Development of a measure to evaluate paediatric end of life care in Jordan

Abstract

A child’s death is a painful experience for family members, regardless of the cause. Previous research has emphasised the need for a standardised measure to assess the quality of paediatric end of life care from carers’ perspectives to identify and address services in need of improvement. Paediatric end of life care has received little attention in the Middle East, especially Jordan, where a lack of guidelines hinders healthcare professionals from planning and delivering high quality care. Aims To adapt an existing measure of the experiences of bereaved carers of adults - Views Of Informal Carers- Evaluation of Services- Short Form (VOICES-SF) questionnaire -, undertake cross-cultural adaptation and assess the feasibility of conducting a telephone-administered survey in Jordan to evaluate the quality of end of life care provided to dying children from the perspective of bereaved carers. This exploratory mixed-methods study entailed three phases. Phase I involved identifying key elements of paediatric end of life care from three sources: literature, bereaved carers and healthcare professionals in the United Kingdom. This led to development of the English VOICES-Children (-C) questionnaire. Phase II involved Arabic translation and cross-cultural adaptation for the Jordanian context. Five experts in Jordan reviewed the Arabic prototype before cognitive testing with bereaved carers in Jordan (N=8). In phase III, the VOICES-C Arabic version was piloted through a telephone administered survey with bereaved carers (N=48) recruited from four hospitals in Jordan. The survey explored feasibility of a protocol for identification, approach and data collection, as well as quality of care. Phase I involved developing the VOICES-C questionnaire items based on three different sources. Items regarding physical, emotional, and spiritual aspects were retained from the adult version of the questionnaire, items relating to sibling support and circumstances surrounding the death were added, and response options were modified to reflect children’s services in the UK. In phase II cultural adaptation involved translation and additional modifications to individual items and response options to align with the Jordanian context and ensure Arabic language equivalence. The phase III pilot study confirmed feasibility of the protocol for identification, approach, recruitment and data collection method in order to collect bereaved carers’ experiences about end of life care for children with life-limiting conditions by telephone. Distress associated with participation was minimal and procedures to deal with distress were suitable. Findings relating to quality and experiences of care suggested that currently end of life care for children was largely satisfactory in participating sites in Jordan. Negative reports of quality of care were mainly by carers of neonates in rural hospitals concerning coordinating and continuing care whenever available resources were limited. This study represents a novel contribution to evaluating the quality of end of life care provided to dying children and their families in various hospitals and for different medical conditions in an Arabic-speaking country, Jordan. It examined and confirmed the feasibility of conducting a telephone survey as the method of administration. If the survey is applied on a regional, national, or organisational level, it has the potential to help shape policy and improve care for dying children. Future studies on the current topic in other Arab-speaking countries are recommended.

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ORCID for Alison Richardson: orcid.org/0000-0003-3127-5755

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