The contribution of caregiver strain, parenting style and social support to psychological distress of mothers of children with cancer.

Each year, about 400 children aged 14 and under in Israel are diagnosed with cancer. As a result families face implications and changes that emanate from the child's illness. Knowing that a child in the family has cancer is an intense and life-changing experience, directly linked to a wide range of emotional and mental difficulties, as well as to the development of mental distress by all family members, and particularly by mothers (Compas et al, 2014; Van Der Geest et al, 2014).

The difficulty among ultra-orthodox mothers seems to be even greater due to their  unique characteristics such as having to keep the condition a secret, the need to cope with the child almost single-handedly in order to allow the father to continue learning Torah and so on (Nahari, Fintz&Toren, 2006).

The burden associated with treating a sick child, forces mothers to refrain from certain activities and minimize social ties. Being the primary caregivers, they also need in most cases to continue to care for the rest of the family (Haun et al, 2014). Mothers of sick children must juggle between tasks, chores and demands and often secure the help of their immediate surroundings: family members, friends and the community in which they live.

The present study is based on the cognitive model of stress adjusted to family members' process of adapting to treatment (Lazaros&Folkman, 1984), and attempts to shed light on several confounders that may be associated with or contribute to understanding the development of mental distress among mothers of young cancer patients.

In the present study the connection between the perceived caregivers strain emanating from the child's and the mother's mental distress are examined, as well as the link between bonding styles in measures of parental caregiving versus neglect, and control versus autonomy, and the mental distress reported by mothers of sick children. Cancer is life threatening to the child and therefore directly impacts the entire family system, which in turn requires support on the informative level – providing information on various issues, the instrumental level – providing material help and necessary services, and the emotional level – empathy, concern, interest, encouragement, attention, love and security (Sargent, Sahler, Roghman&Multhern, 1995).

The study population consisted of 113 mothers from the ultra-orthodox sector (63 mothers of healthy children and 50 mothers of children grappling with cancer) who receive services from EzerMiZion. The questionnaires were provided to the mothers by staff with which they do not interact directly in order to avoid exposure or embarrassment. The questionnaires respondents filled out were anonymous since exposure in personal matters such as emotional difficulties and spousal support may be perceived as invasive by the ultra-orthodox; thereby raising the concern that the answers provided will not reflect the reality as truly experienced by the respondents. The study was approved by the ethics committee at the Bar Ilan University School of Social Work.

Respondents were asked to fill out five questionnaires: a personal information questionnaire; a mental distress questionnaire (BSI); a caregiver strain questionnaire (CGSQ); a parental bonding questionnaire (PBI); and a social support questionnaire (CPASS). In the present study, mental distress, caregiver strain, parental bonding and social support were compared between the study group (mothers of children grappling with cancer) and the control group (mothers of healthy children).

Findings reveal that differences can be found in mental distress levels between the study and control groups – mothers of young cancer patients cope with much higher degrees of mental distress than mothers of healthy children. Differences were also found within the study group between the levels of distress experienced by mothers in accordance with the stage of the illness. During the treatment phase distress is higher than during remission, which is more similar to the sort of coping experienced by mothers of healthy children. Caregiver strain too was found to be associated with the severity of the illness rather than the duration thereof. Parental bonding style was not found to be a confounder contributing to the development of mental distress among study group mothers. Finally, social support was found to be associated with alleviating distress, and is an important and vital resource for mothers coping with a child's illness.

The present study has several limitations: first, it is cross-sectional and reflects a single point in time, failing to take the changes and transformations undergone by mothers during the study period into account; second, mothers were only sampled twice - at the treatment phase and during remission; and third, the sample represents ultra-orthodox women from central Israel, whereas no women from the periphery were sampled.

The clinical contribution of the present study lies in the fact that it centers on a unique population – ultra-orthodox women. Examining the links between the variables can serve as practical indication of places where professional caregiving staff should intervene and resources should be allocated for this purpose in order to develop services, programs or intervention groups, as well as expand the service provided for the sick child's family when taking into account the future implications on the child's wellbeing. The present study may also serve to encourage further in-depth research, such as a study on the father's role or one that will compare non-religious mothers to ultra-orthodox ones in order to hone each population's unique characteristics and their contribution.