Chapter 1
Solving Problems Using the Home Care Guide for HIV and AIDS
This book is for family, friends, and volunteers who are caring for persons with HIV/AIDS at home. It gives the information they need to solve caregiving problems while working cooperatively with a team of health professionals, such as nurses, physicians, and social workers, who are members of a hospital, outpatient, home health, or hospice team.
The book was written and edited by nurses, physicians, social workers, and psychologists who work in HIV/AIDS care, with help from family caregivers and volunteers.
How the Book Is Organized
Each chapter is a plan on how to deal with problems that may occur when one is providing care at home. Each chapter covers five major topics:
1. Understanding the Problem: What the problem is, who is most likely to have it, when they might have it, what steps can be taken to help, and what is a realistic goal when dealing with the problem
2. When To Get Professional Help: When to call immediately, when to call during office hours, what information to have ready when you call, and what to say
3. What You Can Do To Help: How to deal with the problem and how to prevent the problem from occurring
4. Possible Obstacles: Misinformation and attitudes that can interfere with carrying out the plan and how to deal with it
5. Carrying Out and Adjusting Your Plan: How to check on whether you are making progress, how fast to expect change, and what to do if the plan isn't working
The chapters, called home care plans, in the Home Care Guide for HIV and AIDS deal with only the most common problems of persons with HIV/AIDS and their home caregivers. For other problems, you can use these chapters as models for the kinds of information you need to have for effective problem solving.
Topics with an arrow (
) in front of them are actions you can take or symptoms you can look for.
How To Make the Best Use of the Home Care Plans
Read key information headings first
The second page of each chapter is an overview, or a road map, of the contents of that chapter. In the chapter, topics are summarized in boldface type, with information about the topic in regular type. An arrow appears in front of topics that are actions you can take or symptoms you should look for. By first reading the overview page, then the section "Understanding the Problem," and then just the boldface type (especially when there is an arrow in front of it), you can quickly and easily understand the problem and how you can deal with it. You can read the text, which is in regular-sized type, later when you need to understand the reasons for the recommendations in the chapter.
Read chapters before problems develop
By reading the chapters, or plans, before problems develop or become severe, home caregivers will be prepared when they do happen. Because some chapters include information on how to prevent problems, home caregivers may even prevent some problems from occurring. Also, most problems are easier to solve when they are just beginning, so early intervention can prevent problems from becoming serious.
Re-read chapters when problems persist
The chapters in the Home Care Guide for HIV and AIDS contain many ideas and strategies for dealing with caregiving problems, and it is hard to remember them all. Therefore, it is a good idea to re-read the chapters about problems that persist-to be sure that you are doing everything you can.
Use the home care plans as part of an orderly approach to problem solving
The Home Care Guide for HIV and AIDS by itself does not ensure effective problem solving. You need to develop your own plan to carry out the recommendations in this guide. The next section discusses how to solve problems using the home care plans.
Solving problems using the home care plans
Four key approaches that will help you to be effective in solving caregiving problems and to make the best use of the home care plans in this book:
Being creative in dealing with obstacles.
Being both optimistic and realistic in involving the ill person in the plan.
Developing an orderly plan.
Making effective use of expert information-the kind of information that is included in the Home Care Guide for HIV and AIDS.
You can remember these four key approaches by thinking of the word COPE (which means to succeed in solving problems):
C for Creativity
O for Optimism
P for Planning
E for Expert information
Research has shown that people who use the four COPE techniques are better problem solvers. Research has also shown that people who use the four COPE techniques experience less stress when dealing with problems.
These four approaches, in detail, are as follows:
Be CREATIVE
As a caregiver, you will be constantly challenged to think creatively. Each person is unique, and each problem is unique. Therefore, you must be creative in adapting your plans to fit each unique situation.
Most plans will run into obstacles or roadblocks. Overcoming these obstacles will also challenge your creativity. When your plans do not work out as you had hoped, you should see this as a challenge to your creativity.
Here are four ways of helping yourself think creatively when dealing with obstacles:
1. See the obstacle from someone else's point of view. Put yourself in the shoes of another person who can look at your problem differently and ask yourself what he or she would do.
2. Ask for advice from others. Ask other people who have faced similar problems for ideas on how to get around your obstacle.
3. Determine how important or serious the obstacle really is. Does this obstacle really interfere with your plan? Sometimes you can ignore or work around an obstacle and still carry out your plan.
4. Brainstorm. Think of as many ideas as you can. Do not worry if the ideas seem unrealistic, or even silly. Make the longest list that you can. Then review it to see if you can combine ideas into even better ideas. Finally, go over the list and select those ideas that will help the most and are feasible.
Have an OPTIMISTIC attitude while being realistic about your problems
Being optimistic means having a positive attitude and expecting to succeed. This is important for both the people with HIV/AIDS and their caregivers.
One of the most important ways of helping the person you are caring for is to have a positive attitude. People who have HIV/AIDS need encouragement, and they need help noticing good experiences. The home care plan "Creating and Maintaining Positive Experiences" (Chapter 19) offers suggestions on how to provide this encouragement. At the same time, it is important to be realistic about the seriousness of the problems of the person you are caring for, so that he does not feel that his problems are being ignored or belittled.
If you think that there is a good chance of succeeding, you will do your best to carry out your plans. If you think the problem is hopeless and that nothing will work, it will be hard for you to do your best, and the people who are around you will also become discouraged. If you do feel discouraged and negative, then get help from someone who has a positive attitude and who is a good problem solver. This could be the person you are caring for, friends or family members, or health professionals. Read the home care plan "Coping with Depression" (Chapter 17) for help in controlling negative thinking, because negative thinking tends to interfere with effective problem solving.
Do things that you enjoy to maintain a positive outlook, even when you feel under stress. Read the home care plan "Caregiving" (Chapter 2) for ideas and guidance about how to deal with your feelings as a caregiver. Also, the home care plans "Creating and Maintaining Positive Experiences" (Chapter 19), "Getting Companionship and Support" (Chapter 20), "Coping with Depression" (Chapter 17), and "Coping with Anxiety" (Chapter 18) apply as much to you as they do to the person with HIV/AIDS. Read and use those chapters for yourself. They will help you to have the emotional strength you need to keep a positive attitude and to solve the problems that come with caregiving.
Develop an orderly and systematic PLAN
Problem solving is done best in an orderly, systematic way. This means that you should do the following:
Be clear about what is happening. Separate facts from opinions.
Read the home care plan and other written information about the problem. Ask health professionals for recommendations. Think back over your own experiences for ideas and strategies that worked in the past. Ask what you can reasonably hope to achieve.
Compare the advantages and disadvantages of the different approaches you could take, and develop a strategy that will give you a reasonable chance of achieving your goal.
Think of what could interfere with your plan, and think creatively about what you can do to deal with those obstacles.
Set deadlines for yourself to make sure things get done. Keep records of how the plan is working. This will help you to monitor progress and to explain to professional staff what you have done and what the results were. If the plan is not working or you are not having as much success as you had hoped, ask yourself if you are expecting change too fast and whether you should adjust your goals. Then repeat the problem-solving steps to develop a new plan, paying special attention to maintaining a positive attitude and expecting success.
Get EXPERT INFORMATION about the problem and what you can do about it
The foundation for good problem solving is knowledge about the problem and how to deal with it. The Home Care Guide for HIV and AIDS contains the information you need to solve 22 common problems in home care. To deal with problems other than those discussed in this book, you should try to obtain information on
1. Understanding the Problem: What the problem is, who is most likely to have it, and what can be done to help
2. When To Get Professional Help: When to call for help immediately, when to call during office hours, and what information to have ready when you call
3. What You Can Do To Help: How to deal with the problem and how to prevent it
4. Possible Obstacles: What can interfere with carrying out your plan
5. Carrying Out and Adjusting Your Plan: How to check on whether the plan is working and what to do if it is not
A note about spiritual problems
After being diagnosed with HIV/AIDS, and especially if death approaches, both the people who have this disease and their caregivers often ponder spiritual questions:
- Where did I come from?
- Why am I here?
- What is really important in my life?
- What happens after death?
These are questions that each person must answer within the framework of his or her beliefs, values, and experiences. Therefore, there is no chapter in this book on solving spiritual problems. However, a discussion on how to support someone who is pondering these very important issues is given in the chapter "Caregiving" (Chapter 2).
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