Emma Hovén

The Influence of Pediatric Cancer Diagnosis and Illness Complication Factors on Parental Distress

Objective We investigated how primary diagnosis and risk for diagnosis-related complication factors influence parental distress after a childs cancer diagnosis. Methods We used a model in which “complicated childhood cancers” were grouped into 1 category, after identifying a set of potentially influential illness complication variables. This category included central nervous system tumors, acute myeloid leukemia, and bone tumors. Parental distress in that category (n=144) was compared with distress after acute lymphoblastic leukemia (n=177) in the child. In addition, comparisons were made between parents of the specific diagnosis groups. A multidimensional questionnaire assessing symptoms of distress was used. Results Parents in the complicated cancer category showed significantly heightened disease-related fear, anxiety, depression, loss of control, late effects-related uncertainty, and poorer self-esteem compared with parents of children with acute lymphoblastic leukemia. Significantly heightened parental distress was associated with the child having been treated with cranial irradiation. Conclusions Relatively heightened distress in parents of children with complicated cancer is influenced by diagnosis-related factors like an intricate prediagnostic phase, and uncertainty about late effects. Heightened vulnerability to distress signals exceptional needs for support and information among parents of children treated for central nervous system or bone tumors.

Does time heal all wounds? A longitudinal study of the development of posttraumatic stress symptoms in parents of survivors of childhood cancer and bereaved parents.

A lack of longitudinal studies has hampered the understanding of the development of posttraumatic stress symptoms (PTSS) in parents of children diagnosed with cancer. This study examines level of PTSS and prevalence of posttraumatic stress disorder (PTSD) from shortly after diagnosis up to 5 years after end of treatment or childs death, in mothers and fathers.

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

Abstract 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 childs 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 childs 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.

The met and unmet health care needs of adult survivors of childhood central nervous system tumors

The purpose of the current study was to examine the persistent health care needs (HCNs) of adult survivors of childhood central nervous system tumors.

Parental Fears Following Their Child's Brain Tumor Diagnosis and Treatment

The objective of this study is to portray the ill- ness-related threats experienced by parents of children after the diagnosis of central nervous system (CNS) tumor. Parents were asked to rate the extent to which they experienced a set of specific fears related to their childs brain tumor and its treatment. Outcomes for parents of CNS tumor patients (n = 82) were compared with those of reference parents of patients treated for acute lymphoblastic leukemia (n = 208). The fears about an illness recurrence and the late effects of treat- ment were most prominent among parents of CNS tumor patients. For 7 out of 11 kinds of fear, parents of CNS tumor patients expressed a stronger fear than the reference group. More than a quarter of the parents of children treated for CNS tumors feared a complete decline of the child. Parents of CNS tumor patients experience relatively heightened cancer related fears in several domains. The fear of devastating consequences felt by one fourth of parents signals the need of indi- vidualized psychological support and information at diagnosis and follow-up to facilitate parental coping with the posttreatment situation.

Persistent impact of illness on families of adult survivors of childhood central nervous system tumors: a population-based cohort study

This study aims to determine the long‐term impact on families of adult survivors of childhood central nervous system tumors. Illness‐related family consequences were studied in relation to modifying determinants.

Parents of children diagnosed with cancer: work situation and sick leave, a five-year post end-of-treatment or a child’s death follow-up study

Abstract Background: Cancer in a child is associated with a significant impact on parental employment. We assessed the proportions of parents of survivors and bereaved parents working and reporting sick leave five years after end of successful treatment (ST)/child’s death (T7) compared with one year after end of ST/child’s death (T6) and the association between partial post-traumatic stress disorder (PTSD) and work situation and sick leave at T7. Participants and procedure: The sample included 152 parents of survivors (77 mothers, 75 fathers) and 42 bereaved parents (22 mothers, 20 fathers) of children diagnosed with cancer in Sweden. Results: The proportions of parents working or reporting sick leave did not differ among mothers and fathers of survivors (92% vs. 96% working, 20% vs. 18% on sick leave) or among bereaved mothers and fathers (91% vs. 90% working, 14% vs. 20% on sick leave) at T7. There was no change from T6 to T7 in the proportion of fathers working (fathers of survivors 91% vs. 96%, bereaved fathers 95% vs. 90%). Although more mothers of survivors (92% vs. 82%) and bereaved mothers (91% vs. 77%) worked at T7 than at T6, this increase was not significant. Fewer bereaved mothers reported sick leave at T7 than at T6 (14% vs. 59%, p < 0.05). Although more fathers reported sick leave at T7 than at T6 (fathers of survivors 18% vs. 8%, bereaved fathers 20% vs. 15%), this was not significant. Partial PTSD was not associated with parents’ work situation or sick leave at T7. Conclusion: Results suggest little adverse effect on work situation and sick leave among parents of survivors and bereaved parents five years after end of ST/child’s death from cancer. However, the pattern of change observed differed between parents, which could potentially indicate possible delayed consequences for fathers not captured in the present paper.

Impressions That Last: Particularly Negative and Positive Experiences Reported by Parents Five Years after the End of a Child’s Successful Cancer Treatment or Death

Objective To describe the experience of parenting a child diagnosed with cancer by examining particularly negative and positive experiences reported by parents of childhood cancer survivors and parents of children lost to cancer. Methods 168 parents (88 mothers, 80 fathers) participated. Data were collected five years after the end of successful treatment or the child’s death. The parents’ experiences were identified by open-ended semi-structured questions about particularly negative and positive experiences of the child’s cancer. An inductive approach was used in which the manifest verbal content of the answers was analysed using content analysis. Results The analysis revealed eight categories of negative experience (child late effects; distressing events; healthcare; impaired relationships; long-term psychological consequences; own reactions; surrounding institutions; the fact that the child got cancer) and seven categories of positive experience (healthcare; improved relationships; long-term consequences for the child; personal development; support systems; treatment outcome; unexpected joy). The categories were related to past events or to the present situation. The findings indicate variations in experiences between parents of survivors and bereaved parents, and between fathers and mothers, as some experiences were only reported by parents of survivors and some experiences were only reported by mothers. Conclusions The results highlight the importance of past and present events to parents, and accordingly the long-lasting impact of paediatric cancer on parents. The results also point to the wide range of negative as well as positive experiences involved in parenting a child diagnosed with cancer, and provide a comprehensive understanding of the overall experience for parents of children with cancer. Specifically, the findings give guidance to healthcare providers by illustrating the need to provide healthcare personnel with continuous training in communication skills, offering parents opportunities to meet other parents in the same situation and increasing the access to psychosocial supportive services and psychological care.

Perceptions of support among Swedish parents of children after end of successful cancer treatment: a prospective, longitudinal study

Abstract Introduction: Most children survive childhood cancer, however parenting a child diagnosed with cancer is a major challenge. The main aim of the current study was to describe Swedish parents’ need, opportunity and benefit of support from healthcare professionals and significant others after end of a child’s successful cancer treatment. Material and methods: Data was collected from approximately one week after end of successful treatment/six months after transplantation (T4, n = 212) up to five years thereafter (T7, n = 137). Parents answered questions via telephone about need, opportunity and benefit of talking to psychologists, social workers, partners and friends. Results: The proportion reporting need of support from healthcare professionals varied between 73% (mothers’ need of support from social workers, T4) and 7% (fathers’ need of support from psychologists/social workers, T7). Need of support from significant others varied between 99% (mothers’ and fathers’ need of support from partners, T4) and 27% (fathers’ need of support from friends, T7). The proportion reporting need of support decreased over time (p < .001), no decrease occurred from three months after end of treatment/nine months after transplantation (T5) to one year after end of treatment/18 months after transplantation (T6). More mothers than fathers reported need of support from friends at T5 (p < .001) and T7 (p < .05) and from psychologists at T7 (p < .05). Opportunities for support from healthcare professionals varied, most reported opportunity for support from significant others. Almost all reported benefit from received support. Conclusion: A declining number reports a need of support over time, however subgroups report an unmet need and almost every parent perceive support from healthcare professionals as beneficial. More parents should get access to psychosocial support services after end of a child’s cancer treatment/transplantation.

Fifteen Challenges in Establishing a Multidisciplinary Research Program on eHealth Research in a University Setting: A Case Study

Background U-CARE is a multidisciplinary eHealth research program that involves the disciplines of caring science, clinical psychology, health economics, information systems, and medical science. It was set up from scratch in a university setting in 2010, funded by a governmental initiative. While establishing the research program, many challenges were faced. Systematic documentation of experiences from establishing new research environments is scarce. Objective The aim of this paper was to describe the challenges of establishing a publicly funded multidisciplinary eHealth research environment. Methods Researchers involved in developing the research program U-CARE identified challenges in the formal documentation and by reflecting on their experience of developing the program. The authors discussed the content and organization of challenges into themes until consensus was reached. Results The authors identified 15 major challenges, some general to establishing a new research environment and some specific for multidisciplinary eHealth programs. The challenges were organized into 6 themes: Organization, Communication, Implementation, Legislation, Software development, and Multidisciplinarity. Conclusions Several challenges were faced during the development of the program and several accomplishments were made. By sharing our experience, we hope to help other research groups embarking on a similar journey to be prepared for some of the challenges they are likely to face on their way.