Defining the concept

It is largely agreed that QoL is a multidimensional construct. It is considered to have between four to six domains (Bond 1999; Lawton 1997; World Health Organization 1993) and there is variation in the definition of these domains. It is not easily defined, as it means different things to different people and can have different meanings according to its application or to an individual’s current situation. For example, QoL for an older person living in residential care might relate to being cared for by staff interested in the individual’s wellbeing, while for an older person living in the community it might mean their being able to remain at home, feeling safe and secure in their home, or having ready access to health services. A number of factors are thought to influence QoL, such as work and leisure activities, self-concept, cognitive function, financial stability, and social support and participation (Renwick et al 2003).

Quality of life instruments typically measure general health and happiness, physical, emotional, cognitive and role functioning, social wellbeing and sexual functioning. However, as there is no consensus about a definition of QoL, there is therefore disagreement about the components of life that should be evaluated. Thus, some QoL instruments measure single concepts such as physical functioning while others measure several concepts. In trying to refine the concept, attempts have been made to link QoL and health, with such definitions frequently emphasising the importance of happiness and satisfaction. To distinguish between QoL and health and a broader view of QoL, the term health-related quality of life (HRQoL) is frequently used. Although HRQoL is still loosely defined, numerous instruments have evolved to measure QoL from the perspective of a specific disease, such as QoL for the person living with cancer.

Health-related QoL scales by definition have an emphasis on health and physical functioning in their assessment; however an over-emphasis on such elements can potentially produce deceptive results (Wilhelmson et al 2005). It has often been found that people with significant health problems or functional impairments rate themselves more highly on QoL scales than expected by researchers or care professionals (Arnold 1991; Carr & Higginson 2001; Guse & Masesar 1999; Rai et al 1995; Wilhelmson et al 2005). This has been described as the ‘disability paradox’ (Carr & Higginson 2001: 1358; Wilhelmson et al 2005: 586) and it is a phenomenon that reinforces the need for capturing subjective perceptions of QoL. As people age, physical health and functioning tend to diminish, creating the possibility of distorted perceptions of QoL in the senior years (Frytak 2000); this is of particular concern in a climate already permeated with negative images of old age (Gabriel & Bowling 2004). In contrast to such images, studies have indicated that older people tend to rate their subjective impressions of QoL more highly than their younger counterparts, particularly in terms of psychosocial wellbeing, despite declining health and physical functioning (Frytak 2000). Thus, it should not be assumed that increasing age is synonymous with declining QoL.

Why measure QoL?

In the care of older people, QoL is a major area of enquiry and there are several reasons to measure it, not least of which is family concerns for loved ones in care. Quality of life has been established as an outcome measure in the assessment of care and may be used to inform health economic decisions (Selai & Trimble 1999). It is also commonly measured in clinical trials, for example to determine the negative and positive aspects of treatment as perceived by participants. Such information can help patients to understand the overall consequences of treatments, so as to inform future treatment decisions. Quality of life is particularly important in the care of people who suffer chronic illnesses. Measurement of QoL can help health practitioners to assess the effects of chronic illness and/or the care provided and help them to focus on areas of concern for the patient (Kane 2001).

Quality of life is a concept that is in the forefront of ageing research and can be used to measure the extent to which health care providers’ interventions influence an individual’s subjective experience of wellbeing. Quality of life measurement in older people has become increasingly important, as technology has enabled the opportunity to extend life, whilst not necessarily improving its quality. In recent decades in both health care and residential aged care there has been a change in quality evaluation focus from the process of care delivery to care outcomes for patients/residents. This move has resulted in there being an increasing interest in QoL as achieved by individuals.

Measurement of QoL in older adults

Quality of life measurement is generally carried out by asking individuals to judge their QoL on an ordinal scale through their answers to a set of multi-item questions. This approach values the view of the individual and generally takes into account both an objective view — what the individual experiences and does – and a subjective evaluation — how the person feels about it (Lawton 1997). Proxy assessment such as by observations or assessment by a relative or carer is generally only undertaken when it is considered that the individual is unable to give a concerted response such as in the case of cognitive impairment (e.g., severe dementia). In such cases, loss of memory and cognitive functioning such as attention and insight as well as communication can make self-evaluation difficult (Albert 1998). However, proxy assessment has been shown to differ from the responses individuals give and there is general agreement that an individual’s responses vary considerably from staff and relatives (Berglund & Ericsson 2003). Therefore self-report is argued to take priority over other forms of QoL data. This position is problematic when attempting to measure QoL in populations where the majority either cannot respond to the questions or might provide answers of questionable validity because of poor cognitive functioning (Rabins et al 2000). Recent research has challenged such a view and has encouraged the development and validation of QoL instruments for this population (Moyle et al 2007).

Measurement of QoL in residential aged care

With increasing Government and consumer pressure to achieve quality outcomes in residential aged care facilities, there is a need to assess care practices in terms of how well they address QoL issues. Broadly interpreted, QoL measurements in such facilities need to take into account a range of dimensions, including material, physical, social, emotional and spiritual. Further, in deciding what dimensions to include, it is crucial to involve the residents of aged care facilities and, where relevant/necessary, their relatives. As pointed out by Gibson (1998), we must ensure that QoL measurement tools do in fact include what matters to residents. This point of view was echoed by Bond (1999), specifically related to measuring the QoL of people with dementia, a relatively common condition amongst residents.

A particular limitation of many existing scales for measuring QoL, including those adapted for use with older persons, is that they require a level of physical and/or mental capability not always present amongst residents in aged care facilities. Self-completion surveys require intact vision, hand function and cognition; this can be overcome somewhat through administration by interview but the resident would still require the ability to understand and communicate in English, which can be impaired by hearing difficulties, communication disorder, or cognitive decline. All of these conditions are relatively common within the residential aged care context.

Further to the above, the nature of residential care creates a unique living situation for residents of these facilities. Residents are physically frailer than even the general older population and institutional life is markedly different to life at home (Bury & Holme 1993; Byrne & MacLean 1997; Cohn & Sugar 1991; Coons et al 1996; Fiveash 1998; Guse & Masesar 1999; Kane 2001); as such, different factors become important for the maintenance of optimal QoL (Kane 2001). Furthermore, resident perceptions of their own QoL have been found to differ markedly from the perceptions of staff and researchers (Ball et al 2000; Byrne & MacLean 1997; Cohn & Sugar 1991; Fletcher et al 1992; Kane 2001; Rai et al 1995). These findings suggest that, as much as possible, research into resident QoL should be conducted from the resident’s perspective.

As a means of exploring resident perceptions of QoL, Edwards, Courtney and O’Reilly (2003) conducted a series of focus groups with aged care facility residents. Choice and autonomy were prominent themes amongst the participants in that study, with most expressing that the move to residential care involved restricted choices and a loss of autonomy. Enabling more involvement in their day-to-day decisions was seen as a positive step toward enhanced perceptions of QoL. It was also noted that being proactive in the decision to move to care and being involved in the choice of facility was considered a positive step. Participants in the above study were also very influenced by the physical environment. Negative impacts of the environment were largely related to loss of privacy and the need to share facilities, especially the most intimate of facilities, the bathroom. Positive impacts related to the heightened sense of security felt within the residential care environment. Many participants discussed the insecurity felt prior to their move to care — fear of collapse while no one was around, and fear of intruders — and noted how much more at peace they felt once within the residential care environment. The other significant theme related to staffing, in that residents felt that if there were not enough staff to attend to them when necessary, this impacted negatively on their QoL. However, just as important as amount of staff time was the quality of staff interactions. If residents felt valued and were treated with warmth and thoughtfulness, this would positively influence their QoL. The above impressions were reinforced by further survey results, which indicated that QoL was poorer for residents who shared rooms and/or bathrooms, and also for residents of larger facilities where less staff contact was more likely (Courtney, Edwards, O’Reilly et al 2003). Thus, it appears that QoL for residents of aged care facilities is influenced by care providers, as well as the care environment, and as such QoL cannot be considered in isolation from quality of care.

Availability and appropriateness of measurement tools

Recent overviews of the wide variety of HRQoL measures have been provided by Garratt et al (2002) and Haywood et al (2005). The most widely used is probably the SF-36 (Ware & Sherbourne 1992; Ware et al 1993) and the shorter SF-12 version (Ware et al 1993). Other commonly used measures include the World Health Organization Quality of Life Instrument (WHOQOL) (Skevington et al 2004), Nottingham Health Profile (Hunt et al 1981), and the Sickness Impact Profile (Bergner et al 1981). Examples of self-completion instruments include the WHOQOL — available in several forms, including one recently developed specifically for older people (Peel et al 2007; Power et al 2005; WHOQOL Group 1995, 1998a, 1998b) — which assesses the individual’s perceptions in the context of their culture and value systems, as well as their personal goals, standards and concerns, and the EuroQoL (Brooks & the EuroQoL group 1996), which is a standardised instrument to measure health outcome. The Resident and Staff Observation Checklist — QOL (RSOC–QOL) (Sloane et al 2005), is an example of an observation QoL measure that uses systematic non-participant observation to gather and record data on the appearance, location, activity, behaviour, affect, restraint use and interactions of residents. An example of a caregiver proxy measure is the QoL — AD (Quality of Life — Alzheimer’s Disease) (Logsdon et al 2000). This brief instrument obtains a rating of the individual’s QoL from both the individual and the caregiver (family and nurse caregiver).

As mentioned above, more recently the WHOQOL–OLD (Power et al 2005) was developed specifically for use with older adults. Peel and colleagues (2007) undertook a study of the psychometric properties of this, related to its suitability for use in evaluating healthy ageing interventions. They concluded that whilst compared to, for example, the SF-12, it had some desirable features specifically related to older people; further research is necessary to assess the value of the WHOQOL–OLD when used as a ‘stand-alone’ measure.

Measurement tools for use in residential aged care

When considering residential aged care, QoL measures that have utility in this setting are quite limited. In terms of the residents, the focus is on the frailest members of the older population, who are presumably in need of care due to the existence of various physical and/or mental limitations. As such, health status would seem to be an important influence on QoL. However, when reviewing the HRQoL measures, health status has such an emphasis that any resident of an aged care facility would appear to have very limited QoL if measured by these instruments. For example, items on physical function often include questions such as whether or not the person can comfortably run the length of a football field — many older people not resident in aged care facilities would have difficulty doing this. Numerous measures also have an emphasis on a person’s ability to carry out work without offering a comparable alternative that could be applied to the retired and frail resident of an aged care facility.

Other general issues related to assessing the QoL of residents include (see for example Bartlett 1993; Boldy & Bartlett 1998; Boldy & Grenade 2001):

Living within residential care settings is qualitatively different to living within the general community and because of this, there are a number of factors that significantly impact on QoL but which tend to be taken for granted in everyday life. Group living is by nature more regulated and regimented than independent living, and in addition, residents are by nature more functionally impaired than the general population, creating significant levels of dependence on care staff (Bury & Holme 1993; Byrne & MacLean 1997; Cohn & Sugar 1991; Coons et al 1996; Guse & Masesar 1999; Kane 2001). A large survey of stakeholders’ opinions into nursing home quality further confirms the importance of resident-based care, noting the three most important QoL factors identified were ‘dignity, self-determination and participation, and accommodation of resident needs’ (Harrington et al 1999: 124). Kane and Kane (2000) identified sense of safety, security and order; physical comfort; enjoyment; meaningful activity; relationships; functional competence; dignity; privacy; individuality; autonomy/choice; and spiritual wellbeing as being important influences on QoL in long-term aged care. Kane (2001) suggested an institution’s inability to individualise care would have significant negative impacts on QoL. However, while the above factors have all been identified in recent years, no sound comprehensive measure of such factors exists as yet. When choosing an instrument to use with residents of aged care facilities, the following factors should thus be considered:

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