A possibility for strengthening family life and health: Family members' lived experience when a sick child recieves home care in sweden
mother; responsibility; personal experience; family life; home care; nonhuman; childhood cancer; sibling; wellbeing; genetic transcription; expectation; conference abstract; human; child; female; male; interview; clinical article; attention; father; Sweden; lion; welfare
Background/Objectives: 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 healthcare services. Design/Methods: A descriptive qualitative design was chosen. Twelve 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 analyzed using a hermeneutic phenomenological approach. Results: 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. Conclusions: The findings suggest that care in the family's home is a useful complement to hospital care when given with close attention to family members' needs, as positive effects of home care might be jeopardized when expectations are not successfully shared. The study was funded by the Swedish Childhood Cancer Foundation, The Swedish Research Council for Health, Working Life and Welfare, The Lions Research Foundation, and The Jonas Foundation.
Castor C; Hansson H; Landgren K; Kristensson HI
Pediatric Blood and Cancer
2018
<a href="http://doi.org/10.1002/pbc.27455" target="_blank" rel="noreferrer noopener">10.1002/pbc.27455</a>
Inequalities in Access to Bereavement Support Before and During COVID-19: Findings from Voluntary and Community Sector Bereavement Services in the UK
bereavement; child; hospice; human; female; male; attention; bereavement; palliative; organization; gender; welfare; therapy; support; study; pandemic; disease; 2019; clinical; population; abstract; conference; controlled; major; social; and; ethnic; coronavirus; disadvantaged; group; media; minority; sexual
Background/aims: The COVID-19 pandemic has resulted in global mass bereavement; in the UK alone there have been 140,000 deaths to date, with a disproportionate impact on Black, Asian or minoritized ethnic (BME) communities. Voluntary and community sector (VCS) bereavement services including hospices play an important role in bereavement support. We aimed to determine services' perspectives on access to their support.
Selman L; Sutton E; Medeiros Mirra R; Goss S; Longo M; Seddon K; Penny A; Wakefield D; Nelson A; Byrne A; Harrop E
Palliative Medicine
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/02692163221093145" target="_blank" rel="noreferrer noopener">10.1177/02692163221093145</a>