Weaving the seamless web of care: an analysis of parents’ perceptions of their needs following discharge of their child from hospital

Abstract

Changes in children's nursing services in the United Kingdom in recent years have focused on the need for adequate and efficient services to be provided in the interests of the child. Early discharge is now the norm and children are often sent home in an earlier recovery stage than adults with comparable conditions. Whilst the contributions of paediatric community nursing services have gone some way to providing specialist nursing care for children and their families in their own homes, the majority of children are discharged home without such support being available. This may place an overwhelming responsibility of caring for a recovering child onto parents. The purpose of the qualitative research reported in this paper was to identify any gaps in nursing services for acutely sick children and their families following discharge, and to suggest ways to improve integration and communication between hospital and primary care to facilitate a 'seamless web of care' for families. Families were surveyed following discharge (n=164) and interviews carried out with those experiencing problems (n=20). General practitioners were also surveyed for their opinion as key contributors of primary care. Findings revealed the isolation felt by parents following discharge, with their need for information about a child's illness and expected recovery, and for reassurance and specific advice through some means of support, which was clearly not being met. The perceived benefit of continuity of care was a common theme, with both parents and professionals acknowledging the importance of closer liaison between hospital and primary health care services. This study is valuable in providing preliminary qualitative information regarding the gaps in children's nursing services and how these can be overcome by using our present resources more imaginatively, in order to ensure the delivery of cost-effective and quality health care services in the best interests of local need.

O processo de recuperação da criança após a alta hospitalar: revisão integrativa

“…Some studies investigated the level of anxiety for parents, especially the mother, and verified that it is higher just after hospital admission (13,18) . Parents who had to follow up on children's recovery after hospital discharge mentioned the feeling of isolation (19) . Some mothers reported having less health after their child had been discharged from hospital in comparison to the period prior to admission (13)(14) .…”

“…Parents affirmed they would like the team to have more time to guide them after hospital discharge (19) , and complained saying orientations were too generalized (2) . Nonetheless, they demonstrated to be calmer after perceiving that information received after the discharge corresponded to what they were experiencing at home, regarding their child's health recovery (24) .…”

“…Researches identified that the family budget was another aspect related to families' dynamics, once expenses increase due to transportation and medication (14)(15)(16)(17)(18)(19)(20)(21) costs, and parents miss days at work, especially mothers (14) .…”

“…Information requested was related to the disease cause and progress, what they should expect during the recovery time, and how they should care for the child at home (2,5,13,19,24) . Orientations concerning nutrition, behavior, going back to school, symptom re-occurrence prevention, and use of the medication prescribed were other mentioned themes (19) .…”

“…Factors that influenced children's and families' manifestations are related to the number, time, and cause of hospital admissions, to the quantity of invasive procedures performed during hospital admissions, children's age and gender (15)(16)(17)(18)(19)(20) . With regard to parents, studies aimed to find correlations between how serious the disease was, how long children were admitted for, and how long they would have to stay at home after hospital discharge.…”