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.     

Adolescent's stress responses and psychological functioning when a parent has early breast cancer

Objective: To identify factors associated with psychological functioning in adolescent children of early‐stage breast cancer patients. Method: Adolescents' self‐reported psychological functioning using the Child Behaviour Checklist (YSR), Mental Health subscale of the Child Health Questionnaire (CHQ‐MH) and Child Impact of Events (C‐IES) scale. The Family Assessment Device (FAD) and the Family Environment Scale (FES cohesion subscale) assessed family functioning. Maternal depression was assessed on the Beck Depression Inventory (BDI) and quality of life using the SF8. Using a cross‐sectional within‐groups design, assessments were obtained for 56 adolescents of 11–17 years. Results: High rates of stress were found (C‐IES) in 33% males and 45% females. Thirty percent of adolescents reported psychological problems (YSR) (28% males and 32% females) when compared with published norms. Poor family functioning was linked with YSR internalising and externalising problems; poor family cohesion with higher externalising and total YSR psychological problems. Maternal depression was linked with adolescent‐reported internalising problems. Conclusions: When mothers have breast cancer, a substantial minority of their adolescent children have psychological and stress response‐related problems linked with poor family functioning. These results argue in favour of a family‐oriented approach to psychological support of breast cancer patients. Copyright © 2008 John Wiley & Sons, Ltd.     

Psychosocial interventions for adolescent cancer patients: a systematic review of the literature

Objective: Both cancer diagnosis and the consequent treatment are particularly challenging for adolescent patients. Adjuvant psychological interventions to reduce cancer‐related distress are therefore a fundamental part of a multidisciplinary treatment. Assuming that psycho‐oncology has to consider developmentally specific aspects, this review summarizes empirical studies of the efficacy and effectiveness of psychosocial interventions for adolescent cancer patients. Methods: Electronic searches were conducted in four databases. Studies were included only if they were exclusively designed for adolescent cancer patients and incorporated a defined outcome measure to evaluate the effects of the implemented intervention. Results: Only four studies fulfilled the inclusion criteria. One of those studies reported a significant improvement compared with a waitlist control group. The relevant gains were found in the overall level of distress, as well as in additional outcome variables such as knowledge of sexual issues, body image and anxiety about psychosexual issues. The remaining studies revealed no significant changes related to psychological distress and psychosocial functioning. Conclusion: Taken together, the findings point out that there is a lack of intervention research in psycho‐oncology with adolescents. So far, there is only limited evidence for the effectiveness of psychosocial interventions to improve coping with cancer‐associated problems in adolescent patients. Future research needs to be done in this population. In order to establish more conclusive results, larger samples and interventions particularly designed for adolescent patients ought to be studied. Copyright © 2008 John Wiley & Sons, Ltd.     

Social outcomes of long‐term survivors of adolescent cancer

Objectives: The study investigates psychosexual and family outcomes among German long‐term survivors of adolescent cancer. Methods: Survivors of cancer during adolescence (n=820; age at onset of disease: M=15.8 years, SD=0.9, age at follow‐up: M=30.4, SD=6.0 years) completed questionnaires on their family life and their psychosexual and autonomy development. Outcomes were compared to an age‐matched sample (German Socio‐Economic Panel, G‐SOEP, n=820, age: M=30.4, SD=6.7 years) from the general population and to a control group of adults without cancer (n=1027, age: M=31.5, SD=7.0 years). Results: Compared to controls of the same sex, female survivors had achieved fewer developmental milestones in their psychosexual development such as having their first boyfriend, or reached these milestones later, and reported a significantly stronger desire for children. Male survivors were more likely to live with their parents when compared to same sex controls. Equivalent proportions of survivors and persons in the G‐SOEP were living in a long‐term relationship; however, survivors were less likely to have ever married or had children. At first marriage and at the birth of their first child, survivors were significantly older compared to the G‐SOEP. About 14.5% of survivors reported cancer‐related infertility. Conclusions: Survivors of adolescent cancer experience some social late effects of the disease in adulthood, such as a delayed social development as well as substantial differences in their family life and living conditions compared to healthy peers. Copyright © 2010 John Wiley & Sons, Ltd.     

‘We are survivors too’: African‐American youths' experiences of coping with parental breast cancer

Objective: To explore how African‐American youth cope with the diagnosis and treatment of parental breast cancer, and to identify culturally sensitive ways to recruit and sustain participation of this vulnerable population in intervention programs. Methods: Three qualitative focus groups which were part of a larger study were conducted with 12 African‐American youth between the ages of 11 and 18, currently coping with parental breast cancer from the Northeastern part of the United States. Interviews were audio‐taped and transcribed verbatim, and analyzed using content analysis. Results: African‐American youth described fear and uncertainty about the mortality of their parent, their unpredictable future, and discomfort in negotiating breast cancer's relationship with the entire family. Four primary themes emerged which were coping with cancer, it affects us too, changes in family functioning, and growth through pain. African‐American youth described feeling overlooked by their families and oncology staff treating their parents, often being in the role of protecting their parents physically and emotionally. Conclusions: This study suggests that clinicians can improve the care of African‐American breast cancer patients and their adolescent children by being more family‐centered. Adolescents need more developmentally appropriate preparation for the family changes likely to occur when a parent is diagnosed and treated for breast cancer. Developing a support group comprised of other youth coping with parental breast cancer from diagnosis throughout treatment was described as a preferred intervention to promote a shared understanding in order to overcome feelings of isolation, worry, and fear. Copyright © 2010 John Wiley & Sons, Ltd.     

Family history of cancer and risk of pediatric and adolescent Hodgkin lymphoma: A Children's Oncology Group study

Family history of lymphoid neoplasm (LN) is a strong and consistently observed Hodgkin lymphoma (HL) risk factor, although it has been only marginally examined in pediatric/adolescent patients. Here, healthy control children identified by random digit dialing were matched on sex, race/ethnicity and age to HL cases diagnosed at 0–14 years at Children's Oncology Group institutions in 1989–2003. Detailed histories were captured by structured telephone interviews with parents of 517 cases and 783 controls. Epstein–Barr virus (EBV) RNA detection was performed for 355 available case tumors. Two analytic strategies were applied to estimate associations between family cancer history and pediatric/adolescent HL. In a standard case–control approach, multivariate conditional logistic regression was used to calculate odds ratios and 95% confidence intervals (CIs). In a reconstructed cohort approach, each relative was included as a separate observation, and multivariate proportional hazards regression was used to produce hazard ratios (HRs) and 95% CIs. Using the latter, pediatric/adolescent HL was associated with a positive family history (HR = 1.20, 95% CI: 1.06–1.36), particularly early‐onset cancers (HR = 1.30, 95% CI: 1.06–1.59) and those in the paternal lineage (HR = 1.38, 95% CI: 1.16–1.65), with a suggested association for LN in first‐degree relatives (HR = 3.61, 95% CI: 0.87–15.01). There were no discernable patterns for EBV+ versus EBV– HL. The clustering of LN within pedigrees may signal shared genetic susceptibility or common environmental exposures. Heritable genetic risk variants have only recently begun to be discovered, however. These results are consistent with other studies and provide a compelling rationale for family‐based studies to garner information about genetic susceptibility to HL.     

Parental knowledge of fertility in male childhood cancer survivors

Background: In childhood, cancer survivors fertility is a major point of concern. In boys, only semen analysis and impregnation confirm fertility. Since parents constitute a major source of information for children, we investigated recall and assumptions on their child's fertility. Procedure: One hundred and fifty‐nine families with a boy surviving from cancer were asked for recall and expectations on fertility. Results: Fifty‐two percent of parents recalled statements on fertility, in 36% this was not so, 12% did not remember. There were no differences for parental gender and age at diagnosis. In case of intensive treatment parents were better informed. After relapse parents were less informed. Nine percent of the parents expected infertility, 60% was uncertain, 31% expected normal fertility. Conclusions: Based on our and literature findings we conclude that only about half of the parents recalls information on fertility. Lack of information, despite written information, is probably caused by limited oral information provision and defective memorization. One‐third of the parents assumed a normal fertility in their sons. It is highly recommended to check whether parents are adequately informed on fertility at moments they have coped the problems and emotions at initial diagnosis or at relapse, and if needed repeat the information. Copyright © 2007 John Wiley & Sons, Ltd.     

A systematic narrative review of the studies on structured child‐centred interventions for families with a parent with cancer

Objective: To perform a systematic narrative review of the current state of published articles on the structured interventions targeted at children with a parent suffering from cancer. Methods: The study was based on a narrative synthesis approach. Eleven structured child‐centred intervention studies were systematically searched through PubMed, PsycINFO and MEDLINE. The interventions were grouped into two main categories: ‘structured family interventions’ and ‘structured peer group interventions’. Special attention was focused on the preventive purpose of the interventions. Results: The participants (children, parents and health professionals) reported several positive impacts of interventions on children's and parents' psychosocial well‐being, although no improvement or changes were also observed. The effect of interventions on the children was evaluated by structured methods only in five studies. Conclusions: This review showed the lack of valid psychosocial preventive intervention methods focusing on children with parental cancer and highlighted the need of intervention research with controlled study designs and long follow‐up periods. However, an intervention method should be easy to train and applicable to the clinical practice of healthcare professionals. By refining the practice‐based experiences with scientific research evidence it is possible to move to the next level in providing psychosocial support and prevention for children living in families with parental cancer. Copyright © 2009 John Wiley & Sons, Ltd.     

Coping strategies used by children hospitalized with cancer: an exploratory study

Objectives: The treatment of cancer is a stressful and threatening experience, particularly for children. Knowing how children cope with cancer is a crucial step toward designing appropriate psychological interventions that help them ease the burden of cancer treatment. The purpose of this study was to examine the coping strategies used by Chinese children hospitalized with cancer, an area of research that is under‐represented in the existing literature. Methods: Hong Kong Chinese children (9–16‐year olds) admitted for cancer treatment to the pediatric oncology units of two different regional acute public hospitals were invited to participate. A short one‐to‐one structured interview was conducted with each participant. Content analysis was conducted to analyze the interview data. Results: A convenience sample of 88 children was recruited and participated in the interviews during an 8‐month period. The coping strategies used by Chinese children hospitalized with cancer did not differ according to gender and diagnosis, but only according to age, with younger children using less problem‐focused and more emotion‐focused coping strategies than older children. The overall results indicated that 30% of these Chinese patients used problem‐focused coping strategies, while 70% used emotion‐focused coping. Conclusions: Findings from this study indicated that children use different coping strategies at different developmental stages. The study also revealed that Chinese children used more emotion‐focused than problem‐focused coping strategies than their Western counterparts. The information derived from this study will help health‐care professionals design and shape appropriate psychological interventions that can help reduce the burden of cancer treatment. Copyright © 2010 John Wiley & Sons, Ltd.     

It's a choice to move forward: women's perceptions about treatment decision making in recurrent ovarian cancer

Objective: This research explores the treatment decision‐making (TDM) experiences of women with recurrent ovarian cancer (ROC) with regard to treatment options; their understanding of risks and benefits of various treatment options; the decision‐making role they want for themselves and for their oncologist; and the social context of the consultation as it pertains to the decision. Methods: We conducted semi‐structured interviews with 26 women at the time of first recurrence. Through inductive data analysis key themes were identified. Results: Many women describe self‐identifying the cancer recurrence fairly quickly due to new symptoms. Many feel that the goal for treating their recurrence is to control versus cure the cancer. They describe the subsequent process of diagnosis and TDM for ROC as quick and straightforward with all women accepting the oncologists' treatment recommendation. They feel that the type and number of treatment options are limited. They have a strong desire for physician continuity in their care. Participants feel that their doctor's recommendations as well as their previous experience with ovarian cancer are strong factors influencing their current TDM process. Conclusions: Shared decision making is based on a simultaneous participation of both the physician and patient in TDM. When faced with ROC, women feel that their doctor's recommendation and their past experience with treatment and TDM are prominent factors influencing the current TDM process. Copyright © 2009 John Wiley & Sons, Ltd.     

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.     

Disentangling cancer patients' trust in their oncologist: a qualitative study

Objective: Patients' trust in their physician is crucial for an optimal treatment. Yet, among oncology patients, for whom trust might be especially important, research into trust is limited. A qualitative interview study was carried out to investigate (1) to what extent aspects of trust important to cancer patients reflect the aspects described in other patient populations and (2) which additional themes emerge. Methods: In‐depth, semi‐structured interviews were performed with a purposefully selected heterogeneous sample of 29 cancer patients. Transcribed interviews were analyzed using MAXqda. Data were clustered across interviews to derive common themes related to trust. Results: Three commonly described aspects, i.e., fidelity, competence and honesty, were strongly reflected in patients' accounts of trust in their oncologist. Confidentiality was irrelevant to many. An additional aspect, labeled ‘caring’, was distinguished. Central to the accounts of these patients was their need to trust the oncologist, arising from the severe and life‐threatening nature of their disease. This necessity to trust led to the quick establishment of a competence‐based trust alliance. A deeper, more emotional bond of trust was developed only after repeated interaction and seemed primarily based on the oncologist's interpersonal skills. Conclusions: The need for trust encountered in this study underscores the power imbalance between cancer patients and their oncologist. Additionally, these results imply that when aiming to measure cancer patients' trust, what we might actually be assessing is patients' intention and determination to trust their oncologist. Copyright © 2011 John Wiley & Sons, Ltd.     

The perils of a vanishing cohort: a study of social comparisons by women with advanced ovarian cancer

Objective: To examine the role social comparisons play in the experience of ovarian cancer patients and to consider the implications this may have for provision of supportive care services for ovarian cancer patients. Methods: We conducted a longitudinal qualitative study of women with advanced ovarian cancer in Sydney, Australia. Semi‐structured interviews were conducted with women with advanced ovarian cancer over a period of 2.5 years. Social comparisons made by 13 study participants in 33 interviews were extracted and analysed using coding categories based on social comparison theory. Results: Participants favoured downward contrasts and lateral comparisons and avoided downward identifications, upward contrasts and upward identifications. Participants expressed a preference for avoiding contact with ovarian cancer patients, for the company of ‘normal’ others, for normalising information and information that facilitated upward identifications. Conclusions: We suggest that social comparisons made by women with ovarian cancer are influenced by specific clinical factors associated with their diagnosis—in particular, their status as a member of a ‘vanishing cohort’—and argue for further research examining the specific comparison needs and preferences of patients with advanced disease and types of cancer with poor prognoses. Practice implications: These findings raise questions about uniform approaches to the provision of cancer care and suggest that further research may be required to ensure that interventions are appropriately tailored to the supportive care needs of patients with different types and stages of disease. Copyright © 2011 John Wiley & Sons, Ltd.