PubMed · 11912705
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R Maffeo. 2000. Stop struggling.. https://doi.org/10.1097/00005217-200017020-00011
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KEEP EXPLORING
BACKGROUND: This report offers a unique analysis of the psychological distress associated with ovarian cancer in a review of natural correspondence between ovarian cancer survivors and an ovarian cancer newsletter. METHODS: A review of 21,806 letters, cards, and e-mails reflecting correspondence from January 1994 to December 2000 between ovarian cancer survivors and the founding editor of Conversations!: The International Newsletter for those Fighting Ovarian Cancer was performed using ethnographic qualitative research methods. Statements related to the impact of disease were bracketed and coded within physical, psychological, social, and spiritual domains according to the City of Hope Quality of Life Ovarian Cancer instrument. Statements that reflected psychological well being were then evaluated with respect to the disease trajectory (i.e., diagnosis, treatment, remission, recurrence, and advanced disease/end of life). RESULTS: A total of 1282 communications were identified that pertained to psychological well being. Findings based on major themes derived from the analysis included descriptions of stressors associated with disease status. Significant stressors were identified within all phases of diagnosis, treatment, remission, and recurrence. Women described both positive and negative effects of disease and frequently demonstrated resourcefulness and perseverance by sharing coping mechanisms and survival strategies. CONCLUSIONS: The natural correspondence from women with ovarian cancer provided a rare opportunity to capture the psychological concerns of women throughout all stages of the cancer trajectory. Health care professionals' awareness of the common psychological stressors throughout the ovarian cancer trajectory may allow them to identify more readily the needs for support, leading to improvement in overall quality of life.
PURPOSE: The primary purpose of this prospective study was to identify the level of risk for psychosocial distress in families of children newly diagnosed with cancer. Additional study aims were to examine concordance among family and staff reports of psychosocial risk, changes in risk status over time, and to predict the use of psychosocial resources during the first months of treatment. PATIENTS AND METHODS: Caregivers of 125 children newly diagnosed with cancer completed the Psychosocial Assessment Tool (PAT) at diagnosis (t1) and 3 to 6 months later (t2). Primary oncologists and nurses completed an analogous measure of perceived family psychosocial risk at t1 and t2. At t2, oncology social workers reported types and intensity of psychosocial interventions provided. RESULTS: The PAT identified three subsets of families who presented with increasing levels of psychosocial risk at diagnosis. In general, there was moderate concordance among family, oncologist, and nurse reports of psychosocial risk. PAT scores at t1 predicted t2 PAT scores and psychosocial resource use at t2 beyond demographic or disease factors. CONCLUSION: A brief screening tool (PAT) is valuable in identifying psychosocial risk factors at diagnosis and is predictive of later use of psychosocial resources. As a next step in this research, the development of psychosocial interventions to match family risk level may be an effective and cost-efficient approach to working with families to address their concerns and promote short- and long-term adjustment.
GOALS OF WORK: To define and measure the psychological integration of childhood cancer experiences into a personal biography and to explore the association between integration with illness-related factors and psychosocial conditions. PATIENTS AND METHODS: Analysis of cancer survivors' narratives on the course of their illness was used to measure integration. Psychosocial condition, body concepts, health locus of control, and illness-related distress were evaluated by questionnaires. Illness factors were assessed by reviewing hospital case notes and sociodemographic factors by a structured interview. Of 72 eligible subjects contacted, 60 agreed to participate. MAIN RESULTS: High inter-rater correlations established the reliability of the concept of testing integration by narrative analysis. Subjects with good psychological integration of the experience of cancer saw chance as having less to do with illness and health, and perceived illness and therapy retrospectively as more distressing than survivors with poor integration. In contrast, integration did not correlate with distress evoked by present feelings toward illness and therapy or by thoughts of a relapse. CONCLUSIONS: Successful integration of the experience of cancer may be associated with the ability to accept painful feelings and to allow them to emerge, and with a readiness to accept responsibility in relation to health and medical care. Assisting young cancer patients and their families to create and maintain their personal narratives of the experience of illness is an important clinical task for all professionals working in paediatric oncology.