The Childhood Cancer Centre Is Coming Home: Experiences of Hospital-Based Home Care

Flon, Malin de; Glaffey, Gisela; Jarl, Linda; Sellbrant, Kristin; Nilsson, Stefan

doi:10.3390/ijerph18126241

Cited by 11 publications

(22 citation statements)

References 39 publications

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“…Consistent with previous research, 28,36–39 our overarching theme demonstrates that mutual trust within and between families and professionals has a profound impact on the overall experience of the collaboration and quality of care. Lack of trust induced insecurity and, ultimately, could lead to reluctance to collaborate.…”

Section: Discussionsupporting

confidence: 83%

Intersectoral collaboration in home-based end-of-life pediatric cancer care: A qualitative multiple-case study integrating families’ and professionals’ experiences

et al. 2022

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Background: Many children and adolescents with incurable cancer and their families prefer to receive end-of-life care and to die at home. This implies a transition of care from hospital to home and presupposes the establishment of a well-functioning collaboration between the family and professionals across health care sectors. Aim: To identify and explore key elements of home-based end-of-life care collaboration for children with cancer, as experienced by their parents and grandparents and the hospital- and community-based professionals involved. Design: Descriptive qualitative multiple-case study. Data were collected by semi-structured interviews and written responses to open-ended questions, and analyzed inductively across cases using qualitative content analysis. Setting/participants: Cases comprised a criterion sample of five children (aged <18 years), who died of cancer at home. Cases were represented by the children’s bereaved parents ( n = 8) and grandparents ( n = 7), and community-based professionals ( n = 16). Also, hospital-based professionals ( n = 10) were interviewed about the children’s end-of-life care through group interviews. Results: We identified five main themes, describing key elements of the end-of-life collaboration: Establishing the collaboration, Bolstering family life, Elucidating organization and integration, Managing challenges, and Closing the collaboration. These themes all came under the overarching theme: A mutual trust-based collaboration. On this basis, we developed the “Home-Based Pediatric End-of-Life Care Model for Children with Cancer.” Conclusions: By highlighting key elements in the family-centered, intersectoral and interprofessional end-of-life care collaboration, our “Home-Based Pediatric End-of-Life Care Model for Children with Cancer” offers a framework for further optimization of home-based end-of-life care services for children with cancer and their families.

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Section: Discussionsupporting

confidence: 83%

Intersectoral collaboration in home-based end-of-life pediatric cancer care: A qualitative multiple-case study integrating families’ and professionals’ experiences

et al. 2022

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“…They assumed to reestablish the normal of living by making positive changes in their routine lives. This is consistent with ndings of other studies that reported being able to adapt and accept ongoing changes were effective coping strategies (25)(26)(27).…”

Section: Cope Strategies Of Parents Whose Children Are Diagnosed With...supporting

confidence: 92%

Experience and Coping Strategies of Parents Regarding Home Care of Children After a Cancer Diagnosis in Rwanda

Musabeyesu

Ndayisenga

Niyoyita

et al. 2023

Preprint

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Background Home care for childhood cancer has recently gained acceptance in Sub-Saharan African countries including Rwanda. Home care may have positive implications for patients and their families, but it may also be burdensome to the caregivers. Little is known about the parents’ experience with home care in childhood cancer in Africa. The purpose of the study This study aimed to explore the experience and coping strategies of parents regarding home care of children diagnosed with cancer in Rwanda. Methods This study was qualitative using a phenomenological design. Ten participants (four key informant interviews and a focus group of six participants) participated who were parents of children diagnosed with cancer. Data were transcribed from audiotaped interviews, codes assigned to the content, and themes generated through thematic analysis using the Hycner version. Results The study revealed negative experiences regarding challenges, and individual coping strategies of parents regarding home care. Identified themes concerning experience were Feeling helpless, knowing that giving home care was laborious, feeling overwhelmed, feeling inadequate, and feeling uncertain. Identified themes concerning coping were Reliance on spirituality to cope, Balancing my emotions, Getting my mind off the current situation, Keeping life as normal as possible, Rebalancing life, and Finding and accepting support from family and friends. Conclusion Childhood cancer is emotionally, physically, and psychologically draining for parents. However, the challenges experienced enabled the parents to discover personal strategies to cope with the demands of home care.

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“…Parents who used the tablet experienced savings in time and effort, and they said that care activities at home were affordable (i.e., worth the time, money, and energy that they spent). The use of home-based pediatric care has previously been presented as a safe and cost-effective, whether as a complement or an alternative to hospital care [30]. Cost-effectiveness in using eHealth has been identified in other age groups of patients, such as the elderly [31].…”

Section: Discussionmentioning

confidence: 99%

Access to health care perceived by parents caring for their child at home supported by eHealth—a directed approach introducing aperture

Hylén

Nilsson

Hallström

et al. 2022

BMC Health Serv Res

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Background In recent years a variety of eHealth solutions has been introduced to enhance efficiency and to empower patients, leading to a more accessible and equitable health care system. Within pediatric care eHealth has been advocated to reduce emergency and hospital outpatient visits, with many parents preferring eHealth to physical visits following the transition from hospital to home. Still, not many studies have focused on access from the parental perspective. Therefore, the aim of the study was to analyze access to health care as perceived by parents when caring for their child at home, with conventional care supported by eHealth following pediatric surgery or preterm birth. Methods Twenty-five parents who went home with their child following hospitalization and received conventional care supported by eHealth (a tablet) were interviewed in this qualitative study. Directed content analysis was used, guided by a framework for dimensions of access previously described as: approachability, acceptability, affordability, appropriateness, and availability. Results All dimensions of access were present in the material with the dimensions of approachability, appropriateness and acceptability most frequently emphasized. The dimensions highlighted a strong acceptance of eHealth, which was perceived by the parents as beneficial, particularly access to communication with health care personnel familiar to them. The chat function of the tablet was often mentioned as positive. A new dimension was also identified: “aperture.” It is defined by the pathways by which communication is transmitted in cyberspace, and these pathways are not easily visualized for parents submitting information, therefore generating concerns. Conclusions Parents generally experienced good access to the eHealth-supported health care. Describing access through its dimensions complemented previous descriptions of eHealth in pediatric care and gave new insights. As such, the new dimension of “aperture”, the indeterminate opening of pathways of communication reflecting the uncertainty of not comprehending cyberspace, could be further evaluated. The dimensional framework of access is recommended when evaluating eHealth in the future. Trial registration ClinicalTrials.gov identifier: NCT04150120.

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The Childhood Cancer Centre Is Coming Home: Experiences of Hospital-Based Home Care

Cited by 11 publications

References 39 publications

Intersectoral collaboration in home-based end-of-life pediatric cancer care: A qualitative multiple-case study integrating families’ and professionals’ experiences

Intersectoral collaboration in home-based end-of-life pediatric cancer care: A qualitative multiple-case study integrating families’ and professionals’ experiences

Experience and Coping Strategies of Parents Regarding Home Care of Children After a Cancer Diagnosis in Rwanda

Access to health care perceived by parents caring for their child at home supported by eHealth—a directed approach introducing aperture

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