Parents’ perspectives on caring for children after solid organ transplant

Lerret, Stacee M.; Johnson, Norah L.; Haglund, Kristin

doi:10.1111/jspn.12178

Cited by 24 publications

(26 citation statements)

References 22 publications

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“…Parents of children with spinal muscular atrophy reported frequent sleep interruptions and awakening multiple times during the night to manage the child's care (Qian et al, ). Lack of sleep or sleep problems were well reported in parents caring for their children during and after solid organ transplant (Lerret et al, ) and parents of children who have tracheostomies (Gong et al, ). Given the impact of poor sleep on mental and physical health (Irwin, ), more studies are needed to examine sleep problems and improve sleep health in this population.…”

Section: Discussionmentioning

confidence: 97%

“…Cox () described caregivers gained knowledge and confidence in their child's care and adopted nursing roles by monitoring treatment side effects and examining medical results, which were evident in our findings. Similarly, caregivers (mothers and fathers; n = 48) of children who had solid organ transplant described care as becoming routine and being confident in their child's care (Lerret, Johnson, & Haglund, ). Through understanding their child's norm, the caregivers gained confidence in the care of their child.…”

Section: Discussionmentioning

confidence: 99%

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Caregivers experiences in symptom management for their children who require medical technology at home

Spratling

Lee

2019

Specialist Pediatric Nursing

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Purpose: The purpose of this study is to explore the daily care experiences of caregivers of children who require medical technology. Specific aims were to gain an understanding of their perceptions of (a) how caregivers manage symptoms for their children who require medical technology at home, (b) why the caregivers seek emergency department (ED) and hospital care, and (c) what the caregivers need to manage their child's symptoms at home. The research question was asked, what are the education, skills, and support caregivers report needing to effectively manage their child's symptoms and prevent avoidable ED visits and hospitalizations? Design and Methods: Interpretive phenomenology was used to examine how caregivers manage their children's symptoms and technology at home, and their reasons for seeking emergency care through ED visits and/or hospitalizations. Selfidentified nine primary caregivers of children who required medical technology participated in this study. Semi-structured interviews explored the caregiver's perceptions of the child's needs for symptom and technology management, and needs for education, skills, and support.Results: Three themes were found in the participant interviews. Theme 1 was Knowing my child's normal and having confidence with daily caregiving. Theme 1 included a subtheme of Caregivers are proactive and advocates for their child. Theme 2 was This is much different from my child's normal…this is an emergency. Theme 3 was We cannot sleep and we are exhausted. In regard to education, skills, and support, caregivers described their preparation and training in the hospital before their child's discharge from the hospital with a tracheostomy and feeding tube, but lacked knowledge of new situations and symptoms at home with medical technology.Practice Implications: This study confirms the need for interventions for these caregivers to enhance education, skills, and support caregivers need to effectively manage their child's symptoms and prevent avoidable ED visits and hospitalizations, specifically enhancement of care at home. More education for caregivers of children who require medical technology is recommended to facilitate quality care for the child; few interventions have addressed care for these children, and none address education and management of symptoms and medical technology. K E Y W O R D S caregivers, children, home care, medical technology, phenomenology, symptom management

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Section: Discussionmentioning

confidence: 97%

Section: Discussionmentioning

confidence: 99%

Caregivers experiences in symptom management for their children who require medical technology at home

Spratling

Lee

2019

Specialist Pediatric Nursing

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“…Of the 16 studies, 11 studies were conducted in particular health care units (Arad et al, 2007;Dellenmark-Blom & Wigert 2014;Ekim & Ocakci 2016;Gallotto et al, 2019;Góes & Cabral 2017;Lerret et al, 2017;Meerlo-Habing et al, 2009;Pfeil et al, 2007;Schuh et al, 2016;Wells et al, 2017;Smith et al, 2018), 4 in acute medical setups Holland et al, 2014Holland et al, , 2015Weiss et al, 2017), and one in an Emergency Department (Uspal et al, 2016). Of the 16 studies, five studies included nurses' involvement in the post-discharge period Lerret et al 2017;Meerlo-Habing et al, 2009;Pfeil et al, 2007;Wells et al, 2017), eight studies included about nurses' involvement before the hospital discharge (Arad et al, 2007;Gallotto et al, 2019;Góes & Cabral 2017;Holland et al, 2014Holland et al, , 2015Schuh et al, 2016;Weiss et al, 2017;Smith et al, 2018), and 2 studies described both pre-discharge and post-discharge involvement of the nurse (Dellenmark-Blom & Wigert 2014;Ekim & Ocakci 2016). The summary of the finally selected articles has been represented in table 1.…”

Section: Resultsmentioning

confidence: 99%

The Role Of The Pediatric Nurse In Discharge Planning; Identifying Gaps In Sri Lanka

Subasinghe

Pathiranage

2021

IJNP

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Background: Pediatric discharge planning is a complex process, and that nurses need lengthy preparations. Role confusion among nurses will disrupt the smooth planning of the discharge. In Sri Lanka, although there is a possibility of reducing health costs through effective discharge planning led by pediatric nurses, it is questionable whether Sri Lankan nurses have clarified their role in this process.Method: This systematic review was conducted to map the different roles of nurses in the pediatric discharge planning process. Electronic databases of PubMed and CINAHL were searched for peer-reviewed journal articles among the pediatric population from 2005-2019, using the keywords such as discharge planning, pediatric nurse, care transitions, transitional care, and Sri Lankan nurse.Results: Articles that resulted in the word combination ‘Discharge planning and pediatric nursing (n=329) were used for screening. Two hundred and forty articles out of the nursing scope and sixty articles that do not describe an apparent nursing involvement in the discharge process were excluded, based on abstract review and full-text review, respectively. Sixteen studies were included in the final review. Few literature was found on the topic among Sri Lankan pediatric population. Four main categories of nurses’ roles were identified with the thematic analysis: discharge educator, discharge collaborator, post-discharge care coordinator, and family counselor. Conclusion: In Sri Lanka, no such defined roles of a nurse have been established yet in the discharge planning of pediatric patients. These roles may help nurses carry out discharge planning effectively, and future studies are needed on this topic in Sri Lanka.

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“…The myFAMI app was developed based on the first author's previous work that identified a need for ongoing education and support specifically in the first month after hospital discharge as family members are trying to develop a new routine that allows for accurate medication administration and attending all medical follow‐up appointments (Lerret et al, 2014; Lerret et al, 2017). Parents also reported how conversations with the medical team positively influenced their ability to cope and build their confidence (Lerret et al, 2014).…”

Section: Methodsmentioning

confidence: 99%

“…Additional stressors for parents of pediatric transplant recipients include worry about medically‐related complications, balancing the child's medical care with family routines, role strain, and uncertainty for the child's future (Lerret et al, 2014; Lerret, Haglund, & Johnson, 2016; Lerret, Johnson, & Haglund, 2017). Family self‐management after a transplant is a key consideration for postdischarge outcomes as families experience multiple psychosocial needs and parents report symptoms of emotional trauma (Benning & Smith, 1994; Stuber, Shemesh, & Saxe, 2003; Young et al, 2003).…”

Section: Introductionmentioning

confidence: 99%

Pilot study protocol of a mHealth self‐management intervention for family members of pediatric transplant recipients

Lerret

White‐Traut

Medoff‐Cooper

et al. 2020

Research in Nursing & Health

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Solid‐organ transplantation is the treatment of choice for end‐stage organ failure. Parents of pediatric transplant recipients who reported a lack of readiness for discharge had more difficulty coping and managing their child's medically complex care at home. In this paper, we describe the protocol for the pilot study of a mHealth intervention (myFAMI). The myFAMI intervention is based on the Individual and Family Self‐Management Theory and focuses on family self‐management of pediatric transplant recipients at home. The purpose of the pilot study is to test the feasibility of the myFAMI intervention with family members of pediatric transplant recipients and to test the preliminary efficacy on postdischarge coping through a randomized controlled trial. The sample will include 40 family units, 20 in each arm of the study, from three pediatric transplant centers in the United States. Results from this study may advance nursing science by providing insight for the use of mHealth to facilitate patient/family–nurse communication and family self‐management behaviors for family members of pediatric transplant recipients.

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Parents’ perspectives on caring for children after solid organ transplant

Cited by 24 publications

References 22 publications

Caregivers experiences in symptom management for their children who require medical technology at home

Caregivers experiences in symptom management for their children who require medical technology at home

The Role Of The Pediatric Nurse In Discharge Planning; Identifying Gaps In Sri Lanka

Pilot study protocol of a mHealth self‐management intervention for family members of pediatric transplant recipients

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