Ian is a Senior Orthopedic Officer, and a palliative care specialist currently working at Fort portal Regional Referral Hospital.
Chronic illnesses affect families in different ways and children aren't spared. In many instances, children end up taking over responsibilities, like caring for a parent, a sibling, or another relative who is sick. Unfortunately, this is quite common in many low-income homes.
Research has demonstrated that many children have regular caregiving responsibilities for family members with chronic illnesses. A national survey of young caregivers in the United States estimated that 1.4 million children and adolescents are involved in some type of caregiving.
In situations of a sick parent, older teenagers may also take on responsibilities of heading the household including financial obligations. This enormous responsibility affects the social and psychological well-being and development of the child.
For example, the child often foregoes age-appropriate needs like interacting with peers. They may also miss school or drop out completely. In extreme situations, they may have to seek some form of employment to deal with the financial needs in the home. The child must mature much faster and learn to cope with the changes and the new responsibilities. The caregiver role restricts their freedom to be playful as they take on demanding adult responsibilities.
There are a number of effects of having a teenager or a child caring for a chronically sick relative. In the long run, The patient's quality of life and clinical outcome is affected directly or indirectly.
Effect on the Patient's Quality of Life
When caring for patients with chronic illnesses at home, palliative care has a big role to play. But in the absence of a reliable adult caregiver, many interventions like pain control may not be effective in improving the patient’s quality of life. The commonest effects on the patient’s well-being include;
Poor Adherence to Medication
Out of fear or respect, the child may be unable to influence a stubborn adult patient to adhere to treatment schedules. This results in inconsistent use of medication and diminished therapeutic outcomes. For example, The WHO principles of pain control in cancer patients dictate that analgesics should be given 'by the clock' to achieve sustained pain relief. To achieve this in a patient incapable of self-administration of medication, a reliable caregiver is necessary. The younger the child, the less likely they are to understand and adhere to treatment instructions.
A Depressed Patient
If the patient is an adult, they will not freely express their fears and concerns to a child. This lack of venting can lead to psychological distress and result in depression and other mental disorders. A sick parent will be more psychologically distressed if their child is out of school to provide care. He or she may feel guilty for being the reason why the child is not progressing at school. Feelings of abandonment by other family members are also common.
Difficulty Affording Medications and Meals
Situations in which children are caregivers are also often situations of extreme poverty. This means that many of the costly disease-modifying treatments for the patient’s illness will be out of reach. The child will not be able to adequately provide financially. Therefore, proper meals may as well be difficult to come by. The absence of such treatments negatively affects the patients’ health and ultimately the symptom burden on the patient becomes much bigger.
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Failure to Recognize and Deal With Emergencies Appropriately
This may depend on the age of the child and previous experiences. Older children are more likely to better deal with emergencies. Delay to recognize and respond to emergencies can lead to a preventable worsening of an illness or even death.
How to Support Teenagers in Caregiving Roles
Health professionals have a role to play in supporting children with caregiving responsibilities. Overcoming exhaustion is crucial for caregivers to help them manage. But it is even more important when the caregiver is a child. We must understand that teenagers are children and that we should support them as they are. It is unfair to expect that teenagers will behave as adults.
I personally find the tips outlined below to be helpful in supporting children through the caregiving role. I must add, however, that these are all from personal experience.
Identify and Recognize How Having a Child as a Caregiver Affects the Patient
Recognizing these effects is key to determining the best approach for addressing them. Each situation will be different and therefore the clinical implications of having a child caring for a patient can vary. Some of the effects are listed above, but the list is not exhaustive. These effects may depend on the age of the child, how much self-care the patient is capable of, the complexity of the disease and symptoms, and the complexity of available treatments. Generally, a younger child with a very dependent patient is bad for the patient's clinical outcomes. Health professionals need to identify the problems unique to each situation and address them appropriately.
Provide Constant Reminders
Children are playful – and rightly so. This means that they need constant reminders to carry out their duties and obligations. Health professionals need to make extra effort to help children remember their tasks. Even when the child looks responsible, you need to remind them. This is particularly important for adhering to medication schedules. If possible, draw out schedules of specific tasks on a table and help them study them. Let this be in a language they understand. If they can read and write, the better. Make time to explain the importance of each item in the table. Be patient, because it will take time for them to master it. Don’t give up. Over time, they will get into a routine and carry out those tasks regularly.
Make Treatment Instructions as Simple as Possible
Treatment instructions can be difficult to understand and follow, even for adults. Health professionals need to make time to explain details about caring for the patient in the simplest language possible. Where possible include visual aids like simple drawings of times of the day when certain treatments are to be given. Make yourself available to clarify whatever they haven’t understood. Be patient, and avoid blaming them over failed tasks.
Listen to Their concerns and Take Them Seriously
Children will have their own needs and concerns. Caring for a patient will certainly prevent them from attending to those needs especially interacting with peers. Teenagers will have their issues. You need to encourage them to express their needs. Listen to them and give them appropriate importance. Avoid the temptation of rubbishing their needs, even if they sound unimportant. Taking them seriously will keep them motivated.
Children should ideally not be taking over adult responsibilities like caring for sick relatives. But when circumstances dictate, then the effort should be made to support them to manage. The tips described here aren’t exhaustive to support children as caregivers, but they can be helpful. When possible, financial needs should be addressed, because many of the necessities of patient care require financial resources.
This content is for informational purposes only and does not substitute for formal and individualized diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed medical professional. Do not stop or alter your current course of treatment. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.
© 2021 Ian Batanda