Each year, approximately 100,000 children (50,000–150,000) in Germany experience that one of their parents develops cancer (expert estimate, Robert Koch Institute, 2017). In a representative survey in the USA, 14% of cancer patients had underage children . The sudden interruption of familiar everyday routines and the noticeable sense of uncertainty are expected to double the risk for development of psychological symptoms (anxiety, depression, and psychosomatic complaints) in children confronted with parental cancer compared to children in the general population . These symptoms tend to be rare at the time of diagnosis and often develop during the course of the parent’s cancer treatment or follow up . In addition, unaffected parents providing support also show remarkably high stress levels  along with a significantly increased risk of morbidity . In a Danish study, a significant increase in in-patient hospital stays due to affective disorders in partners of breast cancer patients was demonstrated over a 13-year follow-up period .
To date, the standard support provided in Germany covers domestic help for a maximum of 26 weeks, when children under the age of 12 live in the household. However, sick leave times of severely ill parents are often much longer. Furthermore, as this type of support is directly linked to the patients’ health insurance status, this sole orientation towards the parent suffering from cancer himself results in the paradox that, at the moment of the patients’ death support will end immediately, which is the exactly the point in time when remaining family members are at the highest need for support. Consequently, the burden on the other family members and their increased risk for development of subsequent and potential long-term sequelae and even more so, the initiation of preventive measures thereof are not adequately addressed. Although numerous studies have defined stress factors, risk patterns, and effective interventions for families with a severely ill parent , they are neither integrated into standard care nor into prevention plans in Germany. The problem can be further accelerated by the fact that support offered by cancer counseling centers is rarely used by the often-overburdened families, while special services for children are only provided within selected cancer counseling centers . Along this line, hospitals’ social services staff is often not adequately equipped for complex interventions, and potentially helpful interventions offered during or close to the time of initial diagnoses are often neglected . Additionally, access to support by social workers outside of hospital care is hard to find leading a substantial “cross-sectional” gap in the availability of psychosocial care. This phenomenon is somewhat further complicated by the current shift towards more outpatient systemic cancer treatments.
The limited links between the different sectors and the complexity of different service providers involved ultimately lead to structurally insufficient care for the families. Parents are often under severe emotional and organizational stress and therefore often fail to organize the support needed for themselves. Consequently, during the subsequent course of disease they may acquire increased morbidity and mortality risks [6, 7]. Risk factors for increased psychological impairment are dysfunctionality in the family and the psychological burden on the parents. In particular, the ease up on psychological burdens for parents, the availability of possible coping strategies, functioning family structures, protective relationships, and open communication within the families are more decisive for the later outcome for all surviving members of the family than medical factors such as prognosis and severity of the disease [9, 10]. This is the starting-point for the cross-sectional, multi-professional initiative “family-SCOUT”.
Description of the intervention
In order to describe family-SCOUT we used the TIDieR-checklist  for complex psychosocial interventions. Main goal of family-SCOUT is to provide support for families with minors suffering from parental cancer. Both parents (or a single affected parent) should have the chance to reduce stress levels while overwhelming burden and parentification of their children should be avoided. Parents’ capabilities to emotionally support their children in coping with the new situation should be strengthened. Furthermore, resources allowing the parents themselves to establish the adaptations of their daily life required should be provided. Mental disorders particularly also in the later life of all family members should be prevented.
Active outreach support
Patients with an oncological disease and underage children will be identified by physicians, psycho-oncologists or social workers working in the field of medical, i.e. oncological care. If consented by the affected patient, a member of the family-SCOUT-staff will be contacted. Subsequently, families will be offered an initial counseling session either within the hospital, at the outpatient clinic of practice, or at the families’ home in order to allow organizationally and emotionally overburdened families to make use of available support structures and interventions.
Permanent contact person / family-SCOUT
The family-SCOUT provides a continuous contact throughout the entire course of disease including palliative situations, dying, death and bereavement depending on family’s need. Professionals working as family-SCOUTs have different backgrounds such as social worker or nurses with additional qualification in psychotherapy. Additional training involves communicative skills, training in psycho-oncology, developmental psychology, and social law (80 hours). The main tasks of the family-SCOUTs are related to all topics covering the family’s concerns, e.g. difficulties in organizing child care, needs for household support, self-assessment of communication behavior in the family, and ways of coping. The family-SCOUTs provide information about all options available for organizational, emotional, and communicative purposes and facilitates access to existing support services, e.g. domestic help, youth welfare services, cancer counseling services and psycho-oncological services either face-to-face or by telephone. The family-SCOUTs also foster open discussions about the disease between parents and subsequently all family-members and provide appropriate brochures and recommendations for reading materials designed for children.
Periods of intervention depend on the affected family’s needs; the observation time within the study is at least 9 months. In palliative situations and in the case of death, companionship by the family-SCOUT continues until stable everyday structures have become re-established and necessary support (e.g., psychotherapeutic support) can be securely offered within a stable framework. If single parents with an unfavorable prognosis are in need, support is provided for arranging a custody declaration in the case of death.
Through the outreach program of the Center for Integrated Oncology (CIO) Aachen-Bonn-Cologne-Duesseldorf (CIOABCD), the family-SCOUT initiative will be closely connected regionally with oncologists in the inpatient and outpatient sectors, social services in the local hospitals, psycho-oncologists, youth welfare staff, pediatric psychotherapists, pediatric psychiatrists, and medical/psychological psychotherapists with training in family therapy.
Specific family-centered and child-centered therapeutic interventions
When reaching their limits in open discussions with the families the family-SCOUTs may involve specially trained therapists working on the basis of the COSIP (Children of Somatically Ill Parents) manual . They will reinforce the parents’ skills, promote open discussion within the family, and support the children in coping with the given scenario by taking development-psychological aspects into account in an age-appropriate fashion. The setting may involve parental sessions, family sessions, and children sessions. No prior ICD diagnosis is required to receive the sessions fostering the preventive approach of the family-SCOUT concept.
Family-independent tasks of the family SCOUT:
In order to provide support, the family-SCOUTs engage in networking with staff of medical or social sectors and managing interfaces between the in-patient and outpatient sectors, psycho-oncologists, pediatric psychotherapists, pediatric psychiatrists and between families and public services (school, kindergarten) as well as the healthcare system and the youth welfare system.