Parents and children's perceptions of distress related to oral mucositis during haematopoietic stem cell transplantation.

AIM: Oral mucositis is a common and debilitating side effect of haematopoietic stem cell transplantation. Our study investigated parents' and children's experiences of oral mucositis treatment and whether the parents' perceptions accurately reflected the children's views. METHODS: We analysed 71 questionnaires completed by the parents of children who had undergone haematopoietic stem cell transplantation, together with 38 questionnaires completed by children who were 7 years of age or over. RESULTS: The parent proxy and child self-reports showed good to excellent agreement. For example, 86% of the parents and 83% of the children reported oral pain and 44% of the parents and 47% of the children reported difficulty swallowing often or very often. The majority of the parents (61%) were satisfied with the pain treatment that had been given to their child. However, the treatment provided for oral mucositis was not altogether consistent. CONCLUSION: Oral mucositis affected the majority of the children undergoing haematopoietic stem cell transplantation, causing considerable pain and discomfort. The parent proxy reports proved to be reliable and are an important supplement to child self-reports on symptoms related to oral mucositis. But there is a clear need to establish more evidence-based care for children suffering from oral mucositis.

Child and Parent Risk and Resilience Factors as Predictors of Long-term Recovery in Youth Undergoing Spinal Fusion Surgery.

OBJECTIVES: Undertreated pediatric postsurgical pain negatively affects health-related quality of life (HRQOL) and functioning and may lead to chronic postsurgical pain (CPSP). Predictors of recovery have been identified but more research is needed, particularly regarding resilience, social factors, and long-term effects. The aim of the present study was to investigate child and parent risk and resilience factors as predictors of long-term postsurgical recovery for adolescents. METHODS: Participants were patients with Adolescent Idiopathic Scoliosis (AIS), 12 to 18 years old, undergoing spinal fusion, and their parents. Recruitment occurred at the orthopedic units at 4 hospitals in Belgium. Data were collected before surgery (T0), at 3 (T1) and 6 weeks (T2), 6 months (T3), and 1 year (T4) post surgery. Multiple regression models were used to evaluate the predictive effect of pain intensity, pain catastrophizing, psychological flexibility, and pain acceptance on long-term functioning, HRQOL, and pain. RESULTS: The sample comprised 100 adolescents and 61 parents. Pain at T0, T1, and T3 and adolescent pain catastrophizing (T0) predicted health-related quality of life, functioning, and pain at T4 (while pain at T2 predicted HRQOL and pain). Parent pain catastrophizing predicted pain at T4. Adolescent and parental psychological flexibility predicted HRQOL, and parent psychological flexibility also predicted pain at T4. Adolescent acceptance at T1 predicted pain, and acceptance at T2 predicted HRQOL, at T4. DISCUSSION: The study identified pain and adolescent pain catastrophizing as risk factors, and adolescent and parental psychological flexibility and adolescent pain acceptance as resilience factors, for long-term recovery in youths undergoing spinal fusion. Postsurgical pain management targeting these factors may therefore promote recovery for these adolescents.

Exploration of psychological distress experienced by survivors of adolescent cancer reporting a need for psychological support.

OBJECTIVE: In this qualitative study, we aimed to provide an in-depth exploration of cancer-related psychological distress experienced by young survivors of cancer during adolescence reporting a need for psychological support. METHODS: Two individual interviews were held with ten young survivors of cancer diagnosed in adolescence. The interviews were audio-recorded and transcribed verbatim. Analysis followed the guidelines for inductive qualitative manifest content analysis. RESULTS: The survivors described distress experienced during and after the end of treatment. Five categories comprising 14 subcategories were generated. The categories included: A tough treatment, Marked and hindered, Not feeling good enough, Struggling with the fragility of life, and finally, An ongoing battle with emotions. CONCLUSION: Young survivors of adolescent cancer reporting a need for psychological support described feeling physically, socially, and mentally marked by the cancer experience. They struggled with powerlessness, insecurity, social disconnection, loneliness, and feelings of being unimportant and a failure, and had difficulties understanding and managing their experiences. These concerns should be addressed in psychological treatments for the population irrespective of which approach or model is used to understand survivors' difficulties. A trans-diagnostic approach targeting processes that underpin different manifestations of distress may be effective.

An acceptance-based intervention for children and adolescents with cancer experiencing acute pain - a single-subject study.

BACKGROUND: Children and adolescents with cancer report pain as one of their most recurrent and troublesome symptoms throughout the cancer trajectory. Pain evokes psychological distress, which in turn has an amplifying effect on the pain experience. Acceptance-based interventions for experimentally induced acute pain predict increased pain tolerance, decreased pain intensity and decreased discomfort of pain. The aim of this study was to preliminarily evaluate an acceptance-based intervention for children and adolescents with cancer experiencing acute pain, with regard to feasibility and effect on pain intensity and discomfort of pain. METHODS: This is a single-subject study with an AB design with a nonconcurrent multiple baseline. Children and adolescents aged four to 18 years undergoing cancer treatment at the Children's University Hospital, Uppsala, Sweden, reporting sustained acute pain were offered participation. Pain intensity and discomfort of pain were measured during baseline and at post-intervention. The intervention consisted of a pain exposure exercise lasting approximately 15 minutes. RESULTS: Five children participated in the study. All participants completed the intervention and reported that it had helped them to cope with the pain in the moment. All participants reported decreased discomfort of pain at post-measurement, three of whom also reported decreased pain intensity. CONCLUSION: The results suggest that an acceptance-based intervention may help children and adolescents with cancer to cope with the pain that is often associated with cancer treatment in spite of pharmacological pain management. The results are tentative but promising and warrant further investigation.

Parents' relationship to pain during children's cancer treatment - a preliminary validation of the Pain Flexibility Scale for Parents.

OBJECTIVES: Pain is one of the most frequent and burdensome symptoms for children with cancer. Psychological acceptance has been shown to be beneficial in chronic pain. Acceptance-based interventions for experimentally induced pain have been shown to predict increased pain tolerance and decreased pain intensity. An acceptance-based pilot study for children with cancer experiencing pain has shown promising results. Further, parental acceptance has been shown to predict decreased child distress. To date, no instruments measuring acceptance in the context of acute pain in children are available. The aim of this study was to develop and evaluate an instrument to measure acceptance in parents of children experiencing pain during cancer treatment. METHODS: A test version of the Pain Flexibility Scale for Parents (PFS-P) was sent to parents of all children undergoing cancer treatment in Sweden at the time of the study. Exploratory factor analysis (n=243) examined numerous solutions. Internal consistency, test-retest reliability and convergent validity were calculated. RESULTS: A three-factor Promax solution best represented the data. The subscales were pain resistance, valued action and pain fusion. Internal consistency was good (α=0.81-0.93), and the total scale and the subscales demonstrated temporal stability (r=0.76-0.87) and good convergent validity (-0.40 to -0.84). DISCUSSION: The PFS-P measuring acceptance in parents of children experiencing pain during cancer treatment is now available, enabling evaluation of acceptance in the context of acute pain in children. The scale shows good psychometric properties but needs further validation.

Children's and adolescents' relationship to pain during cancer treatment: a preliminary validation of the Pain Flexibility Scale for Children.

OBJECTIVES: Children with cancer often suffer from pain. Pain is associated with psychological distress, which may amplify the pain experience. In chronic pain, it has been shown that psychological acceptance is helpful for both adults and children. For experimentally induced pain, interventions fostering psychological acceptance have been shown to predict increases in pain tolerance and reductions in pain intensity and discomfort of pain. A single subject study aiming to nurture psychological acceptance for children with cancer experiencing pain has shown promising results. No instruments measuring psychological acceptance in acute pain are yet available. The aim of the current study was to develop and preliminarily evaluate an instrument to measure psychological acceptance in children experiencing pain during cancer treatment. METHODS: A test version of the Pain Flexibility Scale for Children was sent to all children aged 7-18 years undergoing cancer treatment in Sweden at the time of the study. Exploratory factor analysis was used. Internal consistency, test-retest reliability, and convergent validity were examined. RESULTS: Sixty-one children participated in the study. A two-factor solution with Promax rotation was found to best represent the data. Internal consistency was good to excellent (a =0.87-0.91). The total scale and the subscales demonstrated temporal stability (Intraclass correlation coefficient =0.56-0.61) and satisfactory convergent validity (r=-0.27 to -0.68). DISCUSSION: The Pain Flexibility Scale for Children measuring psychological acceptance in children with cancer experiencing pain is now available for use. This enables the evaluation of acceptance as a mediator for treatment change in the context of acute pain in children with cancer, which in turn is a step forward in the development of psychological treatments to help children cope with the pain during these difficult circumstances. The scale shows good psychometric properties but needs further validation, particularly considering the small sample size.