EP150 - Beyond Burden: Caregiver Resilience and Relationship Growth After Ostomy

ePoster Presenter(s)

• 

  Emily F. Simon, MD (she/her/hers)

  General Surgery Resident
  University Hospitals Cleveland Medical Center, Department of Surgery
  Cleveland, OH, United States

  All disclosed relationships have been reviewed and managed prior to the start of this activity. Any relevant relationships will be listed below. This individual has no financial relationships to disclose

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Author(s)

• SK

  Saher-Zahra Khan, MD

  General Surgery Resident
  University Hospitals Cleveland Medical Center
  South Euclid, OH, United States

  All disclosed relationships have been reviewed and managed prior to the start of this activity. Any relevant relationships will be listed below. This individual has no financial relationships to disclose
• KL

  Kiana Loo, MD

  General Surgery Resident, PGY-1
  University Hospitals Cleveland Medical Center
  Cleveland, Ohio, United States

  Disclosure information not submitted.
• KC

  Kelly Chambers, MD

  Resident Physician
  University Hospitals Cleveland Medical Center
  Cleveland, Ohio, United States

  Disclosure information not submitted.
• 

  Kayvan Barekatain, MD (he/him/his)

  Resident Physician
  Case Western Reserve University Hospitals
  University Hospitals, Cleveland Medical Center
  Cleveland, OH, United States

  Disclosure information not submitted.
• 

  Marnie Abeshouse, MD

  Colon and Rectal Surgery Fellow
  University Hospitals Cleveland Medical Center
  University Hospitals Cleveland Medical Center
  Cleveland, OH, United States

  All disclosed relationships have been reviewed and managed prior to the start of this activity. Any relevant relationships will be listed below. This individual has no financial relationships to disclose
• 

  Ronald Charles, MD (he/him/his)

  Assistant Professor of Surgery
  University Hospitals Cleveland Medical Center, Department of Surgery, Division of Colorectal
  Cleveland, OH, United States

  Disclosure information not submitted.
• MC

  Meagan Costedio, MD (she/her/hers)

  Medical Director of Colorectal Surgery
  Ahuja Medical Center of University Hospitals
  Case Western University
  Beachwood, OH, United States

  All disclosed relationships have been reviewed and managed prior to the start of this activity. Any relevant relationships will be listed below. This individual has no financial relationships to disclose
• ES

  Emily Steinhagen, MD, FACS, FASCRS

  Associate Professor of Surgery
  University Hospitals Cleveland Medical Center, Department of Surgery, Division of Colorectal
  Cleveland, Ohio, United States

  All disclosed relationships have been reviewed and managed prior to the start of this activity. Any relevant relationships will be listed below. This individual has no financial relationships to disclose

Senior Author(s)

• 

  Kristen Westfall, MD, MPH (she/her/hers)

  Assistant Professor of Surgery
  University Hospitals/Cleveland Medical Center
  Case Western Reserve University
  Cleveland, OH, United States

  All disclosed relationships have been reviewed and managed prior to the start of this activity. Any relevant relationships will be listed below. This individual has no financial relationships to disclose

Purpose/Background: Patient quality of life (QoL) after ostomy is well described, but caregiver outcomes are understudied. We explored caregivers' experiences - time burden, education needs, emotional adjustment, and relationship dynamics - to inform support for households living with an ostomy.

Methods/Interventions: We used an exploratory, sequential mixed-methods design at a single institution. Semi-structured caregiver interviews underwent inductive thematic analysis and informed a survey with ostomy-specific items plus an adapted Caregiver Burden Inventory (CBI; 0 (no burden) to 4 (high burden) scale with 5 domains: time dependency, developmental, physical, emotional, social). It was offered to patients with current or prior ostomy within 5 years; with patient permission, their caregiver completed the survey. Responses were summarized descriptively.

Results/Outcomes: We analyzed 5 caregiver interviews (all spouses; 2 permanent, 3 temporary ostomies). Caregiver time burden peaked early postoperatively, with an initial "adjustment period" requiring up to hours a day of bag changes, wound care, and leak troubleshooting. This universally declined with practice to 5 to 30 minutes every few days. Many retained a light assist role (cutting/placing appliances) as patients gained autonomy. Relationship impact was neutral to positive: several described greater trust, teamwork, and better shared QoL as the patient's health improved compared to pre-ostomy. A minority noted reduced physical intimacy, often due to logistical (leaking appliance) or postoperative factors. Education from enterostomal therapists/home care accelerated confidence and adjustment. Caregivers advised patience, emotional reassurance, and proactive learning (pamphlets, asking clinicians/ostomy nurses); several highlighted screening/colonoscopy as a prevention lesson from their experience.

Of 22 surveys, caregivers were a mean age of 60.9 years; 86.4% were spouses. Patients' mean age was 63 years; 59.1% (n=13) had permanent ostomies, 54.6% (n=12) had ileostomies. Most common indications were cancer (40.9%, n=9), IBD (27.3%, n=6), and diverticulitis (13.6%, n=3). 81.8% had an ostomy >6 months.

81.8% (n=18) of caregivers spent < 1 hour/day on ostomy care. Most (n=17, 77.3%) help with ≥1 ostomy-specific task, commonly skin cleaning, preparing, and applying bags. 90.9% also assist with ≥1 non-ostomy task since surgery (transportation, additional household duties).

13.6% (n=3) reported negative overall relationship impact; 63.6% (n=14) reported positive impact. Intimacy was more often negatively affected (41.2%, n=7), though 35.3% (n=6) reported neutral and 23.5% (n=4) reported positive effects. Work and social life were negatively affected in 19.1% (n=4) and 27.3% (n=6), respectively; 47.6% reported neutral work impact, and 40.9% reported positive social impact.

All 5 domains of the adapted CBI had average scores < 1, indicating minimal caregiver burden. Emotional health items had the lowest average score at 0.2, while the developmental and time dependency scales had the highest averages, both 0.8.

Conclusion/Discussion: Caregivers of people with ostomies are resilient and adaptive. After a brief learning curve, time burden was low and relationship impact largely neutral or positive, often with greater trust/teamwork. QoL often improved when ostomies alleviate preoperative illness. These findings can reassure patients and families: ostomy care is learnable, sustainable and rarely exerts a lasting negative burden.

Themes and Representative Quotes from Interviews with Caregivers of Patients with Ostomies
Impact of Patient's Ostomy on Caregivers: Relationship, Intimacy, Work, and Social Life