Issues facing families of infants discharged after cardiac surgery: the perceptions of charity helpline staff

Wray, Jo; Tregay, Jenifer; Bull, Catherine; Knowles, Rachel L; Crowe, Sonya; Brown, Kate

doi:10.1111/apa.14304

Cited by 8 publications

(2 citation statements)

References 23 publications

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“…The reasons parents gave for their declining participation reflected the lack of time and support they had for childcare. This is consistent with previous studies investigating the challenges faced by families of children who are undergoing surgery for congenital heart disease (Wray et al 2018).…”

Section: Methods Of Engagementsupporting

confidence: 93%

‘Just one interview’: making visible the hidden workload associated with qualitative research

et al. 2023

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Background Appropriate costing and allocation of resources is vital to ensure that recruitment to a study is achieved on time and on target. However, there is little guidance concerning the workload associated with qualitative research.Aim To review the planned versus actual workloads in a qualitative sub-study following elective cardiac surgery in children.Discussion Parents of children approached for a clinical trial were invited to participate in a semi-structured interview to explore their views about making decisions concerning their children's participation in the trial. A workload audit was conducted using anticipated points of contact with participants, and the duration of activities identified in the protocol and Health Research Authority statement of activities; these were compared with timed activities documented by the research team. ConclusionThe current system did not anticipate or capture the workload associated with conducting a relatively straightforward qualitative sub-study of a clinical trial with a researchengaged patient group.Implications for practice Understanding the hidden workload associated with qualitative research is vital in ensuring that project timelines, recruitment targets and funding for research staff are realistic.

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Section: Methods Of Engagementsupporting

confidence: 93%

‘Just one interview’: making visible the hidden workload associated with qualitative research

et al. 2023

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“…S2 Table. Data extraction table.Please note references[45,[54][55][56][57][58][59][60][61][62][63][64][65][66][67][68] are included in the scoping review, further information on these papers is included in the data extraction table. (PDF)…”

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confidence: 99%

A scoping review of the post-discharge care needs of babies requiring surgery in the first year of life

Maraschin,

Adella,

Nagraj

2023

PLOS Glob Public Health

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Congenital anomalies are among the leading causes of under-5 mortality, predominantly impacting low- and middle-income countries (LMICs). A particularly vulnerable group are babies with congenital disorders requiring surgery in their first year. Addressing this is crucial to meet SDG-3, necessitating targeted efforts. Post-discharge, these infants have various care needs provided by caregivers, yet literature on these needs is scant. Our scoping review aimed to identify the complex care needs of babies post-surgery for critical congenital cardiac conditions and non-cardiac conditions. Employing the Joanna Briggs Institute’s methodological framework for scoping reviews we searched Pubmed, EMBASE, CINAHL, PsychINFO, and Web of Science databases. Search terms included i) specific congenital conditions (informed by the literature and surgeons in the field), ii) post-discharge care, and iii) newborns/infants. English papers published between 2002–2022 were included. Findings were summarised using a narrative synthesis. Searches yielded a total of 10,278 papers, with 40 meeting inclusion criteria. 80% of studies were conducted in High-Income Countries (HICs). Complex care needs were shared between cardiac and non-cardiac congenital conditions. Major themes identified included 1. Monitoring, 2. Feeding, and 3. Specific care needs. Sub-themes included monitoring (oxygen, weight, oral intake), additional supervision, general feeding, assistive feeding, condition-specific practices e.g., stoma care, and general care. The post-discharge period poses a challenge for caregivers of babies requiring surgery within the first year of life. This is particularly the case for caregivers in LMICs where access to surgical care is challenging and imposes a financial burden. Parents need to be prepared to manage feeding, monitoring, and specific care needs for their infants before hospital discharge and require subsequent support in the community. Despite the burden of congenital anomalies occurring in LMICs, most of the literature is HIC-based. More research of this nature is essential to guide families caring for their infants post-surgical care.

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State of the science of care coordination, rurality, and well-being for infants with single ventricle heart disease in the Interstage period, an integrative review

Moore¹,

Gephart²

2021

Heart & Lung

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Issues facing families of infants discharged after cardiac surgery: the perceptions of charity helpline staff

Cited by 8 publications

References 23 publications

‘Just one interview’: making visible the hidden workload associated with qualitative research

‘Just one interview’: making visible the hidden workload associated with qualitative research

A scoping review of the post-discharge care needs of babies requiring surgery in the first year of life

State of the science of care coordination, rurality, and well-being for infants with single ventricle heart disease in the Interstage period, an integrative review

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