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PARENTS LIVING WITH HIV
Taking Care of Your Child and Yourself

A study published in the Journal of the American Board of Family Medicine stated that parents comprise about 20% of HIV-positive persons in the United States and are increasing in numbers as advances in medical care enable HIV-positive women and men to live longer, healthier lives and have successful pregnancies with low risk of HIV transmission to their babies.

The study went on to say that more than many other parents not living with HIV, those with HIV, particularly custodial parents (parents responsible for the child), may become overwhelmed by the simultaneous demands of multiple roles, including medical patient, breadwinner, and caregiver for HIV-positive family members.  HIV-positive parents may experience what is called "Role Overload" as different demands are piled up on each other and can't be easily accomplished given their available time and resources.  Parents with HIV, especially custodial mothers, may also be particularly vulnerable to role conflict; for example, their obligations to attend to their children, earn a living, and care for other family members, may make them unable to meet their own health needs.

The study examined mental health, substance use, coping ability, positive states of mind, and physical and mental health service utilization, among a large, diverse, HAART era sample of HIV-positive custodial parents, non-custodial parents, and non-parents. Grounded in the concepts of role theory, they hypothesized the following:

  • Custodial parents would demonstrate the greatest distress including depression, anxiety, perceived stress, and anger burnout, as well as the lowest coping ability and mental health and substance abuse treatment utilization. Custodial parents would demonstrate poorer medication adherence and attendance at scheduled medical appointments than non-custodial parents and non-parents. 
  • Larger numbers of total and co-resident minor offspring would be associated with greater distress and less service utilization. 
  • Non-custodial parents would demonstrate distress, coping ability, and service utilization intermediate between those of custodial parents and those of non-parents. 
  • Associations of parental status with distress and adjustment would be moderated by behavioral risk group and ethnicity, with women and ethnic minority group members scoring highest on distress and lowest on coping ability and treatment utilization.
  • Associations of parental status with distress and adjustment would also be moderated by current employment and welfare income, with parents reporting current employment income being less and those reporting current welfare income being more distressed.

This study basically theorizes that a parent who is HIV-positive, especially a custodial parent, is at higher risk for all sorts of physical and mental stress that can effect you negatively if you allow it to. No doubt, because you have much more on your plate than a parent who isn't HIV-positive. Here are a few considerations to get you thinking first about you, then about your child and last, the environment that surrounds both of you.

Put YOU first

You have a responsibility to be there for your child. In order to do that, your first responsibility is to take care of yourself.

When you're HIV positive, that means doing what it takes to maintain your physical and mental health both short-term and for the long haul. This can work wonders on your stress level! Parents with older children know that the problems kids have don't go away as they get older, they just get bigger, so your child is going to need you around for a long time.

For starters, when you begin your initial HIV regimen, make sure that you are not just physically but mentally and emotionally ready, because adherence - making sure you take your meds 95%-plus every time - is critical. If you have an addiction problem with drugs or alcohol, are suffering from depression, are a victim of domestic violence or have another issue that might get in the way of proper adherence, find help to deal with those issues and discuss them with your doctor. Today, there are other options if your first regimen fails but the options are not infinite so your best shot is the first shot. Make sure you're ready to start and continue!

This may sound a little crazy considering that you already have a lot of demands for your available time but next, to keep you feeling good, to increase your overall energy and add years to your life start and maintain a healthy diet and include exercise. Diet and exercise is good for both you and your child. The exercise aspect can actually become a bonding experience if you include your child in the activity. Remember, exercise doesn't have to be grueling iron pumping sessions at the gym, it can be fun like riding a bike with your child or just going on walks.

Then your child

Just like you have become educated about HIV, when you feel the time is right, educate your child about HIV. You know your child better than anyone and you should decide at what age your child's maturity level is where it should be to discuss your HIV status with him or her.

Education is vital especially in younger children. Just explaining that you are HIV positive is not enough. There is more wrong or bad information out there than right and good information and unfortunately the uninformed usually love to have the loudest voice so make sure your son or daughter knows what's right and that's what comes from you. This is an area where you have control if you take it so by all means do! Explaining your HIV status to your child can also be a huge weight off of your shoulders which in turn, can decrease stress and anxiety. If your child is mature enough to understand your condition, they may be able and willing to take some of the responsibilities off of you as well.

Your environment

You're a parent of a child and you happen to be HIV positive. It's your business and nobody else's. That is absolutely right.

The HIV stigma still exists and there is misinformation or just lack of information among people who are uneducated so they fear it. This fear can be transferred to your child even though your child is not HIV positive, manifesting in situations of alienation or discrimination for your child.

The thing to think about here is nearly exactly the same as at work. Just remember that outside of the workplace, there are not the same laws to protect you.

Be careful who you disclose your HIV status to. Make sure that if you do feel the need to disclose your status for whatever reason that it is told in confidence to someone you know and can trust.

Look for support

This is just a start. If you feel you need more help and information, ask about parenting support groups at your local AIDS Service Organization or Community Based Organizations. In larger cities, HIV hotlines might also be able to offer suggestions.

 

Copyright 2016, Positive Health Publications, Inc.


This magazine is intended to enhance your relationship with your doctor - not replace it! Medical treatments and products should always be discussed with a licensed physician who has experience treating HIV and AIDS!