Abstract
A severely ill person has to cope with medical procedures, hospitalization etc. If this person is a parent, those consequences affect the entire family, which may result in a lasting distortion of children’s development. The aim was to evaluate the process of implementing family-oriented preventive psychological services for children and families with a severely acute central nervous system injured parent. Qualitative content analysis of descriptive progress notes was used. Obstacles were linked to a lack of consideration being given to preventive intervention. High rates of refusals were encountered. A real „conspiracy of silence” was adopted by many of the parents.
© 2011 Published by Elsevier Ltd. Selection and peer-review under responsibility of PSIWORLD 2011
Keywords: children of aromatically ill parents; central nervous system injury; mental health prevention; service development and implementation; evaluation in health services research.
1. Introduction
It has long been known that somatic illness in a parent is a risk factor for later psychiatric disorders in children (Rutter, 1966), and despite this, little attention has been paid to children’s mental health when a parent is severely ill.
Publications that describe intervention programs for children of somatically ill parents vary widely in terms of target groups, contexts of recruitment, professions and institutions involved and methods of intervention. Armistead, Klein and Forehand (1997), suggested parental depression, withdrawal, interparental conflict, and parental divorce as factors mediating children’s maladjustment by disrupting the parenting function. Other authors (Compas, Worsham, Ey & Howell, 1996) found out that subjective perception of a parental illness predicted child internalizing problems or distress better than did objective severity of the parental disease. Family functioning has also been shown to be more predictive for children’s psychological adjustment than any disease related parameter, such as duration, prognosis, or physical impairment (Watson, St James-Roberts, Ashley et al., 2006). This indicates that family interventions can be expected to play a major role in the prevention of mental health problems in children of traumatic brain injured patients. Despite these findings, specific interventions for those children are still rare (Romer, Saha, Saagen et al., 2007).
The major goals of previously reported interventions for children of somatically ill parents can be summarized as follows (Hoke, 2001; Diareme, Tsiantis, Kolaitis et al., 2007): to improve children’s knowledge of their parent’s illness and its treatment; to facilitate children’s active coping with the illness; to enhance intrafamilial communication about illness-related concerns; to relieve adolescents’ feelings of guilt. The evaluation of innovative interventions in this field have used quantitative as well as qualitative methods to either measure the effects of the interventions on individuals (Thastum, Munch-Hansen, Weill & Romer, 2006) or to identify specific aspects or contents of an effective or particularly well accepted form of intervention.
2. Methods
2.1. The context of the service implementation
The service development study presented here was part of a multi-center international research project
COSIP – Children Of Somatically Ill Parent, coordinated by the Universitätsklinikum Hamburg-Eppendorf, Germany. Eight centers in various European countries collaborated within this project. The main objective of the COSIP study was to acquire data on the mental health status of children exposed to serious parental illness and on associated factors that predict adjustment problems. Additionally, innovative child-centered family counselling services were implemented and evaluated in pilot service development studies in seven of the eight centers.
The Bucharest COSIP intervention was developed as a specialized outpatient counselling concept for children with brain injured parents. Its conceptualization was mainly based on current views in developmental psychotraumatology (Riedesser & Fisher, 2001) and attachment theory (Bowlby, 1988), as well as on current developmental views on how children cope with critical events (Christ, 2000). The intervention addresses the needs of both the children and the healthy parent as related to the stressors in a family caused by parental illness.
Generally, the objectives of early preventive counselling were oriented toward: reduction of emotional stress on the family generated by psycho traumatic event of a severe life-threatening illness, prevention of the development of psychiatric disorders in children; introduction of a realistic communication style between parents and children about the psycho traumatic event and its possible bad consequences; affective and cognitive reorganization of parents and children; development of resources and creating of coping strategies adjusted to new situations: getting the competence for care of ill person, better use of time and maintaining an acceptable level of social and professional life. Each intervention was flexibly tailored according to the specific needs of the respective family situation. The preventive interventions consisted of four counseling sessions during a period of 6 months.
2.2. Service implementation plan
Any program of psychological prevention of psychiatric disorders for family members of somatically ill persons, supposes important institutional developments, the initiation of mutual understanding and cooperation between somatic specialists and mental health professionals. In this respect we initiated consultation and liaison services in a variety of hospital settings. Consultation and liaison services were initiated in conjunction with the following three partners: x Neurosurgery Clinic of “Bagdasar-Arseni” Emergency Hospital; x Microsurgery Clinic from “Al. Obregia” Hospital; x Brain-vascular Illnesses Institute “Prof.dr. Vlad Voiculescu” from “Al.Obregia” Hospital.
In the other hospitals without psychiatric and psychological services, communication was blocked at the level of refusal or formal acceptance without any practical result. Refusal was formulated officially with statements like “What advantages we will have?”, “We don’t have any cases”, “Those are forensic cases and we cannot allow external involvement” etc.
Since our consultation and liaison service represents an innovative approach in preventive mental health care for the children of brain injured patients, particular emphasis was placed on the evaluation of its implementation.
Data were collected throughout a period of 12 months of implementation activities. During this period of the study, weekly staff meetings of 90 min each were conducted. All problems that were encountered were addressed. Possible solutions were discussed, documented and followed up in subsequent meetings. Based on the minutes of these meetings, all problems and experiences were continuously documented using a standardized monitoring form, which was divided into three columns that focused on the topics ‘problems’, ‘solutions’, and ‘general recommendations’: Problems, i.e. obstacles or difficulties that occurred during any part of the implementation process were briefly stated in a strictly descriptive way, i.e. without any interpretation; Solutions for the recorded problems that have been tried or found were stated, again in a strictly descriptive manner without any interpretation; General recommendations that were derived from team discussions on the particular problem and its solution.
Qualitative content analysis using categorization and phenomenological analysis of descriptive progress notes during the implementation period was used following the four-stage process described in detail in Smith and Osborn (2003). Analysis began with a close interpretative reading of the first progress notes where initial responses were annotated in one column. These initial notes were translated into emergent themes at one higher level of abstraction and recorded in the other column. The researchers then interrogated the themes to make connections between them. This resulted in a table of super-ordinate themes. This was then transformed into a narrative account.
3. Results
Once we started to identify the eligible cases, we also faced the first problems. That consisted mostly in the passivity, lack of interest and even passive resistance from the specialists in the neurosurgery clinics. On the daily request of the contact person, the specialists invoked several reasons to motivate their lack of support in our attempt to contact the patients’ families: the lack of suitable cases, lack of time, the seriousness of the patient’s disease, the fact that they had other priorities as well as other arguments which made us realize that they regret their initial agreement and considered our objectives insignificant or to common as compared to the other problems of the cases.
In the process of introducing our service to the medical staff of various neurosurgical units, we had to address some of physicians’ concerns and objections carefully. One of these objections concerned the assumed inability of a psychosocial intervention to have any effect on the key stressor to the patients and their children, namely the possibility of death. Romer et al. (2007) quote one colleague from the bone-marrow transplantation unit: ‘The situation is nothing other than ‘either-or’: If the parent survives, there will not be any need for support; if the parent does not survive, psychological intervention will not help anyway.’ Thus, we interpreted some of the specific objections to mental health support for their patients’ family members as being a representation of differences between the professional concepts derived from different tasks. Since in their work surgeons attempt to win a fight against death, they may perceive their efforts as having been unsuccessful if a patient dies. Psychotherapists, however, strive to strengthen the coping capacities and attachment in families exposed to a critical event and to prevent the patients and their families from processing the situation in a traumatic manner, characterized by feelings of overwhelming helplessness and powerlessness (Riedesser & Fisher, 2001). These family oriented goals remain obtainable irrespective of a patient’s survival or death (Romer et al., 2007).
A retrospective analysis revealed that families utilized our counselling intervention mainly when the patient’s physician had personally communicated the option to the patient family. We interpreted this observation to indicate that physicians were the crucial contact persons with regard to the referral of families to our service. We understand the importance of the role of physicians as communicators of referrals in the light of attachment theory (Bowlby, 1988). We can assume that the attachment system is highly activated as a psychobiological response to existential danger in patients coping with a life-threatening disease. The primary affect in such a situation is anxiety, and the most likely behavioural reaction is to search for a trustworthy person to lean on. Thus, the physician in charge of the medical treatment plan, to whom the patient and spouse has developed a feeling of trust, will most likely become the crucial reference person for the patient when any additional elements to the comprehensive treatment plan is introduced (Romer et al., 2007).
The access to children and families with a brain injured parent, also involves the family’s consent. The problems we faced at this level were not to be neglected by those who want to provide preventive intervention services in the field. They were expressed by the unexpectedly large percent (66,6%) of refusals to collaborate. The refusal to accept our offer was not caused only by the fact that the community was not familiar enough with the preventive assistance for mental problems, but also by objective factors. On one hand, we addressed cases in which the affection had an acute nature, involving an immediate vital danger. On the other hand, this new situation suddenly disturbs the family’s life style in a negative way. This can diminish the family’s interest in the subsequent risks, especially in the preventive measures. These features explain why more than half of the families motivated their refusal by phrases such as “we don’t have time now for such problems”. Some spouses also emphasized the somatic nature of their partner disease and stated that neither they nor their children were in need of psychiatric consultation.
Also, a real “conspiracy of silence”, so often adopted by the parents who did not want to involve the children in their problems was the reason why families did not agree to collaborate when they were told that the service involved discussion with children. The “conspiracy of silence” also functioned when we requested to contact the school, none of the families expressing their agreement to our involvement.
4. Conclusion
From the perspective of the future implementation in Romania of a service with such profile, it is necessary to take into consideration some significant aspects:
- the reminiscences of a long period of marginal placement of psychology, mental health and psychotherapy topics demand much efforts for persuading the families to accept the psychological service offered and to convince the specialists from other medical specialties to cooperate;
- habitually the cooperation between the somatic caring systems those focused on psychological andpsychiatric help is non-structured, on a reciprocity bases, as liaison interdisciplinary examinations;
- the preventive psychological intervention appears to be very useful for families with a brain injured parent, but a number of subjective and objective factors hinder the awareness of its value. Even more, the psychological support addressed to other persons than the ill patient, is regarded with ambivalence and fear.
The value of the findings presented here may be seen in their high practical implications for future implementation of services in this innovative field. A general criticism of qualitative approaches can be seen with regard to the potential arbitrariness of their interpretations. However, a kind of triangulation was performed by testing the subjective therapeutic satisfaction (Mattejat, 1997). It confirmed the quality of intervention through high scores of success and acceptability reported from all participants’ perspectives (child, healthy parent and therapist).
The experiences and recommendations for professionals described in this paper may help persons involved in the future implementation of such services to avoid obstacles in interdisciplinary collaboration between the medical and the mental health disciplines, and they may provide effective strategies to enhance acceptance of the service in brain injured patients and their families.
© Dan Florin Stanescu / Procedia – Social and Behavioral Sciences 33 (2012) 208 – 212