Caregiver perspectives on family psychosocial risks and resiliencies in pediatric sickle cell disease: Informing the adaptation of the Psychosocial Assessment Tool.

Abstract

There were 2 related objectives of this qualitative study focused on caregivers of children with sickle cell disease (SCD): (1) to assess caregiver perspectives on the acceptability and utility of the Psychosocial Assessment Tool (PAT) as a screener of family psychosocial risk in pediatric SCD and (2) to examine caregiver perspectives on psychosocial risk factors, as well as their resiliencies and coping strategies, to help inform possible modifications to the PAT. Caregivers (n ϭ 43) of youth with SCD completed the PAT to assess feasibility of administration and a subset (n ϭ 22) completed a qualitative interview organized around principles of cognitive interviewing for instrument validation. Constant comparative analyses involved coding interviews, organizing coding categories into themes, and systematically reintegrating themes regarding caregiver perspectives. Caregivers had positive reactions to the PAT, including its ability to broadly assess risk factors, potential utility in helping connect families to resources, and the brevity and ease of completion. Caregivers described salient family stressors as well as adaptive coping strategies that generally aligned well with areas assessed by the PAT, and also provided feedback that can help inform modification of the PAT to better fit the SCD population. Families of youth with SCD face significant psychosocial stressors but demonstrate resiliency in using adaptive coping strategies. Study results support the continuing development of the PAT as a family psychosocial risk screener in pediatric SCD that can enhance the delivery of evidence-based care and reduce health disparities.

Psychosocial Screening in Disorders/Differences of Sex Development: Psychometric Evaluation of the Psychosocial Assessment Tool

“…Providers will need to determine the most efficient system based on available resources: for example, in one setting a behavioral health provider may administer, score, and review with the family and team, whereas in another setting a nurse may administer and score and then convey risk level to a behavioral health provider and/or the medical team. Previous research on stakeholder perspectives of the PAT in other populations find that caregivers describe the PAT as short and easy to complete, and likely to facilitate difficult conversations about risk factors [49]; studies of health providers find that some providers have concern about the length of time it takes to assist families completing the PAT; however, some providers in systems with a standardized work flow for the PAT report that PAT administration and scoring is simple with a minimal impact on workflow [50]. There are a number of administration and scoring options (e.g., paper and pencil, web-based; https://www.psychosocialassessmenttool.org/using-pat).…”

Primary caregiver decision‐making in hematopoietic cell transplantation and gene therapy for sickle cell disease

“…26 Raising a child with SCD is associated with a myriad of psychological stressors for primary caregivers. 27 Families experience stress from the burden of SCD treatments, such as CTT, regular clinic visits, and the financial hardship from missed workdays. 27,28 Taking care of their child through the pain crises and other severe SCD-related complications may cause the greatest distress for primary caregivers.…”

“…Raising a child with SCD is associated with a myriad of psychological stressors for primary caregivers 27 . Families experience stress from the burden of SCD treatments, such as CTT, regular clinic visits, and the financial hardship from missed workdays 27,28 .…”

Psychosocial assessment of families caring for a child with acute lymphoblastic leukemia, epilepsy or asthma: Psychosocial risk as network of interacting symptoms

“…The PAT2.0 and PAT 2.0 generic version (PAT2.0_-GEN) [77,78,80,[82][83][84] are brief (10-15 minutes) parent-reported screening tools of psychosocial risk in families with a child with cancer or with other severe or chronic illnesses based on an ecological approach. The generic version of the PAT is an adapted version of the PAT which was initially developed for the pediatric oncology setting and has been adjusted for other patient populations affected by inflammatory bowel disease, obesity, congenital heart disease, diabetes and kidney transplant [76,78,79,81,83,[85][86][87]. The PAT2.0 and PAT2.0_GEN are composed of 15 item sets and yield a total score (possible range 0-7) and seven subscale scores (possible range of 0-1) that include: Family Structure and Resources (8 items), Family Social Support (4 items), Family Problems (8 items), Parent Stress Reactions (3 items), Family Beliefs (4 items), Child Problems (15 items) and Sibling Problems (15 items).…”

“…The PAT2.0 and PAT2.0_GEN are composed of 15 item sets and yield a total score (possible range 0-7) and seven subscale scores (possible range of 0-1) that include: Family Structure and Resources (8 items), Family Social Support (4 items), Family Problems (8 items), Parent Stress Reactions (3 items), Family Beliefs (4 items), Child Problems (15 items) and Sibling Problems (15 items). Response formats differ with respect to subscale [73,77,78,87,88]. The PAT2.0_GEN only differs from the original PAT2.0 on three items which were removed: (items 9, 15g and 15i).…”