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

Abstract

BackgroundChildren with life-limiting conditions often have complex needs, making it challenging for services to provide satisfactory care. Few studies consider whether services actually meet families’ needs by exploring and identifying the parents’ perspectives of unmet needs.AimTo identify what published evidence is available on the unmet needs of children with life-limiting conditions and their families, from the perspective of parents, internationally.Eligibility criteriaInclusion criteria: papers from the perspective of parents of children aged 0–19 years, who have a life-limiting condition and are receiving palliative care. Exclusion criteria: those papers not written in English, not reporting primary research and discussing children who died from stillbirth, accidental or unexpected circumstance.Charting methodsA scoping review was conducted in accordance with the methods of Arksey and O’Malley.Sources of evidenceThe electronic databases PubMed, MEDLINE, CINAHL and PsycINFO were searched. Key terms included: parent, needs, met/unmet/satisfaction, palliative/supportive/end of life care, life-limiting/life-threatening illness, infants/children/young people.ResultsTotal hit indicated 5975 papers for screening. Fifty-five papers met the scoping review criteria. The majority used mixed-methods approaches inclusive of: questionnaires, self-report measures, in-depth interviews, focus groups, case record analysis and art-based workshops. Unmet needs included: respite care, coordination and organisation of care, psychological support and professional communication skills.ConclusionsThe findings suggest many unmet needs from the parent’s perspective, across several aspects of the Quality Standards and Children’s Palliative Care Frameworks. Further research is needed which explores the parent’s unmet needs in palliative care services.

Bereaved parents’ perspectives on their child’s end-of-life care: connecting a self-report questionnaire and interview data from the nationwide Paediatric End-of-LIfe CAre Needs in Switzerland (PELICAN) study

“…During such a shattering crisis, needs-driven, family-centred and compassionate professional care is crucial, as negative experiences during this extremely vulnerable time can haunt parents for many years after the death of their child [ 1 ]. Parental needs during their child’s palliative care and/or EOL phase have been investigated extensively [ 2 , 3 ] and several themes of met and unmet needs emerge consistently: a sincere relationship as well as emotional, spiritual and cultural support; genuine communication; decision making; alleviation of suffering; accessibility, continuity and coordination of care; respite care; bereavement support; support for siblings; and overarching quality of care [ 2 , 3 ]. Themes such as professional communications skills and coordination of care and respite care are commonly described as unmet [ 2 ] and negatively experienced by affected parents [ 4 ].…”

“…Gill et al's scoping review revealed that across the 44 studies included, six articles reported using seven different instruments, only two of which were developed for the field of paediatric palliative care (PPC) [ 3 ]. This lack of appropriate systematic inquiry might be a reason why the healthcare system partially fails to acknowledge the various specific needs of dying children and their families [ 2 , 3 ]. Thus, further efforts should be made to understand the circumstances leading to impaired quality of care.…”

Development of a managed clinical network for children’s palliative care – a qualitative evaluation

“…As a result, provision may be "good in some areas, [but] in others it is generally unclear who is providing what (if anything), and to whom, thus leading to substantial unmet needs" [5]. Evidence consistently shows this inequality [3,5,9,10], with patchy geographical distribution of provision [3,11], differing structures, services and models of care among providers [5,12,13], and a lack of collaboration and coordination between these organisations [3,5,12]. Establishing managed clinical networks (MCNs) [14] for children's palliative care has been proposed to address these issues [15], and to ensure specialist palliative care is available to those who need it [16,17].…”

Patient-reported outcome measures in pediatric palliative care—a protocol for a scoping review

“…Although adult palliative care and PPC share the overall aim of quality of life [ 8 ], PPC differs from adult palliative care as children move through different development stages while receiving care; they have different communication needs and a stronger dependency on their families [ 9 ]. Children often receive treatment that is more aggressive, and they are more frequently hospitalized compared to adults [ 10 , 11 ].…”