Caregiving for the terminally ill:at what cost?

This literature review exposes the nature and extent of physical and psychosocial morbidity and economic disadvantage, home palliative caregivers suffer as a direct result of their caregiving role. Research has demonstrated that caregivers providing support to individuals receiving palliative care report unmet needs for information, communication, service provision and support from health and community services. Three sets of challenges are highlighted in this literature review which help explain why the needs of home palliative caregivers are largely unmet: (i) barriers to seeking help; (ii) a dearth of research-based interventions focused on reducing the negative aspects of caregiving; and (iii) a number of impediments to effective policy and service development for family caregivers. Furthermore, invited submissions from caregivers echoed and confirmed the issues reported in the literature. Recommendations for enhancing caregiver support are outlined.

The relationship between informal caregiving and mortality: an analysis using the ONS Longitudinal Study of England and Wales.

BACKGROUND:

Many studies have suggested that caregiving has a detrimental impact on health. However, these conclusions are challenged by research which finds evidence of a comparative survivorship advantage, as well as work which controls for group differences in the demand for care.

METHODS:

We use a large record linkage study of England and Wales to investigate the mortality risks of carers identified in the 2001 Census. The analysis focuses on individuals aged 35-74 living with others in private households and a distinction is made between those providing 1-19 and 20 or more hours of care per week. Logit models identify differences in carers' health at baseline and postcensal survival is analysed using Cox proportional hazards models.

RESULTS:

12.2% of study members reported providing 1-19 h of care and 5.4% reported providing 20 or more hours. While carers were significantly more likely to report poorer health at baseline, survival analyses suggested that they were at a significantly lower risk of dying. This comparative advantage also held when the analyses were restricted to individuals living with at least one person with poor health.

CONCLUSIONS:

The comparative mortality advantage revealed in this analysis challenges common characterisations of carers' health and draws attention to important differences in the way carers are defined in existing analyses. The survival results are consistent with work using similar data for Northern Ireland. However, the study also affords more uniform conclusions about carers' baseline health and this provides grounds for questioning existing hypotheses about the reasons for this advantage.

Bereavement After Informal Caregiving: Assessing Mental Health Burden Using Linked Population Data

Methods. We linked prescription records for antidepressant and anxiolytic drugs to characteristics and life-event data of members of the Northern Ireland Longitudinal Study (n = 317 264). Using a case-control design, we fitted logistic regression models, stratified by age, to model relative likelihood of mental health problems, using the proxy measures of mental health–related prescription.

Results. Both caregivers and bereaved individuals were estimated to be at between 20% and 50% greater risk for mental health problems than noncaregivers in similar circumstances (for bereaved working-age caregivers, odds ratio = 1.41; 95% confidence interval = 1.27, 1.56). For older people, there was no evidence of additional risk to bereaved caregivers, though there was for working-age people. Older people appeared to recover more quickly from caregiver bereavement.

Caregiving reduces mortality risk for most caregivers: a census-based record linkage study

Importance Countries with advanced welfare systems are increasingly relying on the input of informal caregivers and there are growing concerns for their mental and physical wellbeing. However, the evidence about the relationship between caregiving and mortality risk is less clear.

Methods A census-based record linkage study with mortality follow-up of thirty-three months. A total of 1,122,779 individuals including 183,842 caregivers, of whom 28.2% (51,927) were providing fifty or more hours caregiving per week.

Results Over thirty-three months of follow-up a total of 29,335 deaths occurred, with 2,443 of these to caregivers. Mortality risk for caregivers was lower than for non-caregivers (HR= 0.72: 95%CI=0.69, 0.75 in the fully adjusted model), and the lower risk was evident even for those providing fifty or more hours of caregiving per week (adjusted Hazard Ratio=0.77: 95%CI=0.71, 0.83 and 0.76: 95%CI=0.69, 0.83 for men and women respectively). There was no evidence that this relationship varied by either age or marital status. Even amongst people with chronic health problems such as poor mental health, caregivers had lower mortality risk than non-caregivers. Caregiving is associated with reduced mortality risk for most causes - for example, the risk of death from Ischaemic Heart Disease for caregivers providing fifty or more hours was 27% and 31% lower for men and for women respectively compared to non-caregivers (HR=0.73: 95%CI=0.60, 0.88 and HR=0.69: 95%CI=0.51, 0.92).

Conclusions This large population-based study confirms that for the majority of caregivers the beneficial effects of caregiving in terms of short-term mortality risk appear to outweigh any negative effects, even amongst people with significant health problems. These results underscore the need for a reappraisal of how caregiving is perceived.


Keywords: caregiving, carers, mortality, longitudinal follow-up.
marital status. Even amongst people with chronic health problems such as poor mental health, caregivers had lower mortality risk than non-caregivers. Caregiving is associated with reduced mortality risk for most causes - for example, the risk of death from Ischaemic Heart Disease for caregivers providing fifty or more hours was 27% and 31% lower for men and for women respectively compared to non-caregivers (HR=0.73: 95%CI=0.60, 0.88 and HR=0.69: 95%CI=0.51, 0.92).

Conclusions This large population-based study confirms that for the majority of caregivers the beneficial effects of caregiving in terms of short-term mortality risk appear to outweigh any negative effects, even amongst people with significant health problems. These results underscore the need for a reappraisal of how caregiving is perceived.

The Positives of Caregiving: Mothers’ Experiences Caregiving for a Child With Autism

Most research in the field of autism focuses on the medical and psychological characteristics of the disability. Research that focuses on caregiving emphasizes the stresses and pathological features associated with having a child with autism. As such, the more positive aspects of caregiving have been left in abeyance, portraying caregiving and autism as characterized by only negative experiences, prognoses, and outcomes. Based on mothers’ reflections, this article reports on some of the positives of caregiving. The findings provide a glimpse into a seldom studied side of caregiving—events and experiences appraised by mothers in a positive and sometimes joyous light—and the impact they have on mothers’ experiences. Furthermore, practical implications for social service professionals and families are discussed.

The effects of parental sensitivity and involvement in caregiving on mother–infant and father–infant attachment in a portuguese sample

In the present longitudinal study, we investigated attachment quality in Portuguese mother–infant and in father–infant dyads, and evaluated whether attachment quality was related to parental sensitivity during parent–infant social interaction or to the amount of time each parent spent with the infant during play and in routine caregiving activities (e.g., feeding, bathing, play). The sample consisted of 82 healthy full-term infants (30 girls, 53 boys, 48 first born), and their mothers and fathers from mostly middle-class households. To assess parental sensitivity, mothers and fathers were independently observed during free play interactions with their infants when infants were 9 and 15 months old. The videotaped interactions were scored by masked coders using the Crittenden’s CARE-Index. When infants were 12 and 18 months old, mother–infant and father–infant dyads were videotaped during an adaptation of Ainsworth’s Strange Situation. Parents also described their level of involvement in infant caregiving activities using a Portuguese version of the McBride and Mills Parent Responsibility Scale. Mothers were rated as being more sensitive than fathers during parent–infant free play at both 9 and 15 months. There also was a higher prevalence of secure attachment in mother–infant versus father–infant dyads at both 12 and 18 months. Attachment security was predicted by the amount of time mothers and fathers were involved in caregiving and play with the infant, and with parents’ behavior during parent–infant free play.

The Relationship between Dementia Family Caregivers' Traditional Values and Beliefs about Caregiving and Well-being

Introduction: Canada’s aging population is diverse and this diversity will continue to grow for the next two decades (Government of Canada, 2002; Katz, 2005; Statistics Canada, 2010). Objective: to examine the relationship between dementia family caregivers’ traditionally-based beliefs about caregiving, their caregiving experience, and their well-being. Method: exploratory secondary data analysis of cross-sectional survey data from 76 community caregivers of persons with dementia in Ontario. Results: traditional values for caregiving was independently associated with coping resources and health status but not depression symptoms. Caregiver self-efficacy and social support both partially mediated the relationship between beliefs about caregiving and caregiver health status. Discussion: Findings from this exploratory study are consistent with stress process models of culture and caregiving. The finding that self-efficacy was associated with traditional values and that it mediated the relationship between traditional values and caregiver well-being is new to the literature.

Unresolved states of mind with respect to attachment : developmental significance, subtypes, and relations to disrupted caregiving

Thèse numérisée par la Division de la gestion de documents et des archives de l'Université de Montréal

Young caregiving and HIV in the UK: caring relationships and mobilities in African migrant families

Recent research in Sub-Saharan Africa has revealed the importance of children’s caring roles in families affected by HIV and AIDS. However, few studies have explored young caregiving in the context of HIV in the UK, where recently arrived African migrant and refugee families are adversely affected by the global epidemic. This paper explores young people’s socio-spatial experiences of caring for a parent with HIV, based on qualitative research with 37 respondents in London and other urban areas in England. In-depth semi-structured interviews were conducted with young people with caring responsibilities and mothers with HIV, who were predominantly African migrants, as well as with service providers. Drawing on their perspectives, the paper discusses the ways that young people and mothers negotiate the boundaries of young people’s care work within and beyond homespace, according to norms of age, gender, generational relations and cultural constructions of childhood. Despite close attachments within the family, the emotional effects of living with a highly stigmatised life-limiting illness, pressures associated with insecure immigration status, transnational migration and low income undermined African mothers’ and young people’s sense of security and belonging to homespace. These factors also restricted their mobility and social participation in school/college and neighbourhood spaces. While young people and mothers valued supportive safe spaces within the community, the stigma surrounding HIV significantly affected their ability to seek support. The article identifies security, privacy, independence and social mobility as key dimensions of African young people’s and mothers’ imagined futures of ‘home’ and ‘family’.