Distress Evident in Parents Caring for Teens with Sickle Cell, Survey Finds

Emotional distress affected nearly half of the parents caring for adolescents with sickle cell disease in a recent study, with greater numbers of hospital visits and other life disruptions predicting higher stress levels.

Psychosocial support and education to help caregivers be more resilient and better able to cope could improve emotional well-being and may limit the need for repeated hospital trips, its researchers wrote.

The study, “Emotional distress among parent caregivers of adolescents with sickle cell disease: Association with patients and caregivers variables,” was published in the Journal of Health Psychology. 

Sickle cell disease often has a variable clinical course, with periods of stability interrupted by episodes of severe symptoms that can include a vaso-occlusive crisis, or the painful blockage of a blood vessel.

Due to the unpredictable nature of these episodes, caregivers are faced with a considerable responsibility in managing sickle cell disease patients, from supervising routine use of different medication, to helping them adopt behaviors that might avoid a crisis and to cope with the demands of their disease. Most caregivers are parents of young sickle cell patients.

Previous research has found that caring for an adolescent with a chronic illness can be particularly stressful, due to the “characteristic challenges of adolescence-puberty” and the “transition into an adult,” the researchers wrote

Caregiver distress and depression is also known to negatively affect a family, eroding family cohesiveness and increasing unhealthy internalized and externalized behaviors in the children.

Researchers in Nigeria and Canada surveyed 121 parents of adolescents, ages 10 to 19, with sickle cell being followed at an outpatient hematology clinic in Lagos State, Nigeria.

A general demographic first survey found most of these parental caregivers were women, 92 of the 121 or 76%; most were married, 86%; and a majority had a high school education, 54.5%. Their average age was 43.6.

Caregivers reporting spending an average of 33 hours each week caring for their adolescent child, and 74.4% of the adolescent patients had a crisis within the previous six months.

Parents then answered the 12-question General Health Questionnaire (GHQ-12), a survey designed to measure emotional stress. In it, each question is scored either 0 or 1. A total score of 3 or higher is considered indicative of emotional distress, and higher scores correspond to increased severity.

Scores indicating emotional distress were found in  53 (43.8%) of respondents, meaning about 4 in every 10 caregivers taking the survey had signs of emotional distress. This is a much greater burden than is found among parents caring for a healthy child or among the general public, the researchers noted.

“The rate of distress in our study is several folds the prevalence of distress in earlier studies among caregiving mothers, and the general adult population in a comparable setting,” they wrote.

A comparison of responses in both surveys showed that being a mother and having a greater frequency of hospital visits significantly correlated with higher emotional distress scores.

A final survey, the multi-dimensional Parent Illness Intrusiveness Rating Scale (PIIRS) survey, measured how caregiving interrupts a person’s lifestyle in three major domains of life — relationships and personal development, intimacy, and instrumental life (health, finances, etc).

The PIIRS survey has 13 questions, each scored from 1 (little interruption) to 7 (extreme interruption), yielding total scores that range from 13 to 91 depending on the degree of intrusiveness.

Parents here had, on average, PIIRS total scores of 28.7, with average scores of 7.9 in relationships and personal development, of 3.75 for intimacy, and 17 in instrumental life.

Emotional distress scores were positively correlated with all PIIRS scores, including total score and each subscore.

Overall, both PIIRS survey subscores and the frequency of hospital visits could significantly predict emotional distress, and these factors together could explain up to 43% of the distress experienced by caregivers, the researchers wrote.

They called for more support programs to be put in place to help parents better manage emotional distress.

“Evidence-based psychosocial support involving a form of education, and better crisis management to limit hospital visits and lifestyle disruptions are indicated to improve caregiver wellbeing,” they wrote. “Personalized psychosocial support to promote resilience and adaptive coping-styles are desirable to enhance caregiver emotional wellbeing.”