User perspectives on a psychosocial blended support program for partners of patients with amyotrophic lateral sclerosis and progressive muscular atrophy: a qualitative study.

摘要: Partners are often the main caregivers in care for patients with amyotrophic lateral sclerosis (ALS) and progressive muscular atrophy (PMA). Providing during fatal disease course of these is challenging many experience feelings distress. A blended psychosocial support program based on Acceptance Commitment Therapy was developed to partners ALS PMA. The aim this qualitative study gather insight into experiences different components (program evaluation) discover what gained from following (mechanisms impact). Individual in-depth interviews, about caregivers’ were conducted 23 ALS/PMA enrolled a randomized controlled trial designed measure effectiveness program. program, performed under guidance psychologist, consists psychoeducation, psychological mindfulness exercises, practical tips information, options peer contact. Interviews audio-recorded, transcribed verbatim analyzed thematically. evaluation showed that perceived each component as beneficial but ambivalent reactions expressed exercises contact functions. Caregivers need more personalized respect order timing modules wanted continue longer time. mechanism impact reported they became aware their own situation. They further indicated helped them perceive control over caregiving situation, accept negative emotions thoughts, be there partner feel acknowledged. valued by enhancing self-reflection situation which stimulated make choices line needs increased feeling caregiving. overall appreciated caregivers, should adapted caregivers. Dutch Trialregister NTR5734 , registered 28 March 2016.