Duty of care following stroke: Family experiences in the first six months

Abstract

Introduction and BackgroundStroke is the third largest cause of death in New Zealand and is a major cause of disability. An estimated 45,000 people live with a stroke in New Zealand and around 70% are dependent on others to help with their daily activities (Stroke Foundation of New Zealand, 2014; Stroke Foundation of New Zealand and New Zealand Guidelines Group, 2010). While a lot is known about the impact of stroke on the survivor and the primary caregiver little is known about how stroke affects the wider family. Impacts such as financial difficulties, strain and isolation have been seen as significant factors on the primary caregivers' experience (Bulley, Shiels, Wilkie, & Salisbury, 2010; Greenwood, Mackenzie, Cloud, & Wilson, 2009; Lutz, Young, Cox, Martz, & Creasy, 2011). The importance of family in stroke recovery was noted by Vincent et al. (2007) and Brunborg and Ytrehus (2014) who described how important family, friends and other social networks were to the stroke survivor's rehabilitation and well-being.In the New Zealand context Dyall, Feigin, and Brown (2008) and Corbett, Francis, and Chapman (2006) focused their studies on Maori stroke survivors and their caregivers. Dyall et al. (2008), using statistics from Feigin et al. (2006), argued there is greater health disparity and financial impact for Maori whanau than non-Maori families, as Maori have strokes at younger ages; 62 years for Maori compared to 75 years for Europeans.This study is part of a larger longitudinal hermeneutic project (2011-2015) undertaken by researchers from the Department of Nursing, Unitec Institute of Technology and the Waitemata District Health Board, Auckland, New Zealand.Research DesignAimThe aim of this study was to investigate the phenomenon of becoming and being a family member of a stroke survivor over the period of six months after the initial stroke.MethodologyThis was an exploratory study using hermeneutic phenomenological research methodology.Flermeneutic phenomenology aims to understand the significance of practical activities and experiences in everyday lives and is well suited to studying human issues and concerns (Plager, 1994) such as family experiences post-stroke. The processes used in the study were guided by those described by van Manen (1997).MethodsParticipants for the study were recruited from the larger longitudinal project (Northern X Regional Ethics Committee: NTX/11/EXP/062/AM02) using purposive sampling strategies. Inclusion criteria were: (1) family of a person admitted to the Assessment, Treatment and Rehabilitation (ATR) ward following a first-ever stroke where at least two family members agreed to participate; (2) adequate spoken English to complete consent and the interview. Informed consent was obtained in writing at the beginning of the project and on-going verbal consent obtained before each subsequent data collection phase. Consistent with the longitudinal project, 'family' was defined broadly to include people who live in close relationship with the stroke survivor. Five families who met inclusion criteria were recruited by intermediaries for the longitudinal project (total participants = 14), with one of these families consenting to participate in this study. This family were recruited as the stroke event coincided with the first author's availability to complete the study. The family included the spouse of a stroke survivor (Ivy) and two other family members (Deb and Jane). All of the participants were health professionals. To maintain anonymity their specific disciplines are not disclosed and other identifying data excluded. All data were anonymised and stored in password protected digital format only accessible to the research team. Pseudonyms were chosen by the researcher and are used throughout.Data collectionFace-to-face, semi-structured interviews were undertaken at six weeks, three and six months poststroke (December 2011 - May 2012). …