Psychosocial Functioning in Parents of Adult Survivors of Childhood Cancer

Hardy, Kristina K.; Bonner, Melanie J.; Masi, Rachel; Hutchinson, Katherine C.; Willard, Victoria W.; Rosoff, Philip M.

doi:10.1097/mph.0b013e31815814d9

Cited by 38 publications

(42 citation statements)

References 27 publications

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“…Leventhal-Belfer et al [35], Kazak et al [37], Kupst et al [32], Quin [36], Hardy et al [38], and Maurice-Stam et al [39] reported a group-level of psychological distress within a normal range. Greenberg et al [29] compared personal stress among mothers of CCSs and mothers of non-ill children and found no difference between groups.…”

Section: Resultsmentioning

confidence: 99%

“…Ozono et al [34] demonstrated an average group-level of PTSS, but that a subgroup, 21% of mothers and 22% of fathers, reported a severe level of PTSS [33]. Stuber et al [41] found that 40% of mothers and 33% of fathers reported a severe level of PTSS whereas Hardy et al [38] showed that 44% reported a high level of PTSS. Stuber et al [41] classified the majority of the PTSS symptoms as re-experiencing or intrusive symptoms and showed that more than 75% of mothers reported: being afraid or upset when thinking of what had happened, tension when thinking of cancer, re-experiencing disturbing scenes, intrusive thoughts of the cancer disease, distress at reminders, and fear of relapse.…”

Section: Resultsmentioning

confidence: 99%

“…In the study by Leventhal-Belfer et al [35] the majority reported fear of relapse, however only a minority reported fearing that the child would die as a result of the relapse; 17% of the mothers and 23% of the fathers mentioned this concern. Hardy et al [38] demonstrated that parents reported persistent worry about their child's health and well-being, uncertainty about their child's future, and intrusive thoughts about the cancer experience.…”

Section: Resultsmentioning

confidence: 99%

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Long-Term Positive and Negative Psychological Late Effects for Parents of Childhood Cancer Survivors: A Systematic Review

et al. 2014

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Increasing survival rates in childhood cancer have yielded a growing population of parents of childhood cancer survivors (CCSs). This systematic review compiles the literature on positive and negative long-term psychological late effects for parents of CCSs, reported at least five years after the child's diagnosis and/or two years after the end of the child's treatment. Systematic searches were made in the databases CINAHL, EMBASE, PsycINFO, and PubMed. Fifteen studies, published between 1988 and 2010, from 12 projects were included. Thirteen studies used quantitative methodology, one quantitative and qualitative methodology, and one qualitative methodology. A total of 1045 parents participated in the reviewed studies. Mean scores were within normal ranges for general psychological distress, coping, and family functioning. However, a substantial subgroup reported a clinical level of general psychological distress, and 21–44% reported a severe level of posttraumatic stress symptoms. Worry, disease-related thoughts and feelings, marital strains, as well as posttraumatic growth was reported. Several factors were associated with the long-term late effects, such as parents' maladaptive coping during earlier stages of the childs disease trajectory and children's current poor adjustment. Quality assessments of reviewed studies and clinical implications of findings are discussed and recommendations for future research are presented.

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Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

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Long-Term Positive and Negative Psychological Late Effects for Parents of Childhood Cancer Survivors: A Systematic Review

et al. 2014

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“…As Raina proposed, caregivers who perceive that their survivor has less than optimal health undergo more caregiver demands (Bandura, 1991; Hovén et al, 2011), a relationship which is also tested in this research. While used as an outcome measure in Raina’s model, caregiver health is tested in terms of its association with caregiver demands because of the long term impact of caregivers’ emotional and physical health on managing the demands of that role (Deatrick et al, 2009; Hardy et al, 2008; Raina et al, 2004). …”

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confidence: 99%

Competence in caregivers of adolescent and young adult childhood brain tumor survivors.

Deatrick¹,

Hobbie²,

Ogle³

et al. 2014

Health Psychology

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Objective Caregivers of adolescents and young adults (AYA) with complex medical conditions, including brain tumor survivors, have protracted and often complex roles, yet a gap exists in understanding their perceived competence. The aim of this study is to test a hypothesized model based on the theoretical and empirical literature: better caregiver health, better survivor health, and better family functioning contribute directly to fewer caregiving demands, which in turn contribute to greater caregiver competence. Method Telephone interviews using structured self-report questionnaires were conducted in this cross-sectional study with a sample of 186 caregivers (mothers) of childhood brain tumor survivors aged 14–40 years old who live with at least one parent. Structural equation modeling (SEM) was used to test the hypothesized model. Results The final SEM model suggests that survivor health and family functioning directly predict caregiver competence. Caregiver health indirectly predicts caregiver competence through caregiver demands and then family functioning. Family income directly predicts family functioning. The model showed adequate fit (CFI = 0.905, TFI = 0.880, and RMSEA = 0.081). Overall, the model accounted for 45% of variance in caregiver competence. Conclusions For this sample of caregivers of AYA with medically complex conditions, family functioning and the health of survivors are both important to how they evaluate their skills as caregivers. The results of this study underscore the crucial role of care models that focus on optimizing the health of the survivor, caregiver, and family, along with supporting a family centered approach to their care.

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“…(Hudson et al, 2003;Aziz et al, 2006;Goldsby et al, 2006;Maule et al, 2007;Kurt et al, 2008;Mertens et al, 2008;Oeffinger et al, 2008) There is also some evidence that childhood cancer and its treatment can have persisting negative effects on parents (Hardy et al, 2008) in relation to both finance and lifestyle (Cohn et al, 2003).…”

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confidence: 99%

Trends in incidence of childhood cancer in Australia, 1983–2006

et al. 2010

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BACKGROUND: There are few population-based childhood cancer registries in the world containing stage and treatment data. METHODS: Data from the population-based Australian Paediatric Cancer Registry were used to calculate incidence rates during the most recent 10-year period (1997 -2006) and trends in incidence between 1983 and 2006 for the 12 major diagnostic groups of the International Classification of Childhood Cancer. RESULTS: In the period 1997 -2006, there were 6184 childhood cancer (at 0 -14 years) cases in Australia (157 cases per million children). The commonest cancers were leukaemia (34%), that of the central nervous system (23%) and lymphomas (10%), with incidence the highest at 0 -4 years (223 cases per million). Trend analyses showed that incidence among boys for all cancers combined increased by 1.6% per year from 1983 to 1994 but have remained stable since. Incidence rates for girls consistently increased by 0.9% per year. Since 1983, there have been significant increases among boys and girls for leukaemia, and hepatic and germ-cell tumours, whereas for boys, incidence of neuroblastomas and malignant epithelial tumours has recently decreased. For all cancers and for both sexes combined, there was a consistent increase ( þ 0.7% per year, 1983 -2006) at age 0 -4 years, a slight nonsignificant increase at 5 -9 years, and at 10 -14 years, an initial increase (2. 7% per year, 1983 -1996) followed by a slight nonsignificant decrease. CONCLUSION: Although there is some evidence of a recent plateau in cancer incidence rates in Australia for boys and older children, interpretation is difficult without a better understanding of what underlies the changes reported.

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Psychosocial Functioning in Parents of Adult Survivors of Childhood Cancer

Abstract: Results suggest that parents who continue to accompany their adult child to clinic may remain psychologically vulnerable many years after the end of treatment, and that the impact of having a child with a life-threatening illness may not diminish even years into the child's survivorship.

Cited by 38 publications

References 27 publications

Long-Term Positive and Negative Psychological Late Effects for Parents of Childhood Cancer Survivors: A Systematic Review

Long-Term Positive and Negative Psychological Late Effects for Parents of Childhood Cancer Survivors: A Systematic Review

Competence in caregivers of adolescent and young adult childhood brain tumor survivors.

Trends in incidence of childhood cancer in Australia, 1983–2006

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