Stroke: a picture of health disparities in New Zealand.

• Author: Dyall, Lorna
• Position: Report

Abstract

The experience of Maori stroke survivors and their caregivers is the focus of this paper. A series of qualitative face-to-face interviews was conducted, firstly with Maori who had experienced stroke, and who were part of the 2002/03 Auckland Regional Community Stroke (ARCOS) study; and secondly with their primary caregivers. Experiences of Maori stroke survivors and caregivers are presented under the following themes: experience and knowledge of stroke, experience in hospital and the importance of cultural identity in motivating rehabilitation, the financial impact of stroke on Maori whanau, the stigma and social isolation associated with stroke and health services, and the associated policy issues that emerge from these interviews for Maori.

INTRODUCTION

Stroke is a preventable disease, yet it is the third leading cause of death in New Zealand after cancer and heart disease, and it is the greatest cause of disability in older people (Tobias et al. 2002). Over 7,000 New Zealanders each year will experience a stroke event, and of this population at least three-quarters will die or be dependent on others for care one year after the event (Gommans et al. 2003). Although so many people each year will experience a stroke event, access to, co-ordination and quality of stroke services vary across the country (Wilkinson and Sainsbury 2003). The purpose of this research was to provide ethnic-specific qualitative information to complement the quantitative results from the 2002/03 Auckland Regional Community Stroke (ARCOS) study (Anderson et al. 2005, Carter et al. 2006). This paper only reports interviews with Maori stroke survivors and their primary caregivers; other ethnic-specific interviews have not yet been published.

The World Health Organisation defines stroke as a sudden-onset, focal or global neurological deficit lasting more than 24 hours or leading to death, and excludes transient ischaemic attacks (Tobias et al. 2002). For those Maori who experience stroke, the impact on them, those who provide care and their wider whanau is substantial.

Disparities in health become clearly visible when comparing both coronary health and cardiovascular outcomes between Maori and Pakeha (European New Zealanders). At present, coronary heart disease is the leading cause of death for both Maori males and females, and the coronary heart disease mortality rate for Maori under 65 years of age is almost three times higher than for non-Maori in the same age group (Ministry of Health 2003).

The average age of stroke onset for Maori is 61 years, compared to 64 years for Pacific people and over 75 years for European New Zealanders (Feigin et al. 2006). There is also some evidence that the chance of being dependent at 12 months poststroke is three times higher for Maori compared to Pakeha (McNaughton et al. 2002, Ministry of Health 2003). There are also gender differences in relation to stroke, such that women on average experience stroke at a later age than men (at approximately 76 years), and Maori and Pacific women experience stroke on average 15 years earlier than European women in New Zealand (Dyall et al. 2006).

National guidelines for the management of stroke recognise the different onset of stroke for Maori compared to non-Maori (Moewaka-Barnes and Tunks 2002, Stroke Foundation New Zealand 2003). To address Maori needs, it is recommended that providers of stroke services work with local Maori providers, address barriers to stroke care and involve whanau in the development of care for Maori stroke survivors.

There is no mention in the national guidelines of recognition of Te Tiriti o Waitangi (Treaty of Waitangi). This is despite the Ministry of Health's recognition that it is appropriate for the health sector to address health inequalities for Maori from a Te Tiriti o Waitangi context, taking account of the historical circumstances that have occurred for Maori, such as loss of land, loss of economic and social assets, and the impact of colonisation which continues to affect the health and disability status of Maori today (Ministry of Health 2002).

A health inequalities framework has been developed by the Ministry of Health to help explain and address health inequalities for Maori and ethnically disadvantaged populations. The framework recognises how health inequalities are created within society and outlines steps that can be taken to address structural arrangements in society which create inequities, such as the importance of improving income, employment, education and health status for disadvantaged ethnic populations. In addition, it is important to support Maori and other disadvantaged populations to have greater control over the environments they live in, as well as providing support to assist individuals and populations to develop healthy lifestyles. It is also advocated that health and disability services be appropriately resourced in relation to need. Support should be given to those who are disadvantaged by health or disability, for example, by providing appropriate income support and addressing ethnic, racial and social discrimination, and assistance should be provided for those who provide informal or formal care for the disabled (Ministry of Health 2002).

It is important to understand the context of why Maori have a different experience of stroke from other populations in New Zealand (Stroke Foundation New Zealand 2003). This paper identifies issues that are important for Maori and raises policy issues related to stroke and Maori access to health and other support services. The paper raises the need for further research and inquiry into how health and disability disparities for Maori can be addressed to improve their experience and health outcomes from stroke.

SUBJECTS AND METHODOLOGY

A qualitative study was undertaken interviewing kanohi ki te kanohi (face-to-face) Maori stroke survivors and their primary caregivers. Fifteen people who self-identified as Maori were interviewed: eight were Maori stroke survivors, of whom four were females under 60 years old and four were males aged over 60 years. Seven Maori caregivers were interviewed, of whom six were females. They were connected to the stroke survivor through one of the following relationships: wife, sister, daughter or granddaughter, and the male interviewed was the husband of a stroke survivor.

A semi-structured questionnaire was developed to guide the interviews. The number of participants interviewed was related to the resources of the study. Possible participants were identified through the Stroke Foundation during the ARCOS 2002/2003 study. They were contacted by letter informing them about the study, and then contacted by phone to inquire whether they were interested in participating. If so, a time was arranged to meet. All participants were again informed about the study, and informed consent was obtained.

Participants were interviewed by two Maori researchers (Anderson et al 2005). Prior to the start of the interviews participants' ethnic identity was asked again to confirm whether they identified as Maori. Appropriate Maori protocol was accorded to all participants, with each interview recognising spiritual, ancestral and tribal connections. Two researchers were present at each interview with the stroke survivor, so that one researcher could interview the stroke survivor and the other could interview the caregiver separately. This arrangement enabled both participants to freely discuss their experience of stroke.

All interviews were taped and transcribed. They were then read by the Maori...