Annika Lindahl Norberg

Parent distress in childhood cancer: A comparative evaluation of posttraumatic stress symptoms, depression and anxiety

The aim was to assess symptoms consistent with posttraumatic stress (PTS; cognitive intrusions, avoidance, arousal) related to the childs illness, and generic distress (anxiety, depression) in parents of childhood cancer patients. Outcomes were compared to normative and relevant reference data, and analysed for their dependence on time passed since diagnosis. Swedish parents (266 mothers, 208 fathers) were recruited at two centres. Data from a clinical sample of posttraumatic stress disorder (PTSD) patients and parents of healthy children were used for comparison. The Impact of Events Scale (IES-R) was used for assessing PTS symptoms, and self-report scales for anxiety and depression. Elevated stress and generic distress varied as a function of time from diagnosis. Up to 12% of parents for whom >5 years had passed since diagnosis still reported equally, or more intrusive thoughts, avoidance and arousal when contrasted to patients suffering from PTSD. Parents of recently diagnosed children had more cancer-related intrusive thoughts than those of long-term survivors. Heightened anxiety and depression was most prominent in mothers and fathers up to 2.5 years after diagnosis. In conclusion, severe generic distress characterises the first years after diagnosis, and initially common PTS symptoms are found in a considerable portion of parents years after diagnosis. Clinically, attention should be paid to continuous parent support needs. Individual variation vis-à-vis distress vulnerability should be acknowledged, and presupposed gender differences avoided. When treatment situation asks the most of parents’ collaboration, many are under pressure of severe stress.

Parental traumatic stress during and after paediatric cancer treatment

The objective was to cross-sectionally compare parents of children during (n = 175) and after (n = 238) cancer treatment regarding traumatic stress (intrusion, avoidance, arousal). In both groups, time since childs diagnosis ranged from one month to six years. Intrusion and arousal were more frequent in parents during ongoing treatment, although also reported by many parents after treatment. Stress was evaluated in relation to situational and demographic factors: Parents who had experienced a relapse did not differ from parents of non-relapsed children. Time since diagnosis was only weakly associated with stress. In the stage of completed treatment the risk for severe stress was elevated in parents with lower education and immigrant parents. Mothers reported somewhat higher levels of stress than fathers, although the findings were ambiguous. To conclude, many parents experience high levels of disease-related stress, even after successful treatment. The pattern of stress symptoms may vary according to educational level, ethnicity, and gender.

Increased prevalence of burnout symptoms in parents of chronically ill children.

Aim:  To examine the prevalence of burnout symptoms in the context of parenting a chronically ill child.

Parental burnout in relation to sociodemographic, psychosocial and personality factors as well as disease duration and glycaemic control in children with Type 1 diabetes mellitus.

Aim:  To examine associations between burnout and sociodemographic, psychosocial, personality and medical factors in parents of children with Type 1 Diabetes Mellitus (T1DM).

Burnout in Mothers and Fathers of Children Surviving Brain Tumour

The aim of this paper was to investigate the occurrence of burnout among parents of brain tumour survivors. Burnout was assessed in 24 mothers and 20 fathers of childhood brain tumour survivors, using the Shirom–Melamed Burnout Questionnaire. Parents of children with no history of chronic or serious diseases served as a reference group. Mothers’ burnout scores were significantly higher compared with reference mothers. For fathers, no relation between burnout and being a parent of a brain tumour survivor was established, despite a nonsignificant tendency in the same direction as for the mothers. In conclusion, the parenting burden after a child’s brain tumour may include chronic strain, and this may be particularly taxing for mothers. The findings encourage further studies of psychological exhaustion among parents of children with special needs.The aim of this paper was to investigate the occurrence of burnout among parents of brain tumour survivors. Burnout was assessed in 24 mothers and 20 fathers of childhood brain tumour survivors, using the Shirom–Melamed Burnout Questionnaire. Parents of children with no history of chronic or serious diseases served as a reference group. Mothers’ burnout scores were significantly higher compared with reference mothers. For fathers, no relation between burnout and being a parent of a brain tumour survivor was established, despite a nonsignificant tendency in the same direction as for the mothers. In conclusion, the parenting burden after a child’s brain tumour may include chronic strain, and this may be particularly taxing for mothers. The findings encourage further studies of psychological exhaustion among parents of children with special needs.

Mothers and fathers of children with cancer: loss of control during treatment and posttraumatic stress at later follow-up

A childs cancer can lead to changes in parental role functioning, including loss of control. We studied the extent to which parental perceived loss of control during a childs cancer treatment predicted posttraumatic stress symptoms (PTSS) after completion of treatment.

A longitudinal assessment of work situation, sick leave, and household income of mothers and fathers of children with cancer in Sweden

Abstract Background. The diagnosis of childhood cancer often results in an altered life situation for the parents, characterized by difficulties regarding work, family and household demands. Previous research shows that parents’ work situation and income are impacted, yet, few studies have explored the issue from a longitudinal perspective. This study sought to increase the knowledge about the socio-economic conditions of parents of children with cancer in Sweden by means of a longitudinal assessment of work situation, sick leave, and household income. Material and methods. The sample consisted of mothers (n = 139) and fathers (n = 138) of children with cancer recruited from 2002 to 2004. Data was collected by telephone interviews at six time points, ranging from the time of diagnosis to one year after the end of treatment. Results. Findings showed that parents’ work situation was most evidently impacted during the childs treatment, when the greatest proportions of non-working and sick-listed parents were found. Compared with the time of diagnosis, fewer mothers worked up to three months after the end of treatment, and more mothers were on sick leave one year after the end of treatment. Although the extent of sick leave among fathers did not differ compared with the time of diagnosis, fewer fathers worked one year after the end of treatment. Household income was significantly reduced during the childs treatment and months thereafter, while income was at an equal level as before the diagnosis for most families one year after the end of treatment. Conclusion. The results offer a unique understanding of how mothers’ and fathers’ work situation and income are impacted in the short- and long-term, and give guidance on how to improve the comprehensive support given to parents of children with cancer. Socio-economical issues should be emphasized as these may provide targets for policy interventions aiming to reduce parental strain related to work and finances.

Parental stress and perceived vulnerability at 5 and 10 years after pediatric SCT

With the aim of assessing parental stress after SCT, 73 parents of children and adolescents who underwent SCT 5 or 10 years ago responded to questionnaires on general distress (General Health Questionnaire (GHQ)), disease-related stress (Pediatric Inventory for Parents-short form (PIP-SF)) and perceptions of child vulnerability (Child Vulnerability Scale (CVS)). General distress scores were comparable with the reference groups, but 40% of the mothers at 5 years after SCT reported increased stress levels as compared with 26% in the community-based reference group. Disease-related stress was comparable with the reference group of parents of children who were just off cancer treatment, 5 years after SCT. At 10 years after SCT, scores were lower than the reference group. Perceived child vulnerability did diminish over time, but remained high in parents of SCT survivors, compared with parents of healthy children: 96% of the parents at 5 years after SCT and 76% of the parents at 10 years after SCT scored above the cutoff point. Perceived vulnerability was found to be a predictor for parental disease-related stress. To conclude, although most parents of SCT survivors are resilient, the majority of parents perceive their child to be much more vulnerable as compared with parents of healthy children. This perception is associated with disease-related stress and may induce overprotective parenting.

Patterns of psychological responses in parents of children that underwent stem cell transplantation

Hematopoietic stem cell transplantation (HSCT) is curative in several life‐threatening pediatric diseases but may affect children and their families inducing depression, anxiety, burnout symptoms, and post‐traumatic stress symptoms, as well as post‐traumatic growth (PTG). The aim of this study was to investigate the co‐occurrence of different aspects of such responses in parents of children that had undergone HSCT.

Objective and Subjective Factors as Predictors of Post-Traumatic Stress Symptoms in Parents of Children with Cancer – A Longitudinal Study

Background Parents of children with cancer report post-traumatic stress symptoms (PTSS) years after the childs successful treatment is completed. The aim of the present study was to analyze a number of objective and subjective childhood cancer-related factors as predictors of parental PTSS. Methods Data were collected from 224 parents during and after their childs cancer treatment. Data sources include self-report questionnaires and medical records. Results In a multivariate hierarchical model death of the child, parents perception of child psychological distress and total symptom burden predicted higher levels of PTSS. In addition, immigrants and unemployed parents reported higher levels of PTSS. The following factors did not predict PTSS: parent gender, family income, previous trauma, childs prognosis, treatment intensity, non-fatal relapse, and parents satisfaction with the childs care. Conclusions Although medical complications can be temporarily stressful, a parents perception of the childs distress is a more powerful predictor of parental PTSS. The vulnerability of unemployed parents and immigrants should be acknowledged. In addition, findings highlight that the death of a child is as traumatic as could be expected.