Fear of progression in parents of childhood cancer survivors: prevalence and associated factors.

PURPOSE: Recent research demonstrated that fear of progression (FoP) is a major burden for adult cancer survivors. However, knowledge on FoP in parents of childhood cancer survivors is scarce. This study aimed to determine the proportion of parents who show dysfunctional levels of FoP, to investigate gender differences, and to examine factors associated with FoP in mothers and fathers. METHODS: Five hundred sixteen parents of pediatric cancer survivors (aged 0-17 years at diagnosis of leukemia or central nervous system (CNS) tumor) were consecutively recruited after the end of intensive cancer treatment. We conducted hierarchical multiple regression analyses for mothers and fathers and integrated parent-, patient-, and family-related factors in the models. RESULTS: Significantly more mothers (54%) than fathers (41%) suffered from dysfunctional levels of FoP. Maternal FoP was significantly associated with depression, a medical coping style, a child diagnosed with a CNS tumor in comparison to leukemia, and lower family functioning (adjusted R2 = .30, p < .001). Paternal FoP was significantly associated with a lower level of education, depression, a family coping style, a child diagnosed with a CNS tumor in comparison to leukemia, and fewer siblings (adjusted R2 = .48, p < .001). CONCLUSIONS: FoP represents a great burden for parents of pediatric cancer survivors. We identified associated factors of parental FoP. Some of these factors can be targeted by health care professionals within psychosocial interventions and others can provide an indication for an increased risk for higher levels of FoP. IMPLICATIONS FOR CANCER SURVIVORS: Psychosocial support targeting FoP in parents of childhood cancer survivors is highly indicated.

[Childhood Cancer Patients in a Family-Oriented Rehabilitation Program: Goals and Change in Physical Functioning]. / Krebskranke Kinder in der familienorientierten Rehabilitation: Ziele und Veränderung der körperlichen Leistungsfähigkeit.

PURPOSE: Childhood cancer often leads to physical and psychosocial burdens that can persist beyond the end of treatment. Family-oriented rehabilitation programs (FOR) focus on long-term consequences and support families in returning to daily life. The objectives of this study were to describe rehabilitation goals and goal attainment, to analyze the relationship between physical functioning and physical well-being and to examine predictors of changes in physical functioning during the FOR. METHODS: In a prospective observational study, statements of physicians regarding rehabilitation goals, goal achievement and physical functioning of 175 children (<18 years of age at the time of diagnosis of leukemia or central nervous system tumor) at the beginning and the end of a FOR were analyzed. The physical well-being of the patients was assessed from a parent and child perspective. Correlation coefficients were calculated to analyze the relation between physical functioning and physical well-being. Predictors of changes in physical functioning were examined with a multiple regression analysis. RESULTS: The most frequently mentioned rehabilitation goals were the increase of physical functioning and the integration into the peer group. Overall, the goal achievement ranged from 82 to 100%. Physical functioning improved significantly during the FOR. A significant positive correlation between the physician's assessment of physical functioning and the parental assessment of physical well-being could be found at the beginning of the FOR. According to the regression model, female gender of the child and a longer time since diagnosis were associated with a lower change in physical functioning. Furthermore, a higher degree of physical consequential damages was associated with a larger change. CONCLUSIONS: The 4-week multimodal rehabilitation program of the FOR addressed various physical and psychosocial burdens and was accompanied by a significant improvement of the physical functioning of childhood cancer patients. The change in physical functioning was associated with different sociodemographic and medical factors (eg, sex). The consideration of these factors could help with optimizing the program.

Parents' perception of their children's process of reintegration after childhood cancer treatment.

Our objective was to further the understanding of the process of reintegration of childhood cancer patients after treatment and to identify factors influencing that process. Using a qualitative approach, we conducted 49 interviews with parents (n = 29 mothers, n = 20 fathers) from 31 families with a child (<18 years) with leukemia or CNS tumor. Interviews were conducted about 16 to 24 months after the end of the treatment. We used a semi-structured interview guideline and analyzed the data using content analysis. Average age of pediatric cancer patients was 5.5 years at the time of diagnosis; mean time since diagnosis was 3.5 years. Parents reported immediate impact of the disease on their children. Reintegration had gone along with delayed nursery/school enrollment or social challenges. In most cases reintegration was organized with a gradual increase of attendance. Due to exhaustion by obligatory activities, reintegration in leisure time activities was demanding and parents reported a gradual increase of activity level for their children. Parents described several barriers and facilitators influencing the reintegration process into nursery/school and leisure time activities (structural support, social support, health status, intrapersonal aspects). Although many children reintegrate well, the process takes lots of effort from parents and children. Childhood cancer survivors and their families should be supported after the end of intensive treatment to facilitate reintegration.

Fear of progression in parents of childhood cancer survivors: A dyadic data analysis.

OBJECTIVE: Fear of progression (FoP), also referred to as fear of cancer recurrence, is gaining increasing interest in survivorship research as it constitutes a great burden for patients and relatives. However, only little is known about FoP in parents of childhood cancer survivors. The objective of this study was to investigate the impact of FoP on quality of life (QoL) in parental couples. METHODS: We analyzed dyadic data of 197 couples parenting childhood cancer survivors (aged 0-17 years at diagnosis of leukemia or central nervous system tumor) after the end of intensive cancer treatment. The actor-partner interdependence model calculated by structural equation modelling was used to examine actor effects (effect of one's own FoP on one's own QoL) and partner effects (effect of one's own FoP on the partner's QoL). RESULTS: Eighty-one percentage of the parents reported moderate or high FoP levels. Mothers reported higher FoP levels (p < .01) and lower overall QoL levels than fathers (p < .01). The results revealed a significantly positive intra-dyadic correlation between FoP of mothers and fathers of the same dyad (r = .431, p < .001). We found significantly negative actor effects for both mothers and fathers for the overall QoL (p < .001) as well as for several QoL subscales. No significant partner effects were found. CONCLUSIONS: Most parents reported elevated levels of FoP. Our results show that FoP in parents of childhood cancer survivors is strongly negatively associated with QoL. Parental FoP should therefore be explored in future research and needs to be targeted by health care providers.

Returning to daily life: a qualitative interview study on parents of childhood cancer survivors in Germany.

OBJECTIVES: To investigate experiences of parents of paediatric cancer survivors in cancer-related changes in the parents' daily life (work life, family life, partner relationship and social life) during and after intensive cancer treatment and to examine the reintegration process with its impeding and facilitating factors. DESIGN: The design of this cross-sectional study involves a qualitative content analysis of semistructured interviews. SETTING: Participants were consecutively recruited in clinical settings throughout Germany. PARTICIPANTS: Forty-nine parents (59% female) of 31 cancer survivors (aged 0-17 at diagnosis of leukaemia or central nervous system tumour) were interviewed approximately 16-24 months after the end of intensive cancer treatment (eg, chemotherapy). RESULTS: During treatment, more than 70% of parents reported difficulties reconciling paid work, household and family responsibilities and caring for the ill child. Couples spent little time with each other and approximately 25% reported dispute and burden. Many parents did not have enough energy for pursuing any hobbies during treatment. However, over the long term, being faced with the child's disease also led to strengthened relationships, new priorities, improved communication, increased mutual trust and greater appreciation for daily life. Supportive social networks (family/friends/employers), a strong partner relationship prior to the diagnosis and the use of psychosocial services (eg, family-oriented rehabilitation) had a positive impact. At the time of the interview, most families had adapted well. However, reintegration took time and some parents lacked the energy required to continue life as they did before the diagnosis. CONCLUSIONS: Even though most parents successfully readjusted to a new 'normality', reintegrating into daily life after paediatric cancer treatment remains difficult. Professional psychosocial support could help families with the reintegration process. Lastly, clinical staff (eg, physicians, psychologists, social workers) should bear in mind that the burden of parents does not automatically end with the end of intensive cancer treatment.