The contribution of Illness perception and coping resources to explaining psychological distress in Palestinian family members caring for children with Cancer

Several medical centres in Israel provide medical treatment to Palestinians from the West Bank and Gaza Strip. The current study was conducted at Sheba Medical Centre, where many Palestinian children with severe illnesses are treated, and are accompanied by their family members.

The families have to deal with the stress of the medical situation of the child and at the same time must tackle further stressors impose upon them by Israeli security measures, such as limitation of the number and ages of accompanying family members, and thus bring about a continuous disconnection from the home, further complicated by limited fluency in English and Hebrew )Nehari, Bielorai, and Toren, 2008(. These unique stressors constraint their coping resources, such as family support, employment and income. Yet, negligible evidence is available about the association between these uniques stressors and the emotional response of family members. This study focused on accompanying family members of Palestinian children who have cancer, and was based on Lazarus and Folkman’s theoretical model of stress and coping (Lazarus and Folkman, 1984).
Research Questions:

Among accompanying family members

1. Is there an association between stressors (severity of the disease and the specific stressors), illness perception and coping resources, and their emotional distress?
2. Does the illness perception mediate the association between stressors and the emotional distress?
3. Do coping resources mediate the association between stressors and their emotional distress?
4. Do coping resources mediate the association between the illness perception and their emotional distress?
5. Do coping resources moderate the association between the perception of disease and the emotional distress?

Method:

Sample: 95 first-degree (parents, siblings) and second-degree (aunts, uncles, grandparents) family members, age 18 and above, from the West Bank and Gaza Strip who accompany children, under 18 years of age, diagnosed with cancer for at least three months, and were treated at the oncological institute and the haematology-oncology ward in Sheba Medical Centre.

Procedure: The study was approved by the Helsinki committee of Sheba Medical Centre.  Participants filled out a questionnaire in Arabic after signing an informed consent form. .

Independent Variables: Severity of illness was assessed by the treating oncologist. The other variables included demographic background (control variables), specific stressors (location of residence, time spent while staying at the hospital); illness perception - IPQ (Broadbent, Petrie, Main and Weinman, 2006); coping resources – social support  MSPSS (Zimet, Dahlem, Zimet and Farley, 1988), socioeconomic status, Hebrew or English language fluency and relationship with the medical staff.

Dependent Variable: Emotional distress was measured by the somatization, anxiety and depression subscales from the Brief Symptom Inventory questionnaire (Derogatis and Melisaratos, 1983).

Statistical Analysis:

Bivariate analyses using Pearson’s correlation or Chi² tests were followed by multivariate analyses using linear regression models. Examination of mediation was conducted the PROCESS method (Hayes, 2013).    

Main Findings:

Gender differences were found in the study variables but no differences by other control variables. The study hypotheses were only partially supported: in the bi-variate analyses no association was found between the illness severity, unique stressors, or coping resources and emotional distress; the only statistically significant association was between the illness perception and emotional distress. However, this association became nonsignificant in the multivariate analysis, while gender remained the only variable significantly associated with emotional distress. The hypotheses regarding the associations between coping resources (personal and interpersonal) and emotional distress were not confirmed except for the association between relationship with the medical staff and emotional distress. No mediation or moderation effects were found. The findings of the final model show that women and family members who had a negative experience with the medical staff were more prone to experiencing emotional distress.

Study Limitations and Significance:

Representativeness of the study is limited due to its relatively small sample and collection of data from one medical centre.  Other limitation pertain to issues of cultural adaptability of some variables for the Palestinian population and the cross sectional design of the study which does not allow conclusions about causality. In spite of these limitations, this research adds to the modest existing knowledge about the emotional distress within this population, may serve as a basis for future studies and for interventions targeted at this population.

Implications for Research and Practice:

A longitudinal study is important as it could reflect the emotional process experienced by the accompanying family members from the beginning of the hospitalization of the child patient and during his/her extended treatment, and by using quantitative and qualitative methods. This may reveal causal associations between the variables, and it also offers a way to trace and track the emotional process at different times. For practice, developing an intervention program to enhance emotional experience is recommended, mainly by having assistance from the medical staff, such as better access to translations and linguistic resources. This will benefit the communication between the medical staff and the patients, and would later help the formation of trust and rapport between the two parties.

Moreover, the findings of this research allude to the significance of having specific intervention methods for men and for women. Female accompanying family members are prone to emotional distress in comparison to the male members, and thus they are in a greater need of psychosocial intervention which would focus on the illness perception by providing appropriate information about the disease and the treatment. Such intervention would assist the female accompanying family members in perceiving the illness as less-threatening, and thus it would lower the emotional distress.