Experience of providing care to a family member with Crohn's disease and a temporary stoma: A qualitative study

Liu, Sicong; Sun, Bowei; Tian, Wenjie; Zhang, Li; Kong, Fang; Wang, Mengmeng; Yan, Jing; Zhang, Ailing

doi:10.1016/j.heliyon.2023.e21013

Cited by 2 publications

(2 citation statements)

References 46 publications

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“…Constant stress is an extremely important problem [17,28]. Parents who showed a lower degree of acceptance of their child's disease had a higher level of stress related to the everyday problems associated with caring for an ill child.…”

Section: Discussionmentioning

confidence: 99%

A Child with Crohn’s Disease: Problems and Stress Level of Parents–Caregivers—A Cross-Sectional Study

Pasek,

Stoietskyi,

Goździalska

et al. 2024

Nursing Reports

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Crohn’s disease (CD) is a chronic inflammatory bowel disease. The perception of the disease, its troublesome symptoms and the highly involved treatment mean that living with CD requires not only the affected child having to learn to cope with it, but also their parents. The aim of the study was to examine the problems and levels of stress in parents–caregivers of children with CD. The study was cross-sectional and conducted using the diagnostic survey method. An original questionnaire was used to assess the socio-demographic situation and problems of caring for a child with CD, and the standardised PSS-10 questionnaire was added. The study group consisted of 60 parents who accompanied their children during hospitalization. The surveyed caregivers of children with CD found it difficult to maintain a specialised diet and deal with the need for hospitalization and the chronic use of medications. Access to the necessary knowledge about the disease posed the least difficulty in everyday life for a child with CD. The vast majority of parents (50, 83.34%) felt a high level of stress related to caring for a child with CD and, simultaneously, a lack of acceptance of the child’s disease (39, 65%). The age of the respondents did not have a statistically significant effect on the occurrence of problems related to everyday functioning. The acceptance of the child’s disease by the parents and informal caregivers of children with CD reduced their stress level. Parents could count on support from their relatives but, unfortunately, institutional support was not properly provided.

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Section: Discussionmentioning

confidence: 99%

A Child with Crohn’s Disease: Problems and Stress Level of Parents–Caregivers—A Cross-Sectional Study

Pasek,

Stoietskyi,

Goździalska

et al. 2024

Nursing Reports

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“…QDT greatly affects patients’ post-discharge outcomes, such as complications, readmission rates, and post-discharge coping competence [ 9 , 10 ]. Studies have pointed out that the QDT provided by medical staff has an important impact on the quality of life of patients with stoma and care experience of their family caregivers [ 11 , 12 ]. Weiss’s studies further indicated that readiness for hospital discharge (RHD) plays an important intermediary role between QDT and post‑discharge outcomes in surgical patients and mothers after birth [ 13 , 14 ].…”

Section: Introductionmentioning

confidence: 99%

Discharge teaching quality positively predicts quality of life in colorectal cancer patients with temporary enterostomy: The mediating role of readiness for hospital discharge and stoma self-efficacy

Lin,

Fang,

Huang

et al. 2024

PLoS ONE

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Objectives This study aimed to examine the mediating role of readiness for hospital discharge (RHD) and stoma self-efficacy (SSE) in the relationship between quality of discharge teaching (QDT) and health-related quality of life (HRQOL) in colorectal cancer patients with temporary enterostomy, and the gender difference of mediating effect. Background It is not clear how RHD, QDT, SSE and HRQOL interact in colorectal cancer patients with temporary enterostomy. Methods This was a prospective follow-up survey. 221 colorectal cancer patients with temporary enterostomy were conveniently recruited from a general hospital in Southeast China. The Quality of Discharge Teaching Scale, Readiness for Hospital Discharge Scale, Stoma Self-Efficacy Scale, and Stoma Quality of Life Scale were used to collect data. Pearson’s correlation and structural equation models were used to analyze the data. SPSS 26.0 and Amos 28.0 software were used for analysis the collected data. Results Regarding the relationship of QDT and HRQOL, only QDT-T had a direct effect among colorectal cancer patients with stomas (b = 0.233, P<0.001, percentile 95% CI = [0.145, 0.314]). However, both QDT-T and QDT-R can predict HRQOL indirectly through three paths: (1) the mediating role of SSE (b = 0.050, P = 0.009, percentile 95% CI = [0.013, 0.098]; b = 0.077, P = 0.008, percentile 95% CI = [0.021, 0.164]), (2) the mediating role of RHD (b = 0.044, P = 0.004, percentile 95% CI = [0.014, 0.085]; b = 0.044, P = 0.005, percentile 95% CI = [0.010, 0.102]), and (3) the chain mediating role of SSE and RHD (b = 0.030, P = 0.003, percentile 95% CI = [0.011, 0.059]; b = 0.047, P = 0.003, percentile 95% CI = [0.015, 0.103]). The similar chain mediating effect in male stoma patients was also found (b = 0.041, P = 0.002, percentile 95% CI = [0.016, 0.080]; b = 0.046, P = 0.004, percentile 95% CI = [0.011, 0.114]). Conclusions Stoma self-efficacy and readiness for hospital discharge played important intermediary roles in the relationship between quality of discharge teaching and health-related quality of life in colorectal cancer patients with stomas. Health care providers can design SSE-enhancing and RHD-enhancing discharge planning for colorectal cancer patients with temporary enterostomies.

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Experience of providing care to a family member with Crohn's disease and a temporary stoma: A qualitative study

Cited by 2 publications

References 46 publications

A Child with Crohn’s Disease: Problems and Stress Level of Parents–Caregivers—A Cross-Sectional Study

A Child with Crohn’s Disease: Problems and Stress Level of Parents–Caregivers—A Cross-Sectional Study

Discharge teaching quality positively predicts quality of life in colorectal cancer patients with temporary enterostomy: The mediating role of readiness for hospital discharge and stoma self-efficacy

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