Inception of a pediatric cancer caregiver support group guided by parental needs

Rao, Vasudha N; Rajeshwari, Rajeshwari Anantharaman; Rajagopal, Revathi; Normen, Michelle

doi:10.1002/cnr2.1469

Cited by 12 publications

(20 citation statements)

References 28 publications

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“…Thirteen studies reported unmet needs at an item level (See Table 3) [ n = 11 Cancer (Arabiat & Altamimi, 2013; Ellis & Leventhal, 1993; Levine et al, 2019; Lewandowska, 2022; Lewandowska et al, 2021; Ljungman et al, 2003; Mayer et al, 2009; Mitchell et al, 2006; Moody et al, 2011; Rao et al, 2022; Sloper, 1996); n = 2 CHD (Lesch et al, 2014; Schneider et al, 2020)] with three assessing only unmet informational needs (Ellis & Leventhal, 1993; Lesch et al, 2014; Levine et al, 2019). All studies used a cross sectional design with children at various stages of treatment/post‐treatment.…”

Section: Resultsmentioning

confidence: 99%

“…Six studies assessed parent-reported needs only, two reported the child's perspective only (Lesch et al, 2014;Lewandowska et al, 2021) and five studies assessed both parent and child needs (Ellis & Leventhal, 1993;Levine et al, 2019;Ljungman et al, 2003;Mitchell et al, 2006;Schneider et al, 2020; See Table 3). Six studies (Lewandowska, 2022;Lewandowska et al, 2021;Ljungman et al, 2003;Mitchell et al, 2006;Rao et al, 2022;Schneider et al, 2020) need assessment tools varied across studies, with three using a standardised scale (Arabiat & Altamimi, 2013;Moody et al, 2011;Schneider et al, 2020). The majority of studies reported the proportion of respondents endorsing each need item, whereas one study reported means for each need item.…”

Section: Studies Reporting Unmet Needs By Itemsmentioning

confidence: 99%

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

Thomas

Ryan

Byrne

et al. 2023

Journal of Clinical Nursing

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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.

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Section: Resultsmentioning

confidence: 99%

Section: Studies Reporting Unmet Needs By Itemsmentioning

confidence: 99%

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

Thomas

Ryan

Byrne

et al. 2023

Journal of Clinical Nursing

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“…We acknowledge that patient and parent support group networks would help identify unmet needs, smoothen patient journeys, and significantly inform future cancer care policies. 16 We understand that positive consumer perception is critical to a health system's performance and have advocated involving families in formulating policy right from the beginning. While community engagement is fundamental to healthcare success, earning their trust and loyalty is the collective responsibility of both public and private healthcare stakeholders.…”

Section: Current Perspectivesmentioning

confidence: 99%

Building a Foundation for the Care of Children with Cancer in Rural North India

Nagabushan

Rao

Ganta³

et al. 2022

Indian J Med Paediatr Oncol

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One of India's biggest challenges is to improve its global standing by increasing healthcare access and outcomes for children with cancer, with inferior overall survivorship compared with its Western counterparts. In conjunction with the government's efforts, private enterprise is crucial in delivering optimal cancer care consistently to its vast and diverse pediatric population, despite existing limitations. This article describes the successful implementation of a value-based, collaborative clinical and research framework by a philanthropic foundation in a rural Northern Indian city to establish and run a local childhood cancer service. It is proof of concept that substantial change could be brought about at grass roots level through resourceful partnerships and reduce prevailing imbalance in pediatric oncology service provision.

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“…Yet, these monumental strides and historical accolades that address significant gaps and inequalities, implement novel solutions, and memorialize the precious lives lost, rarely appear in the academic journals. This special issue of “Patient‐led Research and Advocacy Efforts,” contains 12 articles 1 , 2 , 3 , 4 , 5 , 6 , 7 , 8 , 9 , 10 , 11 , 12 by patient advocacy groups, parent and survivor organizations from Australia, Chile, Ecuador, India, New Zealand, and the United Kingdom. These articles showcase perspectives, methods, and empirical evidence for notable changes when strong partnerships are built across the cancer treatment trajectory beginning with diagnosis.…”

Section: Figurementioning

confidence: 99%

“…As a child undergoes cancer treatment, their families will face a wide variety of needs. In order to create a support group in India, Rao et al11 conducted a survey to identify the unmet needs of parents of children with cancer. Unmet needs were reported in relation to emotional concerns, informational needs, and treatment side effects.…”

mentioning

confidence: 99%