The psychosocial impact of home use medical devices on the lives of older people: a qualitative study

The reported increased life expectancy that is being seen in Western Europe, Japan and the United States of America is mirrored by a rise in chronic diseases [1]. These chronic diseases are increasingly being controlled and monitored by patients themselves, thus facilitating the transfer of the health care setting for older people away from the hospital and into communities and homes. This relocation of health care has resulted in the increased use of medical devices in the home [2, 3].

Studies that have looked at the user experience of different types of medical devices in the home have shown that users are required to make adjustments to the way that they live in their own homes. In a study by Ingadottir and Jonsdottir [4], oxygen compressors were considered to be large and noisy objects that have to be kept outside the bedroom when used at night because of the noise. The spouse of one participant took to sleeping in a separate room due lack of sleep as a result. In another study, a participant who used peritoneal dialysis complained that the bedroom now resembled a hospital room, while users receiving parenteral nutrition or oxygen therapy were concerned about the visual impact of the treatment equipment and would either attempt to hide the equipment from visitors or invite people to the home less often [5]. On the whole, home dialysis and oxygen therapy equipment seems to be experienced as bulky and conspicuous, having a detrimental effect on the aesthetics of the home environment. Efforts are made to conceal this equipment in a bid to reduce the institutionalised look of the home [6].

The home environment is particularly important to the elderly with growing old being associated with an increased and intensified attachment and emotional involvement in familiar places [7]. It has been suggested that clinical interventions might have a transformative effect on the inherent characteristics of the home and create ambiguities between 'home’ and 'institution’ which may erase or reverse any positive notions that older people might have for the home [8, 9]. It is also worth noting that older people might have spouses and family members living with them, all of whom will also have an attachment to the home. Thus, the presence of medical equipment and the possibility of having to interact with the devices or help with treatment may have a bearing on their own roles and identity within that environment [10].

The literature around home use medical devices has identified areas of tension between users in general and specific medical devices. In our study we collected and analysed qualitative data in an attempt to describe how medical devices are integrated into the lives of older people.

Two major themes were identified in the analysis which describes how medical devices are integrated into the lives of older people and are presented in the following sections: 'striving to maintain self-esteem’ and 'the social device’.

Quotes from device users and their partners/spouse will be identified in the following manner; participant 1 (P1), partner/spouse of participant 1 (PP1).

In the first theme of 'self-esteem’ there was a real sense of powerlessness when participants were talking about their illness and that there was no real alternative to having these medical devices in their lives. Being diagnosed with a chronic illness can undermine one’s sense of personal control and lead to tension and psychological distress including decreased levels of self-esteem [18, 19]. Part of the adjustment process to a threatening event (e.g. chronic illness) is control or 'mastery’ over the event in order to manage the condition and express a sense of personal control [20, 21]. This can be seen in the present study by participants using the device to monitor their condition and using the results to modify behaviour. Another expression of mastery can be achieved by assuming control over related aspects of an illness such as treatment and becoming an expert in how to use the device itself.

This theme also described examples of where the medical device facilitated participants' ability to derogate others and point out that other people with similar conditions and devices were doing less well or using their devices incorrectly. This is consistent with the literature in that when faced with a threat to self-esteem, individuals can often make downward self-enhancing comparisons that increase subjective well-being by comparing themselves with less fortunate others [22]. Similarly, individuals may also derogate or devalue other persons in a bid for self-enhancement [23].

Device use also impacted on the lives of device users’ partners and wider social circle as described in the second theme 'the social device’. The literature has tended to focus on that of the role of 'family caregiver’, an individual who lives with or close to the ill person who provides unpaid assistance with social and medical care [24]. Studies that have looked at spousal carers of individuals suffering from chronic diseases have noted the impact of role change as the role of husband/wife is eroded and is absorbed in to that of carer [25]. Little evidence was found to support this suggestion in this study as the users required very little in the way of assistance and the role of husband/wife remained intact. The reason for this is unclear but could be the result of the equipment acting to supplement informal care and promote independence [26, 27]. This meant the relationship between the spouse and the device was different to that of the relationship between the device and the user. In this study the spouse and user are required to share the same physical environment and the resultant consequences of noise and aesthetics with the spouse not directly benefiting from device use (any benefits from the device for the spouse would be deemed as being indirect). The fact that some of these devices were used in the shared bedroom meant that sleep was disturbed or sleeping arrangements had to be altered (changing sides of the bed, sleeping in another room). There were also other emotional consequences of device use on partners. While one husband reported a certain amount of embarrassment when out with his wife while she was using her device, another user reported the very act of using the device in front of her husband caused the husband to become annoyed. While this may have been an expression of concern for his wife’s health it could also be that it had a detrimental effect on the way he thought about himself. Steele, Spencer and Aronson [28] proposed that situational cues that identify a person as belonging to a devalued, low status social group lead to social identity threat. In this case conspicuous medical device use might have caused discomfort because it reminded him of his own age and mortality. The influence on spousal identity has also been discussed in relation to assistive devices used by people suffering a stroke which reported similar findings [29].

The effect on others was not entirely negative. One example of the positive effects on others was the benefit they received from the shared use of medical devices with regards to symptom relief or physical function. Also, the use of devices in some cases was not hidden away from grandchildren but actually became a part of the social interaction with the grandchildren 'helping’ with the equipment or 'using’ it as part of supervised play. While much has been written around how families experience chronic illness (for a review of the literature see [30]) little has specifically addressed the effect of medical devices on the relationship between grandparent and grandchild. The ways that devices were being used in play may be an example of normalization strategies used to decrease disruption and maintain family processes [31].

In general, participants expressed positive feelings about their devices and the impact that the device had on their lives, and the users themselves expressed an overall feeling of satisfaction and were often not able to think of ways to improve the device. A possible contributing factor to this might be found in the literature that has identified a link between age and satisfaction. Analysis of patient satisfaction surveys in the UK identifies age, as opposed to other socio-demographic factors, as having the strongest influence on satisfaction levels. Older people are consistently more likely to express greater levels of satisfaction with regards to health care than younger people [32]. This may in part be due to older people’s greater experience of healthcare and its potential shortcomings resulting in decreased expectations and a resultant increase in their satisfaction [33].

There is no doubt that the emotional content of design in everyday products is becoming increasingly important but it is proposed that the reaction to meaning and emotional response that is triggered by a particular product varies between generations, cultures, social groups and nationalities [34]. This implies that devices could be specifically designed for older people in order to prompt a positive emotional response.

This study has described some of the challenges faced by this particular group of older people in relation to medical device use. The challenges include the social consequences and effect on self-esteem that are a result of these devices entering their lives. This change in situation from non-user to user can also have implications on the home in which they live and the people they share their life with.

The idea that many of the devices in this study are regarded as 'home use’ and have been designed to slot into people’s lives is not generally supported by these older people. In fact the opposite seems to be the case with reports of adjustments and alterations having to be made to people’s lives to accommodate devices into the home.

Simply addressing the clinical and safety requirements of users in relation to the design of these medical devices does not guarantee user satisfaction, and the importance of considering the context in relation to the device/user interaction is gaining prominence. Further studies examining how medical devices can better fit in to the home and how other family members, not just the users, feel about sharing their lives with such devices are required. Longitudinal studies designed to capture the experience of change from non-user to user of medical devices may be particularly useful. This may encourage not only a more sympathetic design that both reduces the disruption to older people’s lives and facilitate greater satisfaction but also enable healthcare professionals to better prepare older people for the integration of medical devices into their lives and homes.