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.     

The lived experiences of parents of children diagnosed with cancer in Iran

Threatening nature of childhood cancer and the aggressiveness of prescribed treatments place enormous stress on the family of children suffering from cancer. This study was conducted to better understand the lived experiences of parents of children suffering from cancer and to document their account of such experiences. The aim of this research was to describe the lived experiences of parents of children diagnosed with cancer in Iran. This hermeneutic phenomenological study was conducted between June 2008 and May 2009. Data were generated from 15 parents using in-depth interviews to capture their experiences of having children with cancer. Analysis is based on the framework of Diekelmann enabled data interpretation and elaboration of shared themes. One constitutive pattern 'Feeling trapped in the cancer dead end' and four related themes, namely 'Contradiction in reconciliation with situation', 'Doomed to accept', 'Isolation from others' and 'Devastated life', were identified. The results of this study showed that parents feel as if they are trapped by their child's disease. They are affected by several mental, social and familial issues while trying to tolerate their child's illness and conform to the new order of life.     

Children's medical fears, coping behaviour patterns and pain perceptions during a lumbar puncture

This study explored the relationships among medical fears, coping behaviour patterns and acute pain perceptions in 17 children with cancer who were encountering a painful medical procedure. The children completed the Child Medical Fear Scale (CMFS) before undergoing a lumbar puncture (LP), which was videotaped. The children's coping behaviour during the procedure was rated independently and classified as active or passive behaviour. Immediately following the LP, the children, using a pictorial scale, reported their pain perceptions. Most of the children's scores on the CMFS indicated a moderately low level of fear of medical experiences. A majority of the children perceived a great deal of pain during the LP. During the five phases of the painful medical procedure, more than half of the children exhibited a combination of active and passive behaviour. No significant differences were found between exhibited active or passive coping behaviour and reported medical fear levels; however, children who exhibited passive coping behaviour patterns reported more pain than those who demonstrated active coping behaviour. Implications for practice relate to the need for continual preparation and support of children during a painful procedure.     

Facilitating and hindering factors for coping with the experience of having a child with cancer: A Lebanese perspective

Background: Families with a child with cancer face significant emotional and psychosocial stressors. The frequency of childhood cancer is increasing in Lebanon with more than 282 children diagnosed each year. This condition is reported to evoke a range of challenging emotions for parents, yet no studies have been conducted on the facilitating and hindering factors that affect Lebanese parents coping with a child with cancer. Objectives: The purpose of the study was to gain an in-depth understanding of factors facilitating and hindering coping methods of Lebanese parents with a child with cancer. Methods: The study followed purposeful sampling and saturation principles in which 12 parents (mother or father) of a child were interviewed. Data were analyzed following the Utrecht School of phenomenology. Results: Helpful and harmful experiences emerged through the coding process. The enabling factors were social/family support; talking about it; strong religious beliefs; and the communication style of health workers. On the other hand, the deterring factors were the waiting time and the hospital stay; changes in the couple's relationship; and sibling rivalry. Conclusion: These results could be used as the basis for additional research aimed at developing a structured approach to care that endorses the coping processes of Lebanese parents with a child with cancer. Implications for clinical practice: Nursing and medical staff need to be conscious of parents' coping strategies and their impact on family dynamics and the relationship between the family and the health care team.     

Fertility concerns among child and adolescent cancer survivors and their parents: A qualitative analysis

ABSTRACT

Cancer diagnoses and treatment may have long-term effects on fertility. Semistructured interviews were administered to young cancer survivors (<20 years) and their parents (n = 97). Fertility related concerns were reported by 45 participants (46.4%). Themes included: distress regarding potential infertility; the effect of infertility on future relationships, self-esteem, and miscommunications/confusion about fertility status; access to fertility testing; and preservation options. Parents also reported challenges regarding how and when it was developmentally appropriate to talk to their children about fertility. The development of comprehensive consumer-driven approaches to managing the fertility concerns of young survivors and their families is essential.     

Perceptions of support among Swedish parents of children on cancer treatment: a prospective, longitudinal study

Given the important role of parents in ensuring the well-being of their children, their perceived support is crucial for their own, as well as their child's well-being. Perceptions of support were investigated among 214 Swedish parents of 115 children on cancer treatment. Parents answered questions about their satisfaction with their child's care (The Comprehensive Satisfaction with Care, Short Form, Version 4.0 (CASC SF 4.0)) and about their need, opportunity and benefit to talk to health professionals, significant others and other people. Data were collected over telephone at 1 week (T1), 2 (T2) and 4 (T3) months after the child's diagnosis. Parents reported at least moderate satisfaction with all aspects of their child's care, and highest satisfaction with the technical care. Less than half of the parents who reported a need to talk with a psychologist at T1–T3 reported having had the opportunity to do so. The care organization, doctors' interpersonal skills, information provision and availability, nurses' information provision and the availability of psychologists are areas within Swedish paediatric oncology care for which improvement most obviously is needed.     

Optimism and psychological well-being among parents of children with cancer: an exploratory study

Aims: To identify the characteristics of optimistic parents of children with cancer. To examine the relationship between optimism, anxiety, depression, life satisfaction, coping and subjective health perception in parents of children with cancer and parents of healthy children. Methods: One hundred parents of children with cancer were recruited during attendance at Oncology Out‐patient Clinics at a UK Regional Cancer Centre. A comparison group of 117 parents of healthy children was also recruited. All parents completed a questionnaire, providing demographic and medical information relating to the child, dispositional optimism, psychological distress, life satisfaction, coping and subjective health perception. Results: Parents of children with cancer had higher levels of anxiety, depression, optimism, satisfaction with life and subjective health perception than the comparison group. Optimism was significantly correlated with satisfaction with life, subjective health perception, anxiety and depression in both groups. Conclusion: The findings highlight the importance of optimism in relationship to psychological distress in parents of children with cancer. Interventions targeting parents' optimism are recommended as a potential source of coping with adversity within this population. Copyright © 2007 John Wiley & Sons, Ltd.     

Developing Scales for the Assessment of Fatigue in Turkish Pediatric Oncology Patients Aged 13-18 and their Parents

Background: This study was planned in an attempt to develop scales for the assessment of fatigue in pediatriconcology patients aged 13-18 and also for their parents. Materials and Methods: In collecting the study data,we used the Child and Parent Information Form, Visual Fatigue Scale, Scale for the Assessment of Fatigue inPediatric Oncology Patients Aged 13-18 and the Scale for the Assessment of Fatigue in Pediatric Oncology PatientsAged 13-18 for Parents. We also used Pearson correlation analysis, Cronbach alpha coefficient, factor analysisand ROC analysis for the study data. Results: In this study, the total Cronbach alpha value of the parent formwas 0.99, the total factor load was 0.72-0.94 with 95% the total variance being explained. The cutoff point of theparent form is 73 points. The total Cronbach alpha value of the child form was 0.99, the total factor load was0.82-0.95, with 89.4% of the total variance being explained. The cutoff point of the child form was 75.5 points.Conclusions: This study suggests that the Scale for the Assessment of Fatigue in Pediatric Oncology PatientsAged 13-18 and the Scale for the Assessment of Fatigue in Pediatric Oncology Patients Aged 13-18 for Parentsare valid and reliable instruments in assessing the fatigue symptoms of children in Turkey.     

Attachment orientations and psychological adjustment of parents of children with cancer: A matched-group comparison

Objective: To investigate the impact of childhood cancer on parents' adult attachment, social support, marital adjustment, anxiety, and depression. Methods: 30 parents of children with childhood cancer and 30 matched controls completed the following questionnaires: Experiences in Close Relationships-Revised, Dyadic Adjustment Scale-4, Multidimensional Scale of Perceived Social Support, State-Trait Anxiety Inventory – form Y, and Beck Depression Inventory. Results: Parents of children with childhood cancer had a significantly lower dyadic adjustment than controls, and higher levels of insecure-avoidant attachment, state anxiety, and depression. Conclusion: It is important for health-care personnel to take into account these parents' propensity to show increased levels of avoidant attachment during children's treatment to foster effective communication and supportive relationships between clinicians, pediatric patients, and parents.     

Pediatric oncologists' coping strategies for dealing with patient death

ABSTRACT

This research examined pediatric oncologists coping strategies when their patients died of cancer. Twenty-one pediatric oncologists at 2 Canadian pediatric academic hospitals were interviewed about their coping strategies when patients died or were in the process of dying. The grounded theory method of data collection and data analysis were used. Line-by-line coding was used to establish codes and themes and constant comparison was used to establish relations among emerging codes and themes. Pediatric oncologists used engagement coping strategies with primary and secondary responses including emotional regulation (social support and religion), problem solving (supporting families at end of life), cognitive restructuring (making a difference and research), and distraction (breaks, physical activity, hobbies and entertainment, spending time with own children). They also used disengagement coping strategies that included voluntary avoidance (compartmentalization and withdrawing from families at end of life). Given the chronic nature of patient death in pediatric oncology and the emotionally difficult nature of this work, medical institutions such as hospitals have a responsibility to assist pediatric oncologists in coping with this challenging aspect of their work. Future research is needed to evaluate how best to implement these changes on the institutional level to help oncologists cope with patient death and the effect of using these strategies on their quality of life.