Affiliation:
1. School of Psychology, Faculty of Health Deakin University Burwood Victoria Australia
2. Department of Paediatrics University of Melbourne Parkville Victoria Australia
3. The Australian Centre for Behavioural Research in Diabetes Melbourne Victoria Australia
4. Institute of Health Transformation, Deakin University Burwood Victoria Australia
5. Centre for Behavioural Research in Cancer, Cancer Council Victoria Melbourne Victoria Australia
Abstract
AbstractBackground 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.
Subject
General Medicine,General Nursing
Cited by
3 articles.
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