Trajectories of income and social benefits for mothers and fathers of children with cancer: A national cohort study in Sweden.

BACKGROUND: The contribution of different income sources from work and social benefits to trajectories of income for the parents of children with cancer has not been empirically investigated. METHODS: Using Swedish registers, parents of children with an incidence cancer diagnosis between 2004 and 2009 were identified and matched with parents of children without cancer (reference parents). A total of 20,091 families were followed from the year before the diagnosis to a maximum of 8 years. Generalized linear models estimated the ratios of mean incomes from work and social benefits and of its total. RESULTS: Around the time of the child's cancer diagnosis, the total income was on average up to 6% higher among the mothers of children with cancer compared with reference mothers, but no differences were noted among fathers. Income from work dropped to the lowest level around the time of a cancer diagnosis, with swift recovery noted for fathers but not for mothers. Sickness and childcare-related benefits were up to 6 times larger for the parents of children with cancer than reference parents. As social benefits diminished after approximately 3 years, the total income of mothers of children with cancer became lower than that of reference mothers, and the gap widened over time. CONCLUSIONS: Social benefits appeared to ease the financial burden during the years around a cancer diagnosis. However, mothers experienced persistently lower income after benefits diminished. Experiences differed by single-parent versus dual-parent households, the survival of the child with cancer, and other relevant characteristics. Further investigation is needed for potential long-term consequences for mothers, including their career and future pension in retirement. Cancer 2018;124:1492-500. © 2018 American Cancer Society.

Short-term and long-term effects of childhood cancer on income from employment and employment status: A national cohort study in Sweden.

BACKGROUND: There is insufficient knowledge regarding the economic impact of childhood cancer on parents. The objectives of the current study were to investigate the short-term and long-term effects of childhood cancer on mothers' and fathers' income from employment and employment status. METHODS: The study sample consisted of the parents of children diagnosed with cancer from 2004 to 2009 in Sweden (3626 parents of 1899 children). Annual register data concerning income from employment and employment status (employed/not employed) were retrieved from the Longitudinal Integration Database for Health Insurance and Labor Market Studies. Using generalized linear models, the mean income from employment and employment status were compared with a matched control cohort of 34,874 parents sampled from the general population. RESULTS: Parents' income was found to decrease significantly after the child's cancer diagnosis. The effect was most pronounced for mothers, whose income was reduced for 6 years after diagnosis, whereas fathers' income was similar to that of control fathers 3 years after the diagnosis. Mothers were more likely to stop working after a child's cancer diagnosis compared with controls. No association was found for fathers' employment status. Younger age of parents; lower level of education; and, among mothers, being born outside of Sweden were found to be associated with more adverse effects on income. CONCLUSIONS: Parents' income from employment and employment status appear to be adversely affected by having a child with cancer. Socioeconomic consequences are not distributed equally: the income of fathers appears to catch up after a few years, whereas mothers tend to be disadvantaged in their professional life for several years after a child's cancer diagnosis. Cancer 2017;123:1238-1248. © 2016 American Cancer Society.

Persistent impact of illness on families of adult survivors of childhood central nervous system tumors: a population-based cohort study.

OBJECTIVE: This study aims to determine the long-term impact on families of adult survivors of childhood central nervous system tumors. Illness-related family consequences were studied in relation to modifying determinants. METHODS: In a population-based cohort of parents of 697 survivors 18 years and older, 551 parents provided data. The impact of cancer on the families was evaluated in four domains using the Impact on Family Scale (economic situation, personal burden, social life, sibling impact). The results were analyzed in relation to survivors' health assessed using the Health Utilities Index™, parent satisfaction with information about illness and treatment, and perceived health-care needs of their child. RESULTS: Despite an established mild-to-moderate impact on the group level, outcomes provided evidence of substantial cancer-related family consequences even once the child had reached adulthood. About one fifth of parents reported psychological and financial difficulties exceeding the cutoff limit for a significant impact still ≥ 5 years after diagnosis. A stronger total family impact was associated with poorer health of survivors (F[3,302] = 56.65, p < 0.001), and unmet informational - (F[3,231] = 14.06, p < 0.001) and health-care needs (t(218) = 5.31, p < 0.001). The impact was unrelated to survivors' age at follow-up and time since diagnosis. CONCLUSIONS: Adverse cancer-related consequences affect a considerable portion of families of childhood survivors of central nervous system tumor, even after reaching adulthood. The impact is aggravated by lasting sequelae and perceived shortcomings of long-term follow-up, factors that partly are avoidable. Improved clinical follow-up should particularly address illness information and long-term health-care needs to reduce the impact on families of survivors suffering from chronic health conditions.