Unmet supportive care needs of families of children with chronic illness: A systematic review

Abstract

Background and AimsUnmet supportive care needs (SCN) refer to perceived gaps in the support parents want to manage caregiving activities for children with chronic health conditions (CHC) and the support received. This review aims to systematically identify the unmet SCN of families with children living with five common paediatric CHC and characterise the assessment tools used to measure SCN.DesignSystematic review methodology with narrative synthesis of data. Reporting followed the PRISMA statement guidelines.MethodLiterature searches were conducted in electronic databases Medline complete, PsycINFO, CINHAL and EMBASE to retrieve relevant articles published between 1990 and July 2022. Eligible studies involved (i) children aged 0–18 years diagnosed with either of cancer, congenital heart disease (CHD), diabetes, asthma, renal disease and (ii) assessment of unmet SCN. Studies involving children with genetic or developmental conditions were excluded. The methodological quality of studies was assessed using JBI assessment tool.ResultsOf 6223 articles screened, 34 papers were included (25 quantitative, 5 qualitative and 4 mixed design). Most papers explored unmet needs of families with cancer (n = 26). The remaining articles concerned CHD (n = 5), asthma (n = 2) and mixed CHC (n = 1, renal failure, and diabetes). Information (e.g. treatment, lifestyle, etc.) and health care (e.g. emotional support, practical services, etc.) were the most common unmet need domains across health conditions. A variety of methods and need assessments hampered comparisons between studies both across and within CHC.ConclusionIrrespective of illness, addressing unmet informational or health care needs may help to optimise outcomes and care for children and families living with common CHC. There was considerable variation in reporting styles, study design and need assessments both within and across conditions.Relevance to Clinical PracticeHealth care professionals must routinely evaluate the type, quality and quantity of psychoeducation and support that families of children with CHC want and receive. Providing nurses with more effective strategies to assess child and family needs across a broad range of domains may help to increase understanding of where further support for families is required.Patient or Public ContributionThere was no patient or public contribution to this study as it involved a systematic review of existing literature.

Prediction of family‐centered care on the unmet care needs of parents of pediatric oncology patients and their psychosocial problems

“…These duties are often shouldered without prior training, adequate knowledge, or sufficient support systems. Pediatric nurses play a pivotal role in caring for children with cancer, frequently assuming the role of information providers and sources of support for both the child and their parents 50 . In the context of our study, we identified a significant negative correlation between the fulfillment of parents' needs and their stress levels.…”

Psychological Distress Among Parents of Children With Chronic Health Conditions and Its Association With Unmet Supportive Care Needs and Children’s Quality of Life

“…Few studies to date have explored unmet needs in families of children with various CHCs ( Thomas et al, 2023 ). Moreover, few studies have examined links between unmet needs and parental distress in this population, with most work in this area to date focusing on parents of children with cancer ( Aziza et al, 2019 ; Wang et al, 2022 ).…”

Caregiver Experiences and Needs in Paediatric Rheumatic Disease: A Mixed-Methods Systematic Review Protocol

“…On the other hand, the term "needs" refers to the speci c requirements of parents in terms of information. This includes the type, content, subject matter, quantity, frequency, and mode of delivery of information that parents either require or desire to effectively support and manage their children's health conditions (19,23).…”

“…Furthermore, the qualitative nature of the included studies introduces inherent limitations related to objectivity and comprehensiveness (6,17). A systematic analysis has underscored that family carers' supportive care requirements remain unmet, particularly in terms of access to critical information (e.g., treatment options, lifestyle recommendations) and health care services (e.g., emotional support, experiences with health care services) (19). Addressing these unmet needs is imperative to ensure the holistic well-being of both young patients and their families.…”