‘The end of treatment is not the end’: parents' experiences of their child's transition from treatment for childhood cancer

Abstract

Across all themes the process of managing identity changes emerged as a key issue for parents, which needs to be considered. During treatment, health professionals have an opportunity to discuss the impact of finishing treatment and prepare parents for this transition and the challenges that they may face.

Perceptions of changes in clinical, informational, and supportive relationships after end of treatment among parents of young childhood cancer survivors

“…The present study adds to prior research on the parent experience of transitioning off treatment and into LTS—defined in this study by parents as a new phase beginning around two years off treatment—by focusing on parent perceptions of transitions in clinical support. While the personal, emotional dimensions around EOT have been described previously, little qualitative data has been published on how shifting clinical relationships are perceived and how these perceptions relate to parents' engagement in follow‐up care and articulation of unmet information and resource needs. The primary aim of this study was to identify parent perceptions of clinical survivorship care relationships and support and to develop a thematic model that characterizes patterns of parent experience after EOT and into LTS.…”

Anticipatory Guidance and Psychoeducation as a Standard of Care in Pediatric Oncology

“…A number of modalities are potentially effective in providing families anticipatory guidance, provided the content and delivery is matched to the needs and preferences of the particular patient and caregiver. The benefits of anticipatory guidance as an intervention per se are limited in the literature; however, information needs at critical times during the cancer trajectory have been described and, consistent with the adult cancer literature, patients and families want and benefit from information . Although the Children's Oncology Group's Survivorship Guidelines are currently being used as an anticipatory guidance tool for patients and families, standardized, evidence‐based tools for other points along the trajectory are lacking or have not been widely disseminated.…”

“…Correct analyses. No control group.6Lewis, Gunawardena, & Saadwai, 2005Development and qualitative validation of information resources on the Caring Connection Website17 family caregivers and 10 oncology healthcare providers Design features identified as most important were easy navigation, search capabilities, and individualization of content Participants recommended additions of patient‐provider communication, access to online health information, and online support resources Preliminary studies support the feasibility of a Web‐based information and communication resources Minimal justification of qualitative method; formal qualitative approach not used; research questions not clearly stated; correct analyses6Maurice‐Stam, Silberbusch, Last, & Grootenhuis, 2009Descriptive evaluation of a psychoeducational group intervention for children treated for cancer; pre‐ and post‐ assessments of disease‐related skills11 children (8‐12years, all malignancies) and their parents Positive outcomes were found on most items concerning disease‐related skills (e.g., information seeking, relaxation, social competence, and positive thinking). Most favorable outcomes were reported on the item “If I have a question about my disease I know different ways to get an answer” Very small sample, no control group; based on cognitive theory so intervention was not purely psycho‐educational and included some skills training3Meyler, Guerin, Kiernan, & Breatnach, 2010Systematic review of family based psychosocial interventions21 studies identified, with 2 focused on educational/informational support Both educational intervention studies were well‐accepted, impacted outcomes such as locus of control and family hardiness, and highlighted the feasibility of a web‐based medium for provision of this type of support. Right types of papers included (but only 2 fit in the educational/ informational category); appropriately assessed quality of studies; important outcomes considered5Othman, Blunden, Mohamad, Hussin, Azhar, & Jamil Osman, 2010Convenience sample study; pre post assessment of intervention of a 4 session information and coping strategies for new cancer parents41 parents in intervention and 38 waitlist controls Increased knowledge of cancer in the parents who were in the intervention State Trait used to assess anxiety did not show a reduction in anxiety in intervention; rather both groups showed decrease anxiety No significant differences in either groups for symptoms of stress or children's psychological problems before or after intervention …”

“…Although clinicians agree that providing guidance to and educating patients and families is important, pediatric patients and caregivers continue to report unmet informational needs along the cancer trajectory, i.e., from diagnosis, through to end of treatment, and into survivorship or end‐of‐life . Retrospectively, caregivers and pediatric patients indicate that they needed additional guidance and information regarding illness and treatment; treatment decisions; side effects; late effects; tests and procedures; fertility; diet/nutrition; caring for their child; physical and emotional impact; available services and resources for support; appropriate follow‐up care; and impact on the family . As such, a standard of care for providing guidance and education to patients with cancer and their families is overdue.…”

Social support during childhood cancer treatment enhances quality of life at survival [El apoyo social durante el cáncer infantil favorece la calidad de vida en periodo de supervivencia]

“…However, the support provided by nurses and practitioners (mainly, of an informative and emotional nature) usually finishes at the end of the treatment and most patients could experience a certain lack of support at discharge and at survival period. At this phase, this supportive role falls back on the family (McKenzie & Curle, 2012).…”