Learn how social factors promote mental health, influence the onset and course of mental illness, and affect how mental illnesses are diagnosed and treated. This course explores how our understanding of mental health and illness has been influenced by social attitudes and social developments in North America and around the world. The course begins by situating our contemporary mental health practices in historical context, then looks at different aspects of mental health, mental illness and mental health services and their connections to what’s going on in our social environment.
5.3 families and caregiving
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The Social Context of Mental Health and Illness
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Families, caregiving and mental illness
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Charmaine WilliamsAssociate Professor
Faculty of Social Work
Before we get into segment 5.3, I'm going to ask you to take a look at this video
where a family member is talking about her family's experience with mental illness.
When a family member becomes mentally ill, other family members usually step in to
support him or her. This is why so much of our thinking about
how family members are effective when one of them has a mental illness circulates
around the issue of caregiving. Before we get into the specifics of
caregiving, I want to take a moment to talk about family life in general.
Noting again that this is a culture bound take on families.
We understand families as progressing through various stages as family members
are born, mature, age, and die. For convenience, I'm going to start, I'm
going to anchor our discussion of the family life cycle with the existence of
one or two people who are in adulthood. Then move on to establishing some kind of
partnership together and then raising children.
Then launching those children when they mature into their own adulthood.
And then going on to later life and their own physical decline.
This is just one version of a family life cycle, but hopefully, it gives you an idea
that there are various stages and changes in families that signal the maturation of
family members and the subsequent effects that this has on other family members.
The family life cycle is characterized by periods of change and instability.
Every time an individual family member experiences a major development, like
becoming an adult, or having a child, or joining with a partner, etcetera.
There is a period of instability as the family rearranges itself to accommodate
the change and then continue on. Each change in stage in the family
requires all family members to take on new tasks and responsibilities, perhaps new
roles and perhaps to address positive and negative emotions that might go along with
that. Changes like birth, death, and departures
are common, and usually, families know how to deal with them without too much
disruption. Because they've seen a lot of other
families deal with that and they deal with it themselves, but there are some changes
that families are less prepared for. And as I've already said, there is little
that's done to prepare families to deal with the changes that come along with a
major illness in one of the family members.
In the paper cited here, I look at how the family life cycle is affected by the life
cycle of mental illness. The work that's been done, the work that
had been done by Jon Rolland, presented a way for thinking about how different
illnesses have different life cycles. And that means that they have different
effects on families at they, as they move through the family life cycle.
The effect that an illness has if it comes on quickly, which we can all acute onset,
is quite different than the effect an illness has on the family if it comes on
gradually. The effect than an illness has on the
family is different if it's predictable, than if it's unpredictable.
And, the effect of an illness is different if it's short term versus if it's long
term. So, what does this mean when we're talking
about mental illness? Well, you know that I'm interested in
schizophrenia, so that's what I was writing about in this paper.
Schizophrenia is an illness that can potentially be long term, potentially
recurrent, and often unpredictable. What that means for families is that when
a family member receives that diagnosis, the family has to adjust for adjust to
something that will have an effect over several years.
But it has to adjust without having any idea of when things will be stable and
when they will be unstable. Mental illness is a non-normative stressor
for the family system. That means, it's a stress that most people
do not expect that they will ever have to deal with.
So the life cycle of the illness can effect the life cycle of the family and
families can find this highly disruptive, both because of the actual illness itself
and because of the lack of preparation to deal with it.
When it comes to issues of caregiving, a diagnosis like that can mean that care
giving is going to be extended. Children who were supposed to be launched
into adulthood and independence don't get launched into those independent roles when
expected. Spouses who were soon to be partners in
dealing with the higher responsibility in the family become dependent instead, and
instead, have to be taken care of. Siblings that you assumed would be leading
completely independent lives, continue to have lives that are deeply intertwined
with their other siblings. So the predictable change over of roles
and task that is part of a qoute-unquote, normal family life cycle gets derailed.
Another consideration is that changes in the family life cycle that could have been
absorbed without too much disruption in the absence of illness can cause more
disruption because they have an effect on the illness course.
For example, I often saw people who were well and stable for years, become quite
ill and disabled when their mothers died, both because of the grief and because of
the loss of a primary caregiver. This in turn cause instability in the rest
of the family as they try to deal with both the loss of their loved one and the
illness of another loved one. There's a great deal of research in
writing about caregiving and mental illness.
Most of this literature addresses families dealing with schizophrenia and dementia.
I'm not sure why, but there's been some work done with other mental disorders that
suggest the care giving experience is affected not so much by diagnosis, but by
the specific level of illness and disability that the family is dealing
with. Family care giving has been essential to
the success of the institutionalization. When the large institutions discharged
their patients and hospitals started shortening lengths of stay, family members
had to pick up the work that had once been done by health professionals and associate
staff in health care settings. You might remember this from the
stakeholder analysis that was, that I discussed in the very first lecture.
I often, I want to emphasize that what families were asked to take on was work.
Because we call it caregiving, we sometimes pay the closest attention to the
idea of care and it's associated ideas of love and concern.
Love and concern is definitely part of caregiving, but so is actual work.
Depending on the demands of the illness caregiving includes a wide range of
activities that include things like attending to daily needs, monitoring,
supervising, providing emotional support, etcetera, and it can also be a twenty-four
hour job. And even if people are not directly
involved in all of a person's caregiving needs, the management and organization of
getting those needs met by other people can also be very time and energy
consuming. The overwhelming majority of research on
caregiving in the context of mental illness focuses on the idea of caregiver
burden. Family burden refers to the strains and
difficulties that are associated with caregiving.
It is often described in terms of subjective burden, which is the emotional
toll and often the psychological distress experienced by caregivers.
And we also talk about objective burden, which is the strain it takes on things
like finances and relationships. I spoke before about families maintaining
secrecy about having relatives with mental illnesses.
I wanted to mention here that caregiving strain is one of the areas that families
are often most secretive about. Often, families feel like people do not
want to hear about the difficulties they are experiencing in the caregiver role.
Many caregivers, and I'm speaking of mothers ond wives mostly because that is
who most commonly in the primary caregiver's role.
Many of these caregivers will also maintain a secrecy about caregiving
burden, because they do not want to burden other family members with it.
So they don't tell, other people don't ask.
And there is a kind of conspiracy of pretending that everyone is managing just
fine. Unfortunately, we know that may not be the
case. Taking a closer look at what causes
caregiving burden, this is a list that was generated in a study that was done in Hong
Kong, with families who had a member diagnosed with mental illness.
You see that when they talked about what was causing them distress as family
members, some of it was about the actual symptoms of the illness.
Some of it was about relatives that were resistant to following through with
treatment recommendations. Some of it was about relatives that had
nothing to do or did nothing. And some of it was about the effect it had
on their own lives, the reduced social activities, the financial problems,
etcetera. I also have a addition from of my own
researches. One of the things that is difficult to
talk about is that family members who are caregivers are also the people most likely
to be victims of violence by people who are diagnosed with mental illness.
Family members may live in fear or risk, and even this may be something they keep
secret, because they do not want to cause problems for their loved ones.
All of this has the kind of consequences you see summarized here.
I want to mention here that there is clearly a literature that suggest taking
on the caregiving role can create these kind of problems for caregivers.
But we often forget that caregivers also have their own problems they're dealing
with. So it may be that there are multiple
family members who were dealing with mental illness or psych, or physical
illness, or other problems at the same time.
The way that we usually think about caregiving burden is in terms of stress,
coping, and appraisal. And this is based on a model by Lazarus
and Folkman, that's from the 70s. I think I don't have the date here, but
reference is in your in your list of resources.
The person with mental illness was a source of, the mental, the personal with
mental illness is seen as a source of stress, and the amount of burden that
family members experience is, is determined by how well they are able to
cope with the stress and what kind of appraisals they bring to that situation.
The appraisals would be things like do they think it's an illness or do they
think that it's a curse or do they think their relative is just acting badly?
Do they think that they can handle the stress that's in their family or do they
think it's too much for them? Whatever kind of thoughts and ideas they
have around this experience is the appraisals.
And some appraisals are more prone to producing stress than others.
Or, sorry, producing burden than others. Given that model, the ways in which we
have supported families is by strengthening their coping skills through
things like offering support, setting up mutual support opportunities for families.
Helping them develop strategies for dealing with stress and helping them to
deal with problems that may arise because they're dealing with a mental illness in
the family. There are also interventions to deal with
the appraisals. Psychoeducation, which is educating people
about mental illness and its treatment is one of the most successful family
intervention, interventions available in the context to mental health care.
When people have good information about mental illness, they're usually much
better able to cope with it, and to take care of themselves, and to take care of
their family members who have a diagnosis. In fact, psychoeducation, now quite
commonly, includes teaching people about the importance of taking care of
themselves as caregivers. Appraisals are also affected by the
approach or attitude that people bring to caregiving.
That's not so much something that is affected by professional support, but we
see for example that in cultural groups where caregiving is seen as an honorable,
loving role rather than a strain and a stress, there's much less burden described
by caregivers. But I have a bit of a problem with this
model. One of my problems with this model is that
the only role that the person diagnosed with mental illness plays in it, is as the
source of stress. Somehow, because they have a diagnosis of
mental illness, it's like they are no longer part of the family.
They just become this problem that the rest of the family has to solve.
And with this way of thinking, they get shut out of family experience.
And I don't think that's necessarily the way families deal with this or necessarily
healthy way for families to deal with this.
In the article I wrote with Magnus and [inaudible] I proposed that in the context
of the family life cycle, caregiving is something that everyone will at some time
receive and at some time provide. Adults who provide care eventually become
elders who receive care. Children who receive care eventually
become adults who will provide care. And there are predictable and
unpredictable changes that can shift those roles within the family.
So one of the things that family do is adjust over the family life cycle to deal
with these changing care giving and care receiving roles.
If we now think about a situation where one of the family members is dealing with
mental illness. This person may be receiving caregiving
and receiving it beyond the period of childhood.
But that person may also be someone who provides care to other people at different
points in the family life cycle. We forget sometimes that people who are
diagnosed with mental illnesses are also parents and spouses and family members
that help other people. They take care of other family members
like parents who are aging or extended family members who are young, or frail, or
ill. So, when we consider how caregiving is
dealt with in the family, the person who is diagnosed with mental illness should
not be considered as just a source of stress for everyone else to deal with.
They need to be seen as a person in the family with a role to play in dealing with
the caregiving demands of the family. And like everyone else, there may be times
when they are drawing on family resources and there will be times when they may be a
resource to other family members. In this study, where I interviewed people
diagnosed with schizophrenia. I certainly found this was the case.
People described having ongoing caregiving roles despite having a mental illness.
As I said, they were parents, and they took care of parents, and they were
involved in the care of other family members.
But also , individuals spoke about their gratitude and appreciation of the
caregiving that they received from other family members.
Many of them were deeply concerned about their relatives and concerned about any
burden that they created for these people. Many of them spoke about how much it meant
to them to be able to somehow and sometimes reciprocate the caregiving they,
they received, so that they could also be a functioning part of the network of
support in their families. So some of the things that I learned from
doing that work is that giving and receiving care is definitely part of the
family life cycle. And being diagnosed with a mental disorder
doesn't mean that all you ever do is receive care.
Family members diagnosed with mental illnesses are caregivers.
They want to be able to take care of other family members and they can be a resource
for other family members who need care. Families affected by mental illness need
help with managing the stress of that, but they also need help as a whole family, not
as a family dealing with just one troublesome family member.
I think this actually speaks to larger issues of how, how we think about caring
as a society. There's a tendency to think of care as
something that one group of people gives and another group of people receives.
But the reality is that as human beings we will all need care, and we will all have
people who need care from us. So we may need to think about how
caregiving can be mutual and a reciprocal things within families and beyond
families. In this next segment from The Family Guide
to Mental Illness, a social worker talks about just that.
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