Planning for care

There are considerable practical issues that parents need to address when making a plan for the care of their children. Professional help, such as children's social workers or lawyers should be sought to ensure that the plan is feasible and families are helped to access all the services they require.

The aim of planning is to enable parents who have a life–threatening illness to consider who might care for their children if they became unable to or if they should die. This may involve arrangements for emergency, respite, short term or long term care of the child or young person. Planning is important situations where one parent has died, if both parents have HIV, or if the children are not living with their parent,, for instance in another country, or in foster care.

Introducing the idea of planning to a parent will be dependent on various factors such as how long they have been diagnosed, their state of health, contact with other parents affected by HIV, relationships with professionals and timing.

The empirical experience of parents and workers in making plans for the care of children has shown it to be better to start the process as early as possible. This acknowledges the complexity of the emotions that can arise for parents and the time they may need to process them. It also allows time to arrange practical tasks, such as making wills, looking at accommodation or finding an alternative carer.

Some parents may have made practical arrangements for their children without input from a worker who has a child focus. It may still be beneficial for parents to review these arrangements with a child–focused worker who can then act as a sounding board, or who can provide useful information about the emotional and practical implications for parents, their children or carers. Topics may include what the parents expect of carers, or how the child or young person may react to the changes in living arrangements.

At an appropriate time, the child or young person should be involved in the process. This will depend on the age and maturity of the child, and the normal family decision–making process and cultural background of the family.

The child or young person may have very definite views or feelings about plans for themselves. Even if their views are unrealistic or unsuitable, this needs to be discussed with them. If the child or young person is involved in making decisions about their life, they will be more emotionally prepared for any change in living arrangements.