Families’ concerns about the care of children with technology-dependent special health care needs

Abstract

The family needs information and support from nurses, because different concerns emerge throughout the treatment and accompaniment of a technology-dependent child.

Educational demands of family members of children with special health care needs in the transition from hospital to home

“…The transition of CSHCN from hospital to home must always be based on a liberating education, guided by Freire's concepts of awareness and dialogicity. In this sense, Freire (9) , who is the second theoretical framework adopted in this study, affirms that a valid education must start from the concrete person and their concrete reality, considering them as humans as this is their ontological vocation. However, this is an educative and transitional process that only makes sense if it is based on dialogue and on a genuine concern with the real needs and autonomy of these families, which are seen here as learners and participants of the teaching-learning process (12) .…”

“…International and national studies recommend that discharge planning includes educational interventions with family members, as they need to be prepared to receive their children at home (6)(7) . The nurse has been highlighted in the literature as the most appropriate professional to develop strategies to promote knowledge with the family caregiver, to coordinate comprehensive care and the transition from hospital to home, and to advocate for CSHCN and their families, as they have specialized training and knowledge of health issues (7)(8)(9) . Therefore, the nurse must promote a dialogic education process with the family caregivers of CSHCN in the transition from hospital to home, aiming to know their realities and identify educational demands, to create a space for listening, learning and exchange of experience between the family members and to reduce doubts, anxiety and difficulties related to the care of CSHCN.…”

A systematic concept analysis of ‘technology dependent’: challenging the terminology

“…Parents may be influenced by previous experiences, for example if they have another child with a similar condition, how they experienced the care of that child and whether that child is still alive or has died [39]. They may also be so consumed by their immediate concerns for the child's survival that they may not fully understand the options available for their child's care [39,67,68]. The literature is replete with stressors of the parents at such critical junctures in care delivery including a feeling of lack of control over the ongoing instability of the child, insomnia, poor diet, and exhaustion [69].…”

“…The stress of moving out of PICU and the realignment of care expectations has been identified as a period of significant stress for parents [71]. General concerns when planning to move to home includes parents' stress about becoming a clinician in the home and stress about the potential for equipment malfunction [24,68,71,[93][94][95][96][97][98][99][100][101][102][103][104][105][106][107]. Specific challenges identified include grieving for a well child [71]; learning to master care delivery in a variety of settings [108]; guilt over having less time with the other children at home or relying on them for assistance in care giving [109]; causing pain to their child when carrying out clinical procedures [109][110][111][112]; concern over sleep disturbance [108,113]; and difficulty accessing and delivering a large number of medications [24].…”

Parents' experiences of transition from hospital to home of a child with complex health needs: A systematic literature review

“…A total of 13 studies of mixed quality were included in the review of which eight were from the USA (Callans, Bleiler, Flanagan, & Carroll, 2016;Canary & Wilkins, 2017;Desai, Durkin, Jacob-Files, & Mangione-Smith, 2016;Lakshmanan et al, 2019;Leyenaar, O'Brien, Leslie, Lindenauer, & Mangione-Smith, 2017;Thrasher et al, 2017;Van Orne, Branson, & Cazzell, 2018;Wells et al, 2017) and one each from Brazil (Esteves, Silva, Conceicao, & Paiva, 2015), Canada (Manhas & Mitchell, 2012), Italy (Zanello et al, 2015), Ireland (Brenner et al, 2015) and the UK (Price, McCloskey, & Brazil, 2017). Three studies adopted a mixed-method design (Thrasher et al, 2017;Van Orne et al, 2018;Wells et al, 2017) while the ten remaining papers were qualitative (Brenner et al, 2015;Callans et al, 2016;Canary & Wilkins, 2017;Desai et al, 2016;Esteves et al, 2015;Lakshmanan et al, 2019;Leyenaar et al, 2017;Manhas & Mitchell, 2012;Price et al, 2017;Zanello et al, 2015). A table of the included studies is presented in Tables 2 and 3.…”