What challenges have you experienced when involving families?

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Home – NEW Forums Module 2 – Care for Early Psychosis Fall 2023 What challenges have you experienced when involving families?

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    • #10589

      In my own experience regarding families being involved in EPI care one of the challenges is respecting youth consent, especially when there are multiple partners in care. Empowering youth is important as well as respecting their rights, keeping and following relevant legislation, youth may be okay with some of their care being shared with family but not all, or prefer to keep some aspects private. Involving families can be beneficial, key when there are safety concerns or identified risks, though with general care updates and collaboration it is general good practice to consider the youth as the center of their care, who they want or do not want involved. I appreciate the benefits of collaborating with families though working in a harm reduction and youth driven service it is key to obtain youth consent and have a discussion about this when initiating care, though again omitting changes with safety risks involved or legislation indicates otherwise. I have also seen family involvement be key in recovery, in lots of cases they are primarily caring for the client and can identify changes fast as they know the client best. Challenges with involving families in care is definitely different on a situational basis, there are a lot of factors that come into play.
      I would appreciate to hear others similar experiences or thoughts with this or how their organization integrates families in EPI care.

    • #10591

      One challenge I have seen is when family expectations are beyond what our program can offer. One situation I have witnessed with my colleague is a family expecting a case manager to meet with a client multiple times a week to monitor behavioral issues essentially looking for a ‘babysitter’. One of the ways to overcome this challenge is to provide education on the EPI program and what resources are available to the client. It is helpful to acknowledge the stress and anxiety the parents are going through and to provide support and resources to the parents; i.e., parent and family education sessions or therapy sessions. A recommendation would be to identify the issues and symptoms and try to treat and intervene the psychosis while working with the team on stabilization and re-integration back into community. Another challenge I have encountered are parents who want to be involved but do not respond or have limited time. A third challenge is when family member shows limited insight into the client’s psychosis. An example of this is one of my client’s mother is trying to get the client to refuse her depot injection. She believes symptoms are caused by a supernatural presence in her room. I tried to provide education on the causes of the illness but struggle to get the mother to support pharmacological treatment.

    • #10592

      One challenge I have seen is when family expectations are beyond what our program can offer. One situation I have witnessed with my colleague is a family expecting a case manager to meet with a client multiple times a week to monitor behavioral issues essentially looking for a ‘babysitter’. One of the ways to overcome this challenge is to provide education on the EPI program and what resources are available to the client. It is helpful to acknowledge the stress and anxiety the parents are going through and to provide support and resources to the parents; i.e., parent and family education sessions or therapy sessions. A recommendation would be to identify the issues and symptoms and try to treat and intervene the psychosis while working with the team on stabilization and re-integration back into community. Another challenge I have encountered are parents who want to be involved but do not respond or have limited time. A third challenge is when family member shows limited insight into the client’s psychosis. An example of this is one of my client’s mother is trying to get the client to refuse her depot injection. She believes symptoms are caused by a supernatural presence in her room. I tried to provide education on the causes of the illness but struggle to get the mother to support pharmacological treatment.

      • #10623

        Hi Jennifer,
        I agree with you that providing education to family members is key. I had a client some years back that I admitted to our inpatient unit with first break psychosis. The issue I ran into with the client’s parents is that they were in denial. They refused to accept the Dx. They didn’t believe in treating the symptoms with medication or even want their son to be associated with a mental health team. In this situation I provided educational resources on what psychosis was and encouraged them to ask questions. I spent a lot of time listening and empathizing with what they must have been going though. It took a long time for this family to accept that their son had mental illness but as time went on they were more receptive and eventually accepting of the Dx. They began to reach out to me more for support (I later became his community case manager). I encouraged the family to get more involved and made sure they were aware of support groups. While they got used to being connected to our community mental health team I agreed to see the client at home for his depot injections. It was a slow process but they did eventually learn to accept that there son had an illness.

    • #10598

      Hi Grace,
      I appreciate that you pointed out that although we know family involvement can be incredibly beneficial for the client’s recovery, at the end of the day, the client is our client and should be the one driving their treatment plan and be at the centre of their care. You talk about youth specifically in your post. I work in adult mental health services so don’t have experience working with youth, in particular, but have faced similar challenges when young adults do not want their family involved in their care. It is definitely a fine balance between providing family members with general enough education/information so that they don’t feel completely shut out, and ensuring to uphold client confidentiality. Sometimes I’ve found spending a bit more time explaining to the client that they can determine which information is shared and not shared can help open up some lines of communication a bit more, or revisiting confidentiality and Circle of Care with the client as they come further along in their recovery, sometimes they change their mind as they gain more insight. But sometimes they just don’t want anything shared with their family and, like you said, that is their right and we need to be cautious of not pushing it too far so as to harm our own relationship with the client, I think.

    • #10599

      I can share in a lot of your frustrations in working with families Jennifer, managing expectations of what we can do as an Epi team as well as what a Client’s capacity might be depending on their stage of recovery or Psychosis stands out to me as one of the most challenging things when involving families. You mention education as a way to overcome these challenges which rings true to me, offering both EPI-specific psychoeducation and family groups along with community resources can help manage a family’s expectations of recovery and timeline. Another piece that feels almost equally as important is meeting the family with compassion and empathy, knowing that the prodrome stage of psychosis can be a huge strain on family members, they might be experiencing caregiver burn-out, or have had negative experiences with the client that we may or may not be aware of. Listening to family concerns and validating them is an important first step, followed by education and additional supports. I think this can be applied to the situation you mentioned where the mother shows little insight into her child’s illness and pharmacological treatment. While the parent’s belief system does not align with EPI treatment, which could interfere with her child getting the care she needs, education alone might not work to convince the parent this is what her child needs. Listening to her concerns and validating her emotional response to a depo injection could open the door to having a conversation about what the risk is in her child not receiving this intervention at this time. Without focusing on the origin of the psychosis, there might be an opportunity to come to a mutual understanding that the treatment recommended is necessary. While there is no guarantee that this will shift her belief system, meeting her with understanding and compassion opposed to just facts that contradict her belief system could build a stronger relationship and potentially get everyone on the same page around treatment options.

    • #10601

      I am relatively new to EPI services, so I can’t specifically speak to challenges I’ve come across in my time here, but I have worked in family therapy for some time and it seems that challenges that occur within those families are very similar to what is being echoed here. I like incorporating psychoed, just for foundational knowledge, but recognize when I work, that it can only go so far as family members’ individual perspectives, experiences, traumas, values, beliefs, fears, etc. tend to be driving forces of their response to the client’s experience and treatment. Family therapy in this way can be particularly helpful to go digging for sources of caregiver’s concerns and asking the ‘what ifs’ of what might happen with all the scenarios they consider if they full control of the process of treatment and sometimes grounding them in their hope for the best outcome for their family member. Reiterating what Kade said above, sitting with the validation and really understanding a caregiver’s concerns can help build alignment so that if there is a gray area or opportunity for that caregiver to question what they might “know for certain,” you’re in the best position to shift their perspective in the direction of recommended treatment. The “babysitter” scenario as described above by Jennifer is all too common in my previous work, particularly given the fact that I’ve worked with younger ages. In a similar fashion, I like to work on building rapport and really understanding the concerns before trying to shift their perspective on their role as a caregiver (I think there’s a saying of “don’t tear down a fence until you know why it was it was put up” which I swear is a Rumi quote and not a Chesterton quote!). Again, it may not entirely relate to EPI population, but with the families that I’ve worked with, some unloading of responsibility of their child comes from not believing they are competent to rise to the role. From this, I like to do resourcing of professional and community supports with full recognition that it is a lot to care for a child (who is now a young adult), particularly one that is experiencing a huge challenge in their life, and one that they shouldn’t expect to do entirely alone. Bolstering them to see that they are a very critical piece in the team that is meant to support their child and that they will continue to be in the steady role because they are the caregiver and not the professionals that come in and out of their child’s life throughout their treatment and beyond.

    • #10602

      Thank you everyone for sharing your experiences! It is validating to know other clinicians share similar perspectives. In my role as a dietitian, I spend a lot of time educating clients on diet and lifestyle changes, as well as providing practical supports for meal planning, grocery shopping and cooking skills. Like Bree mentioned, our program also only supports adults. I find the most challenging experiences with families include knowing when to pull them in for extra support, and when to have them step back and let their adult child be more independent. One case that comes to mind involves a mother who would like her adult child to be more independent with meal planning, grocery shopping, and eating regular meals. She feels that her child is of the age where they should be taking initiative with these tasks. Mom feels that she shouldn’t need to be involved as she has certain expectations of her adult child. In this case, a huge part of getting mom on board to support this client was providing her with education around the possible impacts psychosis can have on a young adult in many areas of their life. After providing this education, we gathered as a team to discuss practical strategies for mom to try and reinforce at home, that would help get her adult child back into a routine. This is a good example of how family support groups can be so useful, as parents can hear from other parents that what their child is going through might be normal and expected based on the situation.

      • #10629

        Thank you for this perspective Emily. In our EPI team we have also been contending with determining our client’s perspective and goals when family has a strong and vocal perspective on what they believe their child should be working towards. Having family support is valuable and has been important to this client’s recovery, but at times parent expectations do not seem to align with where the client is at. As a clinician hearing requests from family while still trying to build a relationship with the client can be challenging. I have been working to reflect on the goal of my communication with family before responding as to keep the client’s wishes and goals in the center of care but also work maintain rapport and pen communication with their support system. Remembering that care for our client is everyone’s priority is helpful to feel aligned as a support team. Psychoeducation and family support groups have also been helpful for our client’s family.

    • #10603

      Yes, thank you everyone for your contributions to this conversation, I’ve enjoyed reading through your comments and can echo some of these experiences.

      I find it most challenging to support families who carry intergenerational trauma that affects the trajectory of the client. As a clinician, I am always hopeful that I might support families as an entity to connect with EFFT, but parents must also be in a place of readiness to work on their healing as well, and parents have a lot on the go. In addition, I find that working in healthcare we approach our clients with a client-centred focus of care, enabling the goals of our youth, which may not be in-line with the goals the parents have for their youth. It can be a struggle to relay to parents what client-centered approach looks like in practice.

      Another extremely difficult conversation that I have had to have, is surrounding the right for individual to live at risk, and to make their own decisions. It is morally distressing, to have to explain to parents that you cannot admit a youth based on substance use or enforce a youth to go to treatment based on substance use or what society/parents might see as ‘bad/poor’ or life threatening decisions.

      • #10889

        I can relate to the part about the difficulty in supporting families with intergenerational trauma. I work with youth in MCFD care, and when there are family members around to be involved in their care there is often so much fear around being “punished” or held responsible that it can very much hinder the supportive process. It is very hard to change a families perspective of government agencies when there has been trauma related to them in the past. We have had youth with family supports eager to play a role, however often the communication lands with a middle man of sorts due to the fear and perceptions that are present. It can also be hard to gain trust when like you also mentioned, sometimes there is little that can be done if a youth is not willing to engage in the supports. Families often see this as agencies and systems “giving up” on the youth when ultimately our hands become tied.

      • #11398

        Hi,

        Thank you for bringing up the challenges w/ involving family when there is intergenerational trauma, and as well as the right for individuals to live at risk. I work as a harm-reduction based MHSU clinician on an ICMT team locally. Many of my clients who experience psychosis and have related dx disorders are picked up by the team well-after a breakdown of family relations and support network. For many, this often includes early MCFD involvement during which the client had already been removed from their familial context and support. For one client, he was put into an abusive foster home for many years resulting in chronic adverse childhood experiences and PTSD. This client has struggled with positive symptoms related to his experience of schizophrenia, for which he had learned to self-medicate w/ illicit substances during a prolonged period of homelessness after aging out. The familial challenges of intergenerational trauma in this case plays out in his relationship with both his mother, grandmother, and younger siblings. The grandmother is his main connection to the family, and she is the main caretaker therein; the siblings live with the grandmother. The family is from a small town on Vancouver Island, but d/t the lack of resources in rural settings, the client wounded up in the Victoria shelter system after aging out of MCFD care. While the reuniting with family is one of the client’s main motivation, the grandmother had kept him at arms length from herself and siblings for many years, refusing to support any visits or moves back to the hometown. This stems from her experiences with the client’s mother who also struggles with positive symptoms relayed to schizophrenia, substance abuse, and homelessness. Indeed, the client was placed into MCFD care d/t the mother’s struggles with substance abuse, lack of housing, and psychosis; the mother still struggles with these challenges sleeping rough in the local home town. The grandmother is very protective of the siblings and sees the mother around town as a daily reminder of their family trauma. While the grandmother has “seen” what psychosis looks like, she very much associates these s/s as a function of substance abuse, which has been a common issue in the town. Despite the client completing a comprehensive mhsu residential treatment program, the family cannot see past the stigma toward substance use and psychosis. The client is in recovery from substance abuse but still experiences both positive and negative symptoms, as well as motor s/s of antipsych meds. The grandmother continues to gate-keep the client from reconnecting with his siblings d/t his presentation. She has seen the mother go through many cycles of recovery and relapse for both psychosis and substance use, so through this lens, she feels like nothing has changed. To the extent that “burn out” is appropriate, intergenerational trauma instills a sense of pessimism and reluctance to “get involved” to support the client through his current recovery. It’s challenging when family reunfiication is the client’s main motivation but family continues to be his main source of perceived rejection.

    • #10604

      I’ve been having difficulties with engaging clients’ families due to conflicting work schedules and distance. I should also mention that in my location I am the only EPI clinician. As a community clinician I often work the same hours as families, so the scheduling of education and information sessions has been difficult. Some families live outside of town in locations with no cell service and limited internet capabilities.
      I am currently working with a client who has limited insight into their mental health challenges and lives at home with grandparents. The grandparents are supportive but have not had the opportunity to learn about schizoaffective disorder and the need for consistent q28 day LAI for their grandchild. My client is open to our short education sessions but continues to defer to the grandparents for their insight. The family all live a substantial distance outside of city limits, have limited internet access and do not drive.
      I’m in the process to overcome some of the challenges by engaging community partners like Indigenous Band the individual is part of to see if they can provide transportation through one of their programs. At the Indigenous Band office the client and family would have access to a computer that would allow me to provide virtual family meetings. I am also floating the idea to management and union about changing the work hours to include an evening and/or a weekend (every so often) to accommodate some family schedules.

      • #10636

        Hey Robert,
        These are really great points that I struggle with as well. Trying to connect with clients or families who work the same hours as I do, but I’m confined to certain work hours. It really isn’t conducive to meeting people where they’re at, respecting their schedule, and meeting fidelity standards! Especially when they aren’t closeby and local…

        A completely side note regarding the challenges of working with families, is the reality that the more people we loop in, the more notes and coordinating we do! Going from one contact to 2 or three, means significantly more documentation and planning when staying in contact. It can increase our workload at least two-fold. However, I am still a huge advocate for family involvement regardless of this additional work. The benefits simply outweigh the downsides!

    • #10606

      When working with families, the challenges I have encountered is my ability to provide education to families of diverse cultural, or language background. Finding the right words to describe psychosis and what this may look like can be difficult for myself. Although I can speak Punjabi, some of the words relating to mental health can be difficult to describe and explain. Additionally, if a family does not consider mental health issue as legitimate, it may limit the families willingness to participate in EPI programming. Leading the youth to engage in service solely themselves. Engagement can be seen as youth/client requiring services only.

      Other times, I challenge with confidentiality myself in terms of when it is beneficial to share client’s presentation, changes (positive or otherwise), in hopes to gain a fuller picture of client wellbeing. However, utilizing the strategy of viewing EPI as a family program will be helpful. As it may allow for clients to be more willing to accept familial involvement and support.

    • #10607

      I also experienced the challenge of managing client and family’s expectations. I have a client who is very well supported by her family. However she doesn’t have good insight of her health. When asked questions, she is often influenced by her mother. The client and her family discuss and make medical decisions together. The client experiences multiple challenges – self talk, declined cognition, behavioral issues. The family wanted to try ECT treatment and hoped that client can be cured by ECT and all her problems can be fixed. I talked to client and the family, in group and individually, in both English and their native language, to provide education of what ECT is, pros & cons, and what they can expect from ECT. I emphasized that ECT will not improve client’s cognition and her behavior. It’s the client and her family’s decision in the end but what I can do is to provide sufficient information and support them to make an informed decision.

      As mentioned that I speak the same language as client’s family, thus language isn’t a barrier to me. But I also need to manage the cultural gaps in my practice. Mom once told me that she wanted to try a religious / cultural practice and hoped that her daughter’s illness could be cured. I validated mom’s concerns and I explained that as a person who came from the same cultural background, I’ve heard of such practice and I understand mom’s good intention; however as a medical professional, I do not support this type of intervention as it’s not evidence based. I explained to mom the different perspectives of mental illness between western & eastern cultures and tried to reduce her stigma. I provided guidance and encouraged mom to support client in more positive approach.

    • #10608

      I have not had the experience of working with families under the guise of an EPI program, however I have had many different types of family engagement within previous work in the realm of long term care. Family experiences have ranged for denial and disbelief, to outrage at the systems in place. I think the most difficult challenge I have worked with has been the family that did not have a full understanding of their loved ones disorder or process and thus lack the language or a realistic expectation regarding outcomes. Family education and supporting understanding sums this up. The other aspect of this is the family having differing views from that of the client, and then supporting the knowledge that the client is primary focus, but needs the complimentary support of the family.

    • #10609

      Hello All,

      I have also not had as much experience working with families while with EPI, as I work alongside their team and they refer clients to me for counselling and therapy in the area of concurrent disorders. I also often find that many of the youth with whom I work, are in the system of government care and/or have left home. In my experience with the parents, caregivers and families that I have been able to work alongside – they have expressed guilt, shame, anger, resentment – at the health and mental health system and toward their children. I often find myself navigating interpersonal dynamics of the family, while trying to advocate and support the youth. I have found that similarly to what Adrienne described in an earlier post, I have many difficult conversations with parents, and families, that the youth, or young adult, has choice and agency in their lives – and though the family may feel that they are living at risk or could die from their choices, they do not have control and may not have any influence over their loved ones way of living. I agree that this causes great moral distress and spiritual pain for parents and families – supporting them through this often also requires other resources and supports for the parents and families – such as their own therapy to process their own journey of acceptance.

    • #10611

      Thank you everyone for sharing your experiences!

      Working mainly one on one with the youth, while the clinicians have mainly dealt with the families, I have not had too much experience working directly with them, but I work alongside my team, and have come across many of the struggles that others face working with the families. I agree with a lot of the submissions above when it comes to the challenges that I have noticed that many clinicians experience when it comes to involving families is that the family will place a lot of expectation onto the team when it comes to services and the scope to where we can draw boundaries. A big part of the client’s recovery is the client wanting to see that change, and making active steps towards it. As the clients are adults, we can try to push them but it all comes down to them wanting to make that change before we can play our part. Parents often want the best for their children, so we try our best to understand when they get frustrated, and try to explain that we have to stay within our scope in regards to what we can do as a team to help, and that the change will not come right away, but will take time, as it is a process to get to the recovery stage.

      Overall, most parents have been very thankful and have been a big part of their recovery process

    • #10618

      I have experienced very similar situations to what you describe, Adrienne, where the family is asking for us to “lock up” the client or enforce treatment in some way that is unethical, not legal, nor what the client wants. Most of the time I’ve been asked this is in relation to clients who are using substances. It has been very distressing for myself at times to navigate these conversations with families and I have even been confronted by a family about this while in the middle of a court proceeding for the client. These type of situations have by far been the hardest challenge I have faced with families. Trying to explain to them what we are and aren’t able to do, why the client’s right to make their own decisions is important, while also hearing their concerns empathetically.

    • #10619

      Hi all!

      Thank you for all of your posts on this topic. It has caused some thought provoking opportunities for me!
      I’m new to EPI, but will be working as a family therapist. One of the things that has stood out to me is the challenges of confidentiality, and trying to respect EPI client rights/ wishes. While I think that is important, I think also that having a client with zero family involvement would be a rarity. Even if the client does not permit their family to have access to any of their confidential information (diagnosis, medication, etc), there is still a great deal of support that can be offered. Working with families and providing psychoeducation about psychosis in general (not specific to any particular diagnosis), providing emotional support for them during this time, as well as helping them make a plan to support specific symptoms that they themselves have identified in their loved one (and thus not based on any client disclosure) are ways that I can see interacting with families and strengthening the family unit while still honoring confidentiality.

    • #10622

      A challenge I have seen working alongside families is family wanting to be involved in care but the client not wanting them to be involved in care. Family is concerned regarding patient’s mental health such as wanting to know their diagnosis, medications, undergoing treatment however due to concerns of privacy and confidentiality it can be frustrating for the family to hear this and not being provided with information. There are families that have challenges understanding what confidentiality is and may be due to things such as language barrier or cultural backgrounds. Although it can be beneficial to have families involved in care to provide collateral/updates on how the individual is doing it is important to not breach confidentiality unless there are safety concerns or risks associated with the client.

      • #10625

        Hi Jasmin,
        I have struggled many times with clients who don’t want their families having any information or involvement in their care. I think it’s important to have these discussions with each client. Perhaps they don’t want to involve their family but maybe they have a friend who they trust and give you permission to share with. I understand it must be difficult and frustrating for families who want information and can’t get it. I will sometimes mitigate this by saying that I can’t share certain information without consent from the client/patient but am willing to hear and document any concerns they would like to share. I do share with family members that there are limits to confidentiality stating that safety trumps confidentiality (ie. threats of self-harm or when other’s safe could be at risk). I think a lot of it comes down to the way in which you tell people that you can’t share. You can explain it with respectfully and empathize with their concern. When I worked on the inpatient unit I would sometimes tell a family member to ask the client themselves for the information they are asking.

        • #10892

          Hello Jasmine and Leanne,
          Yes, it is always a balancing act on what we can share/disclose and what we cannot. As we know, and Michele has mentioned, learning how to have client and family feel trust can be established regarding their belief they can be supported by us; that we actually have something of benefit to offer them. In the context of privacy and confidentiality, this can involve, I find, having family be informed of the reason why may not be able to share information about the client, hear are the reasons why, and that I would like to share information but can’t as this time. Client’s throughout the recovery process client’ s will sometimes change/update their consent forms to allow us to share information about the client. So, at the beginning if a client declines to provided consent to share information about their care, I remind distraught parents about this, they are often reassured by this and know they can, generally still reach out to our team for support regardless of the client’s consent and see how we can help.
          I do have a client that would often ‘bounce’ back and forth to adding and withdrawing consent to disclose information to his parents. They live with their parents and would get in intermittent arguments about what client believed was the right decision for his care (involved some semi-delusional themes about medication and that their parents forcing them to be on their medication) Their parents appear to care very much about their grown child but have a history of their child displaying very verbally aggressive behaviour towards them that made the mother especially, feel unsafe. So the parents were really concerned at times about their safety and not being able to know what the current plan and treatment that was happening with the client. I was feeling pressure from the client to make sure I don’t disclose anything to the parents “especially my mother”, and helping the parents feel safe and supported in a sea of unknowns regarding their grown child. I eventually was able to have deeper conversations with the client that appeared to help them see the value and benefit of the parents being a part of his support team, and that he could still feel he had control, autonomy, including withdrawing consent again if desired.

    • #10643

      Coming from the substance use background, family often have different goals from clients as to their goals. Someone telling you that you need to stop using usually isn’t going to be as motivating a factor for stopping as finding that internal motivation. But caregivers see how the substances impact a person so can become panicky in wanting us to make the client stop. It can be a challenge when there are different goals between parties. For me, I try to move in the direction of change and help loved ones see how that can be a benefit in itself. It is just having patience with the process and realizing a persons autonomy. Having loved ones and clients talk about their expectations and seeing if they are on the same page is a good place to start. It gets complicated when there may be rules to living in the house that may be different from client’s goals (ex. you can only live here if you are no longer using substances). It can be a constant balancing act of expectations vs. the reality of the situation.

    • #10887

      What a great conversation! When we cannot agree on using a diagnosis, or other Western Medicine terminology, sometimes it’s helpful even to get specific with a client or family about what’s working and what seems to be giving them some trouble. We had a strong opposition from parents in once circumstance where they did not want their child labelled with something that would bring stigma. We stepped away from insisting on a label, and focused instead on what we could agree on. We all wanted this young person to be able to live a good life, to engage in some activity outside the home that felt meaningful, and to have the good judgement to do so safely. In the context of what we called a psychotic episode, the youth had been sleeping a lot and would wander outside in a questionable neighborhood after midnight as they were disoriented and not sleeping when parents would sleep. Ultimately, after this youth acted on some delusional thoughts that they should engage in sexual activity with people they didn’t know well, parents and the EPI team and the hospital acute care team all agreed that whatever we called it, this was not in this youth’s best interests. The youth was unbothered by the behaviour, and could barely talk about what was happening, except to say something that was pretty non-sensical. Even within parents’ understanding of what was happening, there was agreement about the importance of their child being able to exercise some good judgement and they could see this was missing. Sadly, after successful LAI treatment and full clearing of positive symptoms, parents decided to remove their child from treatment again, only to discover a repeat of the risky behaviour some months later and the child seeking emergency assistance by sneaking out of the home. There was a lengthy hospitalization before the confusion cleared. I believe this individual was starting on Clozapine last I heard, after about 2 years of on and off treatment. As a parent, I can imagine it be quite alarming to trust a team of strangers. I had compassion for parents and for the team – we all agreed we wanted this youth to be well and live a good safe life. Phew, this is important and sometimes very difficult work. Thanks all for your heart and compassion you’re bringing to the work.

    • #11158

      A challenge I face is when families are looking for diagnostic clarity or understanding on the clients care plan, medications, services they are accessing, but the client does not have an ROI in place and does not want their family to know information about what is going on for them. It makes the psychoeducation part of this work very challenging.

    • #11190

      While I don’t work with EPI, I do work on an ACT team. For us family involvement can be challenging. Some of our clients don’t have any family, nearby or otherwise, and would likely benefit from having some sort of family involvement. We do have a fair amount of clients right now whose families are involved in their care, and it is obvious how much of a difference it can make. I certainly wish we saw more family involvement with our clients! Lastly, we have a few clients (not many) whose families are involved but can actively hinder the support we are trying to give the client. What is challenging here is how to get everyone on the same, or at least a similar, page. It is clear to me that even when families make support to our clients challenging, they are doing it because they want what is best for their family member. Being able to navigate these challenging relationships and interactions then can impact the client and their wellbeing, despite both parties doing what they think is best to support. The best way we have right now of attempting to mitigate this is continue to have difficult conversations with those family members, and where necessary, implement some boundaries such as having only one point of contact on the team to the family member(s) so they are getting the same messaging every time.

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