Parental cancer and the family: Screening for psychosocial risk in parents and their children
Een kankerdiagnose bij één van de ouders is ingrijpend voor het hele gezin. Een aanzienlijk deel van de ouders en kinderen ontwikkelt psychosociale problemen, zoals depressieve- of traumatische stressklachten. Met vroege systematische screening kunnen risicofactoren bij gezinnen in kaart gebracht worden en kan zorg geboden worden die past bij de behoefte van het gezin. Dit beperkt het risico op ernstige of langdurige klachten. Er is echter nog geen passend instrument beschikbaar.
Het doel van dit onderzoek is het ontwikkelen en evalueren van een psychosociaal screeningsinstrument voor gezinnen waarin een ouder kanker heeft. De Psychosocial Assessment Tool (PAT), die in de kinderoncologie wordt gebruikt, wordt aangepast voor gebruik in de volwassen oncologie. Via een studie in meerdere ziekenhuizen wordt onderzocht of de aangepaste PAT geschikt is om kort na de diagnose psychosociale risico’s bij gezinnen in kaart te brengen, en hoe ouders en professionals het gebruik ervan ervaren.
Samenvatting van de aanvraag
Background: When a parent with minor children is diagnosed with cancer, this impacts the entire family. A substantial number of parents and children show psychological problems in the short- or longer term, such as depressive- or traumatic stress symptoms. Early systematic screening of psychosocial risk factors for parent and child psychosocial problems is crucial to prevent worsening of these problems or development of severe long-term problems. However, there are no valid instruments to screen for psychosocial risk in these families. The Psychosocial Assessment Tool (PAT) is a brief parent report screener developed in pediatric oncology that assesses family psychosocial risk for ongoing distress. The PAT maps upon the Pediatric Psychosocial Preventative Health Model. This model conceptualizes how family psychosocial support can be matched to the family’s needs and risk level. To use the PAT for families in which a parent is diagnosed with cancer, the adaptation and evaluation of this instrument is necessary. Study aims: The overall study aim is to develop a brief, reliable and valid screening instrument to assess psychosocial risks in families affected by parental cancer. The key objectives are to: a. adapt the Psychosocial Assessment Tool (PAT) for use with families in which a parent has cancer b. assess the reliability and validity of the PAT c. classify families based on their PAT scores, according to the risk categorization by the Pediatric Psychosocial Preventative Health Model d. compare PAT scores of mothers and fathers to identify potential differences e. assess the relationship between PAT scores and family’s subsequent use of psychosocial services over a 6-month period f. evaluate the acceptability and feasibility of the PAT g. prepare to implement the PAT in the current psychosocial screening system for cancer patients A secondary aim of this study is to develop a framework based on the Pediatric Psychosocial Preventative Health Model to conceptualize families confronted with parental cancer, according to varying psychosocial risk levels and interventions matched to the level of risk. Method: First, the PAT will be adapted based on expert input and literature on empirical risk factors. Input from experts will be obtained through focus groups with oncology professionals and parents. Second, the adapted version of the PAT will be pilot-tested in a small sample of parents recently diagnosed with cancer. Third, a multicenter study across five hospitals is planned, to evaluate the reliability and validity of the PAT. Parents newly diagnosed with cancer with at least one child in the age of 0-18 years old will be approached to participate. One parent per family will be asked to complete the online PAT within the first 6 weeks after diagnosis (T1). To validate the PAT, both parents will be invited to complete several standardized questionnaires at T1 (e.g., assessments of traumatic stress symptoms, family communication, and child adjustment). Six months after diagnosis (T2) both parents will complete these questionnaires again, including a questionnaire on the family’s use of psychosocial services over a 6-month period. In addition, one child (8-18 years) per family will be invited to complete self-report questionnaires on adjustment at T2. Data from T2 will be used to assess predictive validity of the PAT and family use of psychosocial services in relation to PAT risk categorization. Fourth, an acceptability and feasibility study is planned in which health care professionals will be trained in using and interpreting the PAT. Health care professionals and parents will evaluate the feasibility, usability and acceptability of the PAT in oncological practice. Fifth, an implementation plan will be prepared in close collaboration with relevant stakeholders. Sixth, from the start of the project, we will work on an adaptation of the Pediatric Psychosocial Preventative Health Model to make this model applicable to families in which a parent has cancer, presented by means of a topical review. Relevance: Current screeners for adult cancer patients focus on the individual patient, with no systematic attention to the family system. Systematic psychosocial family screening will contribute to early detection of psychosocial risk factors for ongoing distress, which enables timely provision of psychosocial support, matched to the family’s risks and needs. This will prevent deterioration of symptoms or the development of severe long-term problems in parents and children. Implementation: After the current study, the PAT is ready to use in daily practice. Psychosocial family risk screening with the PAT can be added to already used screeners for the individual cancer patient. To achieve a broader implementation across the Netherlands, an implementation plan will be prepared. Parents with cancer and their partners, as well as relevant stakeholders from oncological practice, will be involved throughout the entire study.