Quality of life of adult daughters of women with schizophrenia: Associations with psychological resource losses and gains

Quality of life of adult daughters of women with schizophrenia: Associations with psychological resource losses and gains

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Available online at www.sciencedirect.com

ScienceDirect Comprehensive Psychiatry 68 (2016) 11 – 17 www.elsevier.com/locate/comppsych

Quality of life of adult daughters of women with schizophrenia: Associations with psychological resource losses and gains Ora Alkan a, 1 , Jonathan Kushnir b, c,⁎, 1 , Mor Bar b , Talma Kushnir a, d b

a Department of Public Health, Ben-Gurion University of the Negev, Israel The Child Psychiatry Unit, Edmond and Lily Safra Children's Hospital, Sheba Medical Center, Tel Hashomer, Ramat Gan, Israel c Baruh Ivcher School of Psychology, Interdisciplinary Center (IDC), Herzliya, Israel d Department of Psychology, Ariel University, Israel

Abstract Objective: This study examined the relationship between perceived losses and gains of psychological resources and quality of life of adult daughters of women with schizophrenia. Method: Thirty one adult daughters of mothers with schizophrenia (age range 30 to 50 years) and thirty women of similar sociodemographic characteristics whose mothers were mentally healthy (the control group) participated in this study. Results: (a) Resource loss was higher and resource gains were lower among daughters of women with schizophrenia, compared to the control group; (b) despite resource gains total score of quality of life was significantly lower among daughters of mothers with schizophrenia compared to the controls; (c) daughters of mothers with schizophrenia had lower levels of family functioning, a higher level of negative emotions and a lower level of positive emotions; (d) resource gains moderated the negative relationship between resource loss and quality of life; (e) the most significant predictor of quality of life was the group (i.e. daughters of women with schizophrenia compared with controls); (f) quality of life was more strongly associated with resource loss than with resource gain. Discussion: The findings of this research underscore the importance of raising awareness of caregivers and healthcare authorities to the needs of the unique population of daughters of women diagnosed with schizophrenia for support and even treatment. © 2016 Elsevier Inc. All rights reserved.

1. Introduction The present study explored positive as well as negative effects (losses and gains of psychological resources) of growing up in the shadow of mothers' schizophrenia, on the quality of life of adult daughters. Mental illness is a continuous and ongoing stress factor in the family [1] with a wide variety of difficulties that family members must cope with, both emotionally, functionally, and economically. The emotional impact on family members may be severe [2]. The impact of living with a mentally ill parent on the offsprings may be very significant and dramatic [3–5].

Conflict of Interest: The authors have no conflict of interest to report. ⁎ Corresponding author at: The Child Psychiatry Unit, Edmond and Lily Safra Children's Hospital, Sheba Medical Center, Tel Hashomer, Ramat Gan, Israel. Tel.: + 972 52 6160044; fax: + 972 15397679911. E-mail address: [email protected] (J. Kushnir). 1 Both authors contributed equally to the manuscript. http://dx.doi.org/10.1016/j.comppsych.2016.03.002 0010-440X/© 2016 Elsevier Inc. All rights reserved.

Previous studies of vulnerability of offsprings of parents with mental illness indicate that they are at a high risk for a wide range of psychological and neuropsychiatric problems and one third of them may develop a severe mental illness by early adulthood [6]. They also are at a high risk for suicide [7]. Numerous factors that may have a negative impact on the child's emotional health were identified: age, developmental stage at the onset of the parental illness, socio-economic status, social isolation, separation from the family and being a part of the delusional parental system [8,9], parental instability, number and frequency of parental hospitalization, lack of warmth and empathy, emotional neglect, lack of appropriate parenting skills, inability to maintain a family rule system and structure, In addition, some children are exposed to parental violence, or chronic physical or emotional neglect [3,7–10]. Numerous studies show that offspring of parents with schizophrenia have higher risks for a variety of social, cognitive, neurological, and emotional problems [11]; social adjustment [12,13], social and cognitive disadvantages,

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including lower IQ [14–16], attention deficits [17,18], poorer school performance [19], lower motivation and more behavior problems [20] and have higher risk to develop schizophrenia [21]. Most of the studies on vulnerability of offsprings of parents with mental illness and specifically schizophrenia focus on children and adolescents and only few focus on adult offsprings. These studies revealed that adult offsprings of people with schizophrenia had poor self-concept [22], increased risk of suicidal behavior [23], negative social and emotional experiences, lack of support from the parent with illness compared to children of healthy parents [24]. Another study that targeted specifically adult daughters raised by mentally ill mothers found frequently recurring themes that included hatred of self and mother, current lack of extended family support, current parenting difficulties and ongoing stigma and isolation. All group members perceived themselves as troubled despite others' perceptions of them as resilient [25]. On the brighter side, several resilience factors that may help protect offspring from negative outcomes of the parent's psychiatric illness have been reported in the literature: the ability to dissociate emotionally from the parent's illness, avoidance of over-identification, social and intellectual competence, balanced temperament, a healthy parent, good bond with one of the parents and the existence of an external support system [3,8]. Some of the daughters of women with schizophrenia choose therapeutic occupations, manage to build normal family life and develop a successful career [26]. Such findings raise awareness of the possibility that growing up with mothers with mental illness may have some positive effects concurrent with the obvious negative impact. Indeed, a recent study that examined the experiences of adult offsprings of parents with schizophrenia suggested that growing up with such a parent can have positive effects in terms of developing resilience in the presence of good support system [24]. Several earlier studies suggested that people coping with stressful situations may experience improved wellbeing and personal development. According to the psycho-social stress model [27] stressful events lead to different long term effects in different individuals. Indeed according to [28] individuals who are resilient to stress experience positive outcomes under stressful situations whereas vulnerable individuals will suffer negative outcomes. Breznitz & Eshel (1983) further suggest that the effect of stress may be two-dimensional so that a person may experience simultaneously both negative and positive effects. This model resembles the positive mental health model [29], in which “positive” and “negative” mental health are two separate unrelated dimensions. In one study holocaust survivors reported repeated nightmares and recurrent, unwanted distressing memories of the events, although these individuals also exhibited extraordinary coping abilities [30]. In the present study Conservation of Resources (COR) theory [31,32] was used to explore both positive and negative effects on the quality of life of adult daughters of women with schizophrenia. COR was developed by Hobfoll

[31,32] as a theory of the stress etiology. Resources are “valued things” that meet survival needs of an individual: objects (e.g. a car), conditions (e.g. secure job), personal characteristics (e.g. self-esteem) and energy (e.g. money). Stress is a reaction to an environment in which there is a threat of resource loss, an actual loss in resources, or lack of an expected gain in resources following losses. Change itself is not the source of stress, only change resulting in a loss of valued resources is most problematic. According to COR people are motivated to maximize gains and reduce losses. People who posess large quantities of resources, cope better and manage to preserve their resources in stressful situations, compared to people who have fewer resources. A child living with a mother with schizophrenia may experience ongoing stressful situations that involve continuous loss of a healthy, functioning, caring, and supporting parent. Moreover, in addition to the emotional stress, the child often adopts a parental role and becomes a caregiver of the mother. Involvement in caregiving may exacerbate stress and compromise the offspring's ability to achieve appropriate developmental tasks. These losses may lead to further stress and anxiety regarding future losses, adding to the child's burden. Based on the unique approach of COR theoretical framework and the assumption that coping with stress may be both detrimental and beneficial to wellbeing, the main aim of the present study was to explore the possibility that growing up “in the shadow of schizophrenia” may incur psychological benefits (gains of psychological resources) for adult daughters and that these gains may moderate the negative impact of resource losses on their quality of life. We focused only on psychological resources. We hypothesized that (a) adult daughters of women with schizophrenia will report higher levels of psychological resource loss, less gains and lower quality of life, in comparison with women who were raised in families with mentally healthy mothers; (b) perceived resource gains will moderate the negative relationship between resource loss and quality of life. 2. Methods 2.1. Participants Sixty one generally healthy adult women, aged 20– 50 years, participated in the study. The research group consisted of thirty one daughters of women with schizophrenia. The control group consisted of thirty women of similar background, with healthy mothers, matched with the research group for: age, marital status, years of education, and occupational status (employed, house wife). 2.2. Measures 2.2.1. Demographic questionnaire This questionnaire included items relating to age, marital status, number of children, years of education and occupational status (employed/not employed).

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2.2.2. Conservation of Psychological Resources Scale This measure was compiled specifically for this study. It and was based on the Conservation of Resources theory [31,32] and the Conservation of Resources scale [33]. It includes 19 statements which represent specific psychological resources e.g., restraint and tolerance ability, ability to communicate, ability to be cheerful (See Appendix 0). The items were compiled following informal discussions with adult daughters of women with schizophrenia. The responses for each statement include three questions: a. How important is this resource for you? b. To what extent did you lose this resource due to your mother's illness? c. To what extent did you gain this resource due to your mother's illness? Subjects in the control group were asked to complete the same questions by relating to their “life course” (in place of “mother's illness”). Each of the three questions is rated on a 5-point Likert scale (1 = Not at all, 5 = To a very high degree). The alpha Cronbach's reliability scores for all three questions in the entire sample were very high: 0.91 for “Importance of the resource” and for “Gain of resource”; and 0.92. for the “Loss this resource” question. 2.2.3. Multidimensional Quality of Life (MQOL) The MQOL [34] is a self-report tool that assess quality of life as a multi-dimensional construct. The tool can be used with healthy and physically or mentally sick individuals, under regular or challenging circumstances. The reason for selecting this tool is that it consists of 60 items representing a great variety of quality of life dimensions such as functioning at work or studies, eating and appetite, sleep, functioning in the family (as a partner, as a parent, as a sibling, as son/ daughter), sense of being successful, concentration, loneliness, anger, hope, joy, fear, sense of helplessness, strength and ability to cope with the tasks of everyday life. Each item is followed by four response alternatives (1–4), the higher the score the better the QOL. The items of the original MQOL form 17 scales and five factors identified both by factor analysis and by cluster analysis [34]. The MQOL provides three types of scores: 1. Scores for each item separately; 2. Scores for each of the 17 scales; 3. Total QOL score. Reliability of the MQOL has been established both in terms of internal consistency and in terms of test–retest reliability. Several studies demonstrated both the concurrent validity and criterion validity [34,35]. The MQOL in this current study included 56 items appropriate for the specific population and 19 quality of life dimensions as presented in Table 1 in the Appendix 0. 2.3. Procedure The study was approved by the Institutional Review Boards (Helsinki committees) of three Israeli hospitals (Soroka Medical Center, Beer Sheva Psychiatric Hospital, and Beer Yakov Psychiatric Hospital). Adult daughters of mothers with schizophrenia were recruited with the help of the Counseling and Support Center for Families in the Israeli Ministry of Health; “Enosh” – Israeli foundation for mental

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health. 3. Advertisement of the study in national newspapers. Participants were interviewed by the researcher (first author) at the participants' home or in a place chosen by them. All participants signed an informed consent form. 3. Results 3.1. Sample demographics 61 participants were included in the analysis. The mean age ± SD of adult daughters of mothers with schizophrenia was 42.57 ± 9.38 years, and 40.52 ± 10.07 years in the control group. Comparison of the socio-demographic variables (age, years of education, number of children and employment status) between the groups revealed no significant differences on any of the variables (see Table 1). 3.2. Comparison of importance, losses and gains of resources between daughters of women with schizophrenia and controls Comparison of the three aspects of the Conservation of Resources scale between daughters of women with schizophrenia and controls demonstrated that the first group had significantly higher mean resource loss scores and significantly lower resource gain scores compared to controls. The difference between the two groups in the importance of resource scores was not significant (See Table 2). 3.3. Comparison of quality of life dimensions between daughters of women with schizophrenia and controls In comparison to controls, daughters of women with schizophrenia had significantly lower scores in 18 of the 19 quality of life aspects and in the total quality of life score. The only aspect in which no difference was found between the groups was related to work and profession (See Table 3). 3.4. Assessment of perceived resource gains as moderator of the negative relationship between resource loss and quality of life A linear regression analysis was performed order to assess whether perceived resource gains moderated the association between resource loss and quality of life. The analysis included the combined group of subjects. The dependent Table 1 Comparison of socio-demographic variables between the two groups (Mean ± SD). Daughters of women Control group t/χ 2 score with schizophrenia (N = 30) (N = 31) Age Education (no. of years) No. of children Occupational status (% employed) Marital status (% married)

42.57 ± 9.38 13.58 ± 2.47 1.83 ± 1.44 79.30 51.70

40.52 ± 10.07 0.82 13.48 ± 2.25 0.17 1.84 ± 1.29 −0.02 83.30 3.25 58.10 2.30

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Table 2 Comparison of mean resource importance, loss and gain scores between daughters of women with schizophrenia and controls (Mean ± SD).

Importance Loss Gain

Daughters of women with schizophrenia (N = 31)

Control (N = 30)

t

4.53 ± 0.55 3.08 ± 0.81 2.81 ± 0.73

40.52 ± 10.07 2.28 ± 0.85 3.34 ± 0.91

1.91 a 3.70⁎⁎ − 2.43⁎

b 0.10. ⁎ p b 0.05. ⁎⁎ p b 0.0001.

Table 4 Regression analysis of perceived resource gains as moderator of the negative relationship between loss of resources and quality of life. Predictors

B (SE)

β

T

Loss Gain Loss X Gain

− 0.22 (0.06) 0.19 (0.06) 0.16 (0.05)

− 0.43 0.35 0.32

− 3.99** 3.09** 2.97**

SE = standard error; *p b 0.01, **p b 0.0001.

a

variable was quality of life and the predictors were loss of resources, resource gains and their interaction. Table 4 shows the results of the linear regression analyses. When loss of resources and the interaction between loss and gain of resources were controlled for, resource gains predicted significantly and positively quality of life (β = 0.19, P b 0.01). Additionally when resource gains and the interaction between loss and gain of resources were controlled for, loss of resources significantly and negatively predicted quality of life (β = − 0.22, P b 0.0001). Finally, when both gain and loss of resources were controlled for, their interaction significantly and positively predicted quality of life (β = 0.16, P b 0.01). Thus, resources gains moderated the association between resource loss and quality of life. Fig. 1 shows the moderation effect of the interaction between resources loss and gains on quality of life. As shown, when there is a high level of resources gains, there is no association between resources loss and quality of life. However, when there is low level of resources gains, the association between resources loss and quality of life is

strongest. In other words, the quality of life of women who gained a significant amount of coping resources across their life span, is less affected by events that lead to resources loss, compared to women who did not gain a significant amount of resources. Table 5 shows the results of a stepwise linear regression predicting quality of life. The predictor that was entered in the first step was occupational status (employed/unemployed); group was added in the 2nd step (daughters of women with schizophrenia/controls); and resource losses and gains were entered in the 3rd step. The results show that the most significant predictor of quality of life was the group variable. The addition of resource losses and gains was also significant, however only resources loss was a significant predictor of quality of life (t = − 2.53), p b 0.05).

4. Discussion In the present study we specifically targeted adult women, because of the paucity of studies addressing quality of life of adult daughters of parents with schizophrenia. The findings provide additional evidence on the long term impact of growing up with a mother with mental illness, on quality of

Table 3 Comparison of specific quality of life aspects between daughters of women with schizophrenia mothers and controls (Mean ± SD). Parameter

Daughters to women with schizophrenia (N = 31)

Control (N = 30)

t

Physical health Mental health Living conditions Work and profession Active living Functioning in the family Sexuality Physical functioning Social functioning Confusion and bewilderment Body image Stress Ability to cope Cognitive functioning Positive emotions Meaningfulness of life Self-image Negative emotions Life satisfaction Overall quality of life score

2.56 2.44 2.88 3.41 2.78 2.71 2.98 3.00 2.60 3.02 2.63 3.10 3.17 3.07 3.22 2.93 2.99 2.56 2.97 2.85

3.00 3.45 3.24 3.61 3.10 3.56 3.59 3.39 3.39 3.47 3.10 3.40 3.54 3.56 3.80 3.68 3.46 3.35 3.73 3.42

−2.712** −5.441*** −2.847** −1.077 −2.884** −5.076*** 0.007** −3.177** −4.379*** −3.722*** −3.020** −2.318* −3.181** −3.343** −4.002*** −4.864*** −3.309** −5.748*** −4.877*** −6.060***

* p b 0.05, **p b 0.01, *** p b 0.0001.

± ± ± ± ± ± ± ± ± ± ± ± ± ± ± ± ± ± ± ±

0.58 0.77 0.48 0.73 0.37 0.82 1.00 0.52 0.80 0.53 0.63 0.47 0.49 0.62 0.61 0.70 0.55 0.62 0.68 0.44

± ± ± ± ± ± ± ± ± ± ± ± ± ± ± ± ± ± ± ±

0.58 0.62 0.46 0.57 0.49 0.44 0.58 0.43 0.59 0.41 0.57 0.53 0.43 0.51 0.50 0.46 0.53 0.43 0.52 0.29

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0.5 0 low

0.5

medium high

1 1.5 2 0

1

2

Fig. 1. Perceived resource gains as a moderator of the negative association between loss of resources and quality of life.Abbreviations: Low = Low level of resources gain; High = High level of resources gain.

life of adult offsprings. Among the participants of the present study growing up in the shadow of schizophrenia had dramatic long-term effects on many aspects of the daughters' lives. The main aim of this study was to assess whether these daughters would report any gains in psychological resources, in addition to losses, due to living in the shadow of their mothers' illness; gains that may moderate the expected negative association between resource loss and the daughters' quality of life as adults. Indeed we found that the adult daughters of women with schizophrenia reported a significant amount of gains of psychological resources during their life course, although to a lesser extent than the gains in the control group. These findings support a recent study that suggested that growing up with a parent with schizophrenia might have some positive effects, in terms of developing resilience in the presence of supportive relationships with other family members [24]. Nevertheless, the daughters of women with schizophrenia also reported substantially more losses of psychological resources during the life course, compared with the daughters of a generally healthy mother. These losses were associated with extensive negative impact on all quality of life domains. The higher the extent of perceived loss of resources, the worse was the level of quality of life.

Table 5 Hierarchical regression analysis predicting quality of life from occupational status (employed/unemployed), group (daughters of women with schizophrenia /controls) and resource losses and gains.

Step 1 Occupational status Step 2 Group Step 3 Resource losses Resource gains 2

B (SE)

β

ΔR 2

− 0.30 (0.16)

− 0.30

0.06⁎

2.52 (0.21)

0.65

− 0.13 (0.05)

− 0.25

0.07 (0.06)

0.13

0.42⁎⁎⁎ 0.07**

R = 0.56. *p b 0.1, **p b 0.05, ***p b 0.0001; Abbreviations: SE, standard error; Step 1, occupational status (employed/unemployed); Step 2, group (daughters of schizophrenic mothers/controls); Step 3, resource losses and gains.

Despite the reported gains in psychological resource, the quality of life of the daughters of mothers with schizophrenia was found significantly lower, compared to the quality of life of women raised by healthy mothers. Using the multidimensional quality of life measure [34] enabled the assessment a large number (19) of quality of life domains. The most salient differences in quality of life between the two groups of women were found in two domains: family functioning and negative emotions. In comparison to the control group, daughters of women with schizophrenia had a significantly lower level of functionality in the family environment, higher levels of negative emotions and lower levels of positive emotions. Previous studies indicated that having a family member with mental disorder is a continuous stressor to the family's life [1]. Living with a sick parent could trigger many negative emotions such as shame, anger, fear and guilt, especially when the parent requires constant care [5]. Exposure to the parent's psychotic episodes can be even more disturbing as the child is likely to witness frightening or even traumatic scenes, such as hallucinations and psychomotor agitation [36]. The statistical analysis revealed the specific contributions of several variables to the prediction of quality of life. As expected, group (study vs control) was found to be the most significant predictor of quality of life, explaining 42% of the variance. In other words, having a schizophrenic mother had drastic long term implications on the daughters' quality of life as adults. The addition of resource gains to the regression analysis was also significant, but contributed only 7% to the overall variance in quality of life. These results support previous studies, indicating that although resource gains could possibly improve the daughters' quality of life to a certain point, the damaging implications of the loss of psychological resources are much more prominent in determining one's life [37]. These long-term implications could be explained by the fact that going through childhood in a disturbed environment, such as having a sick mother, challenges the child's ability to cope with life stresses. Empirical studies suggest that mothers with schizophrenia are particularly prone to parenting difficulties, partly due to the progressive nature of the illness, followed by vast cognitive and emotional impairments [38]. Thus, their children continuously face a

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sense of loss, such as the loss of maternal protection and guidance. Such experiences of loss, as the results indicate, could possibly impair the child's quality of life for years to come. The implications of such experiences during a child's life could be substantial. For example, Worland, Willkens & Janes (1999) found that 25–50% of children to mentally ill parents suffer from one or more psychiatric disorders during childhood and/or adolescence [8]. Moreover, up to 15% of these children will experience psychotic episodes during life. They also exhibit higher suicide rates, compared to the mentally healthy population [7]. Finally, we found that loss of psychological resources had a stronger relationship to quality of life than resource gains, in support of COR theory predictions. Nevertheless, resource gains had a somewhat protective role on the daughters' quality of life. Resource gains moderated the negative relationship between resources loss and quality of life. Thus, women who managed to gain more resources during life seemed to be less affected by negative life events. We suggest several clinical and exploratory implications of the current study. Our findings regarding the lower quality and life of adult daughters of mothers with schizophrenia and its potential long-term implications underscore the need for treating and supporting this unique population, in the form of, for example, of outpatient psychosocial clinics. Moreover, women with schizophrenia are at risk for not adhering to treatment [39]. Thus, interventions for mothers with schizophrenia and their children are clearly needed, targeting specific needs of the family as a whole [40]. Flexible treatment approaches that incorporate environmental supports, health promotion, childcare resources, child welfare systems and family involvement are essential. Our results contribute to the understanding of the special characteristics of adult offspring women, allowing their family and social environment to better understand their needs and deficits. We hope that this study will assist in raising awareness of healthcare authorities, regarding the special needs of this population. Increasing public awareness could assist in overcoming the stigma regarding mentally ill patients and their relatives, who live in the shadow of the parents' illness. There are several limitations to this study. First the sample was limited in size and is not representative. Future studies should gather data from larger and more varied samples. Second, the study was cross-sectional and the findings present information gathered in a certain time frame of the subjects' lives. Future studies should follow up participants and evaluate their situation at different time points. Third, while Hobfoll's theory discusses a variety of potential resources, the current study included only psychological resources and perceived abilities, such as the ability to receive help from relatives and tolerance to abnormality. We did not address more concrete or objective resources (e.g. house, car), or energy (e.g. earning, insurance). Hence, future studies should consider including more categories of resources. Finally, the ability to generalizing these results

should be made with caution. Future studies should include male offspring of mothers and fathers with schizophrenia, as well as children of parents suffering from different kinds of mental disorders, such as bipolar disorder, PTSD and depression.

5. Conclusions In this study quality of life of adult daughters of women with schizophrenia was extensively lower compared to the quality of life of women raised by healthy mothers. Daughters of women with schizophrenia had lower levels of functionality in the family environment and higher levels of negative emotions and loss of resources. Nevertheless, the results indicate that daughters of women with schizophrenia also had some resource gains, although lower than the gains among the control group. The level of these gains moderated the negative relationship between the resource loss and quality of life. Nevertheless, resources loss was more strongly associated with quality of life than resource gains. The findings should raise awareness of healthcare authorities and the public regarding the emotional needs and the importance of treating and supporting this unique population.

Appendix A Table 1 Resource losses, gains and importance. Resource

Belief in my abilities Ability to trust others Ability to be patient and tolerant of others Ability to commit Ability to bond with others Tolerance of irregularity Ability to obtain support Ability to obtain support from relatives A sense of serenity A sense of happiness A sense of pride A sense of security Ability to make friends Ability to obtain education Ability to obtain money Ability to obtain job promotion Ability to develop my personality Ability to be decisive Ability to be consistent

How much did you gain because of your mother's illness?

How much did you lose because of your mother's illness?

How important is this resource?

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