Experiences and needs of partners as informal caregivers of patients with major low anterior resection syndrome: A qualitative study

Pape, Eva; Decoene, Elsie; Debrauwere, Mieke; Nieuwenhove, Yves Van; Pattyn, Piet; Feryn, T.; Verhaeghe, Sofie; Hecke, Ann Van; Vandecandelaere, Pieter; Desnouck, Simon; Dejonckheere, Dominiek; Debleu, Charlotte; Leupe, Tomas; Deseyne, Pieter; Geboes, Karen; Putte, Dirk Van de; Ramshorst, Gabriëlle H. van; Vlerick, Isabel

doi:10.1016/j.ejon.2022.102143

Cited by 7 publications

(5 citation statements)

References 36 publications

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“…In addition, among the scores of the four dimensions of SCNS-P&C, two factors (communication & relationship and psychological and emotional needs) were significantly higher than the results reported by Liu [ 28 ]. This is probably because CRC caregivers experienced a comparable embarrassment and stigma (caused by colostomy) with patients, which was notably higher than caregivers of other cancer patients [ 8 ]. In addition, it should be noticed that caregivers of CRC have to deal with changes in intestinal function, diet, and nutrition, especially colostomy care, which requires professional knowledge and skills and great patience [ 7 ].…”

Section: Discussionmentioning

confidence: 99%

“…A recent study showed that in addition to helping patients change their colostomy bag, paying attention to nutritional status and preventing complications also cause significant caregiver burdens [ 6 , 7 ]. In another case, it was found that caregivers could also experience social isolation due to heavy caregiving tasks, which change their lifestyles (reduced recreational activities and personal lives) [ 8 ]. Indeed, the prolonged treatment cycle, complex treatment process, multiple adverse reactions, and high medical costs cause distress to patients and bring physical and psychological burdens to their caregivers [ 8 , 9 ].…”

Section: Introductionmentioning

confidence: 99%

“…In another case, it was found that caregivers could also experience social isolation due to heavy caregiving tasks, which change their lifestyles (reduced recreational activities and personal lives) [ 8 ]. Indeed, the prolonged treatment cycle, complex treatment process, multiple adverse reactions, and high medical costs cause distress to patients and bring physical and psychological burdens to their caregivers [ 8 , 9 ]. These resulted in a high level of Supportive Care Needs (SCN), which refers to the services needed by both cancer patients and their caregivers during cancer care [ 10 ].…”

Section: Introductionmentioning

confidence: 99%

“…This was because CRC patients were more dependent on nursing/caring services (due to the high incidence of stoma complications) [ 12 ]. As demonstrated by a study led by Pape, caregivers experienced comparable loneliness, embarrassment, and stigma as CRC patients due to colostomy [ 8 ]. As the heavy physical and psychological burdens experienced by caregivers inevitably affect how they look after patients [ 12 ], it is necessary to comprehensively analyze the difficulties caregivers face with CRC patients and identify the key factors affecting caregivers’ SCN.…”

Section: Introductionmentioning

confidence: 99%

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Supportive care needs and associated factors among caregivers of patients with colorectal cancer: a cross-sectional study

Zhang,

Wang,

Shao

et al. 2024

Support Care Cancer

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To assess the level of supportive care needs of caregivers of colorectal cancer patients and explore the related key influencing factors. Totaling 283 caregivers of patients with colorectal cancer were investigated in this study. Firstly, caregivers were invited to complete a set of questionnaires, including the general information questionnaire, the Supportive Care Needs Survey-Partners and the Caregivers of cancer patients, the Caregiver Preparedness Scale, the Benefit Finding Scale, and the Comprehensive Score for Financial Toxicity. Univariate and multivariate linear regression were performed to investigate the associated factors of supportive care needs. The caregivers of patients with colorectal cancer have a moderate level of needs, scored at 2.71 ± 0.42. Caregiver preparedness, benefit finding, and financial toxicity were significantly negatively associated with the supportive care needs of caregivers (r = − 0.555, P < 0.001; r = − 0.534, P < 0.001; and r = − 0.615, P < 0.001, respectively). Our multivariate regression analysis identified some factors that directly affected the supportive care needs of caregivers, including the duration of illness, tumor stage, the age and educational level of caregivers, caregiver preparedness, benefit finding, and financial toxicity (R2 = 0.574, F = 23.337, P < 0.001). Supportive care needs are common among caregivers of colorectal cancer patients. Higher caregiver preparedness, benefit finding, and financial toxicity tend to ease these needs. Healthcare workers should have an in-depth understanding of the needs of caregivers of colorectal cancer patients and actively provide targeted financial/informational/technical/emotional support to promote nursing skills and reduce caregivers’ burdens.

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Supportive care needs and associated factors among caregivers of patients with colorectal cancer: a cross-sectional study

Zhang,

Wang,

Shao

et al. 2024

Support Care Cancer

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“…Van der Heijden et al [ 14 ] recommends healthcare professionals to make phone contact with patients in an early stage after hospital discharge to offer support and practical advice. We believe that this kind of contact is important for our patients also in the period of time from hospital discharge to the follow-up appointment three months later, to prevent loneliness and support hope in the patient’s trajectory [ 36 ], as well as alleviate the partners’ needs [ 37 ].…”

Section: Discussionmentioning

confidence: 99%

Patients’ experiences of living with low anterior resection syndrome three to six months after colorectal cancer surgery: A phenomenological study

Løvall,

Mjelde,

Eide

et al. 2024

PLoS ONE

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Background Increased use of sphincter-preserving surgery following colorectal cancer has led to more people living with low anterior resection syndrome (LARS), a disordered bowel function that significantly impacts quality of life. Little is known about how patients experience the first months following sphincter-preserving surgery and having LARS. Objective To shed light on what it means to live with LARS in the first three to six months after colorectal cancer sphincter-preserving surgery. Method A qualitative study with a phenomenological approach constitutes the study design. Semi-structured interviews were conducted with five participants from September 2022 to January 2023. The transcribed interviews were analysed using Giorgi’s phenomenological method. Results Five themes emerged from the analysis: bowel emptying becomes all-consuming and affects both daily life and working life, you hear what they’re saying, but don’t understand what it means until your body goes through it, low anterior resection syndrome may impact sexual life, leaving feelings of guilt, it doesn’t matter what the circumstances are, but rather how one deals with them, and support and follow-up from healthcare professionals, employers, family and friends are crucial for living a good life with LARS. Conclusion Participants described struggles living with major LARS in the early period following hospital discharge. However, few months later, they had developed strategies enabling them to control their everyday life. Support and follow-up from healthcare professionals, employers, family, and friends were crucial when learning to live with major LARS. Participants expressed desire for a systematic and proactive follow-up from healthcare professionals and contact with peer-support groups.

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A couple-based unmet supportive care needs intervention for colorectal cancer couples: A preliminary feasibility study

Sun,

Yang,

Wang

et al. 2024

European Journal of Oncology Nursing

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Experiences and needs of partners as informal caregivers of patients with major low anterior resection syndrome: A qualitative study

Cited by 7 publications

References 36 publications

Supportive care needs and associated factors among caregivers of patients with colorectal cancer: a cross-sectional study

Supportive care needs and associated factors among caregivers of patients with colorectal cancer: a cross-sectional study

Patients’ experiences of living with low anterior resection syndrome three to six months after colorectal cancer surgery: A phenomenological study

A couple-based unmet supportive care needs intervention for colorectal cancer couples: A preliminary feasibility study

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