The International Journal of Psychosocial Rehabilitation

Burden of Caregivers of Mentally Ill Individuals in Israel:

Key words: Burden, Caregiver, Family, Mental illness, Participatory research

Introduction
Care for severely mentally ill individuals, particularly in the community, may carry a heavy burden, more so than care for other disabled individuals such as mentally retarded people (1). While this is true for any person involved in such care, e.g., resulting in clinician burnout (2), it is particularly true for close family members such as parents, many of whom take care of their mentally ill children for long (3). Such burden manifests in reduced caregiver well-being (4), which admittedly depends in part on caregiver factors such as caregiving style (5). Moreover, such burden may manifest in reduced well-being of the mentally ill individuals themselves, e.g., due to impaired caregiver support (6).

Hence, caregiver burden, particularly that of closely involved family members such as parents, is important as an outcome measure in mental health care, so as to assess and reduce it for the well-being of both caregivers and the mentally ill. Indeed, the measurement of caregiver burden has been shown to enhance worker and administrator awareness of the need to reduce such burden in the health care field in general (7). This may be particularly important where reform is in the making, with a shift to the community, such as has been happening lately world-wide in the field of mental health care (8). This is so because with the shift to the community, caregivers such as families naturally take on a more central role. While the USA has only recently declared a need for additional reform in mental health care, particularly within the community (9), smaller localities have already moved ahead (10).

In 2000, Israel legislated the provision of psychiatric rehabilitation in the community, part of which is the support of caregiving families; yet adequate resources for such family support have not been provided. Furthermore, study of family burden in the mental health field is scant in Israel, although such study is central for rational service planning. In particular, there has been no use in Israel of a collaborative - participatory - framework, although such an approach could be helpful in that it addresses the concerns of the particular subjects being studied and hence is context-sensitive to socio-economic, cultural and personal conditions which differ across communities and individuals; admittedly, participatory study in this field has not commonly been attempted elsewhere (11).

The main purpose of this study is not necessarily to understand in-depth the burden of Israeli caregivers, nor to attempt to standardize a finalized tool to assess burden, but rather to explore the use of participatory research in the field of mental health care burden, so as to increase context-sensitivity. Thus, we wanted to develop, use and study a tool for measuring caregiver – mainly family – burden in collaboration with Israeli caregivers of mentally ill individuals, i.e., within a participatory research framework. In addition, we wanted to assess the extent and types of burden of Israeli family members of mentally ill individuals, and to examine the relation of such family burden to basic demographics.

 
We wanted to answer the following questions:

(b)                What is the burden of Israeli caregivers, i.e., family members, of mentally ill individuals, and how is it related to caregiver age,
 gender and kinship  relationship to the mentally ill individual in care?

 Method
During October to December of 2003, 53 family members (45, i.e., 85%, females; 7, i.e., 13%, males; and 1, i.e., 2%, unmarked gender) from the Israeli Forum of Families of Mental Health Clients (Otsma) anonymously answered at one point in time a caregiver burden questionnaire, as well as demographic questions of age, gender, race and kinship relation to the mentally ill individual in their care. No participants were related to each other, and all provided informed consent after receiving verbal and written information on the study.

 During the first half of 2003 the principal investigator (AR) collaborated with 3 elected representatives of Otsma, who consulted with other Otsma members, to generate a caregiver burden self-report questionnaire. Questions were suggested by the principal investigator and Otsma representatives, and these were conceptualized as belonging either to practical burden or to emotional burden, according to an established framework of practical vs. emotional needs, as utilized in health care in general and in mental health care in particular (12). All questions dealt with burden, as a preliminary suggestion that the questionnaire deal with the broader experience of caregiving as measured in other countries, including also caregiver positive experience and contribution of the mentally ill individual to the caregiver (13,14), was firmly rejected by Otsma representatives. They argued that the caregiver situation in Israel is still too grim to realistically expect such positives to exist (although there is research from Israel that demonstrates some – albeit modest – caregiver rewards (15)), and therefore that such unrealistic positively-oriented questions might offend the participants and perhaps reduce collaboration. After eliminating overlapping questions, the final version of the questionnaire consisted of 28 questions, of which the first 13 address practical burden, the next 13 address emotional burden, and the last 2 address total burden and burden in the last month relative to the last year; the question of whether the caregiver actually lives with the mentally ill individual was not included, as questions reflecting various aspects of caregiver contact were considered more informative and as it is suggested that co-residence in itself does not have a major impact on burden (16). All questions refer to the last month, and are rated on a 4-point ordinal scale, ranging from 1 (no) to 4 (very much). Each numerical answer can be supplemented by written comments detailing the specific burden involved (e.g., the nature of the physical effort involved); this will not be analyzed here, due to the relatively small sample of the current study.

Univariate analysis (mean and standard deviation) was conducted for each item of the burden scale, as well as for the mean of the whole scale and for age. Factor analysis was performed. The internal consistency of the scale was calculated as the Cronbach’s alpha; in accordance with the literature, we considered a Cronbach’s alpha of 0.70 or higher as satisfactory (17), and a Cronbach’s alpha > 0.50 as acceptable (18).

 Table 1. Means and standard deviations of the caregiver burden questionnaire scores

Item (all referring to burden due to caregiver role)*	Mean	SD
1. I invest time in my mentally ill family member (MIFM)	3.44	0.66
2. I spend money on my MIFM	3.52	0.69
3. I invest physical effort in caring for my MIFM	2.69	1.03
4. I am busy caring for my MIFM	3.21	0.94
5. I am ill due to caring for my MIFM	2.07	0.95
6. I am in danger due to caring for my MIFM	1.66	0.77
7. I lack privacy due to caring for my MIFM	2.53	1.02
8. I lose work time due to caring for my MIFM	1.98	0.99
9. My leisure activities are reduced due to caring for my MIFM	2.51	1.12
10. I lack rest due to caring for my MIFM	2.69	1.05
11. I lack company due to caring for my MIFM	2.71	1.08
12. My plans are inhibited due to caring for my MIFM	2.92	1.05
13. I lack assistance in caring for my MIFM	2.63	0.99
14. I cannot share with others my concerns regarding my MIFM	2.67	1.05
15. I am angry about the care of my MIFM	2.80	1.04
16. I am desperate, related to my MIFM	2.82	1.01
17. I am ashamed, related to my MIFM	2.12	1.14
18. I am sad, related to my MIFM	3.43	0.77
19. I am worried, related to my MIFM	3.72	0.60
20. I am humiliated, related to my MIFM	1.86	1.14
21. I am exhausted, related to my MIFM	3.06	0.97
22. I am frightened, related to my MIFM	3.31	0.89
23. I feel guilty, related to my MIFM	1.84	0.89
24. I feel exploited, related to the care of my MIFM	1.81	1.05
25. I feel misunderstood, related to my MIFM	2.08	0.95
27. I generally suffer from burden, related to my MIFM	3.09	0.87
28. I suffered such burden the last month relative to the last year	2.27	0.90
Mean score	2.65	0.4

* range of score – 1 = no, to 4 = very much

Factor analysis did not reveal coherent factors. Therefore the scale was treated as a whole. Cronbach’s alpha for the whole burden scale (excluding item 26) was 0.88.

Validity was assessed by separately correlating the 2 general burden items – which were also tested for correlation with each other – with the mean of the rest of the scale. The correlation between total burden (item 27) and last month’s burden relative to last year (item 28) was 0.40, p = 0.003. The correlation between item 27 and the mean of the rest of the scale (items 1 to 25) was 0.57, p < 0.001. There was no significant correlation between item 28 and the mean of items 1 to 25 (r = 0.23, p = 0.100).

Age was not significantly correlated with mean burden of items 1 to 25 (r = -0.20, p = 0.170). On the mean burden score (items 1 to 25), females scored significantly higher than males (U = 83.5, p = 0.046).

 Caregiver burden is relatively high in the field of mental health care in Israel, according to our findings. This is not surprising, as Israel has only recently started to systematically allocate resources for mental health care in the community, and the family support part of that is not yet well-established. Indeed, the highest burden was related to worry, which is particularly understandable if satisfactory services are not provided, and the second highest burden was related to financial costs, which again is understandable if sufficient public resources are not in place. Practical and emotional burden were not clearly distinguished among our subjects, perhaps because each type of burden may feed into the other (e.g., financial costs may augment worry, and worry, which is stressful, may augment physical illness). Overall burden severity may not differ across age in this group, nearly all of which were parents, as middle-aged parents may be troubled mainly by behavioral challenges of their son or daughter, in parallel to their work and other children, while elderly parents may be troubled mainly by the future of their disabled child, in parallel to their own failing health and dwindling social supports (19). Female caregivers may be more burdened than male caregivers due to taking more responsibility toward their mentally ill child, as is well-documented in other countries (20); this is a well-known fact regarding caregivers in general, e.g., with daughters – rather than sons – taking more of the caregiver responsibility for elderly ailing parents (21).

 The limitations of this study are that it used a relatively small and selective sample, consisting mostly of middle-aged and elderly mothers of mentally ill individuals; moreover, all the subjects were members of a family association, and thus perhaps more aware of their caregiver burden. These limitations are also found in studies elsewhere, such as in an American study of family NAMI (National Alliance for the Mentally Ill) members (20). As all our participants were Jewish, racial variation could not be examined, although race (and ethnicity) have been shown to be related to caregiver burden elsewhere (22). Also, the Israeli situation may be sufficiently specific to restrict generalization to other localities, as suggested by the caregiver representatives who participated in constructing the questionnaire.

 This study demonstrates that sound data can be produced by participatory research in the mental health field in general and regarding caregiver burden in particular. Additional participatory research studies in this field could be helpful, preferably addressing burden of a varied population of caregivers. Future research – both in Israel and elsewhere – should not necessarily use the questionnaire generated in this study, but rather a similar participatory methodology, so as to be as context-sensitive as possible. Following this, interventions may also be generated within a participatory framework so as to reduce burden, preferably focusing on specific needs of groups that may be at high risk for considerable caregiver burden, such as mothers of mentally ill individuals.

References