‘Taking Care of Myself’
Identifieur interne : 000928 ( Istex/Corpus ); précédent : 000927; suivant : 000929‘Taking Care of Myself’
Auteurs : Francine Ducharme ; Louise Lévesque ; Lise Lachance ; Francine Giroux ; Alain Legault ; Michel PrévilleSource :
- Dementia [ 1471-3012 ] ; 2005-02.
Abstract
The purpose of this randomized study was to test the efficacy of an intervention programme entitled ‘Taking Care of Myself’ on selected indicators of mental health of daughter caregivers of elderly parents with dementia living in a long-term care setting. The programme is based on an empowerment perspective and on a stress and coping theoretical framework. Three groups of caregivers were compared: one took part in the experimental programme (EG, N= 45), one in a comparison programme offered by a Quebec Alzheimer Society (AG, N = 51), and another was a control group (CG, N = 41). Two successful outcomes are unique to the EG condition, that is, competence dealing with health care staff and perceived challenge of the caregiver role. Prediction analyses also provide statistical support for the efficacy of the EG and AG conditions to produce successful outcomes with respect to common indicators (perceived threat and role overload, control by self, informal/formal social support, and use of the coping strategy of reframing). These results provide avenues of intervention for promoting the mental health of caregivers of an institutionalized relative.
Url:
DOI: 10.1177/1471301205049189
Links to Exploration step
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<abstract><p>The purpose of this randomized study was to test the efficacy of an intervention programme entitled ‘Taking Care of Myself’ on selected indicators of mental health of daughter caregivers of elderly parents with dementia living in a long-term care setting. The programme is based on an empowerment perspective and on a stress and coping theoretical framework. Three groups of caregivers were compared: one took part in the experimental programme (EG, <italic>N</italic>
= 45), one in a comparison programme offered by a Quebec Alzheimer Society (AG, <italic>N</italic>
= 51), and another was a control group (CG, <italic>N</italic>
= 41). Two successful outcomes are unique to the EG condition, that is, competence dealing with health care staff and perceived challenge of the caregiver role. Prediction analyses also provide statistical support for the efficacy of the EG and AG conditions to produce successful outcomes with respect to common indicators (perceived threat and role overload, control by self, informal/formal social support, and use of the coping strategy of reframing). These results provide avenues of intervention for promoting the mental health of caregivers of an institutionalized relative.</p>
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<meta-value> a rt i c l e 'Taking Care of Myself' Efficacy of an intervention programme for caregivers of a relative with dementia living in a long-term care setting F R A N C I N E D U C H A R M E University of Montreal,Canada L O U I S E L É V E S Q U E University of Montreal,Canada L I S E L A C H A N C E Laval University, Canada F R A N C I N E G I R O U X University of Montreal, Canada A L A I N L E G A U LT University of Montreal, Canada M I C H E L P R É V I L L E University of Sherbrooke,Canada Abstract The purpose of this randomized study was to test the efficacy of an intervention programme entitled 'Taking Care of Myself' on selected indicators of mental health of daughter caregivers of elderly parents with dementia living in a long-term care setting. The programme is based on an empowerment perspective and on a stress and coping theoretical framework. Three groups of caregivers were compared: one took part in the experimental programme (EG, N = 45), one in a comparison programme offered by a Quebec Alzheimer Society (AG, N = 51), and another was a control group (CG, N = 41). Two successful outcomes are unique to the EG condition, that is, competence dealing with health care staff and perceived challenge of the caregiver role. Prediction analyses also provide statistical support for the efficacy of the EG and AG conditions to produce successful outcomes with respect to common indicators (perceived threat and role overload, control by self, informal/formal social support, and use of the coping strategy of reframing). These results provide avenues of intervention for promoting the mental health of caregivers of an institutionalized relative. Keywords institutionalization; intervention; mental health; placement; spouse carers de men tia d e m e n t i a © 2005 sage publications www.sagepublications.com vol 4(1) 2347 DOI: 10.1177/1471301205049189 03 ducharme (ds) 13/12/04 2:51 pm Page 23 Background to the study In Canada, as in several countries of the European Union, elderly persons with dementia make up the vast majority of the institutionalized clientele in long-term care settings (e.g. nursing homes and long-stay hospitals). In this regard, according to a major Canadian population-based study (Canadian Study on Health and Aging, 1994), half of the persons with dementia in the 6584 age group live in long-term care settings and the proportion reaches 66 percent among those 85 years and over. Women, primarily wives and daughters, represent more than two-thirds of the family caregivers of these institutionalized elderly persons (Canadian Study on Health and Aging, 1994). Under the caregiving career framework developed by Montgomery and Kolosky (2000) to understand variations in the caregiving experience and the support needed by family caregivers, institutionalization is considered one of the seven markers of the caregiving trajectory. Many caregivers who reach this stage in the trajectory resort to long-term placement when their health and that of their relative are severely deteriorated (Chenier, 1997). Despite the importance of institutionalization as a key marker in the care- giving career, these family caregivers have been the focus of much less research than have been those who care for an elderly relative at home, on account of the belief that institutionalization diminishes, ipso facto, their psychological exhaustion (see Naleppa, 1996). Yet, certain studies (Anesh- ensel, Pearlin, Mullan, Zarit, & Whitlatch, 1995; Canadian Study on Health and Aging, 1994; Ducharme, Lévesque, & Cossette, 1997; Hooker et al., 2002; Kramer, 2000; The Resource Implications Study Group of the MRC Study of Cognitive Function and Ageing, 2000) have revealed that care- givers of an institutionalized elderly relative constitute an at-risk group in terms of mental health to the same degree as do caregivers of a relative living at home. Moreover, the health of caregivers of an institutionalized relative with dementia is more precarious than that of caregivers of an insti- tutionalized relative with no cognitive impairment (Lévesque, Ducharme, & Lachance, 1999). According to the Canadian Study on Health and Aging (1994), the percentage of caregivers with a high level of psychological distress increases considerably (18%) when they take care of a relative whose health is severely deteriorated. This is the case for a large number of persons with dementia in institutional settings. Furthermore, support from family and friends decreases after the relative is placed, which in turn increases the isolation and burden of caregivers (McCallion, Toseland, & Freeman, 1999). This said, little is known regarding the health needs and the stressful situations faced by caregivers of an institutionalized elderly relative with 24 dementia 4(1) 03 ducharme (ds) 13/12/04 2:51 pm Page 24 dementia. As underlined by Montgomery and Kolosky (2000), such knowl- edge is essential to develop interventions tailored to the needs of these care- givers at that specific juncture of their caregiving experience. Only a few intervention programmes intended for caregivers in an institutional setting have been published (Linsk, Miller, Pflaum, & Ortigara-Vicik, 1988; Maas, Buckwalter, & Swanson, 1994; McCallion et al., 1999; Wiancko, Crinklaw, & Mora, 1986; Wilken, Farran, Hellen, & Boggess, 1992). Most of these programmes, however, are not underpinned by a theoretical model, have not been subjected to systematic evaluation and do not target the specific needs of caregivers with a view to promoting the mental health of this at- risk group. Given their vulnerability, these caregivers should be perceived as clients of health care services rather than resources useful in the delivery of care (Twigg, 1989). These observations initially led us to undertake a three-stage pilot study (see Ducharme, Lévesque, Gendron, & Legault, 2001) based on a partici- patory action research model (Henderson, 1995; Tozer & Thornton, 1995) in which women caregivers were considered as experts and co-researchers playing an active role in every step of the research process. At the first stage, results from six focus groups revealed that these women were exposed to several stressful situations, including grief of witnessing relative's deterio- ration, difficulties communicating with relative, and lack of support from family, friends and health care staff. Other stressors specific to the insti- tutional setting concerned the little say that families are given in the relative's care, the lack of control by caregivers over quality of care, and their lack of ease in expressing viewpoint to the health care staff. At the second stage, 11 workshops were organized with caregivers who took part in the focus groups with the aim of developing an intervention programme comprising elements that would enable them to acquire skills for dealing with stressors and greater control over their mental health and over care situations. The third stage consisted in testing the programme on a group of six caregivers who did not take part in the workshops and in evaluating it qualitatively (for details, see Ducharme et al., 2001). There- after, a multi-centre randomized study was completed. The overarching purpose of that study, reported in this article, was to test the efficacy of the intervention programme developed during the pilot study in enhancing the mental health of women caregivers of a relative with dementia living in a long-term care setting. Theoretical and empirical support of the programme The intervention programme is based on a perspective of empowerment, globally defined as a process by which persons develop, through concrete 25 ducharme et al.: the 'taking care of myself' programme 03 ducharme (ds) 13/12/04 2:51 pm Page 25 actions, a sense of being able to exercise greater control over aspects of their psychosocial reality that matter to them (Zimmerman, 1995). In addition, the programme rests on the theoretical model of stress and coping developed by Lazarus and Folkman (1984) in which caregivers are considered as persons experiencing stressful situations that result from transactions with the environment deemed to exceed their resources and that necessitate coping efforts. According to this model, the develop- ment of efficacious interventions must afford a predominant role to the cognitive appraisal of stressors and resources, to the perception of control, and to coping strategies as protective factors in health. Persons evaluate the stress that they are faced with in a situation (e.g. that of care- givers of an institutionalized relative with dementia) and their resources for responding to it. They then use coping strategies to deal with the stress. Moreover, according to Lazarus (1991), how much control a person believes he or she can exercise over certain aspects of a situation is a major factor in the relationship between stress and mental health. Therefore, given their significant association with mental health, three elements of the stress-coping theoretical model constituted the concep- tual basis of the intervention programme, namely: (1) cognitive appraisal of stress; (2) perception of control; and (3) use of coping strategies to deal with stressors. Several empirical studies (Bombardier, D'Amico, & Jordan, 1990; Ducharme et al., 1997; Lévesque, Cossette, & Lachance, 1998; Nolan, Grant, & Keady, 1996; Nolan, Ingram, & Watson, 2002) have shown cognitive appraisal of stress to be a key mediating factor in the relationship between stress and mental health. Indeed, a given situation can have different meanings for different caregivers and can produce, depending on the meaning ascribed to it, different effects on mental health. A study con- ducted on a sample of 554 caregivers of elderly persons revealed that per- ceived stress explained 47 percent of the variance in psychological problems (Nolan, Grant, & Ellis, 1990). The study by Lévesque et al. (1999) carried out on caregivers in an institutional setting showed also that per- ceived stress was significantly associated with psychological distress in care- givers. Where perceived control is concerned, results from epidemiological and psychological studies have indicated a relationship with mental health (Israel, Checkoway, Schulz, & Zimmerman, 1994; Schulz, O'Brien, Bookwala, & Fleissner, 1995). More specifically, the study by Wallerstein (1992) demonstrated an accrued proneness to illness in persons who experienced situations that made multiple demands (stress) on them and who lacked the support or skills to exercise control over their life. Also, the study by Yates, Tennstedt, and Chang (1999) indicated that the higher 26 dementia 4(1) 03 ducharme (ds) 13/12/04 2:51 pm Page 26 the level of perceived control in caregivers, the less they were at risk of suffering from psychological distress when degree of perceived stress was controlled for. In short, perceived control appears to have a unique effect on mental health in caregivers. Finally, Pearlin, Mullan, Semple, and Skaff (1990) and Israel et al. (1994) reported that how much control people believe they can exercise over certain aspects of their situation is a factor that plays a major role in stress management and in mental health. According to the empirical literature (see Nolan et al., 1996, 2002), the use of certain coping strategies to deal with stressful situations also has positive effects on mental health. In this regard, the cognitive strategy of reframing has been linked to a better state of psychological well-being (Aldwin & Revenson, 1987; Carver et al., 1993; Ducharme et al., 1997). Similarly, the instrumental strategy of problem solving (when aspects of a situation are modifiable) and stress symptom management strategies have been linked to the mental health of family caregivers (Ducharme, Ricard, Duquette, Lévesque, & Lachance, 1998; Kahana, Biegel, & Wykel, 1994; Lévesque, Ricard, Ducharme, Duquette, & Bonin, 1998). Finally, in a recent critical review, Kneebone and Martin (2003) found that problem solving is beneficial to caregivers of people with dementia. The 'Taking Care of Myself' intervention programme Co-constructed with the caregivers who took part in the pilot study,'Taking Care of Myself' is a psychoeducational group programme geared to: (1) cognitive appraisal of stressors; (2) empowerment through awareness by caregivers of their strengths and capacity to change their perception of stress and exercise control over their environment; and (3) utilization of three coping strategies for dealing with stressful situations, namely problem solving, reframing and stress symptoms management. The programme consists of 10 90-minute weekly sessions for groups of six to eight caregivers. It covers the following six themes: (1) how to feel at ease with my relative; (2) how to express my point of view to health care staff; (3) how to avoid emotional torment; (4) how to deal with small daily losses and prepare myself for the ultimate loss of my relative; (5) how to identify and call upon my support network and community services; and (6) how to reorganize my life after my relative's institutionalization and take care of myself (see Ducharme et al., 2001). A participatory approach is used (e.g. discussions, written exercises between sessions, role playing), centred on the actual concerns of caregivers in order to foster transfer of the strategies learned.1 27 ducharme et al.: the 'taking care of myself' programme 03 ducharme (ds) 13/12/04 2:51 pm Page 27 Method Design and hypotheses The efficacy of the programme was tested using an experimental evaluative design with pre- and post-tests on three groups. Subjects in the experi- mental group (EG), that is those who took part in the 'Taking Care of Myself' programme, were compared against those in a control group (CG) who were subjected to no programme and those in a comparison group for the purpose of controlling for a group effect (Hawthorne effect). Participants in the comparison group (designated as AG for Alzheimer group) benefited from a programme of equal duration, that is, of 10 weekly sessions developed independently by a Quebec Alzheimer Society and offered by its personnel. Measures were taken for the three groups two weeks prior to the start of the programme (T1) and at the end of the pro- gramme (T2). To document caregivers' perception of the relevance of the experimental programme, qualitative data were collected at the last group session through open-ended questions. The efficacy study was coupled with an examination of programme implementation for the EG in order to avoid the attribution of effects to a programme insufficiently implemented (Dobson & Cook, 1980). The hypotheses were that, compared with those in the CG and the AG, the caregivers in the EG would: (H1) report less psychological distress and less role overload; (H2) would perceive significantly less stress related to their caregiving situation; (H3) would use three coping strategies (problem solving, reframing and stress symptoms management) significantly more often; and (H4) would report significantly greater competence dealing with health care staff (see Figure1). Sampling and participants Twenty-seven public long-term care and residential centres (equivalent to long-term care hospitals or nursing homes), where a majority of residents were French-speaking, were randomly selected among the centres in the Montreal area (Canada) to participate in the study (only one centre refused to participate). The centres were then randomly assigned into the study's groups. The inclusion criteria for caregivers were as follows: participants had to be the daughter or spouse with primary responsibility for a relative (primary caregiver) who had been living in the residential centre for at least six months and who had been diagnosed with irreversible dementia. Exclusion criteria were that the caregivers could not be receiving help from a support group or be in psychotherapy at the time of the study. A statisti- cal power analysis (Erdfelder & Buchner, 1996) had determined that the sample size had to be 41 participants per group (alpha = .05; beta = .8; 28 dementia 4(1) 03 ducharme (ds) 13/12/04 2:51 pm Page 28 moderate effect size). In all, 137 French-speaking adult-daughter primary caregivers took part in both times of the study (EG = 45 caregivers, AG = 51 and CG = 41). Spouse caregivers were excluded from the analyses given that they were few and unevenly distributed across the three groups. The participation rate for the caregivers was 56 percent and the major refusal reason was the lack of time (42%). Some caregivers dropped out between T1 and T2 (n = 40) and the primary reason was the death of the institutionalized relative. A comparison between caregivers who dropped out and those who completed the study yielded no significant differences between the groups in terms of age, primary caregiver role prior to relative's institutionalization and paid work. However, the caregivers who dropped out had significantly fewer years of schooling than did the care- givers who completed the study (12.5 versus 13.8 years; p < .05). To compare the three groups of caregivers on sociodemographic and selected descriptive characteristics, chi-square analyses were performed on categorical variables, whereas analyses of variance (ANOVA) were con- ducted on continuous variables, followed by post hoc tests. Compared with the caregivers in the CG, those in the EG were older, more often the primary 29 ducharme et al.: the 'taking care of myself' programme Stress coping Perceived control Coping strategies Cognitive appraisal of stress Perceived Stress: · Threat · Challenge · Centrality · Control by self · Informal and formal support · Uncontrollability · Global stress Competence dealing with health care staff Reframing Problem solving Stress management Role overload Psychological distress Figure 1 Theoretical model and study outcomes 03 ducharme (ds) 13/12/04 2:51 pm Page 29 caregiver prior to institutionalization, and fewer of them worked outside (paid work; see Table 1). Moreover, the caregivers in the AG had fewer years of schooling than did those in the EG and the CG. Overall, the attendance rate for the two programmes (EG and AG) was high. The caregivers in the EG attended 88 percent of the sessions and those in the AG, 84 percent (no significant group differences). Regardless of the group, only 12 percent of the caregivers had taken part in a support group prior to their relative's institutionalization. The institutionalized elderly relatives were mostly women, over 80 years of age and, as evidenced by their scores on the Cognitive Status Scale (Pearlin et al., 1990) completed by the caregivers (see Table 1, range from 8 to 40, low to high cognitive impairment), severely cognitively impaired. The Cognitive Status Scale is based on the Mini-Mental State Examination (MMSE; Folstein, Folstein, & McHugh, 1975). Pearlin et al. (1990) reported an r value of .65 between caregiver ratings on this scale and those provided by clinicians on the MMSE. Measurements Psychological distress The Psychological Distress Index, an adapted version of the Psychiatric Symptoms Index (Ilfeld, 1976) was used to measure psychological distress. This 14-item instrument (alpha at T1 of .88), of which both the French- and English-language versions have been shown to have sound psychometric properties (Préville, Potvin, Boyer, & Boulerice, 2000), had previously been used in a large-scale health survey of the Quebec population (Gouvernement du Québec, 1996). Respondents rated how often (1 = never to 4 = very often) they felt distressed in the past week (e.g. feeling tense or under stress). Role overload The scale developed by Pearlin et al. (1990), which had been validated in a study on 326 caregivers of a relative with dementia living at home and 229 caregivers of an institutionalized relative, served to measure perceived caregiver-role overload (e.g. you have more things to do than you can handle). The four items of this instrument (alpha at T1 of .73) are rated on a four-point scale (1 = not at all true to 4 = very true). This questionnaire, as well as all the original English-language instruments used in the study, was translated according to a back-translation procedure (Haccoun, 1987). Stress appraisal The Stress Appraisal Measure (SAM; Peacock & Wong, 1990), which covers seven dimensions each comprising four items, served to assess perceived threat, perceived challenge, centrality of the stressful 30 dementia 4(1) 03 ducharme (ds) 13/12/04 2:51 pm Page 30 31 ducharmeetal.:the'takingcareofmyself'programme Table 1 Sociodemographic characteristics of the daughter caregivers (N = 137) and their institutionalized relatives Variable Experimental group (N = 45) Alzheimer group (N = 51) Control group (N = 41) N (%) Mean (SD) N (%) Mean (SD) N (%) Mean (SD) Caregivers Age (years)a 57.0 (6.5) 54.5 (7.0) 51.5 (8.4) Years of schoolingb 14.5 (3.6) 12.4 (3.0) 14.7 (3.5) Primary caregiver prior to institutionalizationc 38 (84.4) 38 (74.5) 25 (61.0) Annual income (Canadian standards) Lower middle class 12 (24.5) 13 (25.8) 10 (23.5) Middle class 16 (35.8) 19 (36.4) 13 (31.4) Upper middle class 17 (39.7) 19 (37.8) 18 (45.1) Paid workd 19 (42.2) 28 (54.9) 28 (68.3) Institutionalized relatives Woman 40 (88.9) 47 (92.2) 36 (90.2) Age (years)e 87.0 (5.3) 84.3 (6.7) 82.3 (7.2) Cognitive status 30.0 (8.2) 29.3 (7.1) 30.0 (7.5) Institutionalization (months) 37.4 (30.4) 34.6 (23.9) 40.6 (27.1) aDifference between caregivers in the EG and the CG, p .01; bdifference between caregivers in the AG and the EG and the CG, p .01; cdifference between caregivers in the EG and the CG, p .01; ddifference between caregivers in the AG and the EG and the CG, p .01; edifference between relatives in the EG and the CG, p .01. 03ducharme(ds)13/12/042:51pmPage31 situation, control by self, informal/formal social support, uncontrolability and global stress relative to the fact of being a caregiver of an insti- tutionalized relative with dementia. The SAM has been subjected to psy- chometric evaluation and the French-language version has demonstrated reliability and construct validity comparable to those of the original English-language version (Pelchat, Ricard, Lévesque, Perreault, & Polomino, 1994). Its items are rated on a five-point scale (1 = not at all to 5 = entirely and alphas at T1 varied from .64 to .88). Coping strategies Three coping strategies were measured using the Carers' Assessment of Managing Index (CAMI; Nolan, Keady, & Grant, 1995), which was developed on the basis of an inductive study involving 100 caregivers and validated on a sample of 266 caregivers. A principal component factor analysis with varimax rotation performed on the present study's data set indicated the presence of three coping strategies as in the original scale: problem solving (seven items, alpha at T1 of .77, eigenvalue of 4.09), reframing (four items, alpha of .60, eigenvalue of 1.60) and stress symptoms management (five items, alpha of .61, eigenvalue of 1.41). The scale serves to measure frequency of utilization of these three coping strategies (1 = never/nearly never to 4 = nearly always/always). Competence dealing with health care staff This variable was measured by means of the instrument developed by Koren, DeChillo, and Friesen (1992), which covers 12 indicators (knowledge, attitudes and behaviours) of control in relations with health care staff (e.g. I make sure that the pro- fessionals clearly understand my point of view regarding the care that my relative requires). Items are rated on a four-point scale (1 = not at all true and 4 = very true). It has been the subject of repeated psychometric analyses on samples of families of persons with mental health problems receiving health services (Koren et al., 1992). Slight changes were made to adapt this instrument to the institutional setting (alpha at T1 of .86). Procedure Standardized interviews lasting between 60 and 90 minutes were con- ducted by the same interviewers at T1 and T2. These interviewers received two days' training. To keep the interviewers blind to assignment, the long- term care and residential centres were randomly distributed into the study's groups only after the interviews at T1. Prior to the interview at T1, each caregiver signed the consent form to participate in the study approved by the Research Ethics Committee of the Institut universitaire de gériatrie de Montréal. All the facilitators for the 'Taking Care of Myself' programme were 32 dementia 4(1) 03 ducharme (ds) 13/12/04 2:51 pm Page 32 specialized nurse clinicians (with the exception of one psychologist) who had experience in group facilitation and knowledge of the issues regarding family caregivers and care for persons with dementia living in long-term care settings. These facilitators received four days' training through a detailed guide to the intervention programme and active training methods (audio recordings, role playing). The Alzheimer Society that took part in the study was responsible, unbeknown to the research team, for training the facilitators who worked with the AG. The implementation of the 'Taking Care of Myself' programme was verified by the two principal investigators by listening to the audiotapes of the 10 sessions of the programme to ensure that the facilitators covered the proposed content. The facilitators also had to complete a logbook after each session in order to make sure that the programme was going according to plan. Statistical analyses For the efficacy analysis, four multivariate analyses of variance (MANOVAs) were performed to compare the post-test scores at T2 for the EG, AG and CG. The pre-test scores, as well as years of schooling and paid work (there were significant differences between groups on these two variables), were introduced as covariates. In three of the four MANOVAs, variables were grouped according to their conceptual links (i.e. the seven dimensions of the SAM, the three coping strategies, psychological distress and role overload, while competence dealing with health care staff was analyzed alone). A test of parallelism (homogeneity of the regression slopes) was performed to ensure that the correlation between baseline and post-test scores was the same for the three groups; no significant group difference was found. The results of the MANOVAs showed no significant group differences. As mentioned by several authors (Cooke, McNally, Mulligan, Harrison, & Newman, 2001; Schulz, 2000; Zarit & Leitsch, 2001), intervention studies using control groups have yielded either non-significant or modest results regarding caregiver mental health. One problem in these studies has been the high variability in the distribution of baseline scores for depend- ent variables. This variability has to do with the 'floor and ceiling' effects on outcomes measures. It is a fact that participants at either end of a scale have little chance for significant improvement. For example, when care- givers report few problems coping with their caregiving role, there is little chance for improvement over time (ceiling effect) and, 'as a result, the power for detecting change is reduced' (Zarit & Leitsch, 2001, p. S94). Moreover, relying on means differences as a measure of change can be mis- leading (Bédard, Pedlar, Martin, Malott, & Stones, 2000). For instance, if 33 ducharme et al.: the 'taking care of myself' programme 03 ducharme (ds) 13/12/04 2:51 pm Page 33 meaningful changes occur in opposite directions, 'the overall mean will suggest that there is no change overtime' (Bédard et al., 2000, p. 309), although significant changes may be observed within subgroups (Bédard et al., 2000). As suggested recently by Zarit and Leitsch (2001), an alternative is to use prediction analysis (Hildebrand, Laing, & Rosenthal, 1977). Compared with MANOVA, which serves to analyze the mean difference between groups, prediction analysis considers successful and unsuccessful outcomes based on specific criteria. Under this analysis, participants are divided into quartiles according to baseline scores obtained for each dependent variable. For each quartile, criteria for successful and unsuccessful outcomes are defined in terms of expected change in the dependent variables between T1 and T2 measured in standard deviation units. Table 2 shows the different criteria for successful and unsuccessful outcomes according to each quartile. For example, subjects with the highest role overload scores (first quartile) must achieve substantial improvement for a successful outcome, whereas those with moderately high (second quartile) or moderately low (third quartile) scores need to achieve a smaller improvement for a successful outcome. Subjects with very low role overload scores (fourth quartile), instead, must show stability or no more than a slight deterioration. The criteria presented in Table 2 are those used by Whitlach, Zarit, and von Eye (1991) to evaluate the efficacy of an inter- vention programme intended for caregivers of persons with dementia. These criteria take into account the effect of regression towards the mean in the case of extreme scores and the fact of participating in the intervention or not. Under the prediction model, successful outcomes are expected for care- givers taking part in one of the interventions (EG or AG) and unsuccessful outcomes for caregivers in the CG. In other words, the model proposes an association between intervention and successful outcomes. The del statistic is used to test the prediction model2 and the z values serve to test whether the observed values correspond to expected values predicted under the assumption of association between predictors and outcome variables. Results Results from prediction analyses As there were three caregiver groups to compare, a first prediction analysis was performed on the three groups simultaneously. However, after verifi- cation of possible multicollinearity across dependent variables, one dimen- sion of the SAM 'global stress' (see measurements) was excluded from 34 dementia 4(1) 03 ducharme (ds) 13/12/04 2:51 pm Page 34 the prediction analysis, given its high correlation coefficients with other dimensions of the SAM. In this first prediction analysis, significant z values were obtained in the case of several dependent variables (data not shown). For these variables alone, two other prediction analyses were run, one between the EG and the CG and the other between the AG and the CG (analyses comparable to post hoc tests in MANOVAs). EG versus CG The del and z values obtained when the EG and the CG were compared indicated that the distribution of the values corresponded to the prediction model in the case of seven dependent variables listed in Table 3. According to the del values, our proposed model described the data better (between 19% and 39%) than did the model of no association between the 'Taking Care of Myself' programme and these variables. It is worth noting that the del values were particularly high for perceived threat and refram- ing. In this regard, our proposed model described the data 35 percent better where perceived threat was concerned and 39 percent better in the case of reframing than did the model of no association. In addition, more caregivers in the EG (51.1% to 71.1%) than those in the CG obtained successful outcomes predicted for each of the seven vari- ables presented in Table 3. For the caregivers in the CG, the inverse was observed. Fewer of them (29.3% to 41.5%) than of those in the EG obtained non-predicted successful outcomes. Also, more of them recorded unsuccessful outcomes (58.5% to 70.7%) as predicted, compared with the caregivers in the EG (28.9% to 48.9%). The proportion of caregivers in the EG with successful outcomes was particularly high (nearly two thirds or more) in the case of three depend- ent variables: competence dealing with health care staff (62.2%), perceived threat (68.9%), and reframing (71.1%). Moreover, regarding competence 35 ducharme et al.: the 'taking care of myself' programme Table 2 Criteria for successful and unsuccessful outcomes Dependent variable Successful outcome Unsuccessful outcome First quartile/highest level Improvement 1.0 SD Stability or improvement < 1.0 SD Second quartile/moderately Improvement 0.5 SD Stability or improvement high level < 0.5 SD Third quartile/moderately Improvement > 0 SD Stability or deterioration low level < 0 SD Fourth quartile/lowest level Stability or slight Deterioration > 0.5 SD deterioration < 0.5 SD Successful outcomes are expected for the experimental group and Alzheimer group while unsuccessful outcomes are expected for the control group. 03 ducharme (ds) 13/12/04 2:51 pm Page 35 36 dementia4(1) Table 3 Comparison between groups for successful and unsuccessful outcomes on dependent measures at T2 Dependent variable Experimental group Control group Alzheimer group Control group (N = 45) (N = 41) (N = 51) (N = 41) Successful Unsuccessful Successful Unsuccessful Del Successful Unsuccessful Successful Unsuccessful Del outcome outcome outcome outcome (z) outcome outcome outcome outcome (z) Control by self 25 (55.6) 20 (44.4) 13 (31.7) 28 (68.3) 0.24 28 (54.9) 23 (45.1) 13 (31.7) 28 (68.3) 0.23 (2.27)** (2.25)* Perceived threat 31 (68.9) 14 (31.1) 14 (34.2) 27 (65.8) 0.35 27 (52.9) 24 (47.1) 14 (34.2) 27 (65.8) 0.18 (3.43)*** (1.81)* Informal/formal 26 (57.8) 19 (42.2) 16 (39.1) 24 (60.9) 0.19 39 (76.5) 12 (23.5) 16 (39.1) 25 (60.9) 0.38 social support (1.77)* (3.86)*** Role overload 23 (51.2) 22 (48.8) 13 (31.7) 28 (68.3) 0.19 30 (58.8) 21 (41.2) 13 (31.7) 28 (68.3) 0.27 (1.83)* (2.66)** Reframing 32 (71.1) 13 (28.9) 13 (31.7) 28 (68.3) 0.39 30 (58.8) 21 (41.2) 13 (31.7) 28 (68.3) 0.27 (3.97)*** (2.66)** Competence dealing 28 (62.2) 17 (37.8) 17 (41.5) 24 (58.5) 0.21 with health care staff (1.96)* Perceived challenge 23 (51.1) 22 (48.9) 12 (29.3) 29 (70.7) 0.22 (2.07)* * Del with one-sided z-value, p .05. ** Del with one-sided z-value, p .01. *** Del with one-sided z-value, p .001. 03ducharme(ds)13/12/042:51pmPage36 dealing with health care staff and perceived threat, the proposed model was confirmed only when the EG was compared with the CG (Table 3). AG versus CG More caregivers in the AG (52.9% to 76.5%) obtained successful outcomes than did those in the CG (31.7% to 39.1%) on five dependent variables. These variables were common to both treatment groups (AG and EG), as illustrated in Table 3. However, except for control by self, the percentage of caregivers in the EG and in the AG with success- ful outcomes differed markedly. Indeed, the percentage of caregivers in the EG with successful outcomes was higher with respect to perceived threat (68.9% in the EG versus 52.9% in the AG) and reframing (71.1% versus 58.8%, respectively). Conversely, more caregivers in the AG than in the EG obtained successful outcomes relative to informal/formal social support (76.5% versus 57.8%, respectively) and role overload (58.8% and 51.2%, respectively). In summary, successful outcomes were more likely only under the EG condition for competence dealing with health care staff and perceived chal- lenge. Other successful outcomes were more likely for both treatment groups (EG and AG) and unsuccessful outcomes were more likely under the CG condition for all these variables. It is important to underline that evidence in prediction analysis is not the same as in MANOVA. Prediction analysis confirms whether observed outcomes conform to predicted outcomes (successful outcomes for EG or AG versus unsuccessful outcomes for CG, whereas MANOVAs confirm significant differences between groups). Caregivers' perception of the 'Taking Care of Myself' programme During the last audiotaped session of the programme, the facilitator took stock of the 10 sessions in terms of their relevance in producing changes in the daily life of participant caregivers. More precisely, referring to each theme covered during the programme (see description of the programme), the facilitator asked participants to discuss how each topic was useful with respect to changes achieved in daily life since the start of the programme. Examples of questions included: 'Can you tell me what effects the session concerning how to express your point of view to health care staff had on your daily life? Can you give some concrete examples of the changes this aspect of the programme had on your behaviour?' The study's two principal investigators analysed audiotaped data indi- vidually with a view to producing a picture of the relevance of the pro- gramme as perceived by the caregivers. As illustrated by the following extracts from verbatim transcriptions, the caregivers reported having ben- efited from learning: 37 ducharme et al.: the 'taking care of myself' programme 03 ducharme (ds) 13/12/04 2:51 pm Page 37 · To communicate better with their relative and to render their visits more pleasant: 'I'm more patient during the visits. I can follow what my mother says instead of frustrating her.' · To express their point of view to the nursing staff:'I managed calmly to let my dissatisfaction with my mother's diet be known. We managed to find ways of correcting the situation.' · To practise reframing (this coping strategy was unknown to most care- givers and is the one that most struck a chord in the participants.):'The programme allowed me to step back from my situation.' 'This changes our way of looking at things . . . and of situations.' 'For me, it was learning to focus on the disease rather than on the person. When the person acts that way, it's the disease and not the person doing that'. · To reflect upon the acceptance of loss (although the topic of grief and loss was the most difficult to deal with, caregivers were unanimous about the necessity of covering it in the programme): 'I became aware of how I responded to loss and of my resources for dealing with it.' · To take care of myself: 'What happened that I never believed could happen is that I would be able not to come every day. . . . This was a great victory.'I'm planning a vacation . . . it's a first.''Everything having to do with guilt . . . it helped me a lot to change things in that regard and to try to dedicate more time to me and my husband.' · To become aware of their strengths (empowerment): 'I tell myself that I'm able and I feel less impotent.''You have to assert yourself, that's right, in life you have to express what matters to you.' In sum, the content of the programme as a whole was perceived to be relevant and seemed to help the participants make changes in their ability to modify stressors and exercise control over their environment through a heightened belief in their potential. Discussion The purpose of this study was to test the efficacy of the 'Taking Care of Myself' programme, a psychoeducational group intervention based on an empowerment approach and on an explicit theoretical model developed by Lazarus and Folkman (1984). To this end, three groups of middle-aged daughter caregivers were compared at two times. One group of caregivers (EG) took part in this intervention programme, one group (AG) in a com- parison programme offered by an Alzheimer Society, and a third group, a control group (CG), in no programme. As was the case in many evaluative studies of interventions intended for caregivers (Cooke et al., 2001; Zarit & Leitsch, 2001), MANOVA results 38 dementia 4(1) 03 ducharme (ds) 13/12/04 2:51 pm Page 38 showed no significant group differences, whereas the method of specify- ing change scores according to quartiles, as proposed in prediction analysis, provided support for the efficacy of treatment conditions. The successful outcomes of many caregivers were thus not obscured while this is what occurred when traditional MANOVAs are performed. A growing number of authors (Barlow, 1981; Bédard et al., 2000; Jacobson, Follette, & Revenstorf, 1984; Kazdin, 1977, 1999; Pusey & Richards, 2001; Schulz et al., 2002) have pointed out the difficulty of the traditional method of multivariate analyses to evaluate the efficacy of psychoeducational interventions. In this regard, Whitlach et al. (1991) and Zarit and Leitsch (2001) recognized the pertinence of analyzing data from evaluative studies using alternative strategies, such as prediction analysis. Prediction analysis is congruent with the notion of the clinical signifi- cance of results, that is, the 'practical or clinical' value of the effects of an intervention or the difference that an intervention makes in the daily life of the persons who benefited from it (Kazdin, 1999). In this regard, Kazdin (1977) recommended evaluating the percentage of participants who modified their behaviour following an intervention, given that the level of change for each person is what determines whether an intervention is clini- cally acceptable. Jacobson and Truax (1991), for their part, underscored that the proportion of participants with positive outcomes is a valid indicator of the clinical significance of results and an indicator just as important as group mean differences in evaluating the effects of psycho- educational interventions. In fact, it has been acknowledged for several decades already, particularly in psychotherapy (Jacobson & Truax, 1991), behavioural therapy (Hugdahl & Ost, 1981) and family therapy (Jacobson, 1985), that statistically significant mean differences are not necessarily clinically significant (Barlow, 1981; Kazdin & Wilson, 1978). In other words, although observed group differences must be greater than those attributable to chance in order to be considered statistically significant, this criterion ignores intra-group variability, which is just as important as the mean effect of a treatment on participants as a whole (Barlow, 1981; Kazdin, 1977). The criteria that we used in our prediction analyses, which took into account improvement, stability or deterioration based on standard deviations from the mean, are of particular interest in that they are objective criteria that provide both statistical and clinical information (Jacobson et al., 1984). In the light of the prediction analyses, successful outcomes were more likely only under the EG condition for competence dealing with the health care staff and perceived challenge related to being the caregiver of an elderly relative (e.g. motivation to find solutions on account of the caregiver role). It is not unreasonable to think that the frame of reference 39 ducharme et al.: the 'taking care of myself' programme 03 ducharme (ds) 13/12/04 2:51 pm Page 39 underlying the 'Taking Care of Myself' programme, that is, a general empowerment approach, which is complementary to the stress and coping theoretical model, might have contributed to changes in these two indi- cators of mental health. Our findings also revealed that both treatments (EG and AG) were successful with a majority of caregivers on five common variables. These results might be due to the fact that the two intervention programmes shared numerous similarities in terms of both structure and modality (10 90-minute sessions, facilitated by competent professionals). Moreover, an a posteriori examination of the content of the programme offered by the Alzheimer Society showed that, aside from information on Alzheimer's disease and on the behaviours of demented persons, a number of themes covered under this programme were similar to those covered in the other, i.e. emotional well-being of families, available community resources, inter- actions with the health care staff and life after institutionalization of a family member. Certain hypotheses were not confirmed, particularly those concerning a reduction in psychological distress and more frequent use of problem- solving and stress-symptoms-management strategies. Regarding psycho- logical distress, results are in line with those of previous studies (Schulz, 2000; Zarit & Leitsch, 2001). This type of mental health indicator, like those measuring depression, may not be sensitive enough to change. This criti- cism has often been raised in the literature, where it has been suggested to measure proximal or intermediary variables targeted more directly by the intervention programmes (Zarit & Leitsch, 2001). An alternative expla- nation is that a measurable improvement in this regard may occur only after a long delay. Also, we might wonder whether the content and duration of the programme were sufficient to reduce symptoms in persons with a high degree of psychological distress. Where problem solving and stress symptoms management were concerned, caregivers did not mention these themes in their discourse at the last session of the programme when we assessed the programme content's relevance. For decades, authors such as Minkin and colleagues (1976) have rec- ommended that all applied research be socially valid, which means that interventions should be evaluated for their relevance in the daily life of participants. The evaluation conducted during the last session of the pro- gramme provided this sort of information. However, our approach presents certain limitations. Above all, as the same person who facilitated the pro- gramme also led this session, social desirability might have swayed the participants' discourse. This notwithstanding, the content pertaining to the caregivers' capacity to express their point of view to health care staff, to take care of themselves and to avoid emotional torment by looking at their 40 dementia 4(1) 03 ducharme (ds) 13/12/04 2:51 pm Page 40 relative's institutionalization from a different angle (reframing) was per- ceived by the participants to be particularly important. In this regard, the comments made were congruent with certain statements on the Koren scale (Koren et al., 1992) regarding competency to deal with health care staff (e.g. capacity to express one's opinion to the staff members regarding the care received by the relative) and with statements on the CAMI scale (Nolan et al., 1995) regarding coping behaviours (e.g. believing in yourself and in your ability to handle the situation; keep some free time for yourself). These data underscore the importance of this type of intervention, which goes beyond the mere provision of information and the opportunity to vent emotions by providing concrete learning tools to deal with the difficult context of the institutionalization of a relative with dementia. It is important to emphasize the caregivers' impressive participation rate in both the EG sessions (88%) and the AG sessions (84%). We had initially considered conducting an analysis in which the dosage of the intervention was to be taken into account with the aim of avoiding a type II error (Sidani, 1998); this measure proved unnecessary. The participation rate reflects the caregivers' great need to learn new ways of coping. However, we must point out that a large number of caregivers initially refused to participate in the programme because of lack of time. This fact reflects the current situation of caregivers who are solicited both by their caregiver role towards their relative and their personal, family and social responsibilities, and underscores the importance of showing due concern for this reality in social policies. Implications of the findings and conclusion It is with a view to giving due consideration to the health needs specific to caregivers of an institutionalized relative that our intervention programme was based on an inductive and participatory pilot study. The results of this evaluative study document the validity of the intervention model geared to fostering the mobilization of women whose voice has seldom been heard. This programme seems closely tied in with the daily living situations of caregivers as documented by the analysis of the data collected at the last session. Taking into account these considerations, we believe that this study provides avenues for guiding clinical practice in the areas of both individual and group interventions and proposes innovative services that take into account the needs of family caregivers in long-term care settings. Con- sidering how this programme targets the behaviours of caregivers towards their relative and their way of dealing with the health care system, we hope it will benefit families as much as persons with dementia living in an insti- tutional setting. 41 ducharme et al.: the 'taking care of myself' programme 03 ducharme (ds) 13/12/04 2:51 pm Page 41 As mentioned earlier, a chafing point reported by the caregivers in the course of our pilot study had to do with the little control they have over the quality of care received by their relative, which stemmed from being mere spectators of care rather than expert carers. The recognition of the place of caregivers goes well beyond the consideration given them as sources of information and calls upon their knowledge and potential to become initiators of innovative avenues of care. Family caregivers have the right not only to be informed of the care offered their relative but also to actively participate in it. The little say that families are given in institutional settings has been documented in other studies as well (Allen, 2000; Opie, 1997). According to Allen (2000), despite the fact that caregivers have a long trajectory of care and expertise, health care staff rarely take into account caregivers' knowledge. The study underscores the need for adjust- ing institutional policies. In this regard, it is necessary to reconceptualize care and services in the aim of supporting families, respecting their desire to be involved, ensuring better coordination between professional and informal support, helping to prevent burnout and preserving their health. In order to ensure that this reconceptualization is effected properly, it is imperative that both staff and management at long-term care centres lend serious reflection to the philosophy of care and services for families. Management must valorize the support provided by health care staff to caregivers and recognize the competence and time that providing this support to families calls for. Indeed, health care staff have the feeling that the time they afford families is not valorized and goes unnoticed (Foner, 1994). In terms of social policies, at a time when health care budgets are being cut everywhere in the western world, caregivers are considered much more as co-workers or resources to be used in caring for their elderly relatives than as potential clients of the health care system. If we wish to avoid the heavy health consequences that long-term caregiving engenders, these caregivers warrant that attention be paid to their own needs and the recog- nition of their social contribution. Acknowledgments This project was funded by the Alzheimer Society of Canada and le Fonds de la recherche en santé du Québec. Many thanks to Steven H. 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The American Journal of Alzheimer's Care and Related Disorders and Research, 7(4), 815. Yates, M.E., Tennstedt, S., & Chang, B. H. (1999). Contributors to and moderators of psychological well-being for informal caregivers. Journal of Gerontology:Psychological Sciences, 54B(1), 1222. Zarit, S.H., & Leitsch, S. A. (2001). Developing and evaluating community based intervention programs for Alzheimer's patients and their caregivers. Aging & Mental Health, 5 (Supplement 1), S84S98. Zimmerman, M. (1995). Psychological empowerment: Issues and illustrations. American Journal of Community Psychology, 23(5), 581598. Biographical notes F R A N C I N E D U C H A R M E , RN, PhD, is a full professor at the Faculty of Nursing of the Université de Montréal (Québec, Canada) and a researcher at the centre de recherche de l'Institut universitaire de gériatrie de Montréal, a research centre on aging. She is a senior research fellow funded by the Fonds de la recherche en santé du Québec and Chair of the Desjardins Research Chair in Nursing Care for Seniors and their Families. Her research interests include the evaluation of interventions 46 dementia 4(1) 03 ducharme (ds) 13/12/04 2:51 pm Page 46 for caregivers of the elderly at home or in long term care settings. Address: Centre de recherche, Institut universitaire de gériatrie de Montréal, 4565 Queen-Mary Road, Montréal (Qc), Canada, H3W 1W5. [email: francine.ducharme@umontreal.ca] L O U I S E L É V E S Q U E , RN, MSc, is an emeritus professor at the Université de Montréal. She is a researcher at the centre de recherche, Institut universitaire de gériatrie de Montréal. Her research interests concern the development and the evaluation of interventions for caregivers of a relative with dementia living at home or in an institution. Address: Centre de recherche, Institut universitaire de gériatrie de Montréal, 4565 Queen-Mary Road, Montréal (Qc), Canada, H3W 1W5. [email: louise.levesque@umontreal.ca] L I S E L A C H A N C E , PhD, is a psychologist and a specialist in human resources. She is professor at the Faculty of Education and a Canada Research Chair of Functioning in Society and Reconciling Life Roles at Laval University. She is also a researcher at the Centre de recherché sur l'éducation et la vie au travail, a research centre on education and work life. She has been interested in the field of social psychology for the past 10 years. Her major interests include work/family conflict, coping with multiple roles and social functioning. Address: Pavillon des Sciences de l'Education, Laval University, Quebec, Canada G1K 7P4. [email: Lise.Lachance@fse.ulaval.ca] F R A N C I N E G I R O U X , MSc, is a statistician at the Centre de recherché de l'Institut universitaire de gériatrie de Montréal. Address: Centre de recherche, Institut universitaire de gériatrie de Montréal, 4565 Queen-Mary Road, Montréal (Qc), Canada, H3W 1W5. [email: girouxf@magellan.umontreal.ca] A L A I N L E G AU LT , MA, is a lecturer at the Faculty of Nursing of the Université de Montréal. He is a PhD candidate in nursing at the same university. His research interests concern family caregiving after institutionalization of an elderly parent in a nursing home. Address: Faculté des sciences infirmières, Université de Montréal, P.B. 6128, succursale Centre-ville, Montréal (Qc), Canada, H3C 3J7. [email: alain.legault@umontreal.ca] M I C H E L P R É V I L L E is assistant professor in the Faculty of Medicine, Université de Sherbrooke, and researcher at the Research Center on Aging, Sherbrooke Geriatric University Institute. Address: Centre de recherche sur le vieillissement, Institut universitaire de gériatrie de Sherbrooke, 1036 rue Belvédère sud, Sherbrooke (Qc), Canada, J1H 4C4. [email: mpreville@courrier.usherb.ca] 47 ducharme et al.: the 'taking care of myself' programme 03 ducharme (ds) 13/12/04 2:51 pm Page 47</meta-value>
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<back><notes><p><list list-type="order"><list-item><p>1. An English version of the programme is available and can be obtained from the first author.</p>
</list-item>
<list-item><p>2. Unlike chi-square analysis, prediction analysis compares cell frequencies only for specified prediction cells (those presented in Table 2) rather than across all cells.</p>
</list-item>
</list>
</p>
</notes>
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<abstract lang="en">The purpose of this randomized study was to test the efficacy of an intervention programme entitled ‘Taking Care of Myself’ on selected indicators of mental health of daughter caregivers of elderly parents with dementia living in a long-term care setting. The programme is based on an empowerment perspective and on a stress and coping theoretical framework. Three groups of caregivers were compared: one took part in the experimental programme (EG, N= 45), one in a comparison programme offered by a Quebec Alzheimer Society (AG, N = 51), and another was a control group (CG, N = 41). Two successful outcomes are unique to the EG condition, that is, competence dealing with health care staff and perceived challenge of the caregiver role. Prediction analyses also provide statistical support for the efficacy of the EG and AG conditions to produce successful outcomes with respect to common indicators (perceived threat and role overload, control by self, informal/formal social support, and use of the coping strategy of reframing). These results provide avenues of intervention for promoting the mental health of caregivers of an institutionalized relative.</abstract>
<subject><genre>keywords</genre>
<topic>institutionalization</topic>
<topic>intervention</topic>
<topic>mental health</topic>
<topic>placement</topic>
<topic>spouse carers</topic>
</subject>
<relatedItem type="host"><titleInfo><title>Dementia</title>
</titleInfo>
<genre type="journal">journal</genre>
<identifier type="ISSN">1471-3012</identifier>
<identifier type="eISSN">1741-2684</identifier>
<identifier type="PublisherID">DEM</identifier>
<identifier type="PublisherID-hwp">spdem</identifier>
<part><date>2005</date>
<detail type="volume"><caption>vol.</caption>
<number>4</number>
</detail>
<detail type="issue"><caption>no.</caption>
<number>1</number>
</detail>
<extent unit="pages"><start>23</start>
<end>47</end>
</extent>
</part>
</relatedItem>
<identifier type="istex">53F86962044457E4AFE4D8AEBDE68DDAE1C4A56D</identifier>
<identifier type="DOI">10.1177/1471301205049189</identifier>
<identifier type="ArticleID">10.1177_1471301205049189</identifier>
<recordInfo><recordContentSource>SAGE</recordContentSource>
</recordInfo>
</mods>
</metadata>
<serie></serie>
</istex>
</record>
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