Parents' experiences of negotiating care for their                 technology-dependent child

Reeves, Elizabeth; Timmons, Stephen; Dampier, Sally

doi:10.1177/1367493506066483

Cited by 49 publications

(45 citation statements)

References 25 publications

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“…Avis and Reardon (2008), who interviewed parents of children with special needs, highlight parents' concerns about being expected to provide their children with R C N i P r o o f medicine, food and personal care. In the absence of negotiation, it seems that parents think they are powerless and so comply with nurses' requests (Espezel and Canam 2003, Roden 2005, Reeves et al 2006, Coyne and Cowley 2007, Avis and Reardon 2008, Sousa et al 2013. Coyne and Cowley (2007) suggest that parents are not confident that nurses will be available when they need them due to competing demands on their time.…”

Section: Emerging Themesmentioning

confidence: 99%

“…Coyne and Cowley (2007) suggest that parents are not confident that nurses will be available when they need them due to competing demands on their time. Similarly, Hughes (2007) and Reeves et al (2006) report that parents feel obliged to remain with their children because nurses always appear to be busy.…”

Section: Emerging Themesmentioning

confidence: 99%

“…Similarly, families' specific circumstances may affect the amount of time they can spend in hospital and, consequently, the level of care that they can provide their children (Hopia et al 2005). Parents may view the admission of children with special or chronic health needs to hospital as an opportunity for respite from their role as the main carer (Reeves et al 2006), whereas the parents of children who are acutely unwell and have been admitted to hospital for the first time may wish to be fully involved in their care (Sousa et al 2013).…”

Section: Parent-nurse Relationshipsmentioning

confidence: 99%

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Roles of nurses and parents caring for hospitalised children

Bedells

Bevan

2016

Nursing Children and Young People

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This article reviews the literature on nurses' and parents' self-perceived roles when caring for hospitalised children, focusing on research conducted since the Department of Health published the National Service Framework for Children: Standard for Hospital Services in 2003. Three main themes emerge from the review: nurses' perceptions, parents' perceptions, and negotiation. Clarification of what nurses and parents consider to be their respective roles when caring for hospitalised children is a prerequisite for negotiation of those roles. The family's background, life experiences and circumstances influencs the effectiveness of negotiation between nurses and parents. The article explores potential barriers to negotiation, including poor communication and failure to provide information. Limitations of the research and the implications for practice are considered.

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Section: Emerging Themesmentioning

confidence: 99%

Section: Emerging Themesmentioning

confidence: 99%

Section: Parent-nurse Relationshipsmentioning

confidence: 99%

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Roles of nurses and parents caring for hospitalised children

Bedells

Bevan

2016

Nursing Children and Young People

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“…While health professionals control the hospital setting, the home is the family's domain. Community-based nurses or those in similar visiting advisory roles may feel their professional expertise and advice is challenged when family members are in control at home (Surpin and Hanley 2004) while conversely, carers may experience a loss of autonomy if the person they care for is acutely admitted to hospital (Reeves et al 2006) or for respite care. Family carers may be in the contradictory position of, on the one hand, being responsible for complex tasks, while on the other hand, being expected to defer to and conform with professional advice (McKeever 1991).…”

Section: Complex Home Care: Issues Of Safety and Responsibilitymentioning

confidence: 99%

Complex home care: challenges arising from the blurring of boundaries between family and professional care

McDonald

McKinlay

Keeling

et al. 2017

Kōtuitui: New Zealand Journal of Social Sciences Online

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Over the last 50 years, increasingly complex care (such as tracheostomy management, dialysis or enteral feeding) has shifted from hospital to home, with a concomitant rise in patient selfmanagement and care given by family members. Recognition of the importance of the contribution of family care to the health system is also growing. This article reports the findings of a New Zealand study which explored the experiences of family carers who manage technical health procedures at home. It then draws attention to some broader issues raised by shifting complex care from professional management in hospital settings to family care at home, namely the ways in which complex home care blurs the boundaries between professional and family care (creating the ambiguous position of the expert carer) and questions of safety and responsibility in family care. We also discuss the implications for policy around family caregiving in New Zealand. Given the potential physical and mental health impacts of caring, it is time for renewed consideration of what family carers should be expected or allowed to manage and how the health system can support them in their important role. ARTICLE HISTORY

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“…The presence of the family in the hospital environment is identified according to the following aspects: caretaking role (11)(12) • Minimizing of the child's suffering (13) .…”

Section: Rev Esc Enfermmentioning

confidence: 99%

Dimensão cuidadora da enfermagem e da família na assistência à criança hospitalizada: concepções da enfermagem

Pimenta

Collet

2009

Rev. esc. enferm. USP

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Portuguese / English: www.scielo.br/reeusp RESUMO A dimensão e o modo de participação da família, no cuidado à criança hospitalizada, tem sido tema de estudo da enfermagem. O objetivo desta pesquisa foi analisar como está delineada a dimensão cuidadora da enfermagem e da família na assistência à criança hospitalizada. Trata-se de uma pesquisa qualitativa, realizada com a equipe de enfermagem de um hospital-escola, por meio de entrevista semiestruturada. A organização dos dados pautou-se na análise temática. Os resultados apontam que o trabalho realizado pela enfermagem está centrado em procedimentos; que a interação com a criança e sua família é tangencial no processo de cuidar; e que a família tem dividido cuidados com a equipe mas não tem sido compreendida como co-participante, tampouco incluída na perspectiva do cuidado. Defende-se que a criação de vínculo pode promover uma ló-gica do processo de trabalho, na perspectiva da integralidade e resgate da dimensão cuidadora da enfermagem. DESCRITORES ABSTRACTFamily participation in the care of a hospitalized child, both regarding its forms and dimension, has been a theme of study in nursing. The objective of this study was to analyze the organization of both nursing care and family care to the hospitalized child. This qualitative research was performed using semi-structured interviews with nursing staff of a school-hospital. Theme analysis was used to guide data organization. The results show that nursing care focuses on procedures. Interaction with the children and their family is tangential to the caring process. Families have shared responsibilities with the staff but have not been recognized as a co-participant or been included into the caring perspective. Efforts should be made to create bonds to promote a logic regarding the process of work within the integrality perspective and to rescue the caring dimension of nursing. KEY WORDS RESUMENA dimensión y el modo de participación de la familia, en el cuidado al niño hospitalizado, ha sido tema de estudios de la enfermería. El objetivo de esta investigación fue analizar como está delineada la dimensión cuidadora de la enfermería y de la familia en la asistencia al niño hospitalizado. Se trata de una investigación cualitativa, realizada con el equipo de enfermería de un hospital escuela, por medio de entrevistas semiestruturadas. La organización de los datos se orientó por el análisis temático. Los resultados apuntan que el trabajo realizado por la enfermería está centrado en procedimientos. La interacción con el niño y su familia es tangencial en el proceso de cuidar. La familia ha dividido los cuidados con el equipo y no ha sido entendida como copartícipe, también no ha sido incluida en la perspectiva del cuidado. Defendemos que la producción de un vínculo puede promover una lógica del proceso de trabajo en la perspectiva integradora y rescatar la dimensión cuidadora de la enfermería. DESCRIPTORES

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Parents' experiences of negotiating care for their technology-dependent child

Cited by 49 publications

References 25 publications

Roles of nurses and parents caring for hospitalised children

Roles of nurses and parents caring for hospitalised children

Complex home care: challenges arising from the blurring of boundaries between family and professional care

Dimensão cuidadora da enfermagem e da família na assistência à criança hospitalizada: concepções da enfermagem

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