Hearing the Unheard: Exploring the Caregiver Perspective of
Mental Illness
“...Of course, an ordinary passerby would think my rose looked just like you. But my rose, all on her own, is more important than all of you together, since she's the one I've watered. Since she's the one I put under glass, since she's the one I sheltered behind the screen....Since she's the one I listened to when she complained..... or even sometimes when she said nothing at all. Since she's my rose...
- Antoine de Saint-Exupery
According to the World Health Organization, more than 450 million across the globe suffer from mental illnesses. What is woeful is that with such staggering numbers of people who actually do need clinical and psychosocial interventions, the number of mental health care providers and services catering to them are appallingly low. In India itself, the ratio of mental health care providers to the number of people who need their help is alarmingly skewed, with only 2% of the total number of psychiatrists who are actually needed (in the second most populous country like ours) being available to the people in need 1 With such a deficiency in mental health care providers, the huge responsibility of taking care of such people in need fall on the family members, who take on the role of caregivers.
One of the definitions of caregiving has been that of ‘interactions in which one family member is helping another on a regular basis with tasks that are necessary for independent living’. 2 Becoming a carer involves not only helping the person with physical tasks but also supporting and catering to their psychological and emotional needs. It is the weaving together of these elements that can make caregiving such a challenge. Despite their critical role in the caretaking of people with physical, psychological, emotional as well as financial support, the importance given to caregivers has long been underestimated and marginalized though.
In many families, caregivers live with the notion that they are responsible for the family member's mental illness, a false belief that can lead to intense feelings of guilt and shame and the stigma that gets associated with it. Caregivers can also experience "stigma by association" through the stigma faced by a family member living with mental illness and as a result of the stigmatizing behaviour from friends, health care providers and the media.
Although attitudes towards caregivers are now changing and their role is increasingly being recognized as critical to the recovery and well-being of people living with mental illness; more needs to be done to support them, both by acknowledging and addressing their needs, and by reducing the stigma they experience.
Moderators of the Impact of Caregiving
In order to alleviate the stress associated with caregiving, there are a few factors that can help in moderating the stressors that come in way of caregiving. For instance:
Socioeconomic factors
Mental health care and the impending costs it brings, makes it tough for the caregivers and families to help support the needs of the person in need. In a lot of families, the caregivers are also compelled to either leave work, or compromise work hours in order to ensure the support and safety of their loved one in need. In such cases, it leads to a huge financial strain on the family. A good financial support and helpful work policies can thus go a long way in moderating the financial and socio economic strain on the caregivers.
Social support
Social support is of immense importance to help caregivers feel heard and helped. It works as a platform where the caregiver can speak about his/her emotions, feelings and worries and can have the assurance of being validated and supported. Social support can be provided both informally by family, friends and relatives as well as professionally through counsellors, psychiatrists, religious institutions etc. Research indicates that caregivers who reported having larger informal support networks reported greater life satisfaction, greater perceived support from family and friends, and less resentment and anger than did caregivers reporting smaller informal support networks. 3 There is also evidence that it is the quality of social support rather than the quantity available that is most important. 4
Coping strategies
“The term coping refers to the things people do (acting or thinking) to increase a sense of well-being in their lives and to avoid being harmed by stressful demands”. 5 Coping strategies differ from person to person. It primarily depends on the personality type of the individual, the relationship of the caregiver to the care recipient as well as the issue and intensity of the care recipient's disability. In general positive coping styles such as 'proactive coping' (anticipating a problem and preparing how one is going to deal with it), social coping (seeking social support from others) and emotion-focused coping (in which the person concentrates on deriving meaning from the stressful experience) are healthy coping strategies that effectively help caregivers deal with their issues.
Sense of mastery or Self-efficacy
Self-efficacy or Mastery is a person’s belief in his or her ability to succeed in a particular situation. These beliefs that one has is what determines and influences thoughts, behaviours and feelings. Enhancing a sense of mastery or self-efficacy empowers individuals and helps rebuild strength and brings about a perceived sense of control over their lives. It is therefore a particularly sustainable type of support that caregivers can use to help reassure themselves of the control they have over their lives and the abilities they have to deal with and overcome hurdles.
A study done on caregivers and understanding family care 6 revealed that there were a few coping strategies that seemed to benefit the caregivers the most:
Coping Strategies used by Carers
The nine most popular strategies, found to be very helpful by over 50% of carers, were:
- Realising that the person you care for is not to blame for his or her position
Taking life ‘one day at a time’
Finding out as much as you can about the problem
Keeping a little free time for yourself
Realising that there is always someone worse off than yourself
Realising that no one is to blame for things
Keeping one step ahead of things by planning in advance
Getting as much help as you can from professionals and service providers
Talking over your problems with someone you can trust
Increasing Positive Health Outcomes for Caregivers
It is a pressing need that the mental health of caregivers is addressed. In order to achieve this, it is essential that:
Favorable work policies such as flexible work hours and better financial crisis support be provided
Better awareness of mental illness and specific guidelines of “Dos” and “Don’ts” be provided so that the caregivers have a sense of structure and security in terms of how does one deal with an issue that can otherwise induce fear and panic in the caregiver
Accessible family support groups and caregiver forums be more pervasive so that caregivers can avail of a platform where they can be heard and be supported both psychologically as well as emotionally
Provision of respite care for the caregivers be made more affordable and accessible
Interventions which help in identifying caregiver strengths and reinforcing them be worked out so as to give the caregivers the motivation and positive affirmation that they rightly so deserve
With the deficit in mental health care services, ensuring family caregivers are healthy and efficient to provide care is therefore key to maintaining our nation’s long-term care system. Improved recognition of caregiver needs must thereby be considered a public health priority and with the aging and rising longevity of our population, this issue will only grow more important in the coming decades.
References:
1 Vikram Patel: Mental health for all by involving all.Posted Sep 2012 • TEDGlobal 2012
2 Zarit, S. H. & Edwards, A. B. (1999) Family caregiving: research and clinical intervention. InPsychological Problems of Ageing: Assessment, Treatment and Care (ed. R. T. Woods), pp.153–193. Chichester: John Wiley & Sons.
3 Schofield H, Bloch S, Herrman H, Murphy B, Nankervis J, Singh B 1998, Family caregivers. Disability, illness and ageing, Allen & Unwin, St Leonards, NSW.
4 Deal A G, McWilliam R A, Cooper C S & Trivette C M 1989, ‘Strengthening families to day for success tomorrow: The family, infant and preschool program.’ In J M Levy, P H Levy & B Nivin (Eds.), Strengthening families. New directions in providing services to people with developmental disabilities and their families (pp. 267- 279). Young Adult Institute Press, USA.
5 Turnbull A P & Turnbull H R 1993, ‘Participatory research on cognitive coping. From concepts to research
planning’, in A P Turnbull, J M Patterson & S K Behret (eds) Cognitive coping, families, and disability, Paul. H. Brookes Publishing Company, Baltimore, pp 1-14.
6 Nolan M, Grant G & Keady J 1996, Understanding family care, Open University Press, Buckingham.
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