Experiences of parents of childhood cancer survivors: a qualitative analysis

Dongen-Melman, J. E. W. M. Van; Zuuren, F.J. van; Verhulst, Frank C.

doi:10.1016/s0738-3991(98)00031-7

Cited by 71 publications

(109 citation statements)

References 21 publications

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“…However, such reactions may also reflect the influence of present stressors (Lindahl Norberg et al, 2005;Phipps, Long, Hudson, & Rai, 2005) although current parental stressors after a child's cancer have rarely been systematically surveyed. Initial feelings of euphoria when the child has been discharged from treatment soon fade, as an awareness of the threat of relapse becomes marked (Quin, 2004;Van Dongen-Melman, Van Zuuren, & Verhulst, 1998). This stressor, known by Koocher's and O'Malley's (1981) now classical expression The Damocles Syndrome, is usually the only ongoing cancer-related stressor cited in studies involving parents after a child's cancer treatment.…”

Section: Introductionmentioning

confidence: 99%

Burnout in Mothers and Fathers of Children Surviving Brain Tumour

Norberg

2007

J Clin Psychol Med Settings

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The aim of this paper was to investigate the occurrence of burnout among parents of brain tumour survivors. Burnout was assessed in 24 mothers and 20 fathers of childhood brain tumour survivors, using the Shirom-Melamed Burnout Questionnaire. Parents of children with no history of chronic or serious diseases served as a reference group. Mothers' burnout scores were significantly higher compared with reference mothers. For fathers, no relation between burnout and being a parent of a brain tumour survivor was established, despite a nonsignificant tendency in the same direction as for the mothers. In conclusion, the parenting burden after a child's brain tumour may include chronic strain, and this may be particularly taxing for mothers. The findings encourage further studies of psychological exhaustion among parents of children with special needs.

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Section: Introductionmentioning

confidence: 99%

Burnout in Mothers and Fathers of Children Surviving Brain Tumour

Norberg

2007

J Clin Psychol Med Settings

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“…Parents were the ones who struggled with intense trauma, distress and anxiety. 24 Being able to care for one's child is known to help parents of children with cancer to cope, and supporting parental coping is a recognised strategy which, in turn, is strengthening for their children. 23,24,25 Parents' emotional distress was frequently reported as overwhelming 25 and was caused by the burden of lifestyle cost, 26 maintaining family life, financial pressures, travelling away from home to childhood oncology treatment centres, separation from other children and a sense of powerlessness to protect one's child.…”

Section: Discussionmentioning

confidence: 99%

“…24 Being able to care for one's child is known to help parents of children with cancer to cope, and supporting parental coping is a recognised strategy which, in turn, is strengthening for their children. 23,24,25 Parents' emotional distress was frequently reported as overwhelming 25 and was caused by the burden of lifestyle cost, 26 maintaining family life, financial pressures, travelling away from home to childhood oncology treatment centres, separation from other children and a sense of powerlessness to protect one's child. For adolescents and teenagers, the emotional struggle of being separated from friends, awareness of the risk of death 25,27 and missing important childhood experiences 28,29 requires targeted interventions given the special emotional needs of this age group.…”

Section: Discussionmentioning

confidence: 99%

A descriptive qualitative study of childhood cancer challenges in South Africa: Thematic analysis of 68 photovoice contributions

Edwards

Greeff²

2017

S. Afr. j. oncol.

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Background: Many childhood cancers are treatable with cure rates between 70% and 80% in well-resourced countries, while approximately 80% of African children with cancer die without access to adequate care. South Africa has an established oncology health care service with overburdened infrastructure, low cancer awareness in the primary health care service and widespread service delivery challenges. Aim: The aim of this study was to explore, document and analyse the subjective experience of childhood cancer-related challenges in South Africa, and to make the results available to stakeholders. Setting: A total of 58 patient-participants (childhood cancer patients, parents and guardians of children with cancer) and 10 paediatric oncology workers (oncology social workers, oncology nurses and interim home carers) were selected from tertiary oncology centres and from the Childhood Cancer Foundation of South Africa (CHOC) interim care homes across South Africa. Method: Participants were selected via convenience sampling and qualitative data were derived from face-to-face photovoice interviews conducted by psychologists and social workers and supported by translators when necessary. Results: Nine themes of cancer challenges were identified via thematic content analysis of the photo-narratives, that is, physical and treatment challenges, emotional, poor services, transport, finances, information, powerlessness, stigma and schooling challenges. Conclusion: Lack of awareness and knowledge about cancer at the African traditional healer, primary and regional health care service levels were frequent challenges. Important feedback included lack of patient-centred care, separation of children with cancer from guardians, diagnostic delays, permanent disabilities for children because of cancer, emotional trauma, special needs of teenagers and a lack of community and palliative care support.

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“…Past literature has shown that support persons (primarily parents) of individuals who had pediatric cancer mainly experienced mental or emotional effects. [2,[11][12][13][14] However, all of this literature addresses parents or caregivers that were present during the cancer experiences, and not persons that survivors may rely on in their current lives.…”

Section: Discussionmentioning

confidence: 99%

“…These contentions are supported by the findings presented by Wijnber-Williams et al, [12] who found that even after treatment, parents of pediatric cancer survivors still experienced clinical levels of stress in their day-to-day lives regarding their children, although levels were lower than the time of cancer treatment. Similarly, Van Dongen-Melman et al [13] reported that parents of children who had pediatric cancer have difficulty returning to a state of mental normalcy, meaning, they no longer feel completely relaxed, and question their abilities to cope should another traumatic event affect their lives.…”

Section: Discussionmentioning

confidence: 99%

“As long as you need me I’m yours.” Caregiving for a pediatric cancer survivor

Molinaro

Fletcher

2016

Clinical Nursing Studies

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A pediatric cancer diagnosis is devastating -to children, as well as their families. Children experience a variety of negative effects, whether physical, cognitive, and/or emotional, and often face continued or newly developed effects l past remission termed late effects. However, it is imperative to note that support persons, or caregivers of survivors of pediatric cancer, are also affected by their caregiver roles as they help their survivors cope with their late effects. This study aimed to understand how caring for pediatric cancer survivors influences facets of caregivers lives. Nine primary support persons of pediatric cancer survivors (as chosen by the survivors they care for) participated in one-on-one, semi-structured interviews, in which they discussed their roles in caring for a pediatric cancer survivor, and how being a support person has affected their lives. A total of four themes emerged from the research, but for the purposes of this paper only the theme "As long as you need me I'm yours" will be discussed. From this theme, two subthemes emerged: (1) "Do their effects affect me?" and (2) "You realize what's important and it sticks with you." Support persons experienced negative emotional and cognitive effects, such as worrying or feelings of anxiety for their survivors, but also admitted to finding silver linings in their experiences. As well, caregivers expressed that they have developed stronger relationships with their survivors and family, in addition to developing newly optimistic outlooks on life. This work provides valuable information for policy makers and health care professionals to ensure that adequate supports and resources are available to caregivers for the multifaceted needs they may have in supporting pediatric cancer survivors.

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Experiences of parents of childhood cancer survivors: a qualitative analysis

Cited by 71 publications

References 21 publications

Burnout in Mothers and Fathers of Children Surviving Brain Tumour

Burnout in Mothers and Fathers of Children Surviving Brain Tumour

A descriptive qualitative study of childhood cancer challenges in South Africa: Thematic analysis of 68 photovoice contributions

“As long as you need me I’m yours.” Caregiving for a pediatric cancer survivor

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