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Burden for family carers at the end of life; a mixed-method study of the perspectives of family carers and GPs.

De Korte-Verhoef MC, Pasman HR, Schweitzer BP, Francke AL, Onwuteaka-Philipsen BD, Deliens L - BMC Palliat Care (2014)

Bottom Line: Three-quarters of carers did not perceive their burden as a problem because caring often felt rewarding.No significant association was found between the characteristics of family caregivers or professional care and the degree of family caregiver burden.Also, there was no significant evidence that patients of family carers for whom the GP assessed a fairly heavy to severe burden, were more likely to be hospitalised.

View Article: PubMed Central - HTML - PubMed

Affiliation: Department of Public and Occupational Health & Expertise Center Palliative Care VUmc, EMGO Institute for Health and Care Research, VU University medical center (VUmc), P,O, Box 7057, 1007, MB Amsterdam, The Netherlands. eol@vumc.nl.

ABSTRACT

Background: Since many patients spend most of the time at home at the end of life, this may affect the burden for family carers and constitute a risk factor for the patients' hospitalisation. This study aimed to explore family carers' burden in the final three months of the patient's life, from the perspective of both carers and general practitioners (GPs), and to assess whether family burden, as defined by the GP, is associated with hospitalisation.

Methods: A cross-sectional nationwide survey among GPs and family carers was performed. Participants were 194 GPs and 74 family carers of patients who died non-suddenly. Additionally, in-depth interviews were conducted with 18 family carers. For the quantitative analyses descriptive statistics, weighted Kappa and multivariate logistic regression analysis was performed. For the qualitative part thematic analysis was conducted.

Results: The proportion of family carers experiencing a fairly heavy or severe burden increased significantly from 32% (second and third months before death) to 66% (one week before death). Most carers (95%) felt an emotional burden and 29% felt a physical burden in the final week. Three-quarters of carers did not perceive their burden as a problem because caring often felt rewarding. No significant association was found between the characteristics of family caregivers or professional care and the degree of family caregiver burden. Also, there was no significant evidence that patients of family carers for whom the GP assessed a fairly heavy to severe burden, were more likely to be hospitalised.

Conclusions: The different overall assessment of family carers' burden between GPs and family carers and the increasing emotional and physical burden of family carers towards the end constitute relevant information for GPs that will help them understand and anticipate carers' personal needs.

No MeSH data available.


Related in: MedlinePlus

Proportion of family carers and GPs who assessed family carers’ burden to be fairly heavy or severe in the final three months of the patients’ life (Dyads of family carer and GP perspectives, n = 65).
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Figure 1: Proportion of family carers and GPs who assessed family carers’ burden to be fairly heavy or severe in the final three months of the patients’ life (Dyads of family carer and GP perspectives, n = 65).

Mentions: GPs were more likely to assess family carers as having a fairly heavy or severe burden than the family carers’ self-assessment (Figure 1). In the three periods, the assessment of the burden by GPs agreed with that by family carers in 32%, 35% and 30% of cases respectively (Table 4). A large proportion of GPs estimated family carers’ burden to be higher during the three periods (35%, 41% and 47%); the opposite of this, a lower estimation of family carers’ burden, was found for 30%, 24% and 24% of the dyads respectively. The level of agreement was poor at two to three months before death (Kappa = 0.19) and poor at two to four weeks before death (Kappa = 0.13). No weighted Kappa coefficient could be calculated for the final week because observed concordance was smaller than mean-chance concordance.


Burden for family carers at the end of life; a mixed-method study of the perspectives of family carers and GPs.

De Korte-Verhoef MC, Pasman HR, Schweitzer BP, Francke AL, Onwuteaka-Philipsen BD, Deliens L - BMC Palliat Care (2014)

Proportion of family carers and GPs who assessed family carers’ burden to be fairly heavy or severe in the final three months of the patients’ life (Dyads of family carer and GP perspectives, n = 65).
© Copyright Policy - open-access
Related In: Results  -  Collection

License 1 - License 2
Show All Figures
getmorefigures.php?uid=PMC3974231&req=5

Figure 1: Proportion of family carers and GPs who assessed family carers’ burden to be fairly heavy or severe in the final three months of the patients’ life (Dyads of family carer and GP perspectives, n = 65).
Mentions: GPs were more likely to assess family carers as having a fairly heavy or severe burden than the family carers’ self-assessment (Figure 1). In the three periods, the assessment of the burden by GPs agreed with that by family carers in 32%, 35% and 30% of cases respectively (Table 4). A large proportion of GPs estimated family carers’ burden to be higher during the three periods (35%, 41% and 47%); the opposite of this, a lower estimation of family carers’ burden, was found for 30%, 24% and 24% of the dyads respectively. The level of agreement was poor at two to three months before death (Kappa = 0.19) and poor at two to four weeks before death (Kappa = 0.13). No weighted Kappa coefficient could be calculated for the final week because observed concordance was smaller than mean-chance concordance.

Bottom Line: Three-quarters of carers did not perceive their burden as a problem because caring often felt rewarding.No significant association was found between the characteristics of family caregivers or professional care and the degree of family caregiver burden.Also, there was no significant evidence that patients of family carers for whom the GP assessed a fairly heavy to severe burden, were more likely to be hospitalised.

View Article: PubMed Central - HTML - PubMed

Affiliation: Department of Public and Occupational Health & Expertise Center Palliative Care VUmc, EMGO Institute for Health and Care Research, VU University medical center (VUmc), P,O, Box 7057, 1007, MB Amsterdam, The Netherlands. eol@vumc.nl.

ABSTRACT

Background: Since many patients spend most of the time at home at the end of life, this may affect the burden for family carers and constitute a risk factor for the patients' hospitalisation. This study aimed to explore family carers' burden in the final three months of the patient's life, from the perspective of both carers and general practitioners (GPs), and to assess whether family burden, as defined by the GP, is associated with hospitalisation.

Methods: A cross-sectional nationwide survey among GPs and family carers was performed. Participants were 194 GPs and 74 family carers of patients who died non-suddenly. Additionally, in-depth interviews were conducted with 18 family carers. For the quantitative analyses descriptive statistics, weighted Kappa and multivariate logistic regression analysis was performed. For the qualitative part thematic analysis was conducted.

Results: The proportion of family carers experiencing a fairly heavy or severe burden increased significantly from 32% (second and third months before death) to 66% (one week before death). Most carers (95%) felt an emotional burden and 29% felt a physical burden in the final week. Three-quarters of carers did not perceive their burden as a problem because caring often felt rewarding. No significant association was found between the characteristics of family caregivers or professional care and the degree of family caregiver burden. Also, there was no significant evidence that patients of family carers for whom the GP assessed a fairly heavy to severe burden, were more likely to be hospitalised.

Conclusions: The different overall assessment of family carers' burden between GPs and family carers and the increasing emotional and physical burden of family carers towards the end constitute relevant information for GPs that will help them understand and anticipate carers' personal needs.

No MeSH data available.


Related in: MedlinePlus