Social support of families with tracheostomized children

Lemos, Hellen Joyce Moreira de; Mendes-Castillo, Ana Márcia Chiaradia

doi:10.1590/0034-7167-2018-0708

Cited by 7 publications

(2 citation statements)

References 21 publications

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“…This includes effects on sleep, relationships, social life and ability to work 10. Our findings also complement qualitative research from other countries focused on specific experiences, such as decision-making around tracheostomy procedures and risk communication,12 18 19 transition to home,20–23 home care,32 social support33 and healthcare seeking 34. These studies have focused mainly on the experiences of informal caregivers and on intensive care settings 25.…”

Section: Discussionsupporting

confidence: 69%

Providing care for children with tracheostomies: a qualitative interview study with parents and health professionals

et al. 2023

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ObjectivesTo explore the experience of caring for children with tracheostomies from the perspectives of parents and health professional caregivers.DesignQualitative semistructured interview study.SettingOne region in England covered by a tertiary care centre that includes urban and remote rural areas and has a high level of deprivation.ParticipantsA purposive sample of health professionals and parents who care for children who have, or have had, tracheostomies and who received care at the tertiary care centre.InterventionInterviews undertaken by telephone or video link.Primary and secondary outcome measuresQualitative reflexive thematic analysis with QSR Nvivo 12.ResultsThis paper outlines key determinants and mediators of the experiences of caregiving and the impact on psychological and physical health and quality of life of parents and their families, confidence of healthcare providers and perceived quality of care. For parents, access to care packages and respite care at home as well as communication and relationships with healthcare providers are key mediators of their experience of caregiving, whereas for health professionals, an essential influence is multidisciplinary team working and support. We also highlight a range of challenges focused on the shared care space, including: a lack of standardisation in access to different support teams, care packages and respite care, irregular training and updates, and differences in health provider expertise and experiences across departments and shift patterns, exacerbated in some settings by limited contact with children with tracheostomies.ConclusionsUnderstanding the experiences of caregiving can help inform measures to support caregivers and improve quality standards. Our findings suggest there is a need to facilitate further standardisation of care and support available for parent caregivers and that this may be transferable to other regions. Potential solutions to be explored could include the development of a paediatric tracheostomy service specification, increasing use of paediatric tracheostomy specialist nurse roles, and addressing the emotional and psychological support needs of caregivers.

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Section: Discussionsupporting

confidence: 69%

Providing care for children with tracheostomies: a qualitative interview study with parents and health professionals

et al. 2023

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“…Benefit of treatment 19 ; Best interest (of the child 17 ; Clinical need 11 17 20-28 ; Requirement to make a decision 14 ; Prognosis 16 ; Treatment 8 28-34 ; Treatment decision 29 ; Uncertainty 35 Awareness of future consequences 20 ; Future health 36 37 , Hope 38 ; Hope for future technological improvement 20 ; Possibilities of the technology 35 ; Improve life expectancy 39 ; Survivorship 40 ; Well-being 28 Altruism 38 ; Coercion of physicians 41 ; Communication 21 42 ; Decisionmaking 29 ; Ethical conflicts 17 ; Fear 13 19 ; Human rights 23 24 ; Information 31 ; Requirement to share information 28 ; Legal obligation 43 ; Obligation 13 19 21 38 ; Treatment resources 33 ; Pressure 11 ; Short-term outcome 26 Anxiety 44 ; Attitude towards value of life 35 ; Being positive 35 ; Experience maturity 35 ; Hope for the future 37 ; Purpose of role as physician 19 ; Responsibility 23 26 35 45 ; Values 17 ; Wishes of parents or staff 46…”

Section: Supporting Technology Initiationmentioning

confidence: 99%

Initiating technology dependence to sustain a child’s life: a systematic review of reasons

et al. 2021

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BackgroundDecision-making in initiating life-sustaining health technology is complex and often conducted at time-critical junctures in clinical care. Many of these decisions have profound, often irreversible, consequences for the child and family, as well as potential benefits for functioning, health and quality of life. Yet little is known about what influences these decisions. A systematic review of reasoning identified the range of reasons clinicians give in the literature when initiating technology dependence in a child, and as a result helps determine the range of influences on these decisions.MethodsMedline, EMBASE, CINAHL, PsychINFO, Web of Science, ASSIA and Global Health Library databases were searched to identify all reasons given for the initiation of technology dependence in a child. Each reason was coded as a broad and narrow reason type, and whether it supported or rejected technology dependence.Results53 relevant papers were retained from 1604 publications, containing 116 broad reason types and 383 narrow reason types. These were grouped into broad thematic categories: clinical factors, quality of life factors, moral imperatives and duty and personal values; and whether they supported, rejected or described the initiation of technology dependence. The majority were conceptual or discussion papers, less than a third were empirical studies. Most discussed neonates and focused on end-of-life care.ConclusionsThere is a lack of empirical studies on this topic, scant knowledge about the experience of older children and their families in particular; and little written on choices made outside ‘end-of-life’ care. This review provides a sound basis for empirical research into the important influences on a child’s potential technology dependence.

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Tracheostomy care quality improvement in low- and middle-income countries: A scoping review

Selekwa,

Maina,

Yeh

et al. 2023

PLOS Glob Public Health

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Tracheostomy is a lifesaving, essential procedure performed for airway obstruction in the case of head and neck cancers, prolonged ventilator use, and for long-term pulmonary care. While successful quality improvement interventions in high-income countries such as through the Global Tracheostomy Collaborative significantly reduced length of hospital stay and decreased levels of anxiety among patients, limited literature exists regarding tracheostomy care and practices in low and middle-income countries (LMIC), where most of the world resides. Given limited literature, this scoping review aims to summarize published tracheostomy studies in LMICs and highlight areas in need of quality improvement and clinical research efforts. Based on the PRISMA guidelines, a scoping review of the literature was performed through MEDLINE/PubMed and Embase using terms related to tracheostomy, educational and quality improvement interventions, and LMICs. Publications from 2000–2022 in English were included. Eighteen publications representing 10 countries were included in the final analysis. Seven studies described baseline needs assessments, 3 development of training programs for caregivers, 6 trialed home-based or hospital-based interventions, and finally 2 articles discussed development of standardized protocols. Overall, studies highlighted the unique challenges to tracheostomy care in LMICs including language, literacy barriers, resource availability (running water and electricity in patient homes), and health system access (financial costs of travel and follow-up). There is currently limited published literature on tracheostomy quality improvement and care in LMICs. Opportunities to improve quality of care include increased efforts to measure complications and outcomes, implementing evidence-based interventions tailored to LMIC settings, and using an implementation science framework to study tracheostomy care in LMICs.

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Social support of families with tracheostomized children

Cited by 7 publications

References 21 publications

Providing care for children with tracheostomies: a qualitative interview study with parents and health professionals

Providing care for children with tracheostomies: a qualitative interview study with parents and health professionals

Initiating technology dependence to sustain a child’s life: a systematic review of reasons

Tracheostomy care quality improvement in low- and middle-income countries: A scoping review

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