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PSYCHOGERIATRICS 2014; ••: ••–••

doi:10.1111/psyg.12087

ORIGINAL ARTICLE

Caregiving across the lifespan: comparing caregiver burden, mental health, and quality of life Gabriela Romano de OLIVEIRA,1 José Fittipaldi NETO,1 Sthephanie Marques de CAMARGO,1 Alessandra Lamas Granero LUCCHETTI,2,3 Daniele Corcioli Mendes ESPINHA1 and Giancarlo LUCCHETTI3

1 Marília Medical School, 2University of São Paulo, São Paulo, and 3Federal University of Juiz de Fora, Juiz de Fora, Brazil

Correspondence: Professor Giancarlo Lucchetti MD, PhD, Rua Dona Elisa 150 apto 153 B, Barra Funda – São Paulo (SP) – Brazil, CEP 01155-030. Email: [email protected] Received 22 April 2014; revision received 2 September 2014; accepted 11 September 2014.

Key words: burden, caregiver, mental health, quality of life.

Abstract Background: Care can be considered a lifelong process, but caring for a child is different from caring for an older adult. The present study aims to compare the caregiving process from infancy through old age by evaluating differences in caregiver burden, mental health, and quality of life and to describe the factors that could impact these outcomes. Methods: To compare different groups of caregivers, we included 300 caregivers recruited from admissions to a tertiary acute hospital: 100 caregivers of children, 100 caregivers of adults, and 100 caregivers of older adults. A self-administered questionnaire was used that covered the following: sociodemographics, depression (Beck Depression Inventory), anxiety (Beck Anxiety Inventory), quality of life (Short Form Health Survey (SF-36)), religiosity (Duke Religion Index) and caregiver burden (Zarit Caregiver Burden Interview). Results: A comparison between groups was performed (through χ2 and ANOVA), and a linear regression analysis was used to assess the related factors. We found that children’s caregivers had more depressive symptoms (higher Beck Depression Inventory scores), better physical health (SF-36: physical functioning and SF-36: Physical Component Summary), and lower pain (SF-36: bodily pain) than other caregivers. We found that caregivers of adults had better mental health (SF-36: mental health and SF-36: Mental Component Summary) than other caregivers and that caregivers of older adult had a higher caregiver burden (Zarit Caregiver Burden Interview scores) than other caregivers. After we controlled for baseline characteristics, only depressive symptoms and caregiver burden remained statistically significant. Conclusion: In conclusion, there are important differences between caregiving across the lifespan. Caregiving for children was associated with more depressive symptoms, and caregiving for older adults was associated with higher caregiver burden. Further studies are needed to replicate these findings in other settings.

INTRODUCTION Care can be considered a lifelong process that begins before birth (in the mother’s womb) and ends after death.1 During early childhood, caregiving is provided in a one-way fashion related to parenting (‘baby gets all’). It gradually advances into a bi-directional and © 2014 The Authors Psychogeriatrics © 2014 Japanese Psychogeriatric Society

then multi-directional process that involves both the receipt of care and the delivery of care to others.1 We can assume that there are differences between caring for a child, an adult, and an elderly person. The necessary tasks and the way in which they are performed are influenced by the needs of the care 1

G. R. Oliveira et al.

recipient and sociocultural norms associated with familial roles.2 In a simple definition, caregivers are persons who take care of those who need assistance because they are bedridden or have physical or mental limitations.3 According to a recent survey, an estimated 65.7 million people in the USA have served as unpaid family caregivers to an adult or a child. In addition, approximately 31.2% of households reported that at least one household member had served as an unpaid family caregiver in the past 12 months (1.8% for a child, 24.0% for an adult, and 5.4% for both an adult and child).4 Accepting the responsibility to take care of another person is not an easy task, and many caregivers experience emotional challenges and caregiver burden.5 These consequences are not associated with a single cause; rather, they result from a variety of circumstances, experiences, responses, and resources that vary considerably and influence caregivers’ health and behaviour.6 First, there are problems associated directly with caregiving (e.g. the care recipient’s behaviour or physical limitations). Second, there are stressful experiences that are triggered by primary caregiving stressors (e.g. restrictions in carrying out one’s personal and recreational activities).6,7 As a result, the caregiver could experience poor mental health, high caregiver burden, and decreased quality of life.8 Caregiving is a multidimensional process, as proposed by many studies,9–11 in which each factor can have an important contribution to the caregiving

experience and burden. Intrinsic factors (e.g. caregiver age, gender, religiosity, marital status, family income, and coping) and extrinsic factors (e.g. hours of caregiving, relationship with the care recipient, the care recipient’s gender, social support, the care recipient’s characteristics, and caregiver demand) are associated with several outcomes, such as quality of life, mental health and caregiver burden.9,10 Nevertheless, there are remarkable differences between caregivers of children (usually performed by young parents who are not paid) and caregivers of older adults (usually performed by non-married older relatives, sons, or daughters and both paid and nonpaid caregivers). In addition, there are differences between care recipient aggressiveness, caregiving workload, and social support as the care recipient’s age increases. We believe these differences in care recipient age could be one of the keys to understanding the caregiving process, as shown in the proposed conceptual framework presented in Figure 1. Identifying how each factor affects different caregiver groups could help health professionals gain a better understanding of such outcomes and promote preventative interventions. However, few reviews have compared these groups,9 and to our knowledge, no comparative study has ever evaluated these differences. Therefore, the present study aims to compare the caregiving process from infancy through old age by evaluating differences in caregiver burden, mental health, and quality of life and to describe which factors could impact these outcomes.

Figure 1 Conceptual framework for the process of caregiving.

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© 2014 The Authors Psychogeriatrics © 2014 Japanese Psychogeriatric Society

Caregiving across the lifespan

METHODS A cross-sectional observational study comparing caregivers and their care recipients in three age groups was carried out from September 2011 to July 2012 in a tertiary medical centre, the Hospital das Clínicas da Faculdade de Medicina de Marília. The hospital has 173 beds for adults and 78 beds for children, and has become a point of reference for medical care in the west-central area of São Paulo, Brazil (west-central population: 1 074 108 inhabitants). We selected three different groups of caregivers: caregivers of children (

Caregiving across the lifespan: comparing caregiver burden, mental health, and quality of life.

Care can be considered a lifelong process, but caring for a child is different from caring for an older adult. The present study aims to compare the c...
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