Caregivers year three lecture.pptx JJBJGIO

CBU CBU

1. Copperbelt University SOM Society and Medicine Communicating to Caregivers Year three students Term two Dr Mutale Chileshe-Chibangula 10 th February 2016

2. “Involvement of families and caregivers improves the quality of life for the patient, eases caregivers’ burden, encourages adherence to treatments and increases patients’ ability to cope with the illness” (Goldberg & Rickler 2011:41 ) Caregivers are essential partners in the delivery of complex health care services Although an essential part, they get very little help from health care professionals in managing their tasks Physicians are often unaware of the strengths and weakness of caregivers Caregivers are hidden patients themselves with serious adverse physical and mental health consequences Why learn about caregivers

3. Who is a formal or family caregiver? Family caregiver Informal caregiver

4. A " family caregiver " is anyone who provides any type of physical and/or emotional care for an ill or disabled loved one at home. Loved ones in need of care, could be suffering from a physical or mental illness, disability, substance misuse, or other conditions. A caregiver is an individual who provide ongoing care and assistance, without pay, for family members and friends in need of support due to physical, cognitive, or mental health conditions. Definitions There are several definitions

5. An unpaid family member, friend, or neighbour who provides care to an individual who has an acute or chronic condition and needs assistance to manage a variety of tasks, from bathing dressing and taking medications to feeding. Family or informal caregivers are persons responsible for the physical, emotional and often financial support of another person who is unable to care for him/herself due to illness, injury or disability. The care recipient may be a family member, life partner or friend. Definitions cont.

6. Refer to the caregiver as informal caregiver An informal caregiver is an unpaid family member, friend, or neighbour who provides physical, emotional and often financial support to an individual who is unable to care for him/herself due to illness, injury, disability or other conditions; and needs assistance to manage a variety of tasks, from bathing dressing and taking medications to feeding Definition here ….

7. Informal vs formal caregivers Informal caregiver Formal caregiver Occurs in relationship context shaped by affective bonds Unpaid Usually unplanned and unspecified May be effectively on-call constantly Usually only one person cared for Tasks include emotional support, direct service provision, liaison with formal services, and financial assistance. Professional relationship shaped by code of conduct Paid Planned and regulated Defined hours May have caregiving duties towards a number of recipients Tasks of a more specialised, restricted range of caregiving activities

8. There are two types of informal care givers Primary caregiver – one who assumes the most responsibility in caring. In some cases this person makes all or most of the decisions, although others may help in this process. Secondary - These are usually other family members, sometimes friends, who have an interest in the well-being of the patient Types of caregivers

9. Caregivers are all around us. Spouses, adult children, other family members, partners, friends and neighbours all serve as unpaid, informal caregivers. Studies have shown that caregivers are all ages and come from all walks of life, although in recent years the age of both caregivers and care recipients have increased. More than half of all caregivers are between 18 and 49 years old, but there’s been a recent shift upwards and downwards in caregivers who are between 50 – 70 and 9-17 respectively . Majority of caregivers are women Primary caregivers

10. Tasks assigned to informal caregivers may include but not limited to: Psychological , social and spiritual care financial and administrative tasks Monitor medication – administer at the right time and ensure its taken correctly Assist with basic needs - basic needs may include feeding, bathing , grooming and toileting . Mobility- such as walking and getting in or out of bed Supervising and monitoring the patient Companionship liaising with formal care systems Tasks performed by caregivers

11. One of the task – administering medication

12. Impact of caring on caregivers There are both positive and negative impacts

13. Important positive aspects of the caregiving role include Pleasure to the care recipient , Maintaining the dignity and maximising the potential of the care recipient Strengthens and enhances relationships Developing personally - enables the caregiver to learn new skills Enhanced self-esteem - makes them feel good about themselves, as if they are needed Gives meaning to their lives Positive impacts of caring on caregivers

14. Financial burden : costs incurred to provide immediate care (gloves, medicines, water , etc .) and user fees for accessing health care services, transportation costs, rising food costs, and others. Emotional: Anger , sadness or crying spells, irritability or short temper , worry or anxiety, discouragement, trouble relaxing, emptiness or loss of direction, depression, stress, looking for magic solutions, inability to concentrate, frequent mood swings . Under emotion stigma and discriminations Negative impacts of caring on caregivers

15. Physical: Headaches, appetite or weight changes, feeling tired all the time , changes in sleep habits, muscle aches, getting sick often, stooped posture , sweaty palms, neck pain, weight gain or loss . In the Zambian context the physical also includes – lack of food, privacy, a shelter to rest or cook. Social: loss of friends and reduced social life, isolation, Negative impacts of caring on caregivers cont.

16. May also be at risk for encountering abuse from caregivers when caregivers have pronounced levels of depression, ill health, and distress Studies show that patients may experience emotional impacts (worry, anxiety , sadness, or depression) when caregiver is experiencing emotional side effects. This in-turn negatively affects the recovery of the patient Neglect (medicines not administered) when primary caregiver falls sick Impacts on patients

17. Caregiver and patient pyramid

18. Emotional stages of care giving There are several stages in the care giving journey these will be discussed further in future. These are extremely important because they impact directly on the patient

19. Remember caregivers are sometimes referred to “secondary patients” who need and deserve protection and guidance. Recognise and value care work - it is important that there is a recognition of who the carers are and an understanding of the services they provide Provide information - Access to external support - link caregivers with support organisations, and source respite care , information about illness just enough for them to have an idea of what is going on, treatment and care. The information should include what to expect – symptoms of patient and how to deal with them Lack of information is a source of frustration in many care givers, raises anxiety and fear Your role as a physician

20. Counselling - If and when possible a simple talk on managing emotional distress for their loved one and for themselves . Empathy – show some sympathy and empathy with a full understanding of the challenges of caregiving Kindness and compassion - a simple smile, encouragement when you can give it Communicating with caregivers (will be covered in the next class) Remember there are many other roles that you can perform towards the caregiver but always your first responsibility is the patient and your communication with the caregiver is only done in the best interest of your patient. Please apply the ethical principles to your practice so that you do not cross the line. Your role as a physician

21. Informal caregivers receive little direct attention by service providers in Zambia However, there are an important factor in the sickness and recovery of a patient Caring has both negative and positive impacts on informal caregivers The negatives out weigh the positives There is need for physicians to pay attention to caregivers and provide information where necessary. Conclusion

22. Beach, S. R., Schulz, R., Williamson, G. M., Miller, L. S., Weiner, M. F. &Lance, C. E. 2005. Risk factors for potentially harmful informal caregiver behaviour. Journal of the American Geriatrics Society. 53: 255–261. Bond, V., Chileshe , M., Sullivan, C. & Magazi , B. 2009. The converging impact of tuberculosis, HIV/AIDS, and food insecurity in Zambia and South Africa . Washington: International Food Policy Research Institute (IFPRI). [Online]. Available: programs.ifpri.org/renewal/pdf/ZambiaSAFinalReport.pdf   Chileshe , M. & Bond, V. 2010. Barriers and outcomes: TB patients co-infected with HIV accessing antiretroviral therapy in rural Zambia. AIDS Care .22 (1) 51-59.   Chileshe , M. 2008. Tuberculosis, HIV, food insecurity, and poverty in rural Zambia: an ethnographic account of the Southern Province . Cape Town: University of Cape Town. [Online]. Available: http://books.google.co.za/books?id=bw0GtwAACAAJ&hl=en References

23. Cornman -Levy, D., Gitlin , L. N., Corcoran, M. & Schinfeld , S. 2001. Caregiver aches and pains: The role of physical therapy in helping families provide daily care. Alzheimer’s Care Quarterly, 2 , 47-55. Fredman , L., Cauley , J. A., Hochberg, M., Ensrud , K. E., & Doros , G. 2010. Mortality associated with caregiving, general stress, and caregiving-related stress in elderly women: Results of Caregiver-SOF. Journal of the American Geriatrics Society. 58: 937-943. Gitlin , L. N. & Schulz, R. (2012). Family caregiving of older adults. In Public Health for an Aging Society. Prohaska , T.R., Anderson, L.A & Binstock , R.H. (eds.). Baltimore, MD: Johns Hopkins University Press. pp. 181-204 Goldberg, A. & Rickler , K. S. 2011. The role of family caregivers for people with chronic illness. Medicine & Health . 94(2):41-42 Kim H., Chang M. , Rose K. & Kim S. 2012. Predictors of caregiver burden in caregivers of individuals with dementia. Journal of Advanced Nursing 68(4):846–855. Nolan, M., Grant, G & Keady , J. 1996. Understanding family care. Buckingham: Open University Press References cont.