Needs Assessment in Parents of Children Affected by Cancer: A Qualitative Perspective

Nieto, Blanca Bretones; Muñoz, Carmen Pozo; López, María Ángeles Vázquez

doi:10.3390/children9121957

Cited by 4 publications

(1 citation statement)

References 45 publications

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“…Critical to the app was the inclusion of detailed child and family information to support the personalization of provided pain support. These findings contribute to a growing literature on the support requirements of parents caring for a child with cancer [34][35][36]. Based on our findings, we have created a list of app design features (Table 2).…”

Section: Discussionmentioning

confidence: 63%

Parent and clinician perceptions and recommendations on a pediatric cancer pain management app: A qualitative co-design study

Jibb,

Sivaratnam,

Hashemi

et al. 2023

PLOS Digit Health

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Pain is one of the most prevalent and burdensome pediatric cancer symptoms for young children and their families. A significant proportion of pain episodes are experienced in environments where management options are limited, including at home. Digital innovations such as apps may have positive impacts on pain outcomes for young children in these environments. Our overall aim is to co-design such an app and the objective of this study was to explore the perceptions of children’s parents about app utility, needed system features, and challenges. We recruited parents of young children with cancer and multidisciplinary pediatric oncology clinicians from two pediatric cancer care centers to participate in audio-recorded, semi-structured, co-design interviews. We conducted interviews structured around technology acceptance and family caregiving theories until data saturation was reached. Audio-recordings were then transcribed, coded, and analyzed using thematic analysis. Forty-two participants took part in the process. Participants endorsed the concept of an app as a useful, safe, and convenient way to engage caregivers in managing their young child’s pain. Overall, the app was valued as a means to provide real-time, multimodal informational and procedural pain support to parents, while also reducing the emotional burden of pain care. Recommendations for intervention design included accessibility-focused features, comprehensive symptom tracking, and embedded scientific- and clinically-sound symptom assessments and management advice. Predicted challenges to app use included the workload burden it may place on parents and clinicians. The insights gathered will inform the design principles of our future childhood cancer pain digital research.

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Section: Discussionmentioning

confidence: 63%

Parent and clinician perceptions and recommendations on a pediatric cancer pain management app: A qualitative co-design study

Jibb,

Sivaratnam,

Hashemi

et al. 2023

PLOS Digit Health

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The inter-familiar issues of Greek parents facing childhood cancer

Nizamis,

Kalliakmanis,

Koutsoupias

et al. 2023

Eur J Pediatr

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Cancer as a whole, but especially childhood cancer, creates a number of psychological, social, and family problems as well as practical and financial issues, which every parent is called upon to solve. This study focuses on childhood cancer and aims at a thorough analysis of the physical/organic, psychological, and social problems associated with the parents and relatives of a child with cancer. The special element in pediatric neoplasms is not only the vulnerable population target group, but also the set of secondary effects it has on the environment of the sick child. The research was conducted on a sample of 133 families of children with cancer, and the results were displayed after statistical processing and data analysis with R statistical software. The results of the study confirm with statistically significant data the effect of childhood cancer on the physical, mental, and social health and behavior of the parent. Thus, 53.8% of the respondents stated 5 and above on the 7-point Likert scale for fatigue issues, 55.6% for sleep disorders, 78.1% for stress, and 82.7% for fear. The key findings are characterized by high specificity as it is a unique study that reveals particular aspects of the Greek parent’s behavior, mind, and body during the period of their child’s illness. Conclusion: The effects of childhood illnesses, particularly when they are severe, such as neoplasms, present a looming threat, ushering in a multitude of adverse alterations in the daily lives of the affected child's family. What is Known – What is New:• We know the effects that a childhood illness brings not only to the sick child, but also to the entire family circle. The new element in the present research is that these data reflect the situation in Greece, for which the research data in this area is quite limited. Our research is one of the few studies that demonstrate with statistical data the change in the psychosomatic health of the parent who has a child with cancer.

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Experiences of Parents of Children with Cancer in the Diagnosis Process: A Qualitative Study

BEKAR,

ERKUL,

EFE

2024

Omega (Westport)

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This study aimed to describe the experiences of parents of children with cancer in the diagnosis process. A descriptive qualitative research design and content analysis method were used. Eleven parents participated in the study. Three main themes emerged, each with related sub-themes: encountering a cancer diagnosis, changes in the lives of those affected by the diagnosis, and coping strategies. Upon their children’s diagnosis, parents reported feelings of guilt, regret, helplessness, devastation, constant thoughts of death, and changes in their lives, with some siblings displaying negative reactions. Some children felt their freedom was restricted, and some refused treatment. Parents coped by distracting their attention, praying, receiving support from their family, relatives or health professionals, and maintaining hope for their children’s recovery. The study concludes that parents of children diagnosed with cancer require support to manage and adapt to the diagnosis process and meet their needs effectively throughout this difficult journey.

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Needs Assessment in Parents of Children Affected by Cancer: A Qualitative Perspective

Cited by 4 publications

References 45 publications

Parent and clinician perceptions and recommendations on a pediatric cancer pain management app: A qualitative co-design study

Parent and clinician perceptions and recommendations on a pediatric cancer pain management app: A qualitative co-design study

The inter-familiar issues of Greek parents facing childhood cancer

Experiences of Parents of Children with Cancer in the Diagnosis Process: A Qualitative Study

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