Advocacy: essential work for mothers of children living with cancer

This paper, based on focus group interviews with mothers whose children have had cancer, describes the advocacy work in which mothers engaged during the period of diagnosis and treatment. Among the mothers' manifold responsibilities, advocacy was one of the most compelling. It was described as if it was a taken-for-granted moral imperative. Some mothers said they felt that it was necessary because of (1) perceived errors during diagnosis or later during the process of treatment; (2) perceived understaffing; (3) advice given by other mothers or fathers; and (4) perceived lack of coordination and communication in the medical care system. Many coped with the need to advocate through educating themselves, by keeping extensive notes and journals and by talking to other parents about their experiences. The paper concludes with clinical practice implications and recommendations for policy consideration including acknowledgment of the significant role of optimal family cohesion for managing the stresses and strains of advocacy and other home health care work; appointment of parent-child advocates associated with hospitals that provide pediatric oncology care; establishment of in-service training and education for guardians and medical care teams regarding their mutual roles and responsibilities; as well as, the provision of guaranteed and paid parental leave policies for guardians whose children have a catastrophic or severe chronic medical condition.     

Social impacts of the work loss in cancer survivors

Background

As cancer frequently occurs during the most productive years of life, our purpose was to estimate the cost of work loss of cancer survivors and develop interventions to minimize the loss.

Methods

We estimated the cost of the work loss from all cancers resulting from patients’ inpatient, outpatient, and non-treatment days. This was calculated with a new method, the product of the “employment rate coefficient × productivity coefficient,” making use of data published by the Japanese Ministries.

Results

The estimate of work loss on treatment days for all cancers was $1820.21 million in men and $939.38 million in women. In terms of disease classification, lung cancer was the largest cause in men, whereas breast cancer was the largest in women. On non-treatment days, the work losses because of gastric, colon, and lung cancers were large in men, while breast cancer was the largest in women and in total. The estimated loss for all cancers was $3685.506 million in men and $2502.565 million in women, when the product was assumed 0.5.

Conclusions

In Japan, breast cancer was considered the leading cause for cost of work loss, and the most influential cause when the product of the “employment rate coefficient × productivity coefficient” for breast cancer was assumed the same as the product for all other types of cancers. It is necessary to establish support systems for working cancer survivors.

     

Interaction patterns between parents with advanced cancer and their adolescent children

Objective: Advanced cancer profoundly affects those with the illness and their families. The interaction patterns between parents with advanced cancer and their adolescent children are likely to influence how a family experiences a parent's dying process. There is little information on such interactions. This study aimed to develop an explanatory model that explains interaction patterns between parents with advanced cancer and their adolescent children and to identify strategies to prepare children for their lives after a parent dies. Methods: Semi‐structured interviews were conducted with 9 parents with advanced cancer, 7 of their spouses/partners, and 10 of their adolescent children. The interviews were recorded, transcribed verbatim, and analyzed using a constructionist grounded theory approach. Results: Twenty‐six family participants were interviewed. Their main concern was not having enough time together. In response, they described a four‐stage process for optimizing the time they had left together: coming to know our time together is limited, spending more time together, extending our time together, and giving up our time together to end the suffering. The adolescents and their ill parents did not change their interaction patterns until they realized their time together was limited by the advanced cancer. Then they spent more time together to make things easier for each other. Conclusions: Time was of great importance to the parents and adolescents; all the participants structured their stories in relation to the concept of time. The model reflects the dynamic process by which families continuously adapt their relationships in the face of advanced cancer. Copyright © 2010 John Wiley & Sons, Ltd.     

Comparative study of work ability between cancer survivors and their referents

Even though cancer survivors are often able to continue working after they have been diagnosed, they may have health impairments resulting in reduced work ability. We studied the current work ability of 591 employed people with an early-stage of breast cancer, lymphoma, testicular or prostate cancer, and 757 referents. We also investigated whether the survivors perceived that cancer had impaired their work ability, and which disease-related, socio-demographic and social factors at work had an impact on their work ability. The work ability of the cancer survivors did not differ from that of their referents. Among the survivors, 26% reported that their physical work ability, and 19% that their mental work ability had deteriorated due to cancer. The survivors who had other diseases or had had chemotherapy, most often reported impaired work ability, whereas survivors with a strong commitment to their work organisation, or a good social climate at work, reported impairment less frequently.     

A multisite evaluation of summer camps for children with cancer and their siblings

ABSTRACT

Summer camps for pediatric cancer patients and their families are ubiquitous. However, there is relatively little research, particularly studies including more than one camp, documenting outcomes associated with children's participation in summer camp. The current cross-sectional study used a standardized measure to examine the role of demographic, illness, and camp factors in predicting children's oncology camp-related outcomes. In total, 2,114 children at 19 camps participated. Campers were asked to complete the pediatric camp outcome measure, which assesses camp-specific self-esteem, emotional, physical, and social functioning. Campers reported high levels of emotional, physical, social, and self-esteem functioning. There were differences in functioning based on demographic and illness characteristics, including gender, whether campers/siblings were on or off active cancer treatment, age, and number of prior years attending camp. Results indicated that summer camps can be beneficial for pediatric oncology patients and their siblings, regardless of demographic factors (e.g., gender, treatment status) and camp factors (e.g., whether camp sessions included patients only, siblings only, or both). Future work could advance the oncology summer camp literature by examining other outcomes linked to summer camp attendance, using longitudinal designs, and including comparison groups.     

Psychosocial impacts of a camping experience for children with cancer and their siblings

BACKGROUND: We conducted a prospective two-group evaluation of pediatric cancer patients and their siblings regarding experiences and affective changes resulting from a 1-week summer camp experience. METHODS: The patients and siblings were assessed prior to camp (Baseline), at the end of camp (Follow-up 1), and again 4-6 months later (Follow-up 2). Assessments included standardized tests for depressive affects, social competency, and a measure of pleasure and participation in camp activities. RESULTS: Sixty-six children were assessed, including 31 (47%) patients and 35 (53%) siblings. Ages ranged from 7 to 17 years. Of the patient campers 19 (61%) had leukemia or lymphoma and 12 (39%) had solid tumors. Results showed marked changes in affective symptoms for patient campers over time (improvements), not shown by sibling campers. For patient campers these affective changes were not present immediately after camp, but were quite significant when measured 4-6 months later. Both patient and sibling campers reflected the same positive memories and pleasure in camp activities over time. For neither group did memories or pleasure fade over time. The camping experience did not have differential impacts on first time versus returning campers. Twelve campers (18% of sample) indicated suicidal ideation on the measure of depressive affects. They did well at camp and presented no special management issues. CONCLUSION: Expectations appear substantially different for patient versus sibling campers. The camping experience appeared to impact these groups differently, with patient campers impacted in ways not experienced by sibling campers.     

Care and support needs of children and young people with cancer and their parents

The importance of psychosocial support services for children with cancer and their families is recognised but evaluation of such services is less well developed with little information available about different patterns of provision. This paper provides an overview of psychosocial support children and their families in the UK receive during and after treatment. It reports the results of a postal survey of 303 families, within which parents and children identified their satisfaction with support services and also areas of unmet need. Satisfaction was identified in a range of areas, including medical information and support from nurses and social workers. However, areas of unmet need were also highlighted, especially age appropriate facilities, emotional support and information in different formats. Although British government policy currently seeks to develop standards and guidelines of care throughout the National Health Service, this paper demonstrates that there is still a need to develop psychosocial support services and work towards recently established guidelines in order to ensure that families receive flexible but equitable packages of care and support, wherever treatment is received.     

Social welfare and legal constraints associated with work among breast and prostate cancer survivors: experiences from Ireland

Introduction  

Around 40% of cancer survivors are of working age. We investigated employment outcomes among survivors in Ireland where sick leave and sick pay are at the employers’ discretion and the law affords no protection against dismissal following extended absence.     

Value of professional collaboration in the care of children with cancer and their families

The aim of this study is to describe professionals' perception of collaboration and their evaluation of a professional collaborative model for children with cancer in mid-Norway. Health and non-health professionals from the families' home communities were invited to participate in the study. The selection was based upon professionals working with children treated for cancer at the Department of Paediatrics, University Hospital in Trondheim between 1990 and 1996. Ninety-one of 142 eligible professionals (64%) responded to a questionnaire. Both health and non-health professionals agreed that collaboration takes care of the family's situation (76%) as well as broadening their own knowledge (77%). Two-thirds considered they had received enough information necessary for follow-up care, however, only 28% believed that families were confident that professionals had this knowledge. More than 80% of professionals considered collaborative meetings and support groups, essential elements of the model, as being effective methods for follow-up care. However, only 39% of professionals had participated in collaborative meetings and 46% in support groups. In addition, only 26% received systematic supervision. Health and non-health professionals regard collaboration as being valuable in follow-up care for children, their families and professionals themselves. However, our results suggest areas of potential improvement in the existing model.     

Developing psychosocial aftercare for children surviving cancer and their families

More children than ever are surviving childhood cancer. However, the medical and psychosocial consequences of their longer survival are becoming clear for former patients and their families, underlining the need for aftercare. Whereas the need for medical follow-up programs is widely recognized, psychosocial aftercare is still in its infancy. This paper presents a systematic approach to developing psychosocial aftercare based on evidence from research studies. First, the family member most in need of aftercare is identified. Research findings indicate that the child surviving cancer is most seriously affected by the cancer experience, followed by mothers and fathers, whereas siblings are least affected. Accordingly, former patients and parents should be the primary target groups. Second, different types of interventions need to be developed based on the nature of the problems of the target groups and the individual's level of adjustment. Finally, psychosocial aftercare programs need to demonstrate their effectiveness in reducing late effects and improving the quality of life after treatment ends. If our aim is to cure the child truly of cancer, than the development of psychosocial aftercare, its clinical application, and evaluation of its effectiveness will be the challenge for paediatric psycho-oncology in years to come.     

Breast cancer in young families: a qualitative interview study of fathers and their role and communication with their children following the diagnosis of maternal breast cancer

Objective: To explore father–child communication following the diagnosis of maternal breast cancer, examine disparities in their understandings of the impact of the illness, and identify gaps in their need for support and information. Methods: The design is the qualitative interview study with thematic analysis. The interviews were home‐based with fathers and children in Oxfordshire, UK. The participants were 26 fathers whose partners had early breast cancer and 31 of their children aged between 6 and 18 years. Results: Fathers described graphically their reaction to news of their partner's breast cancer and their attempts to provide support for their partners and maintain normal family life for their children. Fathers were keen to reassure and protect children but often said that they lacked sufficient information about breast cancer—especially side effects of treatments. Fathers sometimes did not recognise the extent of their children's distress and some interpreted their children's reactions as ‘bad behaviour’ or ‘rudeness’. Children were often acutely aware of the father's emotional state, and expressed a wish to protect him. Some fathers would have liked an opportunity to talk to a clinician directly about the children but did not want to claim clinical time for themselves or their children. Conclusion: This study suggests that clinicians could improve their care of breast cancer patients by being more family‐centred. Fathers routinely need more information and preparation about the likely impact of the illness and its treatment (especially side effects) on the mother, and how children of different ages may react to the emotional strain. Clinicians need to be prepared to offer to talk to teenagers. Copyright © 2008 John Wiley & Sons, Ltd.     

Siblings of children with cancer

The psychosocial concerns of siblings of children with cancer have been studied for more than 30 years. This article reviews the research and clinical literature on the major stressors affecting siblings of pediatric patients with cancer with particular focus on the coping process. The coping process includes adaptive and maladaptive coping strategies used by the children. Negative and positive sibling psychosocial responses to the diagnosis and treatment of a malignancy are detailed with suggested nursing interventions.     

Congenital abnormalities in children with cancer and their relatives: results from a case-control study (IRESCC).

Several studies have revealed an excess of malformations in children with certain malignancies. A few environmental causes have been identified which may damage the foetus and lead to malformation and cancer. However, most of the numerous recognised cancer/malformation syndromes are genetically determined. This report describes a case-control study of 555 newly diagnosed children with cancer and 1,110 matched controls, chosen from general practitioner lists (GP controls) and hospital admissions (H controls). Their parents were interviewed on topics of possible aetiological significance and medical records were checked to confirm reports at interview. The numbers of congenital malformations in the index and GP control children, and the relatives of the index children, the GP and H controls are described. There were more children with malformations among the cases (60/555) than among the GP controls (27/555), P < 0.001. The abnormalities in the cases included eight with specific chromosomal/genetic conditions (e.g. Down''s syndrome, XY gonadal dysgenesis, Von Recklinghausen''s neurofibromatosis, Goldenhar''s syndrome) whereas only one GP control child had a chromosomal defect (P < 0.05). Five case children but no GP controls had neural tube defects; this is not statistically significant. No excess of malformations was found in the siblings of cases compared with GP and H control siblings. Case mothers had a small excess of malformations (22/555) compared with GP controls (8/555), P < 0.05. Among more distant relatives the results were difficult to interpret because of the relatively small numbers in the diagnostic subgroups and because of apparent under reporting in grandparents, but no striking differences were seen between case and control relatives. The excess of malformations found in children with cancer, compared with controls, without a similar excess of malformations in their close relatives may indicate that in some (perhaps very roughly one in 20) cases antenatal events may lead both to the malformation and the malignancy.     

A qualitative study of work and work return in cancer survivors

Few studies have examined the impact of cancer on the survivor's quality of work life. The purpose of this qualitative study is to describe the work experiences among a diverse group of cancer survivors and to explore factors influencing decisions about work after cancer diagnosis and treatment. We interviewed 28 participants with a broad range of socioeconomic backgrounds and primary cancer sites. Qualitative results indicate that after learning about their cancer diagnosis, participants had diverse and complex patterns of work return and work change, and experienced a variety of factors that influenced post-cancer decisions. Experiences at work after cancer also varied in relation to how others responded, changes in productivity, effects of cancer and treatment on work, and feelings about work. Most respondents received little guidance from their physicians about work, and many participants described their cancer as impacting their priority of work relative to other aspects of their lives. Our findings reinforce the complexity of measuring employment outcomes and the range of adaptations made to improve the quality of work life. Additional research is needed to identify prognostic factors that can guide clinical or workplace efforts to restore cancer survivors to their desired level of work function and economic productivity.     

Cisplatin disposition in children and adolescents with cancer

Summary The disposition of cisplatin was evaluated in 28 children and adolescents with cancer, as part of a phase II clinical trial. Patients received either 30 mg/m² (11) or 90 mg/m² (17) of cisplatin as a 6-h IV infusion. Serum samples and divided urine collections were obtained over 48 h following completion of the cisplatin infusion, and were assayed in duplicate for total platinum by atomic absorption spectrophotometry. Serum samples obtained up to 4 h after three cisplatin infusions were assayed for parent (free) cisplatin following ultrafiltration. The mean (±SE) elimination half-life of free cisplatin in serum was 1.3 (±0.4) h. Serial serum concentrations of total platinum following 90 mg/m² dosages were adequately described by a biexponential equation. The mean (±SE) serum T_1/2 of total platinum was 0.42 (±0.10) h and the mean (±SE) T_1/2 was 44.43 (±8.24) h. The intercompartment distribution rate constants of a two-compartment kinetic model indicate extensive tissue accumulation of total platinum, with a rate of transport into tissue compartments (K₁₂) that is about six times the rate of transport out of tissues (K₂₁). The mean (±SE) renal clearance of total platinum from 0–3 h was 37.36 (±11.96) ml/min/m² and 35.8 (±13.6) ml/min/m² for the 30 mg/m² and 90 mg/m² groups, respectively. This value decreased to 3.25 (±0.94) and 2.16 (±0.4) ml/min/m² for the two groups by the 6–12 h interval, and remained between 1 and 3 ml/min/m² for the duration of the observation period. The ratio of total plantinum clearance to creatinine clearance decreased significantly(P<0.05) beginning 3 h post-infusion. The change in renal clearance of total platinum is apparently a function of two independent first-order processes for renal clearance of parent drug and cisplatin metabolites.     

Adults' attitudes toward children with cancer

More children with cancer are receiving effective treatment, which allows for increased participation in everyday settings. Yet, little information is available about people's acceptance of children with cancer. This study examined young adults' acceptance ratings for a child receiving chemotherapy for cancer, a child with cancer in remission, and a physically healthy child. Findings did not provide support for a cancer stereotype and call into question whether results of studies using total or global scores from attitude scales should be taken at face value. Adults' responses suggested that they perceived children with cancer as experiencing primarily physical limitations (e.g., less strength and agility). Exposure to information about cancer was related to higher acceptance ratings for children described as having cancer, providing support for the importance of continued efforts to improve knowledge about the effects of this disease.