"Mission Impossible"; the Mothering of a Child With Type 1 Diabetes - From the Perspective of Mothers Experiencing Burnout.

PURPOSE: To explore how mothers experiencing burnout describe their mothering of a child with type 1 diabetes mellitus (T1DM), with a focus on their experienced need for control and self-esteem. METHODS: This study used a qualitative, descriptive design and aimed to reveal the experience of mothering a child with diabetes when experiencing burnout. Twenty-one mothers of children with T1DM who were experiencing burnout participated in this study. Data were collected via semi-structured interviews, and content analysis was performed. RESULTS: The main results (latent content of the data) were interpreted in one theme, Mission impossible, an inner feeling derived from an extremely challenging experience of mothering, encompassing involuntary responsibility and constant evaluation. Two sub-themes emerged: Forced to provide extraordinary mothering and Constant evaluation of the mothering. CONCLUSIONS: In addition to monitoring the health of the child with T1DM, it is important for clinicians to pay attention to how mothers experience their daily life in order to support those who are at risk of developing burnout, as well as those who are experiencing burnout. The wellbeing of the mother could influence the wellbeing of the child, as well as the entire family. Further research on perceived parental responsibility, gender differences, psychosocial factors, and burnout is needed. PRACTICE IMPLICATIONS: Knowledge and understanding of how mothers suffering from burnout experience mothering a child with diabetes could help nurses, social workers, psychologists and counselors conducting pediatric diabetes care become more attentive to the mother's situation and have procedures for counseling interventions.

Different Aspects of Psychological Ill Health in a National Sample of Swedish Parents after Successful Paediatric Stem Cell Transplantation.

BACKGROUND: Paediatric hematopoietic stem cell transplantation (HSCT) may have great psychological impact on parents during the intense treatment period as well as many years after a successful transplantation. Since different psychological disorders require different interventions, a differentiation of general distress into specific types of psychological ill health is essential. The aim of this descriptive study was to distinguish anxiety, depression, and burnout, and investigate occurrence and co-occurrence of these in a national Swedish sample of parents of children who had undergone HSCT and survived. PROCEDURE: Established self-report instruments (Hospital Anxiety and Depression Scale, posttraumatic stress checklist, and Shirom-Melamed Burnout Questionnaire) were used to assess parents' subjective suffering. INCLUSION CRITERIA: the child had to be alive; ≤18 years of age; >6 months since HSCT. RESULTS: Four hundred twenty-one eligible parents (220 mothers and 201 fathers) were identified, of whom 284 choose to participate (response rate 67%). In total, 134 parents (87 mothers, 47 fathers) reported clinically relevant levels of one or more of the assessed types of psychological ill health, representing 48% of the responding participants and 32% of the entire national population of parents of children who had undergone HSCT and survived. Anxiety and/or burnout were reported most frequently. A majority reported more than one type of psychological ill health. Depression only was rare. CONCLUSIONS: The findings underscore the importance of recognizing-in research as well as in clinical practice-that different types of psychological ill health may affect parents after successful HSCT. When parents present with psychological suffering, a referral for qualified assessment is warranted to obtain the proper treatment.

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

OBJECTIVE: 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. METHODS: Questionnaires were completed by 260 parents (146 mothers and 114 fathers) 11-198 months after HSCT: the Hospital Anxiety and Depression Scale, the Shirom-Melamed Burnout Questionnaire, the post-traumatic stress disorders checklist, civilian version, and the PTG inventory. Additional variables were also investigated: perceived support, time elapsed since HSCT, job stress, partner-relationship satisfaction, trauma appraisal, and the child's health problems. A hierarchical cluster analysis and a k-means cluster analysis were used to identify patterns of psychological responses. RESULTS: Four clusters of parents with different psychological responses were identified. One cluster (n = 40) significantly differed from the other groups and reported levels of depression, anxiety, burnout symptoms, and post-traumatic stress symptoms above the cut-off. In contrast, another cluster (n = 66) reported higher levels of PTG than the other groups did. CONCLUSIONS: This study shows a subgroup of parents maintaining high levels of several aspects of distress years after HSCT. Differences between clusters might be explained by differences in perceived support, the child's health problems, job stress, and partner-relationship satisfaction.

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

BACKGROUND: A child's 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 child's cancer treatment predicted posttraumatic stress symptoms (PTSS) after completion of treatment. METHOD AND PARTICIPANTS: The sample of this longitudinal study included 62 parents (36 mothers and 26 fathers) of children currently in treatment for malignant disease (T1) and after completion of treatment (T2). Loss of control was assessed at T1 using a self-report measure, that is the loss of control module of the Parental Psychosocial Distress-Cancer questionnaire. PTSS were assessed at T2 using the Impact of Event Scale-Revised. Main analyses were carried out for mothers and fathers separately. RESULTS: The majority of the parents, 55% (n = 34), reported loss of control on more than half of the assessed domains. Only 5% (n = 3) reported no loss of control whatsoever. At T2, some degree of PTSS was reported by 89% (n = 55). These outcomes were similar for mothers and fathers. Loss of control at T1 predicted stronger PTSS at T2 primarily among mothers. CONCLUSION: The experience of loss of control during cancer treatment is a salient risk factor for later PTSS in mothers. The situational threat to the regular parental role is discussed as an explanation to this observation. Interventions should address informational needs, parent participation in care, and professional support to maintain a sense of control and functioning in their parental role.

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

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 child's 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 child's 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 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). METHODS: A total of 252 parents of children with T1DM participated in a population-based study. We used self-report questionnaires to assess symptoms of burnout and background factors. RESULTS: Psychosocial background factors were significantly associated with burnout in parents, whereas there were no associations between sociodemographic or medical factors and burnout. For both genders, parental burnout was associated with low social support, lack of leisure time, financial concerns and a perception that the child's disease affects everyday life. Low self-esteem and high need for control were risk factors for maternal burnout. CONCLUSION: In the screening of risk factors for long-term stress in parents of children with T1DM, we should recognize parents' attitudes as well as situational psychosocial issues. In clinics, we need to pay attention to the day-to-day life circumstances in the support of these parents. Certain factors were associated with the risk for burnout only for mothers, which warrant further investigation of gender aspects. Continued research about the causal relationship between the parental responsibility, psychosocial factors and burnout is warranted.

Can incentives undermine intrinsic motivation to participate in epidemiologic surveys?

Response rates to surveys are decreasing. The purpose of this study was to evaluate the use of lottery tickets as incentives in an epidemiologic control group. A self-administered questionnaire was sent to parents in the municipality of Stockholm, Sweden, who were to be used as a control group in a study addressing stress in parents of children with cancer. A stratified random sample of 450 parents were randomized into three incentive groups: (a) no incentive; (b) a promised incentive of one lottery ticket to be received upon reply; (c) a promised incentive of one lottery ticket to be received upon reply and an additional lottery ticket upon reply within 1 week. The overall response rate across the three groups was 65.3%. The response rate was highest in the no incentive group (69.3%) and lowest in the one plus one lottery ticket group (62.0%). In a survival analysis, the difference between the two response curves was significant by the log-rank test (P = 0.04), with the no incentive group having a shorter time to response than the incentive group. Our findings suggest that the use of lottery tickets as incentives to increase participation in a mail questionnaire among parents may be less valuable or even harmful. Incentives may undermine motivation in studies in which the intrinsic motivation of the respondents is already high.

Parents of children surviving a brain tumor: burnout and the perceived disease-related influence on everyday life.

Parents of children diagnosed with a brain tumor often report distress, even after successfully completed cancer treatment. The aim of this study was to examine predictors of burnout (ie stress-induced exhaustion) in parents of children who have had a brain tumor. Twenty-four mothers and 20 fathers completed self-report questionnaires on 2 occasions at an interval of 7 months. Controlling for generic stress, parents' perception of the influence of the disease on everyday life-predicted burnout symptoms. Moreover, parents' appraisal of a disease-related influence on everyday life showed stability, implying that parental stress may be chronic. The findings encourage furthermore investigation of chronic stress among parents of children diagnosed with cancer.

Coping strategies in parents of children with cancer.

This study examined 395 parents (224 mothers and 171 fathers) of children with cancer in Sweden in terms of coping, assessed using the Utrecht Coping List. The use of each of seven coping strategies among parents of children with cancer was compared with data from parents of children with no serious or chronic diseases. In addition, the relationship between coping strategies and anxiety/depression was examined. No differences in the frequency of using the seven coping strategies were found between the study group and the reference group. Neither did the use of coping strategies differ among parents of children with various types of cancer, nor among parents at various points in time after the child's cancer diagnosis. A more frequent use of active problem-focusing, and a less frequent use of avoidance behaviour and passive reaction pattern, was related to lower levels of anxiety and depression in parents of children with cancer and in reference parents. Analyses of parents of children at different time points after diagnosis and in different diagnostic groups indicated that contextual demands influence the relation between coping and anxiety/depression.

Posttraumatic growth and support among parents whose children have survived stem cell transplantation.

In the current study, we investigated the occurrence of posttraumatic growth (PTG) among parents whose children had had stem cell transplantation (SCT) and survived. Although SCT is well established, it remains stressful and dangerous, and SCT is only performed if there is no other choice of treatment to be considered. A questionnaire batteries including the Post-Traumatic Stress Disorder (PTSD) Check List-Civilian version and the Post-Traumatic Growth Inventory were sent out to a cross-sectional national sample of parents of children who had had SCT six months or more before the study. The response rate was 66% (n = 281). The data were analyzed in relation to parents' appraisal of the event, gender, and perceived social support. The results confirm that SCT in childhood is an event of extreme adversity for the parents. Indications of PTSD were found among an important minority of the parents. Nevertheless, a large proportion of the parents had experienced growth as a consequence of the child's illness. Appreciation of life and personal strength were the domains with the highest scores. Moreover, a higher level of PTG was correlated with a higher level of posttraumatic stress and with an experience of the trauma as more severe. In summary, the study indicates that PTG is a relevant concept for this group of parents.

Swedish dairy farmers' perceptions of animal-related injuries.

Animal-related injuries are among the most common occupational injuries in agriculture. Despite the large number of documented animal-related injuries in dairy farming, the issue has received relatively limited attention in the scientific literature. The farmers' own perspectives and views on risks and safety during livestock handling and what they think are effective ways of preventing injuries are valuable for the future design of effective interventions. This paper presents results from a qualitative study with the aim to investigate Swedish dairy farmers' own experience of animal-related occupational injuries, as well as their perceptions of and attitudes towards them, including risk and safety issues, and prevention measures. A total of 12 dairy farmers with loose housing systems participated in the study. Data collection was conducted by means of semistructured in-depth interviews. Three main themes with an impact on risks and safety when handling cattle were identified: the handler, the cattle, and the facilities. They all interact with each other, influencing the potential risks of any work task. Most of the farmers believed that a majority of the injuries can be prevented, but there are always some incidents that are impossible to foresee. In conclusion, this study indicates that Swedish dairy farmers are aware of the dangers from working with cattle. However, even though safety is acknowledged by the farmers as an important and relevant issue, in the end safety is often forgotten or not prioritized. One concern is that farmers are willing to take calculated risks to save money or time. In situations where they work alone with high stress levels and under economic distress, safety issues are easily given low priority.

SMART cognitive training combined with a parental coaching programme for three children treated for medulloblastoma.

In a pilot study we examined the feasibility of a condensed version of the Swedish Memory and Attention Re-Training on children treated for medulloblastoma combined with a structured coaching programme for their parents. Parental coaching contained the translation of the child's new skills into daily life, and education regarding their own stress mechanisms. Before and after intervention we assessed the children's cognitive performance, social relations and self image as well as their parents stress. All three families continued the programme without interruption. Observations revealed that this condensed version of the programme was more stressful to participants. However, several aspects of the children's attention and memory performance improved from pre to post-training assessment. In addition, all of the children reported enhancement of their social relations and self image. Initially, symptoms of parental stress were pronounced for the three mothers, but fairly low for the fathers. After training and coaching, the stress level of both mothers and fathers was low. Our findings encourage full scale studies examining whether this combination of condensed cognitive training and specific coaching programme for parents may influence not only the children's cognitive performance but also their social relations, self image and their parents stress.

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 child's 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.

Stressors in the daily life of parents after a child's successful cancer treatment.

In previous studies, the report of distress has been documented in parents after successfully completing cancer treatment of a child. It is typically assumed that this distress represents lasting reactions to experiences during active treatment, in the form of post-traumatic stress or less severe crisis reactions. However, some researchers have suggested that parents may also perceive current stressors related to a child's cancer even after successful completion of the cancer treatment. Using two family cases as a framework, we discuss strain and new conditions requiring adaptation in various aspects of the everyday life of parents after treatment completion. In addition, we argue that an examination of psychological exhaustion and fatigue in these parents may be appropriate. Further examination is needed on the nature of parental stress after a child's cancer treatment. The distinction is important, since the appropriate methods for professional support may differ with regard to parents struggling to cope with current stressors and those showing signs of persistent post-traumatic stress or fatigue.

Parents' perceptions of support when a child has cancer: a longitudinal perspective.

Previous research has shown perceived social support to be important for maintaining psychological well-being. However, severe stress may influence a person's perception of the availability and value of support from others. In this prospective study, we investigated changes in subjectively perceived social support among parents of children with cancer. Furthermore, we examined the role of parent gender and emotional distress (anxiety and depression) in predicting change in perceived support. Fifty-one parents (29 mothers and 22 fathers) participated. Perceived support, anxiety, and depression were assessed with self-report questionnaires. Parents were examined on 2 occasions. The initial assessment was completed within the first 6 months of the child's cancer treatment. At the time of the follow-up assessment 12 to 24 months later, cancer treatment was completed for all patients. On a group level, parents reported significantly poorer perceived support at the second assessment. However, further examination showed that for one fourth of the group, perceived support was improved. Depressive symptoms during the child's treatment predicted decline in perceived support. Anxiety and gender were not predictive of a change in perceived support.A comprehensive pediatric care model should pay particular attention to parents with a tottering perception of social support. Furthermore, the findings underscore the importance of early psychosocial attention to avoid negative long-term consequences of depression. Being in the frontline of patient care, the pediatric oncology nurse plays an important role in identifying early parents at risk and in shaping parents' perception of support.

Support-seeking, perceived support, and anxiety in mothers and fathers after children's cancer treatment.

The objective was to examine the relationships between anxiety, the seeking of social support as a coping strategy, and perceived social support among mothers (n=103) and fathers (n=81) of children with successfully completed treatment for cancer. Assessments were done using self-report instruments. The mediating effect of perceived support on the relationship between social support-seeking and anxiety was evaluated through path analysis, and comparisons were done in order to evaluate effects of gender. For mothers and fathers alike, a positive relationship of moderate strength between support-seeking and perceived support was found. Anxiety was negatively related to support-seeking (mothers r=-0.22, p=0.025; fathers r=-0.21, p=0.063) as well as perceived support (mothers r=-0.55, p<0.001; fathers r=-0.41, p<0.001), although the relationship for support-seeking was weak. The path analysis showed that perceived support only to a minor extent could strengthen this association. The significance of support-seeking and perceived support was stronger for mothers than for fathers, as regards their association with anxiety. However, the patterns of interrelations were similar for mothers and fathers. In conclusion, parents' subjectively perceived support appears to be more important for anxiety regulation than their support-seeking coping. In clinical practice, individual variation should be acknowledged, and presumptions of general gender differences avoided.

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 child's 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.