"Take It One Dilation at a Time": Caregiver Perspectives of Postoperative Anal Dilations in Pediatric Patients with Colorectal Conditions.

Hirschsprung disease anal dilations anorectal malformation caregiver experiences caregiver perspectives psychosocial support

Journal

Behavioral sciences (Basel, Switzerland)
ISSN: 2076-328X
Titre abrégé: Behav Sci (Basel)
Pays: Switzerland
ID NLM: 101576826

Informations de publication

Date de publication:
30 Apr 2024
Historique:
received: 11 03 2024
revised: 25 04 2024
accepted: 25 04 2024
medline: 24 5 2024
pubmed: 24 5 2024
entrez: 24 5 2024
Statut: epublish

Résumé

Postoperative anal dilations (PAD) are the standard of care for patients after a posterior sagittal anorectoplasty (PSARP) for anorectal malformation (ARM) or a transanal pull-through (TP) procedure for Hirschsprung disease (HD). This study assessed the psychosocial impact of PAD among caregivers of children with ARM or HD, which may inform postoperative care strategies. Caregivers of patients with ARM and HD who underwent PSARP or TP within five years participated in the online survey. Questions included demographics, patient and caregiver experiences with PAD, and baseline psychosocial functioning. Quantitative results were reported descriptively, while qualitative responses were summarized as major themes. The survey indicated a response rate of 26% caregivers, with most being female (91%) and biological mothers (85%). Patients were mostly male (65%), born with ARM (74%), and were five months old on average when PAD began. Caregivers reported that during PAD, children experienced distress (56%), pain (44%), and fear (41%), while a third noted no negative reactions. Over time, their child's ability to cope with PAD got easier (38%) or stayed the same (41%). Caregivers reported worry/anxiety (88%), guilt (71%), stress (62%), and frustration (35%), noting that additional coping strategies to manage the emotional and logistical challenges of daily PAD would be helpful. Although PAD is necessary, it can be highly stressful for the patients and their caregivers. Key findings emphasized the need for additional coping strategies and highlighted the importance of integrating psychosocial support into the postoperative care regimen.

Sections du résumé

BACKGROUND BACKGROUND
Postoperative anal dilations (PAD) are the standard of care for patients after a posterior sagittal anorectoplasty (PSARP) for anorectal malformation (ARM) or a transanal pull-through (TP) procedure for Hirschsprung disease (HD). This study assessed the psychosocial impact of PAD among caregivers of children with ARM or HD, which may inform postoperative care strategies.
METHODS METHODS
Caregivers of patients with ARM and HD who underwent PSARP or TP within five years participated in the online survey. Questions included demographics, patient and caregiver experiences with PAD, and baseline psychosocial functioning. Quantitative results were reported descriptively, while qualitative responses were summarized as major themes.
RESULTS RESULTS
The survey indicated a response rate of 26% caregivers, with most being female (91%) and biological mothers (85%). Patients were mostly male (65%), born with ARM (74%), and were five months old on average when PAD began. Caregivers reported that during PAD, children experienced distress (56%), pain (44%), and fear (41%), while a third noted no negative reactions. Over time, their child's ability to cope with PAD got easier (38%) or stayed the same (41%). Caregivers reported worry/anxiety (88%), guilt (71%), stress (62%), and frustration (35%), noting that additional coping strategies to manage the emotional and logistical challenges of daily PAD would be helpful.
CONCLUSION CONCLUSIONS
Although PAD is necessary, it can be highly stressful for the patients and their caregivers. Key findings emphasized the need for additional coping strategies and highlighted the importance of integrating psychosocial support into the postoperative care regimen.

Identifiants

pubmed: 38785870
pii: bs14050379
doi: 10.3390/bs14050379
pii:
doi:

Types de publication

Journal Article

Langues

eng

Auteurs

Lea A Wehrli (LA)

International Center for Colorectal and Urogenital Care, Children's Hospital Colorado, Aurora, CO 80045, USA.

Merlin Ariefdjohan (M)

Child and Adolescent Mental Health Division, Department of Psychiatry, University of Colorado Anschutz Medical Campus, Aurora, CO 80045, USA.

Jill Ketzer (J)

International Center for Colorectal and Urogenital Care, Children's Hospital Colorado, Aurora, CO 80045, USA.

Kristina Matkins (K)

International Center for Colorectal and Urogenital Care, Children's Hospital Colorado, Aurora, CO 80045, USA.

Luis De la Torre (L)

International Center for Colorectal and Urogenital Care, Children's Hospital Colorado, Aurora, CO 80045, USA.

Andrea Bischoff (A)

International Center for Colorectal and Urogenital Care, Children's Hospital Colorado, Aurora, CO 80045, USA.

Laura Judd-Glossy (L)

International Center for Colorectal and Urogenital Care, Children's Hospital Colorado, Aurora, CO 80045, USA.
Child and Adolescent Mental Health Division, Department of Psychiatry, University of Colorado Anschutz Medical Campus, Aurora, CO 80045, USA.
Pediatric Mental Health Institute, Children's Hospital Colorado, Aurora, CO 80045, USA.

Classifications MeSH