Changing Needs for Information and Support in an Online System for Parents of Children With Kidney Disease

Pinsk, Maury; Nicholas, David

doi:10.1177/2054358117714999

Cited by 5 publications

(5 citation statements)

References 43 publications

(61 reference statements)

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“…One important option is the initiation of online support groups that allow caregivers to ask questions, share stories, and comfort one another. Some studies have shown the effectiveness of online support groups at improving the well‐being of caregivers of sick children 31,32 . As a whole, increasing access to support groups and accurate information would likely improve SM users' online experiences and promote quality care 29,33 …”

Section: Discussionmentioning

confidence: 99%

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Searching for a cure on Facebook: Patterns of social media use amongst caregivers of children with brain tumors

2022

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Objective Social media (SM) is ubiquitous in modern society. How SM provides information, advice, and community to families coping with childhood brain tumors is poorly understood. We sought to understand how caregivers of children with brain tumors use and are affected by SM. Methods A survey was administered to caregivers of children who were receiving or within the last 5 years received chemotherapy for pediatric brain tumors. Differences in variables across groups were evaluated using nonparametric tests and chi‐square tests. Results Thirty‐five of 36 caregivers acknowledged use of SM. Facebook was the most used platform (86%). Fifty‐eight percent and 47% used SM to read and share information about their child's cancer, respectively. Thirty‐four percent were comforted while 40% were bothered by cancer‐related information on SM. Eleven participants (31%) sought a second opinion based on information from SM. Caregivers of children with a poor prognosis were more likely to use a treatment from SM that was not initially recommended by their oncologist (p = 0.043). Conclusion SM is commonly used by caregivers to obtain and share care‐related information. Many noted positive and negative effects of SM on emotional wellness. SM influenced treatment decisions, and this effect was stronger with poorer prognosis. Our results demonstrate the dichotomous impact of SM in medicine—it is a source of both solace and anxiety, a place to confirm treatment decisions and to create doubt in the treatment decisions of the oncologist. This illustrates the importance of discussing SM with caregivers of children with brain tumors.

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Section: Discussionmentioning

confidence: 99%

“…Some studies have shown the effectiveness of online support groups at improving the well‐being of caregivers of sick children. 31 , 32 As a whole, increasing access to support groups and accurate information would likely improve SM users' online experiences and promote quality care. 29 , 33…”

Section: Discussionmentioning

confidence: 99%

Searching for a cure on Facebook: Patterns of social media use amongst caregivers of children with brain tumors

2022

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“…Online support groups may help reduce social and geographic isolation experienced due to the rarity of individual genetic renal conditions. 24…”

Section: Discussionmentioning

confidence: 99%

“…Online support groups may help reduce social and geographic isolation experienced due to the rarity of individual genetic renal conditions. 24 High-quality and consolidated information on their child's condition, including links to credible web sites and take-home resources to share with others were widely desired. This is a particularly important finding because limited access to appropriate resources can contribute to misinformation and increased disengagement from genetic health care services.…”

Section: Discussionmentioning

confidence: 99%

Genetic Testing in the Pediatric Nephrology Clinic: Understanding Families' Experiences

et al. 2020

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Genomics is rapidly being integrated into the routine care of children and families living with renal disease, principally as a diagnostic tool but also to direct therapy, identify at-risk relatives, and facilitate family planning. However, despite significant progress in understanding the genetic heterogeneity of inherited renal disease, the impact of genetic testing on parents and families of affected children is not well understood. This study aimed to investigate the experiences of families undergoing genetic testing, the psychosocial impact of receiving a genetic test result, and parent information and support needs. In-depth semistructured interviews were conducted with 26 parents of pediatric patients (<18 years of age) who had undergone genomic investigation for a suspected genetic renal disease at two tertiary pediatric nephrology services. Interviews were transcribed verbatim, coded, using NVivo software, and thematic analysis was undertaken. Key themes included emotional adjustment to a genetic diagnosis, the importance of parent-provider relationships, empowerment through social connection, and the value of family-centered care. Results highlighted the wide-ranging psychosocial impact of genetic testing on parents, as well as the importance of patient-support networks in enabling parents/families to cope and adapt. Targeted approaches to enhance communication of genetic information and the development of tailored resources to address parents' genetics and health service needs may lead to more satisfactory experiences of genetic testing.

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“…These have been useful in providing information, as well as fostering parental interaction, mutual support, and collaboration. 38 A final goal will be to develop a set of quality care indicators, or a “scorecard” that provides more objective measures of the transition clinic processes. 37 …”

Section: Discussionmentioning

confidence: 99%

Transition From Pediatric to Adult Nephrology Care: Program Report of a Single-Center Experience

Cybulsky,

Cercena,

Goodyer

et al. 2023

Can J Kidney Health Dis

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Purpose of program: Adolescents and young adults with chronic disease face many personal and systemic barriers that may impede their successful transition from pediatric to adult care, putting them at risk for treatment nonadherence, loss to follow-up, and poor health outcomes. Such barriers include impaired socioemotional functioning, overreliance on adult caregivers, lack of disease-specific knowledge, and poor coordination between pediatric and adult health care services. In 2007, we established a specialized youth to adult nephrology transition clinic at a tertiary care center to address these barriers and provide adolescents and young adults with renal disease followed at the affiliated children’s hospital with a seamless transition to adult care. Sources of information: The attending clinic nephrologist collected data prospectively for this quality improvement report. Methods: The features of this specialized clinic included (1) single point of entry and single triage adult nephrologist, (2) ongoing follow-up with a single adult nephrologist who communicated with the pediatric nephrologists, and (3) a single specialized clinic nurse who provided disease-specific education and helped to ensure ongoing patient engagement and follow-up. Importantly, the transition patients were booked into regular appointment slots in the adult nephrologist’s general clinic, which facilitated regular follow-up without additional resources. The salary of the transition clinic nurse was covered by an unrestricted grant. Patient visits were in-person, except between 2020 and 2021 when visits were by telephone due to the pandemic. Key findings: A total of 213 patients were referred and assessed in the transition clinic from February 2007 until October 2022. Most referrals were from pediatric nephrologists. Among the patients, 29% had a hereditary kidney disease; in 71%, the disease was acquired. The most common disease was glomerulonephritis and ~30% of the patients suffered from a “rare” disease. Of the 213 patients, 123 (58%) continue to be followed up (mean follow-up: 4.8 years), 27 (13%) were transferred to other physicians, in part to accommodate treatment closer to patients’ homes, and 29 (14%) without ongoing care needs were discharged. Only 33 (15%) were lost to follow-up. There were several advantages to the clinic, including the maintenance of accurate records, a process to minimize loss to follow-up, and a “critical mass” of patients with rare diseases, which facilitated development of special expertise in rare disease pathogenesis, diagnosis, treatment, and management of complications. Patients with glomerulonephritis demonstrated a stable serum creatinine over 3 to 15 years, and morbidity (as reflected by emergency room visits and hospitalizations) was low. Limitations: Due to the relatively small numbers of patients in the disease categories, it was not possible to determine conclusively whether attendance of patients in the transition clinic reduced the rate of progression of kidney disease or morbidity. Implications: A dedicated referral, triage, and follow-up process post-transition with only modest financial resources and personnel can result in accurate tracking of clinic data, as well as consistent and reliable follow-up and expert patient care.

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Changing Needs for Information and Support in an Online System for Parents of Children With Kidney Disease

Cited by 5 publications

References 43 publications

Searching for a cure on Facebook: Patterns of social media use amongst caregivers of children with brain tumors

Searching for a cure on Facebook: Patterns of social media use amongst caregivers of children with brain tumors

Genetic Testing in the Pediatric Nephrology Clinic: Understanding Families' Experiences

Transition From Pediatric to Adult Nephrology Care: Program Report of a Single-Center Experience

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