Effect of a residential respite admission for older people on regional Queensland family carers

Article Outline

• Summary
• Introduction
• Method
  • General Health Questionnaire (GHQ)
  • Caregiving Hassles Scale (CHS)
• Results
  • Characteristics of family carers
  • Characteristics of RRC recipients
  • Reasons for residential respite care
  • The psychological distress of family carers
  • The hassles of care
  • Family carer burden and RRC recipients
  • Family carer burden changes and RRC recipient characteristics
  • Family carer burden and family carer characteristics
  • Family carer burden changes and family carer characteristics
• Discussion
• References
• Copyright

Summary 

Objective

This study undertaken in regional Queensland aimed to determine the effect of a residential respite care (RRC) admission for older people on family carers.

Method

The study used a repeated measures, prospective design. The participants were 100 family carers and their older dependants who were studied before and after the RRC admission.

Results

Family carer psychological distress increased after a period of RRC [F(1, 57)=250.9, p<.001] as did the level of caregiver burden [F(1, 57)=189.8, p<.001]. The presence of dementia and hearing problems in the RRC recipients, the psychological distress of the family carer, being younger and a spouse of the RRC recipient all predicted carer burden.

Conclusions

It is not surprising that RRC, once over, does not necessarily reduce psychological distress and carer burden if this is associated with ongoing caring responsibilities that are resumed after RRC. Nurses need to discuss these issues with family carers and inform them of the likely outcomes of RRC and how they may better utilise the ‘break’ provided by RRC to counteract some of this response.

Keywords: Aged, Carer burden, Nursing home, Nursing research, Psychological distress

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Introduction 

Residential respite care (RRC) is an intervention primarily provided to give family carers a break to reduce their burden of care (Australian Institute of Health and Welfare, 1999). Examining the effect of interventions that are designed to assist family carers is an important area of research. Although some research has suggested that family carers’ health might be adversely affected by a RRC admission (Hirsch, Davies, Boatwright, & Ochango, 1993), other work has not reported any adverse effects (Burdz, Eaton, & Bond, 1988) and some have shown short-term relief in burden (Adler, Ott, Jelinski, Mortimer, & Christensen, 1993; Larkin & Hopcroft, 1993). Clear evidence for substantial benefits of RRC for family carers has been lacking (Mason et al., 2007; Hanson, Tetley, & Clarke, 1999). Research on the effect of a RRC admission on family carer well-being has been largely confined to studies of satisfaction with respite services (Nicoll, Ashworth, McNally, & Newman, 2002). Family carer characteristics commonly associated with high levels of burden and psychological distress such as being a spouse and caring for an older person with dementia are well established in the literature (De Vugt et al., 2006), however, the effects of RRC on family carers in relation to such characteristics have not been thoroughly investigated (Jeon, Brodaty, & Chesterson, 2005).

Overall, Australia has an ageing population but the demographic profile of non-metropolitan Australia leans heavily towards an even greater ageing population (Australian Institute of Health and Welfare, 2002). Regional Australia has a disproportionate representation of older people. Typically, in these towns 25% of the population is over 65 years of age and 10% are 75 years and older whereas the figures for metropolitan areas are 13% and 5%, respectively. Added to this issue, the towns have declining populations but the proportion of older people is increasing. Population projections predict that there will be a 20% decrease in the 0–14 years age group and a 51% increase in the 65 years and over age group leading to a greater dependency ratio (Department of Human Services, 1996). There has been an increasing concern by health professionals over a number of years about the health of Australians living in non-metropolitan areas. This is particularly so in light of the challenges associated with the long distances from metropolitan areas and the lower density of health and aged care services available in non-metropolitan areas. For these reasons it is important to research care for older people in regional Australia so the needs of this group are included in health care planning in regional areas.

RRC is a much-needed service and it is important to measure the outcomes of it to inform care planning and policy decision-making. In the present study conducted in regional Queensland the following research question was asked: does the psychological distress and carer burden experienced by family carers change after a period of RRC? A subsidiary question was: what could be the predictors of carer burden?

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Method 

This article reports on one facet of a broader, repeated measures, prospective study examining the impact of RRC on the behaviour of older people (Neville & Byrne, 2006). Ethical clearance was obtained from the research ethics committee of The University of Queensland and informed consent was obtained from each participant and family carer. Over a 12-month period, in the regional Queensland city of Toowoomba (population: 90,000), we enrolled a consecutive series of 100 family carers with older dependants being admitted for a booked RRC admission. Measures were taken on the family carers and the RRC recipients. Family carers were interviewed in their own homes on three occasions: Time 1, within 2 months prior to the RRC recipient entering the residential aged care facility; Time 2, at 1 month following RRC; Time 3, at 3 months following RRC. At each measurement time the family carers completed the 28-item version of the General Health Questionnaire (Goldberg & Hillier, 1979) to measure their level of psychological distress and the Caregiver Hassles Scale (Kinney & Stephens, 1989) as a measure of their carer burden.

General Health Questionnaire (GHQ) 

The scaled version of the GHQ is a 28-item, self-administered screening instrument aimed at detecting psychological distress. It focuses on disruptions in normal functioning rather than on life-long traits, thereby covering patterns of adjustment where these are associated with distress. The questions require the participant to identify if they have recently experienced a particular symptom (such as abnormal feelings or thoughts) or type of behaviour. Emphasis is on changes in condition, not on the absolute level of the problem, so items compare the present state to the person's normal situation with responses ranging from ‘less than usual’ to ‘much more than usual’. The GHQ-28 is designed for use in primary care settings and consists of four subscales, each of seven questions: somatic symptoms, anxiety and insomnia, social dysfunction, and severe depression. The GHQ has a possible range of 0–84 with higher scores indicating greater distress. Scores can be interpreted as indicating the severity of psychological disturbance on a continuum. Intercorrelations between the four subscales and the total GHQ score ranged between 0.69 and 0.90, with anxiety being the core phenomenon (Goldberg & Hillier, 1979).

Caregiving Hassles Scale (CHS) 

The CHS is a 42-item scale designed to assess the daily hassles of caring for a family member with dementia rather than the longer-term events or wider caregiver responsibilities. The daily hassles are associated with providing assistance with Activities of Daily Living and the care recipient's cognitive status, behaviour and social network. The family carer indicates whether the event happened during the past week and then how much of a hassle it was for them on a four-point scale ranging from 1 (It wasn’t) to 4 (A great deal) to give an overall summed score. The CHS has a possible range of 0–42 with higher scores indicating greater burden. Test-retest reliability (r_p=0.83) and internal consistency (α=0.91) were found to be good and the CHS correlated well with other measures that are used to assess similar constructs, thereby establishing construct validity (Kinney & Stephens, 1989).

Demographic information and current medical conditions including dementia were obtained about both the family carers and the RRC recipients. Family carers were also asked their reason for using RRC. The 15-item Geriatric Depression Scale (Sheikh & Yesavage, 1986), the Instrumental Activities of Daily Living Scale (Lawton, 1988) and the Activities of Daily Living Scale (Katz, Ford, Moskowitz, Jackson, & Jaffe, 1963) were used as measures of the RRC recipients’ functioning at Time 1.

Data were analysed using Stata 7.0 (Stata Corporation, 2003). Preliminary descriptive analyses of baseline data were undertaken. Frequency tables were generated for categorical and ordinal data. Chi-square and t-test analyses were used for associations between variables. General linear models using regression and analysis of variance were employed.

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Results 

There were 100 participants at Time 1 and Time 2. However, there were only 58 participants at Time 3 because of permanent placement in a residential aged care facility or death of some of the RRC recipients. The characteristics of the participants may be found in Table 1, Table 2 where additionally Chi-square and t-test analyses showed no bias due to the characteristics of those participants lost to follow up versus those who were able to remain in the study.

Table 1. Demographic variables of family carers

Characteristic	Respondents Times 1–3 (n=58)	Respondents Times 1 and 2 (n=42)	Group differences
Mean age in years (S.D.)	64.1 (10.9)	65.1 (14.1)	t=.364, d.f.=98, p=.716
Gender			χ2=.923, d.f.=1, p=.337
Female	45	29
Male	13	13
Relationship to the older person
Child	24	21
Spouse	18	15
Son/daughter-in-law	7	2
Other (e.g. friend)	5	2
Brother/sister	4	1
Parent	0	1

Table 2. Demographic and dependency variables of residential respite care recipients

Characteristic	Respondents Times 1–3 (n=58)	Respondents Times 1 and 2 (n=42)	Group differences
Mean age in years (S.D.)	82.29 (7.4)	81.02 (6.5)	t=−.894, d.f.=98, p=.374
Gender			χ2=.418, d.f.=1, p=.518
Female	35	28
Male	23	14
Dementia	15	14	χ2=.660, d.f.=1, p=.416
Depression	4.91	4.57	t=−.580, d.f.=98, p=.563
Activities of daily living	9.36	9.90	t=.860, d.f.=98, p=.392
Instrumental activities of daily living	23.76	23.76	t=.003, d.f.=98, p=.998

Characteristics of family carers 

There were a greater number of female family carers and they were mainly spouses or children of the RRC recipients (see Table 1).

Characteristics of RRC recipients 

Baseline characteristics of the RRC recipients (n=100) indicated that on average this sample had some level of cognitive impairment (29% had a reported diagnosis of dementia); generally they were not depressed, however, 37% of the sample recorded a score greater than five on the GDS, indicating some likelihood of depression; there was moderate dependency with activities of daily living; the RRC recipients were quite dependent with instrumental activities of daily living. Taken together, these results indicated a reasonably dependent group of RRC recipients (see Table 2).

Reasons for residential respite care 

Prior to RRC admission, the family carer was asked an open-ended question about their understanding of why the older person was being admitted for RRC. Sixty percent indicated that they needed a break for physical and emotional rest and relaxation.

The psychological distress of family carers 

The mean family carer GHQ scores ranged between 21.21 and 23.9 during the study period [F(1, 57)=250.9, p<.001] (see Table 3). These scores indicated at least some degree of psychological distress.

Table 3. Descriptive statistics for the General Health Questionnaire at Times 1, 2 and 3

The hassles of care 

The mean CHS scores ranged between 12 and 15.79 during the study period, increasing over the duration of the study [F(1, 57)=189.8, p<.001] (see Table 4). These scores indicated at least some degree of carer burden.

Table 4. Descriptive statistics for the Caregiver Hassles Scale at Times 1, 2 and 3

Fig. 1 shows the mean GHQ and CHS scores recorded at Times 1, 2 and 3. These indicated that family carer psychological distress and burden did not decrease after a period of RRC.

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• Figure 1. 

  Line graph of mean General Health Questionnaire (GHQ) and Caregiver Hassles Scale (CHS) scores at Times 1, 2 and 3.

Table 5, Table 6 detail the differences in the GHQ and CHS scores for the family carers at Times 1 and 2, Times 1–3 and Times 2 and 3. Both tables of results indicated that family carers were significantly more psychologically distressed and experiencing greater burden at Time 3 than at Times 1 or 2.

Table 5. General Health Questionnaire (GHQ) score differences at Times 1 and 2, Times 1–3 and Times 2 and 3

Table 6. Caregiver Hassles Scale (CHS) score differences at Times 1 and 2, Times 1–3 and Times 2 and 3

Family carer burden and RRC recipients 

A multiple regression analysis was performed to determine if baseline RRC recipient variables (gender, age, current marital status, where the person lives and with whom they live) would predict carer burden (CHS score at Time 1). The result was not significant [F(5, 94)=.63, p=.679].

Another multiple regression analysis was undertaken to determine if RRC recipient medical conditions (hearing problems, arthritis, stroke, Parkinson's disease, stomach/bowel disease, high blood pressure, depression, diabetes, lung disease, dementia, heart disease, eyesight problems and kidney disease) would predict carer burden (CHS score). This model did predict carer burden at Time 1 [F(13, 86)=3.011, p=.001], Time 2 [F(13, 86)=2.79, p=.002] and Time 3 [F(13, 44)=3.67, p=.0006]. However, of the 13 medical conditions in this model, only dementia and hearing loss were independent predictors of carer burden.

Family carer burden changes and RRC recipient characteristics 

Multiple regression analyses were performed to determine if RRC recipient characteristics (gender, age, current marital status, where the person lives and with whom they live) predicted change in carer CHS score during changes in the caring situation. This model did not predict change in carer CHS score from Time 1 to Time 2 whether the analysis included all of the carers (n=100) [F(5, 94)=1.47, p=.207] or only those who remained in the study until Time 3 (n=58) [F(5, 52)=1.126, p=.359]. Similarly, this model did not predict change in carer CHS score from Time 2 to Time 3 [F(5, 52)=0.47, p=.798].

We conducted a further multiple regression analysis to determine whether RRC recipient medical conditions (hearing problems, arthritis, stroke, Parkinson's disease, stomach/bowel disease, high blood pressure, depression, diabetes, lung disease, dementia, heart disease, eyesight problems and kidney disease) predicted change in carer CHS score during changes in the caring situation. This model did not predict change from Time 1 to Time 2 in carer CHS score whether the analysis was done with n=100 [F(13, 86)=1.21, p=.286] or n=58 [F(13, 44)=1.753, p=0.083]. Similarly, this model did not predict change in carer CHS score from Time 2 to Time 3 [F(13, 44)=1.439, p=.180].

Family carer burden and family carer characteristics 

To test whether family carer characteristics of age, gender, relationship to the RRC recipient (spouse and other) and psychological distress (GHQ score at Time 1) would predict carer burden (CHS scores at Times 1, 2 and 3), three multiple regression analyses were performed. The psychological distress of the family carer, the age of the family carer and the relationship of the family carer to the RRC recipient predicted burden at Time 1[F(4, 95)=8.183, p<.001], Time 2 [F(4, 95)=7.624, p<.001] and Time 3 [F(4, 53)=8.385, p<.001]. These results found that if the family carer was younger and/or a spouse they reported more burdens and that family carer psychological distress and burden are related.

Family carer burden changes and family carer characteristics 

To determine whether family carer characteristics of age, gender, relationship to the respite recipient (spouse and other) and psychological distress would predict change in the burden (CHS) score during the changes in the caring situation, two multiple regression analyses were performed. This model did not predict change in carer burden score from Time 1 to Time 2 whether the analysis was done with n=100 [F(4, 95)=.716, p=.583] or n=58 [F(4, 53)=.721, p=.582]. Similarly, this model did not predict change in carer burden from Time 2 to Time 3 [F(4, 53)=.873, p=.487].

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Discussion 

The admission of older people to RRC is often related to the degree of burden experienced by the family carer (Caserta, Lund, Wright, & Redburn, 1987). This is reflected in the findings of this study where 60% of RRC recipients (n=100) were admitted to give the family carer a break from their caring role and responsibilities. In addition, this study confirmed that family carers of RRC recipients do suffer psychological distress and burden. In the present study, family carers who were younger and rated highly on psychological distress had higher burden scores. Family carers of older people who had dementia and hearing problems also recorded higher burden scores.

Although other studies have shown that RRC can be associated with short-term reductions in burden (Adler et al., 1993, Larkin and Hopcroft, 1993), it is clear from the current study that a reduction in psychological distress or burden does not persist after a period of RRC. The finding of increasing psychological distress after a period of RRC is in line with Homer and Gilleard's (1994) study in which there was no evidence of overall improvement in family carer emotional state as measured on the GHQ after a period of RRC. Hirsch et al. (1993) highlighted some negative aspects of RRC where the family carer might experience a greater absolute burden than prior to RRC. Those negative aspects included the older person's readjustment to the home environment and perceived mental and physical deterioration. Witt, Chenoweth, and Jeon (2004) examined issues associated with utilising respite care and noted that post-respite adjustments/reactions in respite recipients were difficult for family carers to manage.

The strength of this study was the examination of a specific type of respite care—residential respite care, a relatively large sample size, a repeated measures design and details of outcomes for family carers. The limitations of the study were not having a control group (though it may not be ethically justifiable to withhold needed services such as RRC), not independently verifying the self-reports of the family carers about their psychological distress and burden and not measuring these variables while the older person they cared for was in RRC. Further research could address these limitations, examine what is happening to the family carer and the older person during RRC and trial interventions for family carers such as educational programs and self-care strategies (e.g. massage and meditation) to see if improvements can be made for the outcomes of RRC.

The findings of the present study have important implications for family carers because, although RRC in an aged care facility for older people affords their family carers much needed physical and emotional rest, family carers considering this option need to be informed by health care workers that it might lead to an increase in the burden of caring following the older person's return home. The implications are greater for family carers in regional areas who have lesser access to support services. Practically, health care workers should have a high index of suspicion of morbidity, especially psychological morbidity, in family carers, particularly those caring for older people with dementia and hearing problems. Interventions could be targeted at vulnerable family carers in order to reduce their morbidity, to improve their own quality of life and consequently that of the older people in their care.

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