Emotional perception of family-member caregivers regarding the clean intermittent catheterization in myelomeningocele cases

Costa, Regina Célia Villa; Guiotoku, Elizabete Tsubomi Saito; Kravchychyn, Helena; Rocha, Juliana; Carmo, Mariana Magalhães do; Castro, Yara Pisanelli Gustavo

doi:10.5935/0104-7795.20120035

Cited by 6 publications

(12 citation statements)

References 8 publications

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“…The home structure has suffered reorganization to welcome the new member, being common, as shown by other studies, that mother is the main caregiver, deviating from their work activities to dispense all of the necessary continuing care (10,(21)(22) . From this perspective, disease and caregiver practice transcend the individual sphere of the person with chronic illness and reach all members of the family, especially the primary caregiver.…”

Section: Discussionmentioning

confidence: 99%

“…In many cases, urinary incontinence becomes necessary to perform the BSR with the function of preventing the occurrence of complications such as urinary infections related to incomplete emptying of the bladder and kidney problems, besides being an alternative to controlling incontinence (14,22,26) .…”

Section: Discussionmentioning

confidence: 99%

“…Confirming our findings, study that investigated the perceptions and feelings of family caregivers about achieving BSR in children with myelomeningocele demonstrated the use of expressions of positive and negative connotations about this procedure. The negative connotation has been expressed by words such as fear, evil, complicated and difficult while performing the technique with children (22) .…”

Section: Discussionmentioning

confidence: 99%

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Menores com necessidades especiais de saúde e familiares: implicações para a Enfermagem

Sousa

Gomes

2016

Rev. Bras. Enferm.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

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Menores com necessidades especiais de saúde e familiares: implicações para a Enfermagem

Sousa

Gomes

2016

Rev. Bras. Enferm.

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“…Common initial reactions that parents express when told of its need often act as obstacles to its acceptance (personal observations of several authors -SBB, KC, LCH). 18 The aim of the current study was to discover how families learned to implement and manage their child's CIC needs by gathering qualitative information through interviews of caregivers, adolescents, and young adults about their experiences. Our goal was to use semi-structured interviews designed to uncover facilitators and barriers to beginning CIC to initiate potential improvements in a multidisciplinary approach.…”

Section: Introductionmentioning

confidence: 99%

“…However, there are no studies extant that reveal what caregivers and patients react to how CIC was introduced to them at the start. Common initial reactions that parents express when told of its need often act as obstacles to its acceptance (personal observations of several authors ‐ SBB, KC, LCH) 18 . The aim of the current study was to discover how families learned to implement and manage their child's CIC needs by gathering qualitative information through interviews of caregivers, adolescents, and young adults about their experiences.…”

Section: Introductionmentioning

confidence: 99%

The art of introducing clean intermittent catheterization: How families respond and adapt: A qualitative study

Bauer

Saunders

Masoom

et al. 2022

Neurourology and Urodynamics

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Introduction Since its inception >50 years ago, clean intermittent catheterization (CIC) has become ubiquitous in managing lower urinary tract dysfunction in children. Emphasis has been on its impact on daily life, but little on its implementation and adjustment in families. The aim of the current study was to discover how families learned to implement and manage their child's CIC needs by interviewing caregivers, adolescents, and young adults about their experiences. Interviews were designed to uncover facilitators and barriers to beginning CIC to initiate potential improvements in a multidisciplinary approach. Methods A semi‐structured interview guide was developed and piloted initially to 12 families for validation. Between August 2018 and October 2019, 40 families (52 interviews of caregivers and patients >12 years) were then interviewed with open‐ended questions interspersed with more specific ones to generate discussion. Transcripts were coded using Dedoose software to create a base list with emergent codes. Inductive and deductive methods were employed to generate themes. Consensus was reached during successive team meetings. Results Five major and several subthemes emerged regarding implementation of CIC by caregivers and patients learning CIC for the first time. Theme 1 Parental reaction to CIC: Caregivers described benefits of an adjustment period on learning their child's need for CIC. Prenatal information to caregivers of spina bifida children gave them time to mentally process the need for CIC. Theme 2 Ease of learning CIC: impact of age and gender: caregivers identified advantages of initiating CIC in infancy. Caregivers speculated CIC was physically easier in boys than girls due to meatus location. Developmentally ready children expressed a desire for independence and privacy as they learned to initiate CIC. Theme 3 The impact of additional caregiver support in learning and performing CIC: presence of multiple caregivers optimized learning and implementation of CIC. Having secondary caregivers available provided peace of mind and more flexibility in maintaining reliable CIC care. Patients learning CIC found it helpful to have a parent present at the teaching session. Occasionally, female caregivers reported feelings of anger and frustration when male caregivers were reluctant to be involved in catheterization, irrespective of their child's gender. Theme 4 Satisfaction with healthcare team's approach: The healthcare team's responsiveness to their learning needs affected how they mastered CIC. The healthcare team's teaching and reassurance helped build caregiver confidence. Developmentally appropriate children were able to learn self‐catheterization when supported by the healthcare team. Patients learning self‐CIC articulated having a supportive healthcare team was helpful with implementation. Theme 5 Effect of CIC on employment status relative to job changes, insurance, and daycare: implementing and performing CIC presented a spectrum of issues related to employment. Educating employers reg...

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Predictive Factors for Intermittent Self-catheterization in German and Brazilian Individuals With Spina Bifida and Neurogenic Bladder Dysfunction

Faleiros

Käppler

Costa

et al. 2016

Journal of Wound, Ostomy &Amp; Continence Nursing

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Emotional perception of family-member caregivers regarding the clean intermittent catheterization in myelomeningocele cases

Cited by 6 publications

References 8 publications

Menores com necessidades especiais de saúde e familiares: implicações para a Enfermagem

Menores com necessidades especiais de saúde e familiares: implicações para a Enfermagem

The art of introducing clean intermittent catheterization: How families respond and adapt: A qualitative study

Predictive Factors for Intermittent Self-catheterization in German and Brazilian Individuals With Spina Bifida and Neurogenic Bladder Dysfunction

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