Stroke is a major non-communicable disease. It is the most common cause of mortality and a significant cause of adult disability. Stroke may also compromise cognitive, mood, functional abilities and quality-of-life. It also results in caregiver burden and economic stress at individual, familial and national level (Sujata & Shyamal Kumar [2013]). Stroke creates a burden on the whole family due to joint family system in Pakistan, where parents, spouse and children and other in laws live together under one roof.
Financial difficulties are compounded by limited employment opportunities for stroke survivors who are aged or sole earners in the family, the possibility of job retrenchment because of disability or long absenteeism or both, and continuing expenses for medicine and physiotherapy. The financial worries were more common among slum dwellers and less educated CG, possibly because of limited financial capability (Das et al. [2010]).
Factors associated with caregiver burden that can lead to caregiver stress include "the relationship quality between caregiver and patient, the patient's cognitive ability, behavioural and psychological symptoms displayed by the patient, caregiver gender, and adverse life events' (Campbell et al. [2008]).
Stroke causes major illness burden on the family through different means, financial social, psychological ways. As soon as the patient develop stroke they are taken to the nearby clinic or hospital either government or private. So the medical care facility charges, frequent follow-ups and transportation charges all leads to continuous source of mental and financial stress for the families due to low socioeconomic state of people in Pakistan.
We choose to use MCSI index as it assesses the 5 elements in care giver strain. These include physical, psychological, social, personal and financial. Scoring is two points for ‘Yes’ and one for ‘Sometimes’ and zero for ‘No’. The higher the score, the higher the level of caregiver stress.
In our study, 70% of the caregiver comprises of male members, who were experiencing the stress as sole figures in the family. Due to family setup in Pakistan 89% sons were caregivers as daughter if married were living with their husband's family. Out of 30% female, 57%were unmarried daughters.
Family caregivers may be motivated to provide care for several reasons: a sense of love or reciprocity, spiritual fulfilment, a sense of duty, guilt, social pressures, or in rare instances, greed (Eisdorfer [1991]). Caregivers who are motivated by a sense of duty, guilt, or social and cultural norms are more likely to resent their role and suffer greater psychological distress than caregivers with more positive motivations (Pyke & Bengston [1996]).
Caregivers face many obstacles as they balance caregiving with other demands, including child rearing, career, and relationships. They are at increased risk for burden, stress, depression, and a variety of other health complications. The effects on caregivers are diverse and complex, and there are many other factors that may exacerbate or ameliorate how caregivers react and feel as a result of their role (Brodaty & Donkin [2009]).
The effects on caregivers are diverse and complex, and there are many other factors that may exacerbate or ameliorate how caregivers react and feel as a result of their role (Lo Giudice et al. [1999]).
Caregivers often lack social contact and support and experience feelings of social isolation (Lo Giudice et al. [1999]).
Caregivers tend to sacrifice their leisure pursuits and hobbies, to restrict time with friends and family, and to give up or reduce employment (Leong et al. [2001]; Brodaty & Hadzi-Pavlovic [1990]). Caregivers who are more satisfied with their social interactions show fewer negative psychological symptoms (Lowery et al. [2000]). Interventions may assist. One psychosocial intervention significantly increased the number of support persons for caregivers, their satisfaction with their support network, and the assistance they received with caregiving, compared with controls (Serrano-Aguilar et al. [2006]).
Our study has some limitations: Due to the lack of prior local studies in this subject, no specific statistical assumptions were made and the sample-size was arbitrarily determined; the small sample size needs to be kept in mind while interpreting the findings. Secondly, the care givers were selected randomly through the record available in hospital, so it cannot be applied to the whole population of Pakistan, further study is required.
In our society and culture, joint family system helps in dividing the burden and supporting the patients together to improve the environment and managing the condition.
Indeed there is evidence that intervention targeting caregivers can decrease their level of stress, depression and anxiety (Coon et al. [2003]; Gerdner et al. [2002]; Gitlin et al. [2003]) and increase their sense of control and their ability to cope with the burdensome experience of care giving: (Lowery et al. [2000]) the potential benefits of person-cantered intervention require further evaluation (Coon & Evans [2009]).
