Looking back: Identifying supportive care and unmet needs of parents of children receiving specialist paediatric palliative care from the bereavement perspective

Title

Looking back: Identifying supportive care and unmet needs of parents of children receiving specialist paediatric palliative care from the bereavement perspective

Creator

Bronsema A; Theißen T; Oechsle K; Wikert J; Escherich G; Rutkowski S; Bokemeyer C; Ullrich A

Publisher

BMC Palliative Care

Date

2022

Subject

Children; Humans; Parents/psychology; Parents; Child; Cancer; Palliative Care/psychology; Palliative care; Grief; Bereavement; Supportive care needs; Neoplasms/psychology; Fin-ped ii; Support services

Description

BACKGROUND: This study examined care needs and utilisation of psychosocial support services among parents of children who had received specialist paediatric palliative care, as well as the relationship between need fulfilment and grief. Possible differences between parents of children who died of cancer versus a non-cancer disease were explored. METHODS: This exploratory study, conducted in two specialist paediatric palliative care facilities, included parents who had lost a child within a period of 0.5 to 8 years before this investigation. From the bereavement perspective, parents reported their needs during paediatric palliative care using the Family Inventory of Needs - Peadiatric II (FIN-PED II). Utilisation of psychosocial support services during paediatric palliative care and after the child's death, as well as potential barriers to accessing services were assessed. Grief symptoms were measured using the Inventory of Complicated Grief - German Version (ICG-D). RESULTS: Overall, 56 of 157 approached parents participated in the study. Mean time interval after the child's death was 3.2 years. Of the 17 FIN-PED II needs, 13 needs were reported to be very/extremely important to more than 75% of the parents each. Highest ranked needs related to asking questions at any time (100%), sincere care for the child (100%), and information about changes in the child's condition (98%). The highest ranked unmet needs related to hope (61%), interactions with siblings (41-42%), and trust in the health care system (39%). Comparisons showed no significant differences between parents whose child died of cancer (n = 18) versus a non-cancer disease (n = 38). During paediatric palliative care, 61% of the parents had accessed at least one psychosocial support service and 84% had done so after the child's death. The most prominent barriers for accessing services were sufficient informal support (38%), no subjective need (23%), and lack of time (20%). Overall, 52% of the parents showed noticeable symptoms for complicated grief (ICG-D > 25). A higher level of grief symptoms significantly correlated with a lower fulfilment of the need to say goodbye to the child (p = .042) with a medium correlational effect. CONCLUSIONS: Our findings may help to guide health care professionals in their assessment of parental needs and provision of support to parents during paediatric palliative care.

Rights

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).

Citation List Month

August 2022 List

Collection

Citation

Bronsema A; Theißen T; Oechsle K; Wikert J; Escherich G; Rutkowski S; Bokemeyer C; Ullrich A, “Looking back: Identifying supportive care and unmet needs of parents of children receiving specialist paediatric palliative care from the bereavement perspective,” Pediatric Palliative Care Library, accessed November 28, 2022, https://pedpalascnetlibrary.omeka.net/items/show/18166.

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