Maintaining family life balance while facing a child's imminent death—A mixed methods study

Eskola, Katri; Bergstraesser, Eva; Zimmermann, Karin; Cignacco, Eva

doi:10.1111/jan.13304

Cited by 21 publications

(59 citation statements)

References 41 publications

(57 reference statements)

Supporting

Mentioning

Contrasting

Unclassified

Order By: Relevance

“…The findings show that home care supported family life as everyday activities became possible, and time and energy was saved when they no longer needed demanding hospital visits, expressed as family members’ lived time (Van Manen, ). This is in line with previous studies showing that families feel more in charge of their time (Eskola et al., ; Heaton et al., ). Our findings showed that the family members experienced that they slept better and that the children ate better, reflecting their lived body (Van Manen, ).…”

Section: Discussionsupporting

confidence: 93%

“…Systematic reviews show that HCS might be feasible (Parab et al, 2013) and may bring unchanged or lower financial costs to the healthcare system and to the families with equivalent clinical outcome (Parker et al, 2012). Studies show that families with children suffering from various illnesses often prefer HCS to hospital care (Byrne & Hardy, 2005;Eskola, Bergstraesser, Zimmermann, & Cignacco, 2017;Hansson, Kjaergaard, Schmigelow, & Hallstrom, 2012;Hansson et al, 2013;Heaton, Noyes, Sloper, & Shah, 2005;Spiers, Parker, Gridley, & Atkin, 2011;Stevens et al, 2006b), and they find their everyday life less disturbed when care is given in their home (Angelhoff, Edell-Gustafsson, & Morelius, 2015;Eskola et al, 2017;Heaton et al, 2005;Stevens et al, 2006b). Most studies on home care for sick children have chosen a parental perspective.…”

mentioning

confidence: 99%

See 1 more Smart Citation

A possibility for strengthening family life and health: Family members’ lived experience when a sick child receives home care in Sweden

Castor

Landgren

Hansson

et al. 2017

Health Soc Care Community

View full text Add to dashboard Cite

Families often prefer home care to hospital care, and home-care services for ill children are increasing worldwide with limited knowledge of families' needs during curative and palliative home care. The aim of this study was to elucidate family members' lived experience when a sick child received home care from county-based primary healthcare services. A descriptive qualitative design was chosen and 12 families including sick children receiving home care and their mothers, fathers and siblings in the south of Sweden were interviewed between December 2015 and January 2017. The transcribed interviews were analysed using a hermeneutic phenomenological approach. The family members' lived experience was described in three essential themes:"Strengthening family life" relates to how home care induced freedom and luxury in a strained period of life and supported the families' everyday life. Usual social activities and relations were maintained as time and energy was saved when receiving home care. "Promoting health" relates to how the family members' burden of illness decreased as the child's signs of illness alleviated and the well-being of the whole family increased when the child received care in the home. This provided a peaceful respite for family members' psychosocial recovery. The third theme, "Creating alliances," relates to the importance of creating trustful alliances for communicating participation in care. If trustful alliances were not created, parents felt an overwhelming responsibility and family members became anxious. The findings suggest that care in the family's home is a useful complement to hospital care. Home care should be given with close attention to family members' needs and conditions, as positive effects of home care might be jeopardised when expectations and possibilities are not successfully shared. K E Y W O R D Schild, family members' lived experience, hermeneutic phenomenology, home-care services, paediatric careThis is an open access article under the terms of the Creative Commons Attribution-NonCommercial License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited and is not used for commercial purposes.

show abstract

Section: Discussionsupporting

confidence: 93%

mentioning

confidence: 99%

A possibility for strengthening family life and health: Family members’ lived experience when a sick child receives home care in Sweden

Castor

Landgren

Hansson

et al. 2017

Health Soc Care Community

View full text Add to dashboard Cite

show abstract

“…A population‐based healthcare service, such as county‐based HCS for children in the present study, rather than condition‐specific service, might help optimise accessibility 29 as it allows generous accessibility of support even when the number of children was low 3. Easy and extensive access to HCS further offers comfort and relief for families in strained periods of life 7,30.…”

Section: Discussionmentioning

confidence: 97%

Healthcare costs and productivity losses associated with county‐based home‐care service for sick children in Sweden

Castor

Bolin

Hansson

et al. 2020

Scandinavian Caring Sciences

View full text Add to dashboard Cite

Healthcare costs and productivity losses associated with county-based home-care service for sick children in Sweden Aims: The aim of this study was to estimate the healthcare costs and productivity losses associated with countybased home-care services (HCS) for sick children. Methods: In this observational follow-up study, a combination of hospital care and HCS was compared to estimated alternative care solely at the hospital. Data on one year of healthcare utilisation for 32 children, supplied by the hospital and HCS, were collected from administrative systems. Corresponding healthcare unit prices were collected from healthcare pricelists. The human-capital approach was applied to estimate productivity losses and the value of productivity losses for 25 parents. Family characteristics, including parental work absenteeism and income, were collected by a questionnaire distributed to parents at five time points during a year. Descriptive and comparative statistics were used for analysis and carried out with ethical approval. Results: Healthcare costs for children receiving a combination of hospital care and HCS varied among children with estimated average healthcare cost savings of SEK 50 101 per child compared to the alternative of care provided only in the hospital. The reduced costs were related to children receiving nonpalliative HCS care tasks. Average annual productivity losses due to parental work absenteeism were estimated at 348 hours with an associated monetary value estimated at SEK 137 524 per parent. Conclusion: County-based HCS, provided as complement to and substitute for hospital care for ill children, does not increase healthcare cost and should be a prioritized area when organising paediatric health care. Productivity losses vary greatly among parents and are pronounced also when children receive HCS with signs of gender-related differences.

show abstract

“…The high level of coordination with the leading team in the hospital and the expertise required makes it especially challenging. Subgroup analysis of our study’s at-home population targeting facilitators for and barriers to EOL care in the home setting has been performed and is published elsewhere [ 29 ].…”

Section: Discussionmentioning

confidence: 99%

Patterns of paediatric end-of-life care: a chart review across different care settings in Switzerland

Zimmermann¹,

Cignacco²,

Engberg³

et al. 2018

BMC Pediatr

Self Cite

View full text Add to dashboard Cite

BackgroundPaediatric end-of-life care is challenging and requires a high level of professional expertise. It is important that healthcare teams have a thorough understanding of paediatric subspecialties and related knowledge of disease-specific aspects of paediatric end-of-life care. The aim of this study was to comprehensively describe, explore and compare current practices in paediatric end-of-life care in four distinct diagnostic groups across healthcare settings including all relevant levels of healthcare providers in Switzerland.MethodsIn this nationwide retrospective chart review study, data from paediatric patients who died in the years 2011 or 2012 due to a cardiac, neurological or oncological condition, or during the neonatal period were collected in 13 hospitals, two long-term institutions and 10 community-based healthcare service providers throughout Switzerland.ResultsNinety-three (62%) of the 149 reviewed patients died in intensive care units, 78 (84%) of them following withdrawal of life-sustaining treatment. Reliance on invasive medical interventions was prevalent, and the use of medication was high, with a median count of 12 different drugs during the last week of life. Patients experienced an average number of 6.42 symptoms. The prevalence of various types of symptoms differed significantly among the four diagnostic groups. Overall, our study patients stayed in the hospital for a median of six days during their last four weeks of life. Seventy-two patients (48%) stayed at home for at least one day and only half of those received community-based healthcare.ConclusionsThe study provides a wide-ranging overview of current end-of-life care practices in a real-life setting of different healthcare providers. The inclusion of patients with all major diagnoses leading to disease- and prematurity-related childhood deaths, as well as comparisons across the diagnostic groups, provides additional insight and understanding for healthcare professionals. The provision of specialised palliative and end-of-life care services in Switzerland, including the capacity of community healthcare services, need to be expanded to meet the specific needs of seriously ill children and their families.

show abstract

Maintaining family life balance while facing a child's imminent death—A mixed methods study

Cited by 21 publications

References 41 publications

A possibility for strengthening family life and health: Family members’ lived experience when a sick child receives home care in Sweden

A possibility for strengthening family life and health: Family members’ lived experience when a sick child receives home care in Sweden

Healthcare costs and productivity losses associated with county‐based home‐care service for sick children in Sweden

Patterns of paediatric end-of-life care: a chart review across different care settings in Switzerland

Contact Info

Product

Resources

About