Jamie L Luckhaus, Anna Clareborn, Maria Hägglund, Sara Riggare
Balancing feeling 'prepared' without feeling 'devoured': A qualitative study of self-care from the perspective of self-empowered persons living with Parkinson's disease in Sweden
Health expectations : an international journal of public participation in health care and health policy
disabilityrelated scholarly literature focuses highincome countries whereas lack data concerning challenges barriers obstacles opportunities participatory research community engagement global south moreover many frameworks interventions people disabilities pwds designed resourcerich contexts little known translatability low middleincome countries lmics main objective study design pilot interventional approach based innovative framework aimed improving livelihood pwds lmics present mixedmethod study conducted bamenda northwest region cameroon intervention household visits community health workers using innovation best practices informed systematic literature review embedded evidence toolkit called ebase familycentered evidence toolkit disabilities efcetd adapted matrix consisting 43 questions across five categories health education social wellbeing empowerment livelihood 56 pwds identified 30 randomly sampled attrition four participants three datasets baseline qualitative quantitative collected washington group tool exploring type disability gender long one disability facility situation coupled coping strategies context livelihood used design questionnaire baseline data collection qualitative data collected key informant interviews focus group discussions analyzed maxqda quantitative data collected efcetd analyzed means descriptive statistics total 692 pwds female individuals many pwds aged 1020 years 57 sample size physicalmotor disability common type disability recorded 846 mean percentile education increased 299 first visit 702 last visit mean percentile health increased 654 787 mean percentile social wellbeing moved 731 849 livelihood empowerment standards increased 163 372 277 658 respectively overall temporal trend statistically significant f 3511 p 00001 adjusted score increased baseline value 4502 238 6107 225 6524 267 6846 278 4 8 12 months respectively compared baseline timepoints significantly different indicating significant impact intervention became stable 4 months preserved 12 months pwds faced many endeavors sustainability challenges resulting lack inclusive policies practices leading exclusion education employment healthcare using implementation science approaches could bridge gap make policies practices effective