Parents’ perceptions of the information provided to them about their child's leukaemia

Patistea, Evangelia; Babatsikou, Fotοula

doi:10.1016/s1462-3889(03)00023-1

Cited by 29 publications

(28 citation statements)

References 13 publications

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“…Figure 3 illustrates how parents' learning needs and preferences can be viewed in terms of their information needs, communication preferences, motives for wanting information and the information source. Although parents received information from HCPs about their child's condition, including its cause, treatment and prognosis [21], gaps in information provision were identified including psychosocial issues [22,23], the child's future including fertility and social development [24] and research into the condition [21].…”

Section: Narrative Synthesismentioning

confidence: 99%

“…Concerns were expressed about multi-disciplinary team (MDT) and multi-agency working, with parents experiencing poor information provision due to lack of communication within the team [38], resulting in information either not being provided at all, being duplicated [21], or information overload [28]. However, MDT working in renal services facilitated parents' learning as it provided multiple opportunities for interaction between HCPs and parents and for HCPs to feedback to the team about parents' understanding of their child's condition [34].…”

Section: Barriers To Parents' Learningmentioning

confidence: 99%

“…Where information provision was inadequate, due to lack of detail, incomprehensible explanations or being available too late [28], this could result in parents feeling anxious and confused [38]. Parents expressed concerns about the poor availability of psychosocial information [21] and information which focused on the 'disease activity' rather than the child and parents as people [25]. Hummelinck and Pollock [28] reported how some parents felt overloaded with certain types of information, yet struggled to find answers to their specific questions; this corresponds with the idea that due to scientific limitations, HCPs are not always able to answer parents' questions fully or with certainty [21].…”

Section: Barriers To Parents' Learningmentioning

confidence: 99%

“…Parents expressed concerns about the poor availability of psychosocial information [21] and information which focused on the 'disease activity' rather than the child and parents as people [25]. Hummelinck and Pollock [28] reported how some parents felt overloaded with certain types of information, yet struggled to find answers to their specific questions; this corresponds with the idea that due to scientific limitations, HCPs are not always able to answer parents' questions fully or with certainty [21]. Some parents who did have questions for HCPs, were reluctant to ask as they were fearful that it would be viewed as 'imposing' on the HCP, and felt the question was too unimportant [30] .…”

Section: Barriers To Parents' Learningmentioning

confidence: 99%

See 3 more Smart Citations

Parents’ learning needs and preferences when sharing management of their child’s long-term/chronic condition: A systematic review

Nightingale

Friedl

Swallow

2015

Patient Education and Counseling

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Objective: This review aimed to 1) identify parents' learning needs and preferences when sharing the management of their child's long-term/chronic (long-term) condition and 2) inform healthcare professional support provided to parents across the trajectory. Methods: We conducted a literature search in seven health databases from 1990-2013. The quality of included studies was assessed using a critical appraisal tool developed for reviewing the strengths and weaknesses of qualitative, quantitative and mixed methods studies. Results: Twenty-three studies met our criteria and were included in the review. Three themes emerged from synthesis of the included studies: (1) parents' learning needs and preferences (2) facilitators to parents' learning, and (3) barriers to parents' learning. Conclusion:Asking parents directly about their learning needs and preferences may be the most reliable way for healthcare professionals to ascertain how to support and promote individual parents' learning when sharing management of their child's longterm condition. Practice Implications: With the current emphasis on parent-healthcare professional shared management of childhood long-term conditions, it is recommended that professionals base their assessment of parents' learning needs and preferences on identified barriers and facilitators to parental learning. This should optimise delivery of home-based care, thereby contributing to improved clinical outcomes for the child.

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Section: Narrative Synthesismentioning

confidence: 99%

Section: Barriers To Parents' Learningmentioning

confidence: 99%

Section: Barriers To Parents' Learningmentioning

confidence: 99%

Section: Barriers To Parents' Learningmentioning

confidence: 99%

See 2 more Smart Citations

Parents’ learning needs and preferences when sharing management of their child’s long-term/chronic condition: A systematic review

Nightingale

Friedl

Swallow

2015

Patient Education and Counseling

View full text Add to dashboard Cite

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“…This might contribute to the high rates of abandonment, especially during induction . The unmet needs of parents towards information provided by health-care providers were also reported elsewhere (Patistea et al, 2003;Poder et al, 2009;Demirbag et al, 2013). Moreover, the majority of parents assumed that treatment efficacy ameliorates when more severe side-effects occur.…”

Section: Discussionmentioning

confidence: 65%

Parents' and Health-Care Providers' Perspectives on Side-Effects of Childhood Cancer Treatment in Indonesia

Gunawan¹,

Wolters²,

Dongen³

et al. 2014

Asian Pacific Journal of Cancer Prevention

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Asian Pac J Cancer Prev, 15 (8), 3593-3599 IntroductionChildhood cancer survival is lower in low-income countries (<35%) than in high-income countries (80%) (Mostert et al., 2011;Rohani-Rasaf et al., 2012). Several factors contribute to this discrepancy: death from toxicity, relapse and non-adherence. Treatment abandonment, a severe form of non-adherence and seldom seen in high-income countries, is the most prominent factor. Recently, various studies indicated that nonadherence and abandonment are not merely caused by socio-economic hardships, but also by psychological aspects and side-effects of chemotherapy (Yeh et al., 1999;De Oliveira et al., 2005;Bonilla et al., 2009;Sitaresmi et al., 2010;Wang et al., 2011).Chemotherapy-related side-effects may deteriorate the child's quality of life and hinder families' acceptance and adherence with prescribed medication (Yeh et al.,1999;

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Decision-making in childhood cancer: parents’ and adolescents’ views and perceptions

Robertson

Wakefield

Shaw

et al. 2019

Support Care Cancer

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Parents’ perceptions of the information provided to them about their child's leukaemia

Cited by 29 publications

References 13 publications

Parents’ learning needs and preferences when sharing management of their child’s long-term/chronic condition: A systematic review

Parents’ learning needs and preferences when sharing management of their child’s long-term/chronic condition: A systematic review

Parents' and Health-Care Providers' Perspectives on Side-Effects of Childhood Cancer Treatment in Indonesia

Decision-making in childhood cancer: parents’ and adolescents’ views and perceptions

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