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What is the role of the family in care and recovery?

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We interviewed five people with lived experience of mental illness and a common theme was the role of families in care and recovery. If you haven't seen those interviews, you can watch them here

We asked Wayne Skinner, Deputy Clinical Director, Ambulatory Care and Treatments, CAMH, to respond. In this interview, he not only describes the benefits of including family in care - he also gives concrete examples of how clinicians can do it.

What other ways can families be involved?  What challenges, if any, have you encountered when including families?  Please share your experience and expertise.

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RE: What is the role of the family in care and recovery?
Answer
17/10/14 5:31 PM as a reply to cheryl.

I love the point about it reducing stigma.  Mental health does need to be normalized.

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RE: What is the role of the family in care and recovery?
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17/10/14 6:27 PM as a reply to cheryl.

My spouse has played a very significant role in helping me to seek treatment and by continuing to be a supportive caregiver when I need it.  His willingness and ability to educate himself on my condition has benefitted me as much as counselling and medication.  This is truly the magical combination when it comes to coping with my anxiety and depression.   My kids are young and I haven't really involved them too much in this - quite frankly I am able to manage my symptoms so that it has little impact on them. My husband is able to pick up the extra slack when he needs to and this is a huge relief to me. 

The flip side to this is that I need to be aware of the demands this places on him and our relationship.  Luckily, we have been able to be there for each other.

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RE: Response to Dr. Skinner's interview
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18/10/14 8:10 PM as a reply to cheryl.

Dear Dr. Skinner,

I watched the segment which you gave on involving family during mental crisis.  Thank you for sharing your insight on this topic.  I agree with you that family and friends would be the best people to assist those in mental crisis in an ideal scenario.  However, when the help is iatrogenic, it becomes detrimental to the patient’s recovery.  What I mean by this is, in most cases, family and friends will often provide support that is non-supportive.  This may include asking why the patient feels the way he does, telling the patient to snap out of it; dismissing the patient’s reoccurrence of the pain; and shaming them because they have a mental illness.  Family and friends are too close to the patient and they panic when they cannot bring the patient back to the ‘original’ state – the ‘original’ state being when the patient was stable.

I have experienced being a mental health patient and a family member of the patient in mental crisis.  And even though I was a mental health patient, I had failed to put myself in the patient’s point of view when providing the help because I was too close to the patient.  My goal was to take away the pain by ‘fixing’ the problem.  I failed to see that the patient was incapable of applying the fix required in his state and that even the simplest of task to someone who is stable was an incredibly difficult task to accomplish for someone with mental pain.

As a family member of the patient, I had relied on the mental health clinicians to provide guidance to help the patient and I followed their advice even though I was uncomfortable with executing them.  What resulted was it produced friction between the patient and myself as the steps to help the patient were really ‘fixes’ to shame the patient into stability.  In my reflection on the event, there were many things I would not have done.  I would not have taken the patient to the hospital; I would not have allowed him to stay in the locked ward of the hospital as he was not a criminal; I would not have listened to the psychiatric nurse’s advice to push him away when he wanted to be held and hugged; I would not have forced him to attend sessions with the psychiatrist who was not interested in helping him; I would not have followed instructions on how to teach him to stand up for himself and instead, when he stood up to the bully, it was he who was suspended from school.  What I would have done was encouraged him to talk and to let him cry; allowed him to be vulnerable; given him all the hugs he needed and any type of support he needed.  I should have protected him and allowed him to heal at his own pace.  This patient has not forgiven me in putting him through this experience and I also have not forgiven myself for increasing his pain at the time he needed help most.

Most family members and friends rely on the mental health clinicians to provide help on how to help the patient.  Although the advice is meant to help the patient, the instructions usually come in the form of ‘fixing’ the problem.  The advice may result in shaming the patient to what may seem like stability when in fact, the patient has withdrawn from the help.  When questioned on their stability, the patients would use every ounce of energy they have to look and behave stable around those who ask.  They would respond that they are doing well.  This would work until everything would break down and suicide would occur.  Often family and friends would be shock and they would comment that the patient seemed to be doing well and that they thought the patient was recovering.  The helpers failed to see that forcing someone to behave as they expect has detrimental effects on the patient.  The result is it would drive the patient further into pain.

The patient I had ‘helped’ has distanced himself from me.  From this, I learned to just listen and to provide support and comfort in a non-condensing manner.  I have encountered participants in group session who had family members with mental health issues.  They complained about these family members - such as having to bear the patient’s mood changes and disrespectful conversation, having the patient sleep all day and disregarding his/her hygiene or the patient not having a job.  The patient then was labelled as lazy and confrontational.  However, after the participants changed their perspective on the patient and applied the help that the patient really needed, they saw the patient move towards recovery.  The help which they used was to listen and not give advice. 

Many people failed to see that the patient knows what he/she needs to do to recover.  However, this was often ignored by the helpers and instead, they saw the patient as manipulative or fragile.  The patient generally would be neither of these as any energy the patient had was diverted to controlling the pain he/she was experiencing.

Unlike a physical illness, most mental health illness such as depression, suicidal ideation, and borderline personality disorder cannot be fixed by medication.  It requires understanding and non-judgment from the helper. Dr. Skinner, I hope you would take what I have written into consideration and communicate this to your colleagues around the world.  I thank you for you support.

Best regards,

Diana

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RE: What is the role of the family in care and recovery?
Answer
19/10/14 10:39 AM as a reply to cheryl.

One of our family members had a serious mental health issue several years ago. The most important role we played in his recovery was finding the right professional help and treatment for him asap. We were lucky. I know not everyone is, but we were fortunate to get him the medication and support services he needed. This family member is now doing extremely well with these treatment supports. My fingers are crossed.

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RE: What is the role of the family in care and recovery?
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21/10/14 7:56 PM as a reply to cheryl.

I am delighted by the posts that we are getting here!  The conversation helps clarify and deepen our understanding of the issues we are exploring.

While I am enthusiastic about pursuing family involvement wherever possible, I think that some of the cautions that people have expressed in their comments are very valid.  Diana for example is concerned about what to do when the family is non-supportive, expressing criticism and glib advice to snap out of it.  She adds that family and friends may be too close; they may also fail to see the problem from the patient's perspective.  These things can be true. In fact, I think that to be most helpful, the clinical team needs to know about this, rather than just focusing on the patient as if all that was wrong was something inside the patient that needed to be fixed.  

Minimally when family members have misinformed views of the client's health problems, the clinical team should see this as a great opportunity for education and health teaching, about the illness, the treatment process and the pathways to recovery.  If the family itself is distressed and having trouble coping, it is an opportunity to offer help in the variety of ways.  The goal is to help the family members become more supportive and committed to the care plan.  If they are excluded, and the client is returning to the same environment, the risk of relapse is heightened.  On the other hand, if we can work together to build a collorative plan of support, the client's recovery prospects are enchanced.  

All of these things need to worked out client by client, situation by situation.  

Diana goes on to talk about a time when she sought help for a family member that was very unsuccessful, so that the "the patient has not forgiven me... and I also have not forgiven myself for increasing his pain at the time he needed help the most."  What she did was take the family member to hospital where they were held involuntarily. Diana observed that the care was more about the patient being "shamed into stability" until he learned to behave as his caregivers expected.

I agree with Diana that there are differences between physical and mental illnesses.  You can't just fix many mental health problems. But whatever the health issue, everyone deserves to be treated with respect and compassion, both client and concerned family members. Diana, your story points to the fact that in mental health care we need to be open to input and feedback that allows us always be learning from clients and family members, even while we are keen to share with them what we know can be helpful.  You remind us all of what always needs to be there when you talk about the importance of listening rather than just giving advice, of being understanding and non-judgmental rather than being insensitive and too directive.  

Good care needs to attend to the whole person - biologically, psychologicall, socially, culturally, spiritually.  It is when we can proivde approaches that integrate all those that we give clients and famlies the best care.

I look forward to other comments.

Best to all,

Wayne

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RE: What is the role of the family in care and recovery?
Answer
26/10/14 8:27 PM as a reply to cheryl.

Dear Dr. Skinner,

Thank you for reading my post and understanding my views.  I hope you will continue to help us patients in assisting your colleagues to comprehend our difficult position as the patient and the family member of the patient.

While there is our side as the patient, I also know that those who help us are, like us, people too.  I wonder if you would consider sharing what it is like to be on the other side…as in what it feels like to be the helper.  As much as we as patients sometimes feel that the helper doesn’t understand us, we may also have forgotten in the moment that the helper is also a person and we neglect to take into consideration ‘the other side’.  I hoped that you or your colleagues would consider sharing your help experiences from the perspective of a person rather than a professional perspective. It would help us to meet in the middle in a sense that the mutual respect between patient and helper can be attained. 

Through my personal experience in searching for help with many mental health clinicians, it was with a therapist who presented herself as a person and treated me as person which helped me to recovery.  It was not about ‘my sessions’ but rather our sessions in which we exchanged ideas and possible solutions for my illness.  It was only when I was in crisis which she took control to protect me from harm.  Because it was a collaborative approach, I able to help myself recover with her guidance.  I wonder if this methodology may help other patients and their helper.

I look forward to your response to my request.

Most sincerely,

Diana  

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RE: What is the role of the family in care and recovery?
Answer
26/01/16 5:30 AM as a reply to cheryl.

     In 2 days time it will be Bell Lets talk day 2016 and I applaud such things as there need be so much more done in destigmatizing mental health and addictions disorders.Education about these illnesses is so essential to benefit both sufferers and society.  Involvement of family and friends in the care and recovery of clients is indeed a benefit if such persons recieve knowledge reguarding the nature of the mental illness just as family and friends become knowledgeable about other health ailments.  Sadly though we still have a long way to go before we see such involvement in care of supportive families and friends. It has been my personal experience and my observation that the significant people in the lives of those who live with mental illness or addiction often distance themselves from the person in times of relapse. Visitors are rare in mental health in patient settings and I have yet to see the flowers and get well cards or balloons in psychiatric settings that so clutter the wards of other specialties.  In my personal experience and talking with peers, even during times of remission family and friends are unwilling or very uncomfortable discussing the person's disorder.  Managing a mental illness requires a great deal of effort to adopt a life style that promotes health globally and a reliable support system.  Family and friends could be most helpful in encouraging and supporting such efforts.  Let us indeed talk about mental health not just on a special day but everyday and loudly as well in order that things change.

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RE: What is the role of the family in care and recovery?
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13/03/16 5:05 PM as a reply to cheryl.

Computer trouble is the reason why I did not answer June's comments any sooner.

I was horribly hurt to read these old cliches repeated, as if we hadn't lived with them for a good thirty years..

First of all there are not that many flowers and get well cards in main stream hospitals anymore, I should know my family member was discharged from an internal medicine unit yesterday !!!! Many hospitals are scent free, and lobby flower shops are not there any more.!!!

Second while some families get discouraged and stay or are steered away from their ill member, many stick through it all !!!!!

What I  have learnt from the last 4 days in an internal medicine unit is that severe mental illness is not a deterrent to best treatment any more, When I was asked what my friend was on and I came to (the antipsychotic), it was noted down without hesitation or further question....

I enjoyed the Let's talk exercise, but also noted that very serious mental illnesses were mentioned only by the psychiatrist.

Why is  serious mental illness  still the most miunderstood and undertreated illness ?

Political correctness ? ignorance ? hypocrisy ?

 

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