The influence of caregivers on patients' treatment decisions

This project is relevant because caregivers play an important role in the
choices patients make. We are inclined to focus solely on the patient himself
in our communication. Thereby we imply that the patient is completely
independent, rational and self-reliant. In reality it seems, however, that
every patient has his own context. His choices are influenced by the people
arounds him. It also appears that patients frequently prefer to leave someone
else to decide: doctor, partner, children.

Not everyone is able to make choices independently,due to lack of knowledge or
skills, to emotional involvement, or underlying personality structure. In
short, 'making your own decisions' seems ideal, but is that what the patient
wants and is capable to do.

There is no large body of evidence on the role of caregivers in decisionmaking.
This study will provide insight to professionals in health care, but also to
patients and caregivers themselves. It will provide practical guidelines for
patients, caregivers, health professionals and also policy makers on how to
cope with the triangle relation patiënt-caregiver-health professional. As far
as we know, similar research has not been conducted yet, in any case in the
Netherlands. This research will give more clarity concerning the role of
caregivers, and will give input to policymakers in this regard.

This study will address the question: what is the role of caregivers of lung
cancer patients in collecting information and communicating ? What influence do
they have on choices and decisions these lung cancer patients make ?

This is an explorative study on perception. A longitudinal, qualitative study:
repeated interview

The study will be conducted in three hospitals, one academic centre, and two
peripheral hospitals. Within every hospital we will collaborate with one or two
pulmonologists. We will ask them to invite the first five lung cancer patients
they diagnose to participate in the study, as of a certain starting date, in
order to minimise the selection-bias.

These 15 lung cancer patients, one up to four of their caregivers and their
physicians will be interviewed three times, in order to be able determine
possible changes in the course of the time. Each participant will be
interviewed shortly after the diagnosis, during first line treatment and
afterwards.

For the interview a semi-structured questionnaire will be used.

The subjects covered in these interviews are:
- which decisions and choices have been made, and what is the role of patient,
caregivers and doctor in that decision or choice
- how do patient and caregivers collect information, and how do share they this
information with each other?
- what do patient and caregivers think of the communication process, and how do
they deal with that?
- to what extent do patient and caregiver want the same, and if not, how do
they cope with that?
- if caregivers play a large role in the provision of information and taking
choices, how do patient, caregiver and physician interact?
- Do caregivers divide certain roles among themselves? Are there changes over
time in roles?
- how does the doctor deal with the role of the caregiver?
- what is according to patient, doctor and caregiver the impact of the
involvement of caregivers?


The interviews will be conducted, transcribed and analysed. The results are
processed to a research report with concrete practical recommendations for
doctor, patient and caregivers.

Additionally the results will be used to develop an accessible book for
patients and caregivers with recognizable stories and tips for patients and
caregivers on how to take decisions together effectively. This book will be
supplemented by a workbook for health professionals to be used for intervision
and trainings.

Moreover a number of training modules for care workers will be developed in
communicating with patient and caregivers. These modules will be tested in a
number of treatment teams, and will be made available once proven to be helpful
for health professionals.

This research can be burdening in the sense that every participant (patient and
caregivers) is interviewed three times. These interview could last up to an
hour, which may be tiring for the patient. Also it is possible that as a result
of the interview, participants may become more aware of dysfunctional family
patterns. (which could also be a good thing, of course)