Effect of Self-Learning Guidelines on Quality of Life and Self –Care Reported Practice of Adolescents with Sickle Cell Anemia

Abstract

Background: Sickle Cell Anemia (SCA) is a chronic hematologic disease associated with many physical, psychological, and social problems that can affect on quality of life. Self-learning guidelines has a great effect in improving quality of life and health status of adolescent with Sickle Cell Anemia. Aim of the study was to evaluate the effect of self-learning guidelines on quality of life and self-reported practice of adolescents with sickle cell anemia. Design: A quasi-experimental study. Settings: Inpatient and outpatient of pediatric hematology departments at Benha University and Benha Specialized Pediatric Hospitals. Study subjects: A purposive sample of 50 adolescents diagnosed with sickle cell anemia in the previously mentioned settings was included in the study throughout a period of six months. Data collection tools: A Structured interviewing questionnaire sheet, self-care reported practices and pediatric quality of life scale. Results: There was a statistical significant difference between total knowledge and total self-reported practices of the studied adolescents regarding to sickle cell anemia post and follow up self-learning guidelines as compared to pre self-learning guidelines implementation. There was a statistical significant difference between the total score of quality of life for the studied adolescents regarding to sickle cell anemia at post and follow up compared to pre selflearning guidelines implementation. Conclusion: Self-learning guidelines implementation was effective in improving the quality of life of adolescents with sickle cell anemia through improving their knowledge and self-care reported practices. Recommendations: In service training program for adolescents with the sickle cell anemia to enhance their quality of life.Conducting premarital screening programs for raising awareness of children and adolescents regarding the nature hereditary of SCA& associated complication.

Self‐management interventions for children and young people with sickle cell disease: A systematic review

“…There was a preponderance of relatively small-scale (e.g., single-site, small-sample) feasibility/pilot studies (n = 21) 28,[34][35][36]40,44,[46][47][48][49][50][51]55,57,58,[60][61][62][63][64] whose primary objective was to report effectiveness data, acceptability data and/or assess the feasibility and trial design of interventions. The majority (n = 31) of the included studies used a randomized 30,31,37,[42][43][44][46][47][48][49][50]54,55,58,64 or non-randomized comparative study design 27,28,32,38,39,41,45,51,52,56,57,[59][60][61]…”

“…Nine studies recruited participants from multiple settings. 27,37,41,44,48,50,54,57,58 CYP participants were aged between 6 and 24 years, predominantly African American and had homozygous SCD (i.e., HbSS genotype).…”

“…28,[35][36][37]41,48,58,61 Only three studies of moderate quality reported statistically significant improvement in quality of life. 28,41,64 However, in two, improvement was only observed in the social domain. 28,64 The high-quality studies identified no significant improvement in quality of life.…”

“…The majority (n = 22) combined different types of self-management support, [28][29][30][31][32][34][35][36][37][38][39]41,44,45,51,52,[57][58][59][60]62,64 but all had an educational component on general information about SCD or combined this with more specific information about pain, pharmacological treatments, self-care, clinic appointments, school and academic support, medical insurance and social care supports. Twenty-eight interventions included skills training programmes (self-assessment and planning, goal-setting, problem-solving, coping and interpersonal communication) [27][28][29][30][31][32][33][34][35][36][37][38][39][41][42][43][44][47][48][49][51][52][53][54]…”

“…59 Interventions were delivered as one-off sessions, multiple sessions or were selfguided. Most were either delivered at a hospital (n = 16) 27,28,31,38,39,[41][42][43]45,47,52,53,55,56,59,63 or at multiple locations (n = 12) (internet, hospital, telephone or community/home 29,32,36,37,44,48,49,54,57,59,62,64 27,29,33,34,36,37,41,46,47,[51][52][53]59,64 six were adapted from existing generic (noncondition specific) self-management programmes, 33,40,41,48,49,56 four were self-management existing programmes for SCD, …”