RESEARCH QUESTION: What is the role of occupational therapists in regard to inclusion of siblings in neonatal intensive care unit (NICU) setting?

PURPOSE: Siblings are an important part of a family, and play an integral role in the development of children with special needs. The literature notes that children are equally affected by hospitalization of their younger brother/sister, and these effects are often more profound when the hospitalization involves newborns.

The importance of family cohesion and quality of life are topics of concern for occupational therapists (OTs) working with children, and the Occupational Therapy Practice Framework: Domain and Process (3rd ed.; American Occupational Therapy Association, 2014) has defined maintenance of optimal occupational performance within a family under roles of OTs. However, siblings of infants in the NICU have received little attention in the occupational therapy literature.

This study aims to explore needs and experiences of NICU siblings and to create understanding and awareness among professionals regarding the importance of sibling inclusion in care. The study will also allow OTs to understand their role beyond developmental interventionists in NICU setting.

DESIGN: A mixed-method meta-synthesis of existing literature focusing on needs and experiences of siblings as well as interventions to support siblings’ needs was used for the research.

RESULTS: Eight intervention studies described or assessed any sibling-supportive program for its importance and effectiveness, and 6 qualitative studies listed siblings’ experiences and/or their needs. Sibling visitation and sibling education were two of the reoccurring form of sibling-supportive programs in all of the studies, and some programs included a parent–sibling support group or peer support group.

Both intervention and qualitative studies demonstrated distress, anxiety, regressing behaviors, and misconceptions related to the new baby as the most common experiences of siblings, often due to lack of knowledge, routine disruptions, and parental separation. The intervention studies found support programs to be helpful and enjoyable by siblings. Integration of results showed overarching themes, which revealed that (1) siblings of infants in the NICU present with unique needs and require support and (2) sibling-directed programs are effective.

DISCUSSION: Synthesis revealed that children demonstrate behavioral regression, sleep disturbances, anxiety, and distress upon the birth of a sibling; these behaviors sometimes intensify in an event such as NICU admission, secondary to vulnerability of parents and disturbance in daily routine. OTs are not only expert at addressing these issues, they are also known to be facilitators of family quality of life via building healthy relationships and promoters of successful occupational performance via adaptation and adjustment.

The meta-synthesis revealed that to improve quality of life, to promote well-being, and to reduce family fragmentation were some of the fundamental goals of sibling-directed programs. Thus, it can be inferred that OTs possess skills and training to address the needs of siblings, and occupational therapy’s philosophy of holistic yet individualized care will encourage OTs to develop an age-appropriate and comprehensive support program for siblings that will ease their transition to the experience of NICU. Despite all of these, a limited amount of empirical evidence is available on the topic, leading to limited awareness of siblings’ needs and the necessity to provide support to siblings among NICU professionals.

Ultimately, results of this study promote questions such as why have OTs not studied the impact of a child’s condition on their siblings or explore the ways to support those needs and siblings within the NICU?

American Occupational Therapy Association. (2014). Occupational therapy practice framework: Domain and process (3rd ed.). American Journal of Occupational Therapy, 68(Suppl. 1), 1–48. http://dx.doi.org/10.5014/ajot.2014.682006