The Views of Informal Carers' Evaluation of Services (VOICES): Toward an adaptation for the New Zealand bicultural context

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Abstract

Objective:

The Views of Informal Carers Experiences of Services (VOICES) instrument is a postal questionnaire that has been utilized internationally to capture the experiences of end-of-life care during the last months of life. Aotearoa/New Zealand, traditionally a bicultural society, reflects both the European worldview and that of the indigenous Māori. The Māori collectivist worldview considers whānau (extended family) support as key at the end of life and privileges “kanohi ki te kanohi” (face-to-face) meetings. In such a context, how will VOICES be received? Our pilot study was designed to test the effectiveness of an adaptation of the VOICES questionnaire in the New Zealand social setting for both Māori and non-Māori.

Method:

Cognitive interviews were conducted with 20 bereaved whānau and family members whose relative died between January 1 and April 4, 2014, in one urban New Zealand hospital. Thematic analysis was conducted on the resulting transcripts.

Results:

We found that, although the questionnaire provides valuable information, administration of the current questionnaire within a bicultural context is problematic. These problems are related to its scope, cultural acceptability, structure, and content. Distribution of the VOICES questionnaire, either through the post or online, without prior consultation, also risks engaging Māori in a culturally inappropriate manner.

Significance of results:

These findings will prompt revisions to both the content and research approach to implementing VOICES in a bicultural context. Recommendations include prior consultation with local indigenous communities as well as utilization of a mixed-methods approach to utilizing VOICES in a bicultural context. The cognitive interview procedures employed (adjusted for a collectivist worldview) in this study may also prove useful to indigenous groups seeking to develop or adapt questionnaires within a bicultural or multicultural context.

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Most cited references 22

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Family perspectives on end-of-life care at the last place of care.

Joan M Teno, Brian R Clarridge, Virginia Casey … (2004)

Over the past century, nursing homes and hospitals increasingly have become the site of death, yet no national studies have examined the adequacy or quality of end-of-life care in institutional settings compared with deaths at home. To evaluate the US dying experience at home and in institutional settings. Mortality follow-back survey of family members or other knowledgeable informants representing 1578 decedents, with a 2-stage probability sample used to estimate end-of-life care outcomes for 1.97 million deaths from chronic illness in the United States in 2000. Informants were asked via telephone about the patient's experience at the last place of care at which the patient spent more than 48 hours. Patient- and family-centered end-of-life care outcomes, including whether health care workers (1) provided the desired physical comfort and emotional support to the dying person, (2) supported shared decision making, (3) treated the dying person with respect, (4) attended to the emotional needs of the family, and (5) provided coordinated care. For 1059 of 1578 decedents (67.1%), the last place of care was an institution. Of 519 (32.9%) patients dying at home represented by this sample, 198 (38.2%) did not receive nursing services; 65 (12.5%) had home nursing services, and 256 (49.3%) had home hospice services. About one quarter of all patients with pain or dyspnea did not receive adequate treatment, and one quarter reported concerns with physician communication. More than one third of respondents cared for by a home health agency, nursing home, or hospital reported insufficient emotional support for the patient and/or 1 or more concerns with family emotional support, compared with about one fifth of those receiving home hospice services. Nursing home residents were less likely than those cared for in a hospital or by home hospice services to always have been treated with respect at the end of life (68.2% vs 79.6% and 96.2%, respectively). Family members of patients receiving hospice services were more satisfied with overall quality of care: 70.7% rated care as "excellent" compared with less than 50% of those dying in an institutional setting or with home health services (P<.001). Many people dying in institutions have unmet needs for symptom amelioration, physician communication, emotional support, and being treated with respect. Family members of decedents who received care at home with hospice services were more likely to report a favorable dying experience.

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Understanding barriers to health care: a review of disparities in health care services among indigenous populations.

Sonia Marrone (2007)

To review the current status of health care access and utilization among Indigenous people in the North America, Australia and New Zealand. Literature review. A systematic search and critical review of relevant studies using online searches of electronic databases (PubMed, PsychINFO, MEDLINE) that examined issues relating to health care utilization and access. Most studies found that health care access and utilization rates were found to be significantly lower among Indigenous populations. Factors such as rural location, communication and socio-economic status were found to be barriers to health care services that disproportionately affected Indigenous communities compared with the general population. Inequalities in health care access and utilization among Indigenous populations may play an important role in understanding why disparities in the health status of Indigenous populations continue to exist despite public health interventions. Further research is needed to understand the factors that contribute to these inequalities and to develop specific interventions to increase access and utilization among Indigenous populations.