Developing a literature base to understand the caregiving experience of parents of children with cancer: A systematic review of factors related to parental health and well-being

Department of Pediatrics, McMaster University, 1200 Main Street West, Hamilton, ON L8N3Z5, Canada.
Supportive Care Cancer (Impact Factor: 2.36). 07/2007; 15(7):807-18. DOI: 10.1007/s00520-007-0243-x
Source: PubMed


This paper describes a literature review conducted to identify important factors that have been investigated as explanations of variability in the health and well-being of parents of children with cancer. Our purpose was to build a literature base that could be used to guide and direct future research.
Medline, Cinahl, EMBASE, PsycINFO, and Sociological Abstracts were searched from 1980 to 2005 using the keywords neoplasms; child(ren) aged 0-18 years; parent(s), caregiver(s), mother(s), or father(s). For papers that met the study inclusion criteria, sample characteristics and information about factors related to caregiver health, or the relationship between such factors, were extracted. The findings were organized according to the six main constructs that form the caregiving process and caregiver burden model: background/context variables; child characteristics; caregiver strain; self-perception; coping factors; and caregiver physical and psychological health.
Articles meeting the inclusion criteria totaled 57. We found substantial research showing that certain child characteristics (e.g., child behavior; time since diagnosis) and indicators of coping (e.g., family cohesion, social support, stress management) are related to parental psychological health. Other aspects of the caregiving process (e.g., parental self-perception, family-centered care, and physical health) have received less research attention.
Various limitations and gaps in the current literature were identified in our review. Future research to understand the complex interrelationships between factors involved in the caregiving process should examine hypotheses that are guided by a theoretical framework and tested using advanced statistical techniques.

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    • "In general, it is not the child's disability, per se, that seems to be a predictor of health and psychosocial outcomes among parents, but rather behavioural and emotional problems, care needs, family functioning and socio-economic status (Burton, Lethbridge, and Phipps 2008; Emerson 2003; Giallo and Gavidia-Payne 2006; Hastings et al. 2005; IASSID 2013; Laurvick et al. 2006, Raina et al. 2005; Stoneman 2007). Similar findings have been reported among parents of children diagnosed with cancer (Klassen et al. 2007). The literature also has indicated that mothers more frequently report negative consequences of having children with a disability as compared to fathers (Burton, Lethbridge , and Phipps 2008, Hastings et al. 2005, Olsson and Hwang 2001; Veisson 1999). "
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    ABSTRACT: This article investigates the possible consequences in self-reported health and receipt of sickness benefits when parenting a child with a disability This study uses data from the population health study, The Nord-Trøndelag Health Study (HUNT 2), and the historical event database, FD-Trygd, which contains Social Security and national insurance data for the Norwegian population. In the analysis, we compare 1587 parents of a child with a disability to other parents. Results indicate that parenting a disabled child impacts on self-reported health, particularly among mothers; however, being a parent to a disabled child has a much stronger effect in explaining the variance in received sickness benefits, and also length of time and frequency of having received sickness benefits. Parents with disabled children report just slightly lower self-reported health but are on sickness benefits more often than other parents which may be attributed to their extended care responsibilities.
    Full-text · Article · Jul 2015 · Scandinavian Journal of Disability Research
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    • "Family cohesion reduces stresses from social isolation and stigmatization that often accompanies cancer, creating a feeling of comfort and allowing patients to focus on coping with their illness. Patients' coping abilities are boosted by and continue to develop in a cohesive family environment (Alston & McCowan, 1995; Bloom 1982; Klassen et al., 2007). The second characteristic, family expressiveness, is described as an open, direct, and pervasive style of verbal and nonverbal expression in the family. "
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    ABSTRACT: Despite the importance of family environment and computer-mediated social support (CMSS) for women with breast cancer, little is known about the interplay of these sources of care and assistance on patients' coping strategies. To understand this relation, the authors examined the effect of family environment as a predictor of the use of CMSS groups as well as a moderator of the relation between group participation and forms of coping. Data were collected from 111 patients in CMSS groups in the Comprehensive Health Enhancement Support System "Living with Breast Cancer" intervention. Results indicate that family environment plays a crucial role in (a) predicting breast cancer patient's participation in CMSS groups and (b) moderating the effects of use of CMSS groups on breast cancer patients' coping strategies such as problem-focused coping and emotion-focused coping.
    Full-text · Article · Feb 2014 · Journal of Health Communication
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    • "Stressors differ in degrees of predictability and impact, and they may persist and remit for varying lengths of time. Caregivers may experience adverse psychosocial outcomes related to fear of their child's death, anxieties associated with a lengthy treatment process, financial burdens , and less time spent with their partner or other children (Klassen et al., 2007, p. 808). Childhood illnesses demonstrated to negatively impact family functioning include childhood cancer (Barakat et al., 1997; Long & Marsland, 2010), diabetes (Streisand, Mackey, & Herge, 2010), juvenile rheumatoid arthritis (Gerhardt et al., 2003), sickle cell disease (Treadwell, Alkon, Quirolo, & Boyce, 2010), traumatic brain injury (Stancin, Wade, Walz, Yeates, & Taylor, 2008), epilepsy (Modi, 2009), cerebral palsy (Raina et al., 2005), chronic pain (Palermo & Eccleston, 2009), and cystic fibrosis (Herzer et al., 2010; also see Barlow & Ellard, 2006). "
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    ABSTRACT: Chronic childhood illnesses have been demonstrated to negatively impact family functioning by introducing new or additive stress on all members of the family system, as well as by increasing financial burden and social isolation. Although these factors have not necessarily been shown to have a direct causal effect on increased rates of abuse in children with chronic illnesses, these children have nonetheless been demonstrated to be at greater risk for neglect and physical and sexual abuse. Children with chronic health care needs are increasingly likely to be referred for neuropsychological evaluation. Thorough assessment of maltreatment would be a valuable addition to all neuropsychological evaluations of children presenting with chronic health conditions.
    Full-text · Article · Jan 2014
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