Topics in Stroke Rehabilitation
ISSN: 1074-9357 (Print) 1945-5119 (Online) Journal homepage: http://www.tandfonline.com/loi/ytsr20
Caring for stroke survivors: experiences of family caregivers in Sri Lanka – a qualitative study Muditha Wagachchige Muthucumarana, Kerstin Samarasinghe & Carina Elgán To cite this article: Muditha Wagachchige Muthucumarana, Kerstin Samarasinghe & Carina Elgán (2018): Caring for stroke survivors: experiences of family caregivers in Sri Lanka – a qualitative study, Topics in Stroke Rehabilitation, DOI: 10.1080/10749357.2018.1481353 To link to this article: https://doi.org/10.1080/10749357.2018.1481353
© 2018 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group Published online: 20 Jul 2018.
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Topics in Stroke Rehabilitation, 2018 https://doi.org/10.1080/10749357.2018.1481353
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ORIGINAL ARTICLE
Caring for stroke survivors: experiences of family caregivers in Sri Lanka – a qualitative study Muditha Wagachchige Muthucumaranaa , Kerstin Samarasingheb and Carina Elgánb a Department of Allied Health Sciences, Faculty of Medical Sciences, University of Sri Jayewardenepura, Nugegoda, Sri Lanka; bFaculty of Health Science, Kristianstad University, Kristianstad, Sweden
ARTICLE HISTORY
ABSTRACT
Background: Stroke is a life-changing event for both stroke survivors and their family caregivers. After receiving acute care at the hospital, family members are expected to take care of stroke survivors at home and to continue treatment and rehabilitation. The new role of “informal caregiver” is a challenge that creates many difficulties for family caregivers that are not explicit in the Sri Lankan context. Objectives: This study aimed at exploring family caregivers’ experiences of providing informal care for dependent stroke survivors. Methods: The sample was chosen by purposive sampling with a maximum variation by age, ethnicity, religion, educational level, relationship, and monthly income. Ten informal family caregivers to stroke survivors with hemiplegia who had been treated at the National Hospital of Sri Lanka participated in indepth interviews analyzed using conventional content analysis. Results: Qualitative content analysis of data resulted in an overriding theme, “Caring with love, against all odds,” along with four categories, “Life alterations,” “Lack of resources,” “Compassionate care,” and “Coping strategies.” Although the increased workload, restricted social life, physical problems, and knowledge and financial deficits were challenging for the family caregivers, self-strength and supportive social networks helped them to compassionately care for their stroke survivor. Conclusions: The phenomenon of family caregivers providing informal care for stroke survivors was explicated as compassionate care, notwithstanding numerous difficulties. The findings motivate further research and strategies to minimize family caregivers’ burden and facilitate the positive aspects of caregiving to promote the health and well-being of both stroke survivors and their families.
Introduction Stroke is a life-changing event that affects not only stroke survivors but their family members as well.1 After the acute-phase management at a hospital, in settings where a formal post-discharge management is not established, as in Sri Lanka, family members and relatives take over the informal role of caring for stroke survivors at home.2 The family members, close relatives, friends, or neighbors who are not trained health professionals, but care for the stroke survivor at home irrespective of time limitations and without any payment, are termed “informal caregivers.”3 Informal caregivers experience life after stroke as “lives turned upside down.”4 Due to the abrupt onset of disability and the chronic, often unpredictable, nature of stroke recovery, caring for stroke survivors often puts a considerable burden on informal family caregivers.1,5 With constant and long-term informal care giving, family caregivers’ own needs were neglected, and family relationships were negatively affected.6,7 Because of heavy responsibility, uncertainty, worries, and restraints in social life,
CONTACT Carina Elgán
Received 8 July 2017 Accepted 19 May 2018 KEYWORDS
Family caregivers; informal care; nursing; Sri Lanka; stroke survivors; qualitative
informal caring was highlighted as a burden for family caregivers, leading to stress, anxiety, exhaustion, isolation, increased psychological morbidity, and reduced quality of life.6–9 However among those negative experiences, there are positive aspects of caregiving as well, that is, care recipients’ progress, strengthened relationships, feeling appreciated, and increased self-esteem, as reported in a systematic review conducted to uncover “positive experiences of caregiving in stroke.”9 In addition, appreciating and giving more meaning to life, feeling needed, useful, appreciated, and good about themselves were also reported in a study by more than 80% of stroke family caregivers.10 In Sri Lanka, the prevalence of stroke in the Colombo district was 37 per 1000 adults aged over 65 years.11 Moreover, due to the increasing population of elderly people, there is an impending epidemic of stroke in Sri Lanka.12 Because of the accessible and advanced health care in Sri Lanka, the survival rate of stroke patients is on the increase, leaving many stroke survivors with disabilities to be rehabilitated.13 Of the stroke survivors, 35–40% will experience moderate to severe impairment, and 10–15%
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© 2018 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group. This is an Open Access article distributed under the terms of the Creative Commons Attribution-NonCommercial-NoDerivatives License (http://creativecommons.org/licenses/by-nc-nd/4.0/), which permits non-commercial re-use, distribution, and reproduction in any medium, provided the original work is properly cited, and is not altered, transformed, or built upon in any way.
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will be bedbound at the end of one year.13 Therefore, stroke has become a leading cause of adult disability in Sri Lanka.12 Although a family member is expected to take care of the stroke survivor, the Sri Lankan family caregivers do not receive formal preparation for the caregiving from health care professionals at the discharge of the patient from hospital. Moreover, there is no well-established family support system at the community level in the Sri Lankan health care system.13 Therefore, family caregivers are left on their own to adjust to the full impact of care of their stroke survivor. In such a context, their experience of caregiving would be considerably different from caregivers of other countries. No study of informal caregivers experience has previously been done in Sri Lanka. It is envisaged that a study in this area would help gather information as well as gain more insight into informal caregivers’ experiences, especially since professional home care is yet to be developed in Sri Lanka. A deeper understanding of the informal caregivers’ experiences and situation could be used to develop routines to facilitate the care and rehabilitation at home. Thus, this study aimed to explore Sri Lankan family caregivers’ experiences of caring for stroke survivors.
Method A qualitative exploratory research approach, which aims to describe and clarify human experience as it appears in people’s lives,14 was used in the study. Adherence of the study to the COREQ guidelines15 was ensured. Ethical approval for the study was obtained from the Ethical Review Committees of University of Sri Jayewardenepura, (Ref. 41/15) and National Hospital Sri Lanka (Ref. AAJ/ETH/COM/2015). Sampling and participants Permission to access the stroke clinic at the National Hospital of Sri Lanka (NHSL) was obtained from the hospital authorities. With assistance from the nurse in charge, the first author identified stroke survivors who were discharged from the Stroke Unit of NHSL not less than one month earlier, with the diagnosis of stroke and having physical disabilities with hemiplegia. Informal caregivers, such as spouses, blood relatives, and relatives-in-law, who were 18 years or older and provided care at home for their stroke survivor with hemiplegia during most days of the week were identified as “family caregivers” and were given verbal and written information about the study and invited to participate in the study. Purposive sampling ensured the maximum variation by age, gender, educational level, duration of caring experience, and so forth, among the selected family caregivers (Table 1). Data collection Data collection took place from February to August 2016 at a convenient time for the family caregivers in a quiet place in their own homes. In-depth interviews were conducted by the first author in the Sinhala language. The interviews lasted between 35 and 55 min and were audiotaped with participants’ consent. The interview guide, revised through two pilot interviews, comprised open-ended questions. The participants were asked to describe their experience of being a family caregiver using
Table 1. Sociodemographic characteristics of participants. Characteristics of participants Age (range) Sex Ethnicity
Religion Highest educational level
Employment
Marital status
Relationship to the stroke survivor
Disabilities of the stroke survivor addressed during care Duration of experience as the family caregiver No. of other family members Monthly income of the participant in Rs
Total family income per month in Rs
Financial assistance/sponsorships
Descriptions 33–69 years Male Female Sinhala Tamil Moor Other Buddhist Hindu Christian Primary Up to ordinary level* Up to advanced level** Higher education Government sector Private sector Self-employed Not employed Unmarried Married Divorced/Separated Widowed Wife Son Daughter Daughter-in-law Walking Feeding Speaking Cognition 1 year 1.5 years 2 years 2.5 years Fewer than five More than five No income
