‘Why does it happen like this?’ Consulting with users and providers prior to an evaluation of services for children with life limiting conditions and their families

Abstract

Children with life limiting conditions and their families have complex needs. Evaluations must consider their views and perspectives to ensure care is relevant, appropriate and acceptable. We consulted with children, young people, their parents and local professionals to gain a more informed picture of issues affecting them prior to preparing a bid to evaluate services in the area. Multiple methods included focus groups, face-to-face and telephone interviews and participatory activities. Recordings and products from activities were analysed for content to identify areas of relevance and concern. An overarching theme from parents was ‘Why does it happen like this?’ Services did not seem designed to meet their needs. Whilst children and young people expressed ideas related to quality of environment, services and social life, professionals focused on ways of meeting the families’ needs. The theme that linked families’ concerns with those of professionals was ‘assessing individual needs’. Two questions to be addressed by the evaluation are (1) to what extent are services designed to meet the needs of children and families and (2) to what extent are children, young people and their families consulted about what they need? Consultations with families and service providers encouraged us to continue their involvement as partners in the evaluation.

Exploring the Perceived Met and Unmet Need of Life-Limited Children, Young People and Families

“…The importance of assessing children within the context of the family has however been highlighted in the international literature (Friebert & Huff, 2009;Hunt et al, 2013). Sloper and Beresford (2006) found that, although needs were often recognised by service providers, they were often unmet.…”

“…Strand 5. To facilitate involvement of parents, carers and young people in underpinning, advising and supporting the research Ensuring that the family is at the centre of care demands that all those involved in supporting the child or young person and the family work with, and on their behalf (Hunt et al, 2013). Professional carers are likely to come from a wide range of services and each will have their preferred way of working, organisational structures, salary scales and professional development programmes (Jassal & Sims, 2006).…”

“…Professional carers are likely to come from a wide range of services and each will have their preferred way of working, organisational structures, salary scales and professional development programmes (Jassal & Sims, 2006). Thus, professionals have a pivotal role in meeting holistic family needs in order to provide a seamless service where joint working by professionals leads to better standards of care, lower levels of stress for families, improved communication and the pooling of skills and resources (Hunt et al, 2013).…”

“…This was followed in 2009 by a framework for children's palliative care in the USA by The National Hospice and Palliative Care Organization (Friebert & Huff, 2009). Rising numbers of children and young people with life-threatening and life-limiting conditions and changing expectations of healthcare staff and families have had substantial impact on care and services in the UK (Fraser et al, 2012;Goldman, Hain, & Liben, 2012;McNamaraGoodger & Feudtner, 2012).Consequently, in the UK, the national government has embarked on reforms aimed at improving and integrating health, education and social services for children and their families (Department of Health, 2008;Hunt et al, 2013).…”

Children’s unmet palliative care needs: a scoping review of parents’ perspectives

“…The scoping review identification process highlighted 48 studies which discussed the unmet needs of children with LLCs and their families from the parent’s perspective 15 27–73. The references of these 48 studies were then hand-searched by GC, identifying seven further studies meeting the inclusion criteria 74–80.…”