Evidence indicates that caregivers
of children with primary immunodeficiency disorders (PIDs) encounter profound psychological
anxiety as their children undergo the hematopoietic cell transplantation (HCT)
process. Volatile medical symptoms in the child, uncertainty about the child’s
outcome, and feeling ill prepared as a caregiver often lead to caregiver
psychosocial distress. In fact, many caregivers ultimately suffer from
posttraumatic stress symptoms and depression. Prior studies suggest that
immediately before HCT and during hospital discharge are particularly
high-distress periods, thereby allowing for targeted interventions. “There is little known about how healthcare delivery
systems could better address these needs,” says Dr. Christina Mangurian, MD,
MAS. This often results in “missed opportunities to provide psychosocial
support to these caregivers.”
Taking a Deeper
Look
For a study published in the Journal of Allergy and Clinical Immunology,
Dr. Mangurian, Jennie Yoo, MD, and colleagues analyzed the well-being of
caregivers for children with PIDs, determining what common support systems and
organizational-level factors might ease caregiver distress. From August through
November 2017, they contacted caregivers via Immune Deficiency Foundation email
lists, online Facebook groups for PID families, and PID research groups. Participating
caregivers were at least 18 years old, had a child with a PID, had a child who
received HCT when younger than 5 years old, resided with the child during HCT, had
HCT performed in the US or Canada, and came from an English-speaking family.
“Caregivers
were invited to participate in a confidential online survey composed of
questions assessing demographic and medical variables, use of psychosocial
support systems, well-being, and open-ended questions,” says Yoo. This provides
an understanding of “caregiver perspectives on potential organizational
solutions to enhance well-being.”
Among respondents, caregivers had a median age of 34 years
(range, 23-62 years). They were mostly female (98%), Caucasian (87%),
married/living together (88%), and had additional children (65%). Of affected
children, 79% were male. They had a median age of 5 months (range, 1-44 months),
and 74% were diagnosed with severe combined immune deficiency (SCID).
Examining Key
Findings
The study showed that caregivers largely depend on the
medical care team (70%) and extended family (63%) for support. However, they
also greatly rely on online support groups (45%), close friends (40%), and the
religious community (29%).
“Caregivers of PID children
experience a great deal of emotional stress during the HCT hospitalization and
need support,” says Dr. Mangurian. “This hospitalization is a strain to
personal relationships of caregivers, including caregivers’ other healthy
children (lack of sibling visitation) and partners (geographic distance,
sharing of responsibilities). Often, caregivers have difficulty managing their
own self-care, including disruption of sleep.”
An adjusted multivariate linear regression model showing post-HCT influences on caregiver well-being is included in the Table. Results demonstrated that five predictors (age, income, insurance, hospitalization length, and complications) accounted for 33% of the variance in well-being. “We found that caregivers who were low income, had children with complications after HCT, or both experienced significantly lower well-being after hospitalization,” says Ms. Yoo, signifying that particular high-risk subpopulations of caregivers might require more targeted psychosocial support. “Further research is needed to assess the challenges and needs of populations with limited English proficiency and/or minority populations, in addition to families who experienced fatal outcomes.”
Assessing
Implications
Caregivers offered up a number of organizational-level
solutions to assist psychosocial support, including respite services, online
PID-caregiver groups, and bedside mental health services. Hospital-based respite services allow “time for caregivers
to manage their self-care and/or attend to other duties,” says Yoo. “Caregivers
also requested more frequent check-ins from their healthcare team and more time
with providers to discuss medical decisions.”
Many opportunities exist to address low-hanging
fruit at the organizational level, according to Dr. Mangurian. “A few key
suggestions include screening caregivers for depression and targeting increased
support for caregivers with additional social stressors and more complicated
medical courses,” she notes. Additionally, revising hospital policies to
allow for more than one caregiver to stay overnight would significantly improve
caregiver well-being by strengthening relationships both with healthy siblings
and with a spouse/partner.
References
Supporting caregivers during hematopoietic cell transplantation for children with primary immunodeficiency disorders
https://www.jacionline.org/article/S0091-6749(18)31508-2/abstract
