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.
