Parents' accounts of obtaining a diagnosis of childhood cancer

Dixon‐Woods, Mary; Findlay, Michelle; Young, Bridget; Cox, Helen C.; Heney, David

doi:10.1016/s0140-6736(00)04130-1

Cited by 153 publications

(138 citation statements)

References 13 publications

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“…They come to know more than medical staff about this rare disease and have to advocate on their child's behalf. 22 Finally, as in other conditions, families emphasize the need for coordinated services perhaps led by a key worker with overall picture of the child's needs and services involved. 25 Parents also talked about the need for respite care.…”

Section: Discussionmentioning

confidence: 99%

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The personal experience of parenting a child with Juvenile Huntington’s Disease: perceptions across Europe

et al. 2013

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The study reported here presents a detailed description of what it is like to parent a child with juvenile Huntington's disease in families across four European countries. Its primary aim was to develop and extend findings from a previous UK study. The study recruited parents from four European countries: Holland, Italy, Poland and Sweden,. A secondary aim was to see the extent to which the findings from the UK study were repeated across Europe and the degree of commonality or divergence across the different countries. Fourteen parents who were the primary caregiver took part in a semistructured interview. These were analyzed using an established qualitative methodology, interpretative phenomenological analysis. Five analytic themes were derived from the analysis: the early signs of something wrong; parental understanding of juvenile Huntington's disease; living with the disease; other people's knowledge and understanding; and need for support. These are discussed in light of the considerable convergence between the experiences of families in the United Kingdom and elsewhere in Europe.

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Section: Discussionmentioning

confidence: 99%

“…Parents are often the first to be aware of signs and symptoms in the child including changes in behavior before a diagnosis is achieved, 22 suggesting that delays in diagnosis of rare conditions can be minimized where doctors acknowledge parents' unique insights into their child's behavior.…”

Section: Discussionmentioning

confidence: 99%

The personal experience of parenting a child with Juvenile Huntington’s Disease: perceptions across Europe

et al. 2013

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“…Another aspect to be taken into account regards the ethics of the professionals involved in This issue has also been evidenced in another study that emphasizes the importance of this period, especially for the parents of the children who have died (7) .…”

Section: Because You Know That It's Difficult To Get In Here There Amentioning

confidence: 95%

Cancer in children: the diagnostic itinerary

Cavicchioli

Menossi

Lima

2007

Rev. Latino-Am. Enfermagem

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“…On one side, it is seen as a group which adds to the care for the sick child, and on the other as an obstacle in measuring the correct diagnosis (Dixon-Woods, Findlay, Young, Cox, & Heney, 2001;Holm, Patterson, & Gurney, 2003).…”

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confidence: 99%

“…There are experiences reports in which the medical knowledge seems to interpolate the common knowledge of the parents regarding the general health of their children, and there are parental reports of indifference, incompetence, delays, lack of action and failure of the physicians to seriously consider their concerns (Dixon-Woods et al, 2001). Furthermore, they emphasize the reports of parental perception regarding the lack of clarifi cation from the healthcare team about waiting time, remedies and treatment, as well as their effects.…”

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confidence: 99%

Childhood Cancer: Meanings Attributed to the Disease by Parent Caregivers

Quintana

Wottrich

Camargo

et al. 2013

Paidéia (Ribeirão Preto)

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This study aimed to comprehend the meanings that parents/caregivers of children and adolescents diagnosed with cancer attribute to their child’s disease. It is a qualitative, exploratory/descriptive study. Data were collected through group discussions and individual interviews with the parents/caregivers of children/adolescents and categorized using content analysis. The impressions of the researchers were recorded in a field diary, contributing to the data analysis. The results indicate that the disease and treatment involve periods of psychological suffering that affect the family structure. Cancer was reported as a real enemy to be fought through coping or avoidance, which generates expectations about the future and causes feelings of fear, as well as hope. It was concluded that the childhood cancer causes repercussions in the family relationships, the recognition of which can contribute to both the preparation of professional teams who work with this population, as well as the public health policies developed.

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Parents' accounts of obtaining a diagnosis of childhood cancer

Cited by 153 publications

References 13 publications

The personal experience of parenting a child with Juvenile Huntington’s Disease: perceptions across Europe

The personal experience of parenting a child with Juvenile Huntington’s Disease: perceptions across Europe

Cancer in children: the diagnostic itinerary

Childhood Cancer: Meanings Attributed to the Disease by Parent Caregivers

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