School of Psychology

Hope, recovery and schizophrenia: The experience of caring and coping

Researcher     Samantha Bamforth (Murdoch University)

Supervisor      Dr Anne Pedersen (Murdoch University)

Date:                3rd December, 2008
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Rationale
The rationale behind the present study followed a well documented psychological theory called the Cognitive Theory of Stress and Coping (Lazarus & Folkman, 1986). The theory stipulates that the way we think (cognition) about an event influences our experience of it. In the present study, we measured specific cognitions against the stress levels of family members caring for their loved one with schizophrenia. The theory is presented in a four step cognitive process, an example may help:

Hypothetical Event: After a year of sporadic psychotic episodes, a child is finally diagnosed with schizophrenia.
Cognitive Assessment of Event - A parent has thoughts that attribute meaning to the event: “People don’t recover from schizophrenia, my child has no future” / “Even though my child has schizophrenia they can still live a productive life”
Judgement of Coping Ability – A parent then assesses his or her coping ability: “I don’t think I have ability or resources to cope with this” / With the right support I can work through this challenging time”
Perception of Event as Stressful - Low - High Stress continuum

From these examples it becomes evident how an individual’s thought processes can influence their stress levels.

Why are we concerned with STRESS?
At present, there is an extensive body of literature demonstrating the relationship between stress and ill-health - both psychological and physiological. Stress has been related to, among other things, depression, fatigue, sleep disturbance, hormonal deregulation, post traumatic stress disorder, Alzheimer’s and accelerated ageing. Largely, past stress research has focused on the ill-health that has developed following high levels of stress. However, the present study took an alternative approach which was to investigate the cognitive processes that precede stress. That is, we were interested in whether the way people think about an event/circumstance influences the degree to which they experience it as being stressful.

Why choose to research FAMILY MEMBERS of people with schizophrenia?
There are two central reasons for choosing to engage family members of loved ones with schizophrenia: recovery and wellbeing.

Recovery of loved one: a positive and supportive family increases a loved one’s potential for living a fulfilling life on their road to recovery (Greenberg, Knudsen & Aschbrenner, 2006)
Family member wellbeing: family member carers must be seen as a stand-alone group that needs and deserves appropriate assistance through challenging times given they are found to present with numerous stress related health problems such as sleep disorders, clinical depression, and chronic anxiety just to name a few (St-Onge & Lavoie, 1997).

PARTICIPANTS of Study
Respondents were 87 family members of individuals with schizophrenia. The average age of family members was 56 years and the majority were women (69%) and parents (69%). Of the education statistics provided, 36% held a bachelor degree or equivalent which is above the national average of 22% (ABS, 2008). Family members had been caring for an average of 16 years. Respondents also provided the information as regards to their loved one. The average present age of their loved one was 37 years, the average age of symptom onset was 20 years old and the average age upon diagnosis of schizophrenia was 23 years old.

OVERVIEW of Study
We looked at the effect of six potential influences on stress which are defined below.

Perceived Stress, our outcome variable, refers to the degree to which an individual perceives a situation to be stressful. E.g., one of our questions asked: “How often have you been upset due to something that has happened unexpectedly?”

Vicarious Hope refers to the hope an individual holds for another person. E.g., “I generally believe that my loved one’s life will be valuable and productive”.
Hope refers to the hope held for one’s own future and was framed as being a positive psychological trait. E.g. ”I have a positive outlook toward life”
Grief refers to the loss of a loved one to severe mental illness and is considered an ambiguous form of bereavement given that death has not occurred; rather, that the pre-illness self has been lost or appears to be lost. E.g., “I am preoccupied about thoughts about how he/she could have been if not for the illness”.
Recovery refers to ones belief in recovery and their loved one’s recovery potential. E.g. “Recovering from schizophrenia is possible no matter what you think may cause it”.
Internalised stigma refers to the internalisation of mental illness stigma including employment & resource discrimination and perceptions of inferiority. It is possible that individuals with mental illness can internalise societal stigma as a result of being subjected to it. E.g. “He/she can have a good, fulfilling life, despite having schizophrenia” (reverse scored)
Coping self efficacy refers to a person’s confidence in their ability to perform coping behaviours and has been found to influence choice of coping style and to influence stress outcome. E.g. “I can stop myself from being upset by unpleasant thoughts”

What was the general AIMS of the study and what were the OUTCOMES of these?
According to the statistics measuring the mean or the average scores (1= low and 5= high) indicated that family members reported moderate levels of stress (M = 3.0), grief (M = 3.2), vicarious hope (M = 3.05) and coping self-efficacy (M = 3.25). Family members’ belief in recovery (M = 3.99) and hope (M = 3.72) were found to be higher. Conversely, their belief in mental health stigma was below the average (M = 2.4).

AIM I The principal aim was to examine if there existed a relationship between stress and the other predictor variables

Correlational analyses indicated that all the variables outlined above were significantly correlated with stress. Specifically, an increase in grief and internalised stigma was related to increased stress (negative variables). In contrast, an increase in hope, vicarious hope, belief in recovery and coping self efficacy was related to a reduction in stress (positive variables).

Regression analyses indicated that grief, hope, and coping self-efficacy were significant predictors of family members’ perceived stress. We discuss these three particularly important variables below:

Grief.Grief was found to be the most significant predictor of perceived stress. This means that grief, above all other variables measured, had the greatest influence on how stressful a person perceived their situation to be. These findings appear to support past descriptions of grief that relate it to the loss of a loved one with schizophrenia is an intense and enduring form of bereavement resulting from a sense of ongoing and chronic loss exacerbated by the nature of the remission-deterioration cycle (Mohr & Regan-Kubinski 2001).

Hope.A lack of hope significantly predicted perceived stress; conversely, a sense of hope appears to be an important protective factor in the stress process. Hope in the present study was conceptualised as a stable and enduring trait. High hope individuals are expected to judge stressors as challenging as opposed to overwhelming (Hagen, Myers & Mackintosk, 2005). That hope remained a significant predictor of perceived stress after the other variables were added to the statistical analysis is a valuable finding. It suggests that individuals in general who hold high hope for their future experience a decreased vulnerability to experiencing further psychological strain.

Coping Self-Efficacy. A lack of coping self-efficacy was found to be a significant predictor of perceived stress; this implies that it performs as a buffer between negative cognitions and stress. This is an important finding as it demonstrates that self-efficacy plays a key role in the stress process given that it both directly and indirectly (buffering) affects the degree to which an individual perceives their situation as stressful. Thus, it is posited that irrespective of the psychological distress experienced by a family member, if they hold high levels of confidence in their ability to cope, they are likely to experience reduced stress as opposed to if their confidence levels were low. These findings are in line with past literature that describes coping self-efficacy as a powerful mediator of the development and management of severe stress disorders (Benight & Harper, 2002).

What are the practical IMPLICATIONS of these findings?

Clinically, our findings provide some evidence for recommending some cognitive interventions over others. Specifically, our results indicate the importance of addressing grief thoughts, hope and coping self-efficacy when dealing with family member stress. Additionally, the other significant correlations (internalised stigma, vicarious hope and belief in recovery) could also be addressed; perhaps to a lesser degree.
The results have also shown that individual differences (e.g., hope as a trait or a generalised measure of an individual’s outlook on life) and specific cognitive processes (e.g., grief) all have a significant effect on stress. This is the case both in the initial stage; that is, appraisal, and the follow up stage: the buffering effect. Our findings indicate that clinical interventions targeted at family members would benefit from having a multi tiered approach, such that all stages of the process are addressed resulting in an increased potential for stress reduction.
Our findings also provide strong evidence highlighting the importance of not only directing future research and interventions toward the negative features that are found to increase stress (grief) but also those positive features associated with reducing stress (hope and coping self-efficacy).

Author’s closing comments
The goal of the study was to raise awareness of the challenges faced by family members and their loved ones. It is hoped that the results encourage increased clinical endeavours to support family members such that their stress be alleviated and that this has a flow on effect to their loved ones. Nevertheless, we acknowledge that cognitive processes are only one element of a very vast and complex set of issues relating stress to caring and thereby we accept the limitations of the current study for providing a complete solution to such challenges.

On a personal note, the curiosity for this study began when the primary researcher was immersed in the trials of supporting a loved one with schizophrenia. However, the real motivation for it developed upon meeting numerous other families who are affected by schizophrenia everyday around Australia. The most inspirational feature of the research findings was discovering that family members continue to experience such immense hope, belief in recovery and belief in their ability to cope amid their grief. I would like to express my deep gratitude to those family members who participated in the research and who shared their time and experiences with such sincerity. I would also like to thank the numerous mental health organisations Australia-wide for their encouragement and help with participant recruitment.

References

Australian Bureau of Statistics. (2008). Educational Attainment: Level of highest non-school qualification [Electronic version] cat. no. 6227.0 Retrieved December 2, 2008, from AusStats: http://www.abs.gov.au/AUSSTATS/abs@.nsf/mf/6227.0 - 21k
Benight, C.C. & Harper, M.L. (2002). Coping self-efficacy perceptions as a mediator between acute stress response and long-term distress following natural disasters. Journal of Traumatic Stress,15, 177-186.
Greenberg, J.S., Knudsen, K.J. & Aschbrenner, K.A. (2006). Prosocial family processes and the quality of life of persons with schizophrenia. Psychiatric Services, 57, 1771-1777.
Hagen, K.A., Myers, B.J., & Mackintosk, V.H. (2005). Hope, Social Support, and Behavioral Problems in At-Risk Children. American Journal of Orthopsychiatry, 75, 211-219.
Lazarus, R.S., & Folkman, S. (1986). Stress, appraisal and coping. New York: Springer.
Mohr & Regan-Kubinski. (2001). Living in the fallout: Parents' experiences when their child becomes mentally ill. Archives of Psychiatric Nursing. 15, 69-77.
St-Onge, M. & Lavoie, F. (1997). The experience of caregiving among mothers of adults suffering from psychotic disorders: Factors associated with their psychological distress. American Journal of Community Psychology, 25, 73.

Author notes.
Correspondence should be addressed to Samantha Bamforth at sambamforth@hotmail.com or Dr Anne Pedersen at A.Pedersen@murdoch.edu.au.