the participants as well as the professional caregivers and students involved in making this study possible. This work was funded by The Research Council of Norway – project no 269348.

Conflict of interest

The authors have no conflicts of interest to report.

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