Early disease surveillance in young children with cystic fibrosis: A qualitative analysis of parent experiences.

BACKGROUND: Sensitive measures of early lung disease are being integrated into therapeutic trials and clinical practice in cystic fibrosis (CF). The impact of early disease surveillance (EDS) using these novel and often intensive techniques on young children and their families is not well researched. METHODS: The Australian Respiratory Early Surveillance Team for Cystic Fibrosis (AREST CF) has operated a combined clinical and research early disease surveillance program, based around annual chest CT scan, bronchoscopy and lung function from newborn screening diagnosis until age 6 years, for over two-decades. To explore parental experiences of EDS in their child, a qualitative study was conducted using audio-recorded, semi-structured interviews in n=46 mothers and n=21 fathers of children (aged 3-months to six years) attending CF centres in Perth and Melbourne, Australia. Themes were developed iteratively using thematic analysis and assessed for validity and confirmability. RESULTS: Parents' experiences were positive overall; affording a sense of control over CF, disease knowledge, and belief that EDS was in the best interests of their child. Challenges included poor understanding about EDS measures leading to anxiety and distress, self-blame surrounding adverse findings, and emotional burden of surveillance visits. Tailored information regarding the practical and psychosocial aspects of EDS were endorsed. CONCLUSION: While experiences were generally positive there is need for information and psychosocial support for parents to mitigate anxiety and develop positive coping strategies surrounding surveillance procedures and results. Managing expectations regarding risks and benefits of disease surveillance in clinical and research settings are important aspects of care.

Quality of life and psychological distress in cancer survivors: The role of psycho-social resources for resilience.

OBJECTIVE: To examine the association between scores on the Protective Factors for Resilience Scale (PFRS) (as a measure of a person's psycho-social resources for resilience) and quality of life as well as symptoms of psychological distress for adult cancer survivors. METHODS: In this cross-sectional study, 295 cancer survivors (59% female) provided background demographic information and completed the PFRS as well as measures of quality of life and psychological distress previously validated with cancer survivors. Most of the survivors were diagnosed with breast or prostate cancer. RESULTS: Analysis of the data confirmed the factor structure for the PFRS for cancer survivors. While controlling for Body Mass Index and age, psycho-social resources were a unique and positive predictor for all quality of life measures as well as being a unique and negative predictor for the measures of psychological distress (depression, anxiety, and somatization). There was a high degree of consistency regarding these findings for male and female survivors. CONCLUSIONS: The PFRS is a brief and valid measure of psycho-social resources for resilience in adult cancer survivors, and scores on the PFRS proved to be a good predictor of quality of life and psychological distress of these cancer survivors. Using the PFRS to assess the psycho-social resources for resilience would be helpful when developing interventions to enhance the psychological health of adults as they adapt to a diagnosis of cancer.

Life is precious: Sarcoma/giant-cell tumors survivors' perspectives on their psychological journey.

OBJECTIVES: Although surviving bone resection/limb salvage surgery treatment is the beginning of the journey towards recovery, the importance of providing patients with post-operative psychological support is often overlooked by health professionals. Hence, patients typically are left to their own devices in terms of ensuring their mental health and well-being. Methodological Approach and Participants: This qualitative analysis of seven long-term sarcoma survivors' reflective journal entries provides insights into the different phases of distress, resilience building, resilient growth and advice-giving that they moved through during their survivorship journey. INTERPRETATION: Our findings identify the fragility of patient resilience and highlight areas for future research.