title: A qualitative assessment of psychosocial impact, coping and adjustment in high-risk melanoma patients and caregivers.
abstract: The present study qualitatively assessed the psychosocial impacts experienced by stage III melanoma patients and caregivers throughout the course of the disease, and the coping responses they utilized in an attempt to promote psychosocial adjustment. The purpose of the study was to inform the development of a supportive care strategy for this population. Nineteen stage III melanoma patients and 14 of their caregivers were recruited from the clinical research database of the Melanoma Institute Australia. Data were collected using semistructured telephone interviews and analysed using thematic analysis. Participants reported psychosocial impacts related to diagnosis (shock, panic and devastation), treatment (challenges and unsatisfactory care, pain and limitation, practical impacts, new roles and responsibilities for the caregiver, caregiver inadequacy) and survivorship (ongoing physical problems, watchful waiting, feeling abandoned). They also reported global themes relevant to multiple phases of the disease (emotional distress, disfigurement, injustice, caregiver devaluation). Coping responses were identified related to diagnosis (avoidance), treatment (confidence in the treatment team, taking action) and survivorship (finding a positive meaning, acceptance and moving on) as well as global themes pertaining to multiple disease phases (receiving support, helpful thinking, putting on a brave face, redirecting attention, religion). The current findings support routine screening for the presence of symptoms and psychological distress and appropriate referral when necessary, and for provision of psychosocial interventions to provide information and support to stage III melanoma patients and caregivers. In addition, provision of communication skills training to all health professionals treating melanoma, use of evidence-based strategies for improving patient/caregiver understanding and recall, and routine assessment of patient-reported outcomes to inform clinical practice would be helpful.
authors.affiliation: aSchool of Psychology bDiscipline of Surgery, The University of Sydney cMelanoma Institute Australia dPatricia Ritchie Centre for Cancer Care and Research, Mater Hospital eDepartment of Melanoma and Surgical Oncology, Royal Prince Alfred Hospital, Sydney, New South Wales, Australia.
authors.forename: Jason D
authors.initials: JD
authors.lastname: Tan
authors.forename: Phyllis N
authors.initials: PN
authors.lastname: Butow
authors.forename: Frances M
authors.initials: FM
authors.lastname: Boyle
authors.forename: Robyn P M
authors.initials: RP
authors.lastname: Saw
authors.forename: Amanda J
authors.initials: AJ
authors.lastname: O'Reilly
mesh_terms: D000223:Adaptation, Psychological; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D001291:Attitude of Health Personnel; D001315:Australia; D017028:Caregivers / Q000523:psychology*; D017281:Cost of Illness; D004644:Emotions; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D008297:Male; D008545:Melanoma / Q000473:pathology / Q000523:psychology* / Q000628:therapy; D008875:Middle Aged; D009367:Neoplasm Staging; D010353:Patient Education as Topic; D010361:Patients / Q000523:psychology*; D011369:Professional-Patient Relations; D036301:Qualitative Research; D018570:Risk Assessment; D012307:Risk Factors; D012878:Skin Neoplasms / Q000473:pathology / Q000523:psychology* / Q000628:therapy; D017741:Survivors / Q000523:psychology*