Pediatrik Nöromusküler Hastalıklarda Sağlık Bakım Hizmetinden Beklenti ve Memnuniyet Durumu ile Bakımverenlerin Bakım Yükünün Araştırılması

Abstract

Babaoğlu, M.C., Investigation of Expectations and Satisfaction from Health Care Services in Pediatric Neuromuscular Diseases and Caregivers' Burden of Care, Hacettepe University Graduate School of Health Sciences Neurology Physiotherapist Program Master Thesis, Ankara, 2022. This study was planned to investigate the expectation and satisfaction from health care services in pediatric neuromuscular diseases and the caregiver burden of caregivers. A total of 108 children aged 5-18 years diagnosed with Neuromuscular disease and their caregivers were included in the study. Demographic information and information about the disease of the participants were recorded. The expectations of patients and caregivers from health care services and physiotherapy and rehabilitation services were evaluated with a questionnaire created by the research team by compiling the questions used in previous studies in the literature and adding new questions. The level of meeting these expectations of the participants was evaluated and recorded with the Visual Analog Scale (VAS). PedsQL Health Care Satisfaction Survey [0-4 (Parental Report)], satisfaction of patients with physiotherapy and rehabilitation services is under four categories by PedsQL Health Care Outpatient Satisfaction Survey- Strengths (PTOPS-Physical Therapy Outpatient Satisfaction Survey). 10-46), Weaknesses (10-50), Location (7-35), Cost (7-35)]. The level of caregiver burden of care was assessed by the Caregiver Stress Scale [BSS (0-13 points)] and the Subjective Caregiver Burden Scale [Self-Rated Burden-SRB (0-100 points)], and high scores indicated high caregiver burden. While the expectations of the patients and their caregivers from the health care service were met at a moderate level [Caregiver = (5 (3-6), sick individual = (5 (4-6)]), the level of meeting the expectations from physiotherapy and rehabilitation service remained at the same level caregiver= (5 (3-6) patient= (5 (4-6)].The PedsQL Health Care Satisfaction Scale score of the caregivers was found to be low with an average of 1.79±0.95. The satisfaction status of the patients was determined by the PTOPS questionnaire results. The level of caregiver's burden of care was moderate [SRB= 42.26±19.49, BSS= 8 (6-9). A positive and low-medium strength relationship was found between meeting the expectations of the rehabilitation service (r=0.30, p<0.05).The state of meeting the expectations of the sick individuals from the health care service and the expectations from the physiotherapy and rehabilitation service While there was a positive, moderately strong relationship (r=0.47, p<0.001) between the situations of meeting the person; A positive low-moderate relationship was found between PedsQL (r=0.30, p<0.05). The results of the study revealed that the approaches of health services and health professionals to meet the expectations of children with NMD and their caregivers can be effective both in increasing the level of satisfaction with health services and in reducing the caregiver burden in the long term.