Immediate and sustainable increases in HRQoL indicate that a 4-week rehabilitation program is beneficial for improving psychosocial well-being, while the significant increase in PA levels could be related to general recovery as well. The lack of a control group hampers the evaluation of the rehabilitation program on promoting PA levels in pediatric cancer patients.
ObjectivesTo 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.DesignThe design of this cross-sectional study involves a qualitative content analysis of semistructured interviews.SettingParticipants were consecutively recruited in clinical settings throughout Germany.ParticipantsForty-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).ResultsDuring 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.ConclusionsEven 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.
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.
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.
The results indicate benefits of an inpatient rehabilitation program comprising standard physical therapy as well as aquatic and hippo therapy on postural control and gait after treatment of pediatric patients with cancer.
In Germany all childhood cancer patients and their families are offered the opportunity to participate in a four-week, family-oriented, inpatient rehabilitation program in order to facilitate (re-)integration into everyday life. The aim of this study is to evaluate the effect of this rehabilitation program on motor performance, quality of life (QoL) and fatigue. Motor performance, QoL and fatigue were assessed in 22 childhood cancer patients and 20 healthy siblings at the beginning (t1) and the end (t2) of the four-week rehabilitation program, as well as 6 months later (t3). At t1 significant differences between groups were found in motor performance and physical well-being. Improvements in motor performance, QoL and fatigue were found in both groups. Different preconditions must be considered. Childhood cancer patients as well as healthy siblings benefit from a family-oriented rehabilitation program.
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.
Burden of Parents of Pediatric Cancer Patients in Pediatric-oncological Rehabilitation All family members experience high burden in case of paediatric cancer. Family-oriented rehabilitation (FOR) aims to improve the physical and mental situation of the families. We investigated anxiety and depression (HADS) and cancer-related burden of parents (n = 69) before and after FOR and analysed its association with quality of life of the ill children. At beginning of FOR 70 % of the parents showed moderate to high anxiety scores and 47 % moderate to high depression scores. They reported cancer-related burden such as exhaustion, cancer-related fears and a burden of family's daily life due to the cancer disease. At the end of FOR 40 % of the parents showed moderate to high anxiety scores and 30 % moderate to high depression. Cancer-related burden measured with self-developed items also decreased after FOR. Compared to age- and gender-adapted norm values, mothers show significantly higher anxiety and depression scores, whereas fathers show no differences in depression scores compared to norm values at the end of FOR. Quality of life of ill children and anxiety and depression scores in the parents are significantly associated with each other. Results of the study show that parents stabilise after FOR and improve their mental situation. However, the results also underline the need for long-term psychosocial support for all family members.
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