Inner Strength in Adolescents and Emerging Adults (AEA) With and Without a Chronic Health Condition

Purpose:

The purpose of this study was to describe the evidence of inner strength and quality of life (QOL) in adolescents and emerging adults (AEA) with and without a chronic health condition (CHC) and their parents.

Research and advancement of nursing interventions for adolescents is needed due to the increased population of AEA surviving chronic health conditions worldwide (Ridosh, Braun, Roux, Sawin,& Bellin, 2011). Inner strength and QOL have been studied in adult populations with chronic health conditions but studies are limited in adolescent populations (Dingley & Roux, 2014).  Adolescents with CHC are a vulnerable population that should be targeted for improved practice outcomes and revised global policies (Ridosh, 2014; Sawin, Brei, Buran, & Fastenau, 2002)

Methods:

This research is a component of a large mixed method, multi-site study in the United States on improving health outcomes for families with adolescents living with spina bifida (SB). The larger study investigated adaptation in families with adolescents and emerging adults with and without spina bifida (SB). Families (N=198), (parent and AEA) completed telephone interviews with quality of life and demographic survey and interview questions (e.g. age, gender, socio-economic status, race and ethnicity). Participants included AEA with SB (54%) and without (46%). Descriptive statistics and content analysis was conducted. 

Results:

The AEA mean age for the group with SB was 15.1 years (σ = 2.9) and comparison was 15.4 (σ =2.6). The parents were primarily female (94%), well-educated either attending or completed college/vocational training (23%), and married (74%). Demographic characteristics by subsample were similar except for income. Female parents were usually the ones interviewed (SB group 94%/comparison 93%). Race and ethnicity of the group with SB was 4% Hispanic, 5% Black, 4% other races, and 91% Caucasian. Comparison group race and ethnicity was slightly more diverse 2% Hispanic, 17% Black, 3% other races, and 80% Caucasian.  Combined family income was significantly lower for families with AEA with SB, 18% earned less than $20,000 and 50% earned greater than $50,000. In the comparison group 4% earned less than $20,000 and 73% earned greater than $50,000. Chi-square statistic showed no significant difference between groups (SB vs comparison) in age of AEA, parent interviewed, race/ethnicity, or gender of AEA in study. There was a significant difference between groups in scores for family income, X2 (207) = 16.67, p < .001.

The content analysis addressing QOL interviews of AEA with CHC identified happiness as the key component of QOL. The AEA without CHC more frequently reported QOL being defined by friendship and getting along. Key concepts of QOL differed between individual and family members for the parent group but not the AEA. Parents of those with a CHC focused on happiness, being able to do meaningful activities, and enjoying life. Parents of AEA without a CHC reported greater need for friendship and increased family time more frequently than parents who had an AEA with condition. Differences were not seen in terms of togetherness, enjoyment, support, finances, independence or employment in parent perceptions. Components of Inner Strength were noted in parent reports of meaningful activities and connectedness.  Meaningful activities for parents living with an AEA with CHC were most important to them while good relationships was more frequently reported by parents without a CHC. When activities were discussed, participants described the desire for physical activities such as sports and exercise. 

Conclusion:

Study results can assist providers to focus on enhancing family strengths imortant to parents and adolescents. Findings highlight the clinical significance of comprehensive interprofessional teams to promote meaningful activities for AEA with CHC and to advance the development of good relationships for all AEA. Future cost-effective, quality healthcare innovations should include strategies for the health and QOL of families and adolescents worldwide (Healthy People 2020; Ridosh, 2014; Sawin, Bellin, RouX, Buran, & Brei, 2009).