Experiences of parents of children surviving brain tumour: a happy ending and a rough beginning

Despite a large number of studies reporting distress in parents after successfully completed cancer treatment of a child, few have explored the influence of current matters. The objective of this study was to explore parents' perceptions of post-treatment influence of childhood brain tumour. Semi-structured individual interviews were performed with the parents of seven children who had completed treatment for various types of brain tumour. Through inductive thematic analysis five key themes were derived, including 16 sub-themes. The key themes relate to: (1) survivor needs related to training and everyday life activities, where parents invested a large amount of time and commitment; (2) the everyday family life was restricted: family life in focus; (3) parenting role and routines had become more demanding; (4) for the parent as an individual daily routine as well as the view of life had changed; and (5) parental concerns and worries regarding the survivor's current and future well-being were amplified.
Findings of the study suggest that the parents in the study struggle with the consequences of tangible strain, as well as existential challenges. Follow-up support should include updated information about the child's present state, and how it can be improved, as well as coaching when assisting and supporting the child.     

Taking Refuge in Spirituality,a Main Strategy of Parents of Children with Cancer: a Qualitative Study

Background: Due to the rise in prevalence of childhood cancer the impact on family caregivers is increasing.Spirituality may be an alleviating factor for improving the quality of parent life. There is a lack of organized spiritualcare in health care facilities, so that this aspect needs more emphasis. Thus this study aimed to evaluate the spiritualstrategy of parents of children with cancer. Materials: This qualitative study was conducted with a conventional contentanalysis approach. Fifteen parents of hospitalized children with cancer at the Oncology and Hematology departments ofgovernmental pediatric hospitals nationwide were purposefully selected. Semi-structured in-depth interviews wereconducted for data collection and inductive content analysis. Results: Eleven sub-themes were extracted in the dataanalysis, which resulted in the generation of three themes: “spiritual strategy,” “spiritual escape” and “spiritual growth”.Conclusion: The spiritual approach of parents of children with cancer had a significant influence on spiritual careand consequently the acceptance of disease and coping with the associated conditions. Spiritual care clearly should beintroduced into the health care system of Iran, particular for the parents of children with cancer.     

Association of psychological vulnerability factors to post-traumatic stress symptomatology in mothers of pediatric cancer survivors

The current study investigated whether individual differences in coping style, lifetime experience of traumatic events, perceived social support, and perceived social constraints were associated with symptoms of post-traumatic stress among 72 mothers of children who had successfully completed cancer treatment. Results suggested that more perceived social constraints and less perceived belonging support were associated with significantly more post-traumatic stress symptomatology, and this association was present after controlling for the effects of child age. Monitoring coping style and lifetime traumatic events were not significantly predictive of post-traumatic stress symptoms. The results of this study indicate that a sense of belonging to a social network as well as comfort expressing cancer-related thoughts and feelings to friends and family may play a key role in mothers' long-term adjustment to this extremely difficult life experience.     

Parents of children with cancer: which factors explain differences in health-related quality of life

Research with parents of children with cancer has identified factors related to their adjustment and coping, but it is not fully understood why some parents do well and others do not. Guided by a stress process model, we examined the interrelationships among a comprehensive set of factors to identify the most important determinants of health-related quality of life (HRQoL) in parents of children in active treatment for cancer. A cross-sectional survey of 411 parents (80% response rate) of children receiving cancer treatment in Canada was conducted between November 2004 and February 2007. The following constructs were measured: background and context factors, child characteristics, family-centered service delivery, caregiver strain, intrapsychic factors, coping/supportive factors and parental HRQoL. The model was evaluated using structural equation modeling. Analysis was stratified by time since diagnosis (i.e., <12 months and ≥12 months). For those within 12 months of their child's diagnosis, family-centred service provision, caregiver strain, and self-perception accounted for 58% of the variation in psychosocial health, whereas caregiver strain and social support explained 50% of the variation in physical health. For parents in the >12 month group, caregiving strain was the only factor with a direct relationship with parental psychosocial and physical health, accounting for 66% and 55% of the variance in these constructs, respectively. Our findings reinforce the need for health professionals to be particularly attuned to family caregivers in the early stages of treatment and identify potential areas for interventions to promote parental health.     

Parental coping with the diagnosis of childhood cancer: gender effects, dissimilarity within couples, and quality of life

OBJECTIVE: Considering coping as dynamic process within the family, effects of gender and diagnosis are investigated. Dissimilarity within couples in coping with childhood cancer is studied longitudinally in its effects on quality of life of mothers, fathers, and the sick children. METHODS: A total of 108 parents out of 54 complete families participated in a prospective study. Twenty-five families had a child newly diagnosed with cancer, 29 families had a child newly diagnosed with juvenile diabetes or epilepsy. The Coping Health Inventory for Parents, the Trier Coping Scales, and the Ulm Quality-of-Life Inventory for Parents were employed 1-2 weeks after diagnosis and again 10-12 weeks after diagnosis. RESULTS: In face of childhood cancer, parents develop more rumination, defense, and information seeking, and less social support seeking strategies compared to the control group. Mothers report more frequent and more effective coping compared with fathers, but mothers and fathers do not differ in their self-reported quality of life. No convergence within couples could be demonstrated in most of the corresponding coping styles. The strongest correlation between mothers and fathers appeared in the religious coping style (r=0.60, p<0.001). Coping dissimilarity within couples in social support seeking and religion is correlated with an improvement of parental quality of life. Parental dissimilarity in information seeking is correlated with a decrease in the child's quality of life. CONCLUSION: Coping dissimilarities between fathers and mothers have differential effects on the family members. For this reason, psychosocial interventions should support dis-synchrony when it appears adaptive, and they should help parents to overcome those differences that negatively affect their child.     

How children cope when a parent has advanced cancer

Objective: When parents are diagnosed with cancer, children experience significant distress. There is little information regarding the nature of this distress and how children cope, particularly when a parent is diagnosed with advanced cancer. This study aimed to explore how children cope, and to identify areas where there may be barriers to children accessing support to enable them to cope. Methods: Semi‐structured interviews were conducted with ill parents with advanced cancer and well parents and/or any children above the age of 7. Interviews were recorded and transcribed fully, and analysed using a constructionist grounded theory approach. Results: Twenty‐eight family participants were interviewed. Four major themes emerged from the data including response to diagnosis, mechanisms of coping, life changes, and positive aspects. Children described being distressed by their parents diagnosis and having concerns related to their parents and their own health. Distraction and maintaining normality were described as the dominant strategies of coping for children, and increased responsibilities and decreased social activity were considered to be the most noticeable of life changes. Parents did not recognise the impact on children to the same degree as described by children and focused on limiting the impact by maintaining normality. Positive aspects described by children and parents included strengthening of relationships and learning to value family members and the important things in life. Conclusions: Open communication within the family may lead to more effective coping and a positive experience for children whose parents have been diagnosed with advanced cancer. Copyright © 2009 John Wiley & Sons, Ltd.     

Family life when a parent is diagnosed with cancer: impact of a psychosocial intervention for young children

When a parent is diagnosed with cancer it can have a profound impact on the family, especially the children. This paper reports on the experience of parental cancer for parents' and their children and the impact of a psychosocial intervention for young children whose parent has cancer. Using a qualitative design, data were generated from separate focus groups with children (n = 7) and parents (n = 6). One‐to‐one interviews were conducted with professionals delivering the intervention (n = 2). Findings indicated that parents are often the gatekeeper to how, when and the context in which children learn about parental cancer. Many parents expressed a lack of confidence and skills as they considered communicating with their children about cancer. Parents stated the need for professional input mainly due to changes in their children's behaviour. Children had a number of fantasies and misconceptions surrounding cancer. This psychological intervention normalized their experience of parental cancer. It also improved children's understanding of cancer and equipped them with coping strategies. Professionals perceived the intervention led to improved family communication and promoted discussion of emotions. Open communication is pivotal for children whose parents have cancer but parents need supported and resourced to promote family coping when diagnosed with cancer.     

Positive psychological changes after breast cancer diagnosis and treatment: The role of trait resilience and coping styles

Abstract

Purpose: This study aimed to examine the relationships among trait resilience, coping styles, and perceived positive psychological changes in women’s lives after breast cancer diagnosis and treatment.

Design: The study adopted a cross-sectional design.

Sample/Method: A total of 201 participants diagnosed with stage I-IV breast cancer were recruited. The average time since diagnosis was 39.14 months. Four rating scales were used to assess the participants’ trait resilience, coping styles, perceived growth, and health-related quality of life. These are the Connor-Davidson Resilience Scale (CD-RISC), the Mini-Mental Adaptation to Cancer Scale (Mini-MAC), the Chinese Posttraumatic Growth Inventory (PTGI), and the Functional Assessment of Cancer Therapy Scale-Breast (FACT-B).

Findings: Hierarchical analysis showed that trait resilience significantly predicted high levels of perceived growth and health-related quality of life. This effect was moderated by Positive-Acceptance coping. The study also found that Negative-Affect coping had a direct effect on lowering health-related quality of life but had no influence on perceived growth.

Conclusions: These findings highlight the facilitating effect of trait resilience and Positive-Acceptance coping on the psychological well-being and perceived growth among breast cancer outpatients.

Implications: Trait resilience may be a protective, even facilitating factor of cancer adaptation. The knowledge that trait resilience offers a way to enhance wellness after cancer diagnosis and treatments may be useful in a clinical setting.     

Health-related quality of life anticipated with different management strategies for paediatric febrile neutropaenia

BACKGROUND: To describe (1) anticipated health-related quality of life during different strategies for febrile neutropaenia (FN) management and (2) attributes of those preferring inpatient management. METHODS: Respondents were parents of children 0-18 years and children 12-18 years receiving cancer treatment. Anticipated health-related quality of life was elicited for four different FN management strategies: entire inpatient, early discharge, outpatient oral and outpatient intravenous (i.v.) therapy. Tools used to measure health-related quality of life were visual analogue scale (VAS), willingness to pay and time trade off.Results:A total of 155 parents and 43 children participated. For parents, median VAS scores were highest for early discharge (5.9, interquartile range 4.4-7.2) and outpatient i.v. (5.9, interquartile range 4.4-7.3). For children, median scores were highest for early discharge (6.1, interquartile range 4.6-7.2). In contrast, the most commonly preferred strategy for parents and children was inpatient in 55.0% and 37.2%, respectively. Higher current child health-related quality of life was associated with a stronger preference for outpatient management.Conclusion:Early discharge and outpatient i.v. management are associated with higher anticipated health-related quality of life, although the most commonly preferred strategy was inpatient care. This data may help with determining more cost-effective strategies for paediatric FN.     

Work Stress,Coping Strategies,and Health-Related Quality of Life among Nurses at an International Specialized Cancer Center

Objective: The main objective of this study is to identify work stress, coping strategies, and health-related quality of life and the relationship between them among oncology nurses. Methods: A cross-sectional design was conducted at King Hussein Cancer Center. A convenience sampling technique was used to select 446 nurses. A self-administered questionnaire was utilized using three scales: the Work Stressor Inventory for Nurses in Oncology, Revised Ways of Coping Checklist, and Research and Development 36-Item for Health Survey. Results: The results showed that the levels of work stress (2.61/5), using coping strategy scale (1.59/4), and health-related quality of life scale (50.54/100) were moderate. The total mean value of the work stress scale had a significant positive correlation with the total mean value of the coping strategy scale (r=0.322*, p < 0.05) and a significant negative correlation with health-related quality of life. Moreover, there is no significant correlation between the total mean value of the coping strategy scale and the health-related quality of life scale (r=0121, p >0.05). Age and years of experience were negatively correlated with health-related quality of life (r=0.217 and 0.182 respectively, p < 0.05). Conclusion: Oncology nurses had a moderate level of work stress, coping strategy scale, health-related quality of life scale. Work stress has a significant correlation with using coping strategies and health-related quality of life among oncology nurses. Proper training regarding effective coping strategies is required. More studies are recommended to examine work stress, coping strategy, and health quality of life among oncology nurses.     

A Mixed Methods Assessment of Coping with Pediatric Cancer

The purpose of this study was to describe child coping and parent coping assistance with cancer-related stressors during treatment. Fifteen children (age 6–12) with cancer and their parents (N = 17) completed semistructured interviews and self-report measures to assess coping and coping assistance. Results suggest families utilized a broad array of approach and avoidance strategies to manage cancer and its treatment. Quantitative and qualitative assessments provided complementary and unique contributions to understanding coping among children with cancer and their parents. Using a mixed methods approach to assess coping provides a richer understanding of families’ experiences, which can better inform clinical practice.     

The emotional response of families to children with leukemia at the lower socio-economic level in central Mexico: a preliminary report

Little research has been done in developing countries on the emotional impact experienced by families who have a child diagnosed with leukemia. This preliminary study looked at parents in Mexico who had to cope with their child's leukemia in the face of meager financial and social resources. The 51 children in the study were under 15 years and being treated for leukemia in hospitals affiliated with the Mexican Social Security Institute (IMSS) where their parents were interviewed using a questionnaire to ascertain their emotional responses to the illness. The data are analyzed and reported in five domains: perceived illness; psychological impact; coping strategies; family relationships; socio-economic impact. A strengthening of family bonds was found the most common response (82.4%). The second most common responses were concern for the expenses incurred by the illness and the time dedicated to caring for the sick child (both 78.4%). It is especially important to assess families with meager social and financial resources as to their emotional responses to life-threatening illness because these limitations impose greater burdens and make coping more difficult. Psychosocial interventions are key to ensuring adequate treatment of the child in these circumstances.     

Modeling the dyadic effects of parenting,stress, and coping on parent–child communication in families tested for hereditary breast-ovarian cancer risk

Genetic testing for BRCA genes, associated with hereditary breast-ovarian cancer risk, is an accepted cancer control strategy. BRCA genetic testing has both medical and psychosocial implications for individuals seeking testing and their family members. However, promoting open and adaptive communication about cancer risk in the family is challenging for parents of minor children. Using prospective data collected from mothers undergoing BRCA genetic testing and their untested co-parents (N = 102 parenting dyads), we examined how maternal and co-parent characteristics independently and conjointly influenced the overall quality of parent–child communication with minor children. Statistical associations were tested in accordance with the Actor–Partner Interdependence Model. Significant Actor effects were observed among mothers, such that open parent–child communication prior to genetic testing was positively associated with open communication 6 months following receipt of genetic test results; and among co-parents, more open parent–child communication at baseline and greater perceived quality of the parenting relationship were associated with more open parent–child communication at follow-up. Partner effects were also observed: co-parents’ baseline communication and confidence in their ability to communicate with their minor children about genetic testing was positively associated with open maternal parent–child communication at follow-up. These results demonstrate that for families facing the prospect of cancer genetic testing, perceptions and behaviors of both members of child-rearing couples have important implications for the overall quality of communication with their minor children, including communication about cancer risk.     

Swedish mothers and fathers of children with cancer: perceptions of well-being, social life, and quality care

The overall aim was to describe and compare well-being, social life, and quality care among parents of children with cancer with respect to mothers versus fathers and whether the children were on versus. off treatment. The Life Situation Scale for Parents (LSS-P) was answered by 320 parents, comprising 85 mothers and 71 fathers of children on treatment, and 93 mothers and 71 fathers of children off treatment. The results show that the well-being of parents of children with cancer is affected by their child's situation, and that they experience such things as economic strain and a sense of being dependent on the care provided, especially during the child's treatment phase. Mothers whose children are receiving treatment see their life situation as less satisfying, and report being sadder and having lower self-esteem.     

Swedish Mothers and Fathers of Children with Cancer: Perceptions of Well-Being,Social Life,and Quality Care

The overall aim was to describe and compare well-being, social life, and quality care among parents of children with cancer with respect to mothers versus fathers and whether the children were on versus. off treatment. The Life Situation Scale for Parents (LSS-P) was answered by 320 parents, comprising 85 mothers and 71 fathers of children on treatment, and 93 mothers and 71 fathers of children off treatment. The results show that the well-being of parents of children with cancer is affected by their child's situation, and that they experience such things as economic strain and a sense of being dependent on the care provided, especially during the child's treatment phase. Mothers whose children are receiving treatment see their life situation as less satisfying, and report being sadder and having lower self-esteem.     

Swedish mothers and fathers of a child diagnosed with cancer--a look at their quality of life

Quality of life was investigated among Swedish mothers (n = 118) and fathers (n = 83) of children on (n = 57) and off (n = 68) cancer treatment. Parents completed the G?teborg Quality of Life Instrument, measuring (a) burden of 30 symptoms organized as follows: depression, tension, head, heart-lung, metabolic, musculo-skeletal, and gastrointestinal-urinary symptoms, and (b) experience of well-being with regard to 18 items organized as follows: physical, social, and mental well-being. Fathers reported higher mental well-being than mothers and more mothers than fathers reported symptoms of depression. Within the same family (n = 70), mothers reported lower mental well-being and more symptoms than fathers. Parents of children on treatment (n = 92) reported lower social and mental well-being and more symptoms of depression than parents with children off treatment (n = 101). The findings suggest that fathers experience a better quality of life than mothers and that parents of children off treatment enjoy a better quality of life than parents of children on treatment.     

Survivorship: a qualitative investigation of Latinas diagnosed with cervical cancer

Latinas experience high rates of cervical cancer (CCA) in the U.S. This health-related quality of life (HRQOL) qualitative study was conducted with key informant and focus groups (N = 26). The results indicate that overall Latinas experience persistent concerns: Physical challenges including pain, and bladder, bowel, and sexual health problems; medical care barriers (e.g., difficulties accessing quality care, poor patient-physician relationship); functional issues including employment difficulties; and personal concerns including family and relationship burdens. Spiritual, familial, and cultural factors promote coping and well-being but may delay care seeking. In summary, Latinas diagnosed with CCA face a burdensome survivorship experience. Increases in medical and psychosocial services are greatly needed for Latinas to improve cancer outcomes including HRQOL.     

Assessing the experience of social support for parents who attended Camp Trillium's pediatric oncology family program

When a child is diagnosed with cancer, the entire family is affected by the demands of the illness and its treatment. This study aimed to provide a more nuanced understanding of the experience of parents of children with cancer when participating in therapeutic recreation programs (such as summer camp) and to address the specific knowledge gap of the role that camp may play in providing social support for these families. In particular, this study aimed to enroll mothers and fathers, as the voice of fathers has previously been missing in research about cancer camps. Method: Qualitative methods were used to better understand the experiences of parents (n = 85) attending Camp Trillium's family program between June 26th and August 31st of 2012. Data obtained were analyzed using a grounded theory approach and thus coded and then grouped using thematic analysis. Parents reported that they experienced valuable peer interaction and experienced an increase in their perceived social support. They also stated that this support was sustained outside of the camp experience. Parents highlighted the important aspects of camp as: the empowering setting, time to escape the treatment routine, and rebuild familial relationships. From the qualitative interviews, five distinct themes were explicated: (a) empowering setting, (b) restoring family relationships, (c) valuable peer interactions, (d) information sharing, and (e) group tensions. In addition to respite and recreational opportunities, camp provides access to an environment and community that has the ability to provide sustained and empowering support for parents dealing with childhood cancer, notably for fathers.