A cross-sectional survey of people with stroke, their family members and Multi-Disciplinary Team (MDT) health professionals regarding the value of the information book Life after stroke : a guide for people with stroke and their families.

Abstract

Life after Stroke: a Guide for People with Stroke and their Families is a book first published by the Stroke Foundation of New Zealand in 1998, reprinted in 2004, with a second edition published in 2013. The book was produced to meet the information needs expressed by stroke survivors and their family members. The book provides information about stroke, its impact, and implications on stroke survivors’ lives. The book is available in both hard and soft copy format. People with stroke and their families are given this book in hospitals and in the community.

The aim of the thesis is to ascertain the value of the book Life after Stroke: a Guide for People with Stroke and their Families.

A cross-sectional survey was used with people with stroke, their family members/caregivers, and health professionals to determine the value of the information book Life after Stroke: a Guide for People with Stroke and their Families. The survey was designed to see how the patients and their family members found the book in regard to ease of reading/understanding, accessibility, usefulness, and value. Two sets of questionnaires were developed: one for health professionals and another for stroke patients and family members/caregivers. The study was undertaken in a stroke rehabilitation ward. The data collection period was from June to October 2016. Data analysis was done using the computer program SPSS.

The study reported two thirds of participants (50/75) have read the book. Among them 14 were patients, 12 were family members/caregivers, and 24 were staff. Seventy percent of the participants who rated the book found the book was very useful with only 2% of participants reporting it was not useful. Eighty-three percent of participants thought the book had the right amount of information, 91% of respondents felt the words and sentences in the book were easy to understand, and 93% of respondents felt the size of the letters in the book were easy to read. As a result of reading the book 73% (19/26) of respondents felt they had a better understanding of their role in rehabilitation, 14 felt they became more knowledgeable, and 12 felt more confident in rehabilitation. Two thirds of participants were not aware of the existence of an electronic version of the book and 90% participants (patients and family members/caregivers) preferred to read paper resources.

Although the book was meant to have been distributed to the survey participants, just over a third (39%) of respondents reported that they had not received a copy of a book. The reason behind this included: staff reported that they did not know about the book or where the books were kept, were not involved in admission process because they are casual staff, believed that it was not their job to distribute the book and patients and family members never asked them for a copy of the book. Staff who had worked longer in their role were more likely to distribute the book compared to new staff members.

Although most people considered that the book was very useful, still half of the participants reported that the book could be presented in different formats, such as on television screens in the hospital and at General Practitioners (GP) practices, as posters, at a social group meeting, on a CD (talking book) or by a person reading the book to patients. Participants also suggested some areas to improve the book, such as being shorter and producing a simplified version, provide more information about stroke clubs, and what they offer, information about grants and financial assistance, diagrams to demonstrate different recovery stories associated with different types of stroke, to break the book into tabulated sections, and to include pull out sections.

In conclusion, the study was able to find the book Life after Stroke: a Guide for People with Stroke and their Families was valuable to stroke patients and their family members. However, still some development is needed to make the book more accessible and valuable. This can be done by providing training to staff about who is the responsible person to distribute a book and where are they kept and by editing the book considering the feedback from stroke patients, their family members and the health professionals working in the stroke ward.