SOCIAL AND FAMILY SUPPORT FOR ARTHRITIS PATIENTS

Dr Vivek Billampelly

Man has always sought the presence of a close and dear person in situations of distress. It is a security need for each of us. For a patient of arthritis the chronic, painful, deforming and disabling nature of the illness needs great support family and friends to help the person cope up during various phases of the disease.

The Significant others
In the life of any patient it is not only the patient who has to fear the brunt of any disease but also the near ones. The person who accompanies the patient and who takes care of the patient is considered to be the ‘significant other’. When diagnosis is first disclosed to the patient there are reactions which can be predicted. They may begin with a sense of shock followed by anger, denial, blaming, and depression and finally acceptance in all these phases if a person is alone coping becomes difficult, as opposed to when there is someone to share the emotional burden of the disease. The presence and support of the ‘significant other’ forms an important aspect in the disease progression, treatment compliance and rehabilitation. It has been proven that apart from the natural course of the disease, emotional support from the spouse and problem-focused support from the medical professionals was perceived by the patients as being most helpful. In contrast, an uncooperative partner and authoritative medical professionals were perceived as unhelpful.

As a family member of a patient with arthritis one must know what it means to be supportive. Seeing a person you love suffer can be most distressing and one is left confused and incapacitated. Thus one can start giving support by these helpful gestures.

1. Give the patient opportunity to express feelings and concerns- We tend to suppress negative feelings and imaginary bad outcome prophecy which our patient might express in times of pain. This inability to handle difficult, painful; or emotional situations is not unusual. It is necessary to allow the patient to feel vulnerable and be there if the patient wants to cry or vent out emotions. There may be issues related to quality of life, livelihood, disability and nursing. If all these perceived problems are addressed the person does feel some relief.
2. Receiving encouragement, hope and optimism- On hearing a diagnosis of a chronic debilitating disease a person may think negatively. Giving hope and reassurance immediately is not palatable to the patient. Give some time and then instill hope and narrate success stories of how people have been able to get on top of situations and lead fruitful lives.
3. Recei v ing wel comed adv i ce and information- When the symptoms lessen and pain reduces, the patient is convinces that the disease progress can be controlled. This is also the time the patient is open to advice from experts and support group members. If the patient is in a positive frame of mind then newer advances and treatment options could be discussed. For the family members this also is the most appropriate time for health counseling. The benefit of such helpful advice is to reduce the different amount and types of arthritis related stress. This kind of support leads to effective coping and can help the patient understand the problems faced and can increase motivation. The support also has the advantage of enhancing self esteem and encourages positive health behaviors and minimizes illness.

Unhelpful support is the result of misunderstood needs of arthritis patients and may lead to negative coping behavior, anger, resentment and non-compliance. This kind of support can be listed like-

1. Minimizing illness severity- The caretakers may feel that if they mention that “It is a small disease”, “You are feeling better” this may have a soothing effect but actually it isolates the patient more and the patient may withdraw in a shell and not express what actually happens. This should be avoided.
2. Pity or over solicitors attitudes- Many patients do not like their independence to be restricted by a disease and exert their autonomy by doing their tasks of daily living on their own and are not very comfortable when near ones fuss over them. It is best to let them do the activities which they are comfortable doing on their own.
3. Pessimistic commentsare to be avoided at all costs. Patients too have access to the internet and do feel let down when they are given a grim picture of the prognosis. This de-motivates them and leads to negative behavior. This will stop the person close from seeking hell. Friends and family can provide a safe outlet for expressing negative emotions concerning the patients and the chronic everyday strains that the illness presents.

Hence family and social support has a very positive role in the outcome of any chronic disease especially arthritis.