Illness trajectories in patients with amyotrophic lateral sclerosis: How illness progression is related to life narratives and interpersonal relationships

• DOI: 10.1111/jocn.14003
• Publication Date: 2017-08-09T21:06:37Z
• Authors: Sabrina Cipolletta; Giorgia Rosamaria...; Arianna Palmieri
• Keywords: Adult; Aged, 80 and over; Male; Narration; Amyotrophic Lateral Sclerosis; Middle Aged; 3. Good health; 03 medical and health sciences; 0302 clinical medicine; Italy; amyotrophic lateral sclerosis; chronic illness; health psychology; illness trajectories; qualitative methods; Nursing (all)2901 Nursing (miscellaneous); Disease Progression; Humans; Female; Interpersonal Relations; Longitudinal Studies; Qualitative Research; Aged

To identify illness trajectories in amyotrophic lateral sclerosis by analysing personal, social and functional dimensions related to progression.Previous studies have considered some psychological distinct variables that may moderate progression, but no research has combined an extensive qualitative understanding of patients' characteristics progression.A mixed-methods approach was used combine quantitative measures. Illness progression assessed through a longitudinal design.Eighteen patients with attending Neurology Department northern Italy participated the study. Semi-structured interviews explore personal experience, dependency grids assess distribution dependency; ALSFRS-R neuropsychological screening were, respectively, measure physical cognitive impairment. disease, re-administered after 8 months mortality rate considered. Data were analysed using grounded theory approach.Illness changed according perception trust placed medical care, self-construction dependency. Based on these categories, cases had similar experiences grouped, four identified: aggressiveness, threat, constriction guilt.The findings suggest it is possible different sclerosis.Personalised intervention strategies be construed based identified.