Families’ experiences of child and adolescent brain tumor: A systematic review and synthesis of qualitative research

Young, Kate; Bowers, Alison; Bradford, Natalie

doi:10.1002/pon.5745

Cited by 13 publications

(31 citation statements)

References 70 publications

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“…Due to the amount of data generated and the relevance of findings to different stakeholders, findings relating to the individual experiences of family members and those specific to health care are published separately in Young (2021). Our review method is described in detail in Young 2021 , and summarized in Table 1 for reader’s convenience. In summary, included studies needed to use qualitative methodologies to report experiences of children or adolescents diagnosed with brain tumour, or experiences of their family caregiver or sibling.…”

Section: Methodsmentioning

confidence: 99%

I could have used a lot more help than I had: A qualitative systematic review and synthesis of families’ experiences of paediatric brain tumour and schooling

Young

Bowers

Prain³

et al. 2021

Brit J of Edu Psychol

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Background Brain tumours are the most common and fatal of all solid tumours for children and adolescents. The effects of the tumour and treatment (chemotherapy, radiation, and/or surgery) results in significant disruptions to childhood development and large amounts of missed schooling. Among other challenges for families, this produces obstacles for children and adolescents to achieve and maintain academic performance and experience positive schooling encounters. Aims We thus aimed to systematically identify and synthesize qualitative evidence on how families experience paediatric brain tumour from diagnosis and beyond with regards to their schooling and education to identify gaps in service delivery, research, and policy. Methods A protocol for this review was registered with PROSPERO (ID: CRD42020177165). Searches were conducted in Medline, CINAHL, PsycInfo, Embase, and Web of Science, and yielded 22 eligible papers (representing 17 studies). Data were extracted into NVivo12 and analysed by qualitative description. Results We formed the following domain summaries: academic (perceived failure to keep up with peers and finding success where one could, the importance of encouragement for diagnosed children), social (the importance of friendships and the harm of bullying), and support (the defining factor in overall return‐to‐school experience, often not enough received from educational professionals and clinicians). Our review highlights the need for more comprehensive, individualized, and integrated support for diagnosed children to return to educational institutions, and for the need to address their social experiences, particularly with regards to bullying, potentially through a school‐wide social and emotional learning approach. Conclusion Funding support, evidence‐based guidelines, staff skill development, and clear communication structures across families, health care facilities, schools, and educational departments are essential to achieving this.

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Section: Methodsmentioning

confidence: 99%

I could have used a lot more help than I had: A qualitative systematic review and synthesis of families’ experiences of paediatric brain tumour and schooling

Young

Bowers

Prain³

et al. 2021

Brit J of Edu Psychol

Self Cite

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“…14 This may explain why families living with a brain cancer diagnosis often report living under a constant cloud of uncertainty. 15 Although the challenges of childhood brain tumor are unique and require special attention, a critical knowledge gap exists regarding the psycho-social support needs of such families from the point of diagnosis, throughout the illness trajectory, survivorship, death, and bereavement. 15 Even less is known about the lived experiences of families who are confronted with a diagnosis of DIPG.…”

Section: Introductionmentioning

confidence: 99%

“…15 Although the challenges of childhood brain tumor are unique and require special attention, a critical knowledge gap exists regarding the psycho-social support needs of such families from the point of diagnosis, throughout the illness trajectory, survivorship, death, and bereavement. 15 Even less is known about the lived experiences of families who are confronted with a diagnosis of DIPG. Unique about DIP is that families find themselves in a situation that is grim from the start insofar they are confronted with treatment decisions that do not have the goal of cure, but only potentially prolong children's lives.…”

Section: Introductionmentioning

confidence: 99%

“…As a result of neurologic deterioration or cancer treatment, the child might lose the ability to express its needs, emotions, and desires and this loss of communication might cause anger and frustration to both parents and children 14 . This may explain why families living with a brain cancer diagnosis often report living under a constant cloud of uncertainty 15 . Although the challenges of childhood brain tumor are unique and require special attention, a critical knowledge gap exists regarding the psycho‐social support needs of such families from the point of diagnosis, throughout the illness trajectory, survivorship, death, and bereavement 15 …”

Section: Introductionmentioning

confidence: 99%

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No wrong decisions in an all‐wrong situation. A qualitative study on the lived experiences of families of children with diffuse intrinsic pontine glioma

Clercq

Grotzer

Landolt

et al. 2022

Pediatric Blood & Cancer

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Background: Diffuse intrinsic pontine glioma (DIPG) is a rare, but lethal pediatric brain tumor with a median survival of less than 1 year. Existing treatment may prolong life and control symptoms, but may cause toxicity and side effects. In order to improve child-and family-centered care, we aimed to better understand the treatment decision-making experiences of parents, as studies on this topic are currently lacking. Procedure: The data for this study came from 24 semistructured interviews with parents whose children were diagnosed with DIPG in two children's hospitals in Switzerland and died between 2000 and 2016. Analysis of the dataset was done using reflexive thematic analysis. Results: For most parents, the decision for or against treatment was relatively straightforward given the fatality of the tumor and the absence of treatment protocols. Most of them had no regrets about their decision for or against treatment. The most distressing factor for them was observing their child's gradual loss of independence and informing them about the inescapability of death. To counter this powerlessness, many parents opted for complementary or alternative medicine in order to "do something." Many parents reported psychological problems in the aftermath of their child's death and coping strategies between mothers and fathers often differed. Conclusion: The challenges of DIPG are unique and explain why parental and shared decision-making is different in DIPG compared to other cancer diagnoses. Considering that treatment decisions shape parents' grief trajectory, clinicians should reassure parents by framing treatment decisions in terms of family's deeply held values and goals.

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“…In this context, the quality of the relational bond established with the parents is a crucial factor in supporting the patients and families in dealing with the challenges, negotiations, and decision-making processes that emerge during the treatments ( Pelcovitz et al, 2017 ; Robinson et al, 2019 ). A recent systematic review of qualitative data from 33 studies exploring families’ experiences in this context documented how parents feel relieved when health care providers engage in “good” communication and show a genuine effort to provide tailored information and guidance ( Young et al, 2021 ). Similar needs are described in the systematic review completed by Nicklin et al (2019) regarding adolescent and young adult childhood brain tumor survivors and their caregivers.…”

Section: Introductionmentioning

confidence: 99%

Psychological Needs and Resources of the Staff in a Pediatric Neurosurgery Ward: A Phenomenological-Hermeneutic Study

Lanini

Tringali²,

Grotto

2022

Front. Psychol.

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Brain tumors are a common form of solid tumors in children and, unfortunately, they are characterized by a very uncertain prognosis. The treatment of this pathology often includes one or more very invasive surgical procedures, quite often in the very first steps of the treatment. Cases of brain tumors in children represent one of the greatest challenges for health care professionals in the domain of pediatric neurosurgery. This is clearly due to the complexity of the therapeutic plan, but also to the nature of the bond that is established between the child, the parents, and the members of the staff during the often-dramatic initial phase of the illness. In this phenomenological-hermeneutic study, we explore both the emotional and organizational needs, as well as the available professional and personal resources of the staff in the Neurosurgery ward of the Meyer Children’s Hospital in Florence (Italy). The ward staff, composed of 7 surgeons, a pediatric neuro-oncologist, 12 nurses, and 4 auxiliary health care professionals, underwent in-depth interviews that were recorded (with the consensus of the participants). The recordings were then transcribed and submitted to content analysis according to COREQ standards. A complex picture of emotional as well as organizational demands emerged from the data. Shared experiences were pointed out, together with more specific and idiosyncratic contents characteristic of different professional roles. The focus of the present paper was twofold, first, we considered the needs that are overtly expressed by the staff, and then we discussed the main sources of their motivational drives. We found that the latter is mainly found in the quality of the therapeutic bond that is established with the children and the family members, together with the deep interest in one’s own professional activity and the effective complementarity and integration of the personal and professional qualities of the staff members within the multidisciplinary caring group.

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Families’ experiences of child and adolescent brain tumor: A systematic review and synthesis of qualitative research

Cited by 13 publications

References 70 publications

I could have used a lot more help than I had: A qualitative systematic review and synthesis of families’ experiences of paediatric brain tumour and schooling

I could have used a lot more help than I had: A qualitative systematic review and synthesis of families’ experiences of paediatric brain tumour and schooling

No wrong decisions in an all‐wrong situation. A qualitative study on the lived experiences of families of children with diffuse intrinsic pontine glioma

Psychological Needs and Resources of the Staff in a Pediatric Neurosurgery Ward: A Phenomenological-Hermeneutic Study

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