Parental adjustment following their child's completion of acute lymphoblastic leukemia treatment

Abstract

Background Few studies haveexamined parent and family adaptation in the early period following the end of childhood cancer treatment. We examined parent adjustment at the end of their child's treatment for acute lymphoblastic leukemia (ALL). Methods Parents of childhood cancer survivors (CCS), who were 3 months post‐ALL treatment, and parents of typically developing children completed measures of psychological and family functioning. Parents of CCS also completed distress and posttraumatic stress symptom (PTSS) questionnaires related to their child's cancer experience. Results One hundred twenty‐nine parents were recruited: 77 parents of CCS and 52 comparison parents. Overall mean psychological symptoms of depression, anxiety and stress, and family functioning were within normal limits for both groups. Parents of CCS endorsed higher scores for stress, depression, and family problems; however, mean scores for emotional distress were low for both groups, in particular the comparison group. Parents of CCS endorsed low rates of PTSS. Fifty‐one percent of parents of CCS scored above the distress thermometer (DT‐P) clinical cutoff (>4), with items elevated across all six DT‐P domains. However, most parents did not indicate a wish to speak to a health professional about their symptoms. Conclusion Specialist psychosocial intervention may be indicated for only a subset of parents at the end of treatment. As per psychosocial standards of care, effective screening at this timepoint is warranted. Further examination of appropriate timing of psychosocial information and support services that are tailored to parents’ circumstances is needed. eHealth approaches may be appropriate.

Providing Psychological Support to Parents of Childhood Cancer Survivors: ‘Cascade’ Intervention Trial Results and Lessons for the Future

“…Second, the lack of a positive finding may have been due to Cascade’s preventative approach, which did not restrict enrolment to parents with poor HRQL or high distress. Aligning with parents in other studies [ 23 , 72 , 73 , 74 ], many of our participating parents actually reported good HRQL and low depression/anxiety at baseline (Q1) and may have had a low need for further help, limiting the relative improvement that could be achieved. It is possible that a program delivered further off treatment, when survivors’ risk of late medical complications and challenges of developing independence into adulthood are increased, may be more effective.…”

“…Some also expressed surprise that the program was developed for their personal therapeutic benefit, rather than being purely to support research. It may therefore be helpful in future programs to assess participants’ expectations and preferred types of treatment before they commence a group [ 72 ].…”

“…The group approach meant that all parents needed to be English-speaking. Psychosocial and peer-supports accessed by parents outside of the program might have influenced the impact of Cascade, with some parents possibly receiving pre-existing supports from community-based psychologists or through their general practitioner [ 72 ]. Future research examining the impact of the program in families affected by different types of cancers (e.g., leukemias versus brain tumors) would also be valuable, given that different cancer types result in different risks of recurrence and different medical late complications for survivors.…”

Evaluation of a transition to survivorship program for pediatric, adolescent, and young adult cancer patients and caregivers

“…however, there is a subset of parents who experience high levels of distress after their child completes cancer treatment [24,25]. These ndings highlight the need for caregiver support and education during their child's transition to survivorship care; augmented survivorship education may be one approach to mitigate caregiver distress.…”

Screening zur Einschätzung des psychosozialen Nachsorgebedarfs in der pädiatrischen Onkologie (NPO-11) für Selbst- und Elternbericht

“…Auch lange nach Erstdiagnose erfahren SCC körperliche Beschwerden wie chronische Fatigue oder Schmerzen [13,16], Progredienzängste [8] sowie Probleme in Sozialbeziehungen zu Peers und Eltern [24]. Auch intrafamiliäre Konflikte zwischen Eltern können SCC belasten [17]. Sie haben in der Folge ein erhöhtes Risiko für Angst und depressive Symptome, verringerten Bildungs-und Berufserfolg sowie Defizite in der Sozialkompetenz [4].…”