One of the best ways for care providers to guide and support informal caregivers is tailor-made program guidance. Let us take a look at how such process guidance can proceed, both in Belgium and the Netherlands.
The phases of trajectory guidance
In order to tailor the guidance of informal caregivers as best as possible to each unique situation, tailor-made program guidance is required. Within such process guidance we distinguish 5 parts: clarifying the question, planning, connecting, following up and evaluating. Full support for informal caregivers can take place through these five phases.
Phase 1: clarifying the question
With question clarification or question clarification, the care provider tries to map out all aspects of the informal caregiver’s life. Naturally, this only concerns those aspects that are or could be important in the context of his assignment as an informal caregiver.
By questioning various aspects of his task, the social assistant can form a complete picture of the needs and pain points of the informal caregiver. In this case, having a small checklist of questions at hand is not an unnecessary luxury for the social assistant. This may include questions such as:
- How does the informal caregiver view his own situation?
- Does he provide care voluntarily and consciously?
- What concerns does he take up and what concerns does he want to take up in the future?
- How much of a burden does care put on the informal caregiver?
- What are the specific needs of the informal caregiver?
- What is the priority for the informal caregiver?
- Have all rights been exhausted for both the informal caregiver and the care recipient?
- Has a network been built up that can relieve the caregiver of his task?
- Does the informal caregiver’s social life suffer as a result of his task?
- Does he feel fulfilled as a person within informal care?
Based on the answers provided by the informal caregiver, the social worker can ultimately form an idea of his or her actual needs and then draw up a plan to further guide the informal caregiver.
Phase 2: planning
When planning such process guidance, a number of general goals must be kept in mind. These goals should provide additional support for the informal caregiver and, in addition to the actual needs of the informal caregiver (which emerged from the clarification of the question), they are also taken into account.
As a first general goal, the social worker should try to strengthen personal resources by deepening the knowledge, attitudes and skills already acquired. In concrete terms, the social worker will check whether the informal caregiver has any knowledge of the clinical picture of the person he or she is guiding and whether this insight also corresponds to reality. Is he aware of the options available in terms of professional help and support? Do the informal caregiver and the care recipient accept help and what help, if any, is welcome? Is the caregiver well able to indicate his own boundaries and needs? To what extent can the informal caregiver tackle and solve problems within the care situation?
The social assistant must then pay attention to strengthening social resources. After all, strengthening social resources focuses on improving cooperation and communication between professionals and informal caregivers. To explain this better, let’s put ourselves in the shoes of the informal caregiver. This way we can really clearly see how that caring person takes his task to heart on a voluntary and therefore uncompensated basis. When he tries to build a network with the professional sector, he often encounters the jargon on the one hand and the time shortage of many professional care providers on the other. Jargon naturally exists in every sector, but in this case it certainly does not make communication to the layman easy. In practice, informal caregivers often appear to ask for clarification after an interview with professional people, which is of course a shame. After all, it would make the caregiver’s task much easier if he or she were properly informed by the other parties involved. This of course takes a little more time, but the added value and returns are worth the effort. For example, an interview with the doctor about the further course of an illness would enable the informal caregiver to better respond to certain signals and prevent situations. An informal caregiver who does not have this information is sometimes confronted with something that he cannot place at all and this weighs heavily on the person’s capacity to cope.
However, if the division of tasks between the informal caregiver and the professional care provider is not clear and a number of things go wrong at this level, the social assistant can organize a so-called care consultation in consultation with, for example, a care coordinator. This provides a better overview of the situation and makes it possible to see who is taking on which tasks, so that the informal caregiver also gets a clear overall picture of the various responsibilities. An additional option to improve communication after the care consultation is to draw up a care plan in which all parties involved record their interventions and questions for other care providers (both professional and volunteer).
We can also include contact with fellow sufferers under this general goal. This contact allows the caregiver to vent and discuss feelings with people in a similar situation. After all , self-help organizations or organizations of informal caregivers offer solace for many informal caregivers.
Finally, minimizing the objective and subjective burden is also an objective that must be included in the planning. This can be done by first and foremost making taxes a subject of discussion and then offering options to reduce that burden, such as day care, night care, recovery cures, volunteer service, babysitting assistance, centers for the less mobile, developing a network, and so on. The subjective burden must also be measured and viewed throughout the entire process.
Once the social worker has bundled the needs of the informal caregiver (obtained through the clarification of the question) as well as the general objectives mentioned above, he can develop an appropriate process and plan this concretely over time. Planning trajectory guidance for informal caregivers in time is not always easy. It will depend on the situation whether an end point will be pinned down in the route guidance or not. If it concerns a palliative patient, the end point of the guidance will of course impose itself, but if, for example, it concerns the support of parents with a severely disabled adult child, an end point can be pinned down. Finally
, the mapped out route must be reviewed with the informal caregiver himself so that both parties agree to the guidance that is offered. This process is not a fixed thing that cannot be deviated from, but rather a flexible working instrument in which both parties can express their points of interest on an equal footing. The process can therefore always be adapted to a new situation. However, the process does give both parties an idea of what the points of interest are and what needs to be worked on and how.
Phase 3: connecting
In the context of program guidance, connecting means that the social worker looks for a link between the proposed goals on the one hand and the offerings within the social map or in his arsenal of skills and working tools on the other hand in order to ultimately convert the objectives into concrete actions. These actions will then be effectively implemented later to realize the plan that was formulated. A concrete example could be that the informal caregiver would like to go to a meeting of a walking club one day a week. In this case, the social worker looks for a possible alternative to take over the care during that one weekly day, be it in the form of a volunteer or in the form of a day center where the care recipient can go. If the day center turns out to be the most obvious choice, then you will also have to look into transportation to get there and return home in the evening. All these options are discussed with the informal caregiver and the care recipient before they are converted into concrete actions.
Phase 4: follow-up
Naturally, the informal caregiver will have to be continuously monitored once the planned process has been initiated. Monitoring the process consists of carrying out the actions in a systematic manner. To this end, the care provider will take various actions, such as helping to look up suitable information, making targeted referrals to the appropriate services or institutions, and so on. All these actions can be quite diverse and are discussed separately in the article ,Following up informal caregivers during program guidance,.
Phase 5: evaluate
A final phase within the trajectory guidance of informal caregivers is the evaluation of the course of the trajectory. This evaluation takes place at three levels and requires the use of a number of specific working tools (for more information, see the article ,Evaluating program guidance for informal caregivers,).