BackgroundSeriously ill patients often depend on their informal caregivers to help and support them through the disease course. This study investigated informal cancer caregivers’ experiences of caregiving tasks and consequences and how caregiver status (primary vs. non-primary caregiver) and the caregiver’s relationship to the patient (spouse/partner, etc.) are related to these experiences.MethodsIn a cross-sectional questionnaire study, randomly selected cancer patients with a range of diagnoses and disease stages were invited to pass on the ‘Cancer Caregiving Tasks, Consequences and Needs Questionnaire’ (CaTCoN) to 1–3 of their caregivers.ResultsA total of 590 caregivers related to 415 (55% of 752 eligible) cancer patients participated. Large proportions of caregivers experienced substantial caregiving workload, e.g., provision of psychological support (74%), as well as a range of negative consequences, most commonly stress (59%). Some caregivers experienced personal growth, but relatively large proportions did not. Caregiver status and the caregiver’s relationship to the patient were associated with some caregiving aspects. Primary caregivers experienced the highest caregiving workload, and non-primary caregivers experienced most problems with getting time off from work. Spouses/partners and/or parents experienced the highest workload, most lack of time for social relations, most financial difficulties, and had the greatest need for seeing a psychologist. They furthermore experienced the highest degree of personal growth and had the smallest need for living a normal life while being a caregiver. Yet, regarding the majority of caregiving aspects, no associations with caregiver status or the caregiver’s relationship to the patient were found.ConclusionsOverall, the findings confirm that cancer caregiving is burdensome. The primary and the closest caregivers seemed to take on most caregiving tasks, but, contrary to expectations, regarding the majority of caregiving consequences non-primary and more distant caregivers were affected to the same degree as the primary and closest caregivers. Initiatives and interventions to support not only the primary caregivers are therefore warranted.Electronic supplementary materialThe online version of this article (doi:10.1186/1471-2407-14-541) contains supplementary material, which is available to authorized users.

BackgroundBeing born with low birth weight may have an impact on different aspects of mental health, psychosocial functioning and well-being; however results from studies in young adulthood have so far yielded mixed findings. The aim of this study was to assess the long-term impact in young adulthood on self-reported mental health, health-related quality of life, self-esteem and social relations by investigating differences between two low birth weight groups and a control group.MethodsIn a follow-up at 20 years of age, 43 preterm VLBW (birth weight ≤ 1500 g), 55 term SGA (birth weight < 10th percentile) and 74 control subjects completed the Adult Self-Report (ASR) of the Achenbach System of Empirically Based Assessment, the Adult Autism Spectrum Quotient (AQ), the Short Form 36 Health Survey, the Self-Perception Profile for Adolescents-Revised, and the Wechsler Adult Intelligent Scale III assessment.ResultsThe VLBW and SGA groups reported significantly more mental health problems than controls. The VLBW group predominantly had internalizing problems, and the non-significant association with ASR Total score was reduced by the Intelligence Quotient (IQ). The SGA group had increased scores on both internalizing and externalizing problems, and the association with ASR Total score remained significant after adjusting for IQ in this group. Both low birth weight groups reported less interaction with friends and lower quality of life related to mental health domains than controls. Self-esteem scores were lower than in the control group for athletic competence (VLBW) and social acceptance (SGA).ConclusionOur findings suggest that self-reported mental health and well-being in young adulthood may be adversely affected by low birth weight, irrespective of whether this is the result of premature birth or being born SGA at term.

The caregivers' dissatisfaction with the interaction with HCPs was pronounced. More focus on and involvement of the caregivers, in a way that matches the caregivers' needs, is still warranted.