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Scholarships available for Fall 2020 SWHPN Summits

Thanks to a generous grant from the American Nurses Foundation, SWHPN is able to offer a limited number of scholarships for our August, September, and October SWHPN Summits. These scholarships are for both members and non-members, and will cover the costs associated with one Summit.

We are hoping to help social workers that have been negatively impacted by COVID, so that you may continue to learn and get CE hours during this difficult time. In the event that demand exceeds the available supply of funds, we will use a random lottery to determine the scholarships. Applications will be accepted on a rolling basis until September 14, 2020.

APPLY HERE

How SWHPN Is Addressing Diversity

Last month, more than 125 SWHPN members, social work professionals, and students joined together for our virtual June Summit, “Cultural Competency in Hospice and Palliative Care.” Held on Juneteenth and during Pride month, we wanted to use the day as an opportunity to go beyond didactic presentations to showcase meaningful, actionable steps social workers could take to address racism, explicit and implicit bias, intersectionality, and more. During the post-Summit “networking happy hour,” attendees stayed online for an extra hour and a half to continue the discussion. It’s clear there is a hunger for more information about how to dismantle inequitable systems that harm Black people, Indigenous people, and people of color (BIPOC), whether they are patients, families, or social workers.

Post-Summit, what is SWHPN doing to address the changes that are needed?

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Social Justice and Palliative Care Policy

In an effort to engage in social action to address racial inequity, SWHPN’s Statement on Racism and Structural Inequities in Hospice and Palliative Social Work is suggesting the bold and necessary step of asking us to critically question how we, as hospice and palliative care social workers, are contributing to maintaining systems of inequity in the work that we do.
These are hard conversations to have, but needed to do the work necessary to correct racial and ethnic disparities inherent in end-of-life care. In the book, Anti-Racist Social Work, Lena Dominelli writes that racism is not just a matter that can be “educated away,” but rather requires the “eradication and the transformation of our socio-economic and political structures.”

To begin to be anti-racist palliative care and hospice social workers, we need to examine our own personal biases and the systems of care that pay our salaries and contribute to poorer care provision for people who are not white. Using a lens of intersectionality to examine the market based economy of health care in the United States, having a life-threatening illness and being black or Hispanic unfortunately, leads to poorer end-of-life care outcomes. As our healthcare system struggles to care for those impacted by COVID-19, we have seen that higher rates of infection and death have occurred in nonwhite communities. Palliative care research also tells us that racial and ethnic minorities experience a higher likelihood of difficulties in managing symptoms from all illnesses, including higher rates of experiences with pain, a higher likelihood of hospitalization in final stages of life, and a higher likelihood of discharge from hospice. According to the National Hospice and Palliative Care Organization (NHPCO), hospice utilization rates for blacks and Hispanics/Latinx persons are still vastly disproportionate when compared to the general population, with 82.5% Caucasian, 8.2% African-American, and 6.4% Hispanic/Latinx patients enrolled in hospice compared with the overall U.S. population percentages of 60% Caucasian, 12% African-American, and 18% Hispanic/Latinx. 
In a recent article I co-authored in The Journal of Policy, Practice and Research I attempted to examine these disparities using a social justice informed policy analysis to examine two of the primary payors for end-of-life care, the Hospice Medicare Benefit and Medicare coverage for Palliative Care. In practice, these federal policies have substantially socially unjust effects by providing disproportionate advantages for those who are white, have family caregiving support systems, and higher socioeconomic status.

We need to ask ourselves, what role do we play in maintaining this hospice and palliative care system of structural inequity that favors and maintains a norm of whiteness and socioeconomic stability?  We also need to recognize how the hospice and palliative care workforce continues to not only serve more whites than other ethnic minorities, but also maintains a majority of whites employees in professional and leadership roles, while at the same time maintaining a low paid workforce of direct care workers who are more likely to be black and brown women.  

Social workers are trained to be integrated practitioners, meaning that we can, and should, be considering multiple levels of practice when working with client systems. However, often, social workers tend to focus primarily on roles that are more reflective of micro level of practice. A recent job analysis of 482 hospice and palliative care social workers published in the Journal of Social Work in End-of-Life and Palliative Care showed that social workers consider macro practice or “engaging in social policy and community development” to be of lower importance in job tasks when compared with other more traditional micro practice roles. This moment in history should be recognized as a call to action for social workers to engage in policy analysis and examine policy outcomes to better develop skills in policy action and political organization.

Interested in learning more concrete ways to influence and address macro level changes that are needed?
  • See SWHPN's List of Resources for Health & Race Equity
  • Participate in SWHPN's next TweetChat, which are announced on the SWHPN Events Calendar
  • Send us your resources or suggestions for what we can share with the field or how we can improve as an organization of social workers

How Will SWHPN Change in Response to the Killings of Breonna Taylor, George Floyd, Riah Milton, Dominique Fells, and Innumerable Others?

As social workers in this pivotal moment, there are key lessons from the field of social work, and particularly the field of palliative and hospice social work, that we at SWHPN can apply to help some of us become better both in our work and our day-to-day lives.

1: listen more than you speak. 
It is very easy for those of us who have any privilege to think that we can speak on an issue, but this is often where we misstep. The opportunity for people in positions of privilege to speak and write with words that contain microaggressions is frequent, especially if those of us who have privilege do not acknowledge that privilege. Acknowledging out own biases can be difficult, but doing so without a defensive response is one way to help in this moment.

2: do not expect those who would be hurt by your questions to respond to them.
Just as you would not ask extremely vulnerable patients such as those who are in extreme pain, those experiencing extreme existential suffering, or those who are vulnerable in other ways to participate in a research study, do not expect black, indigenous, and people of color to teach you about diversity, equity, and inclusion if you are a white person. As one person put it: “That is the oppressed teaching the oppressor." While there may be opportunities to learn in webinars and other formal settings, for white social workers, it’s important to remember that some of our friends and acquaintances may be emotionally exhausted right now, beyond what you are feeling, and you will need to respect that when reaching out to them.

3 (this one’s a challenge from our Vice Chair, Karen Bullock): think outside the box.
During the last SWHPN Summit we had an open networking session where Karen made an excellent point about language and how she does not like to be put in a box. She didn’t suggest that anyone else follow her lead particularly, she just suggested that we all think critically about the language that we use for ourselves and for others. As we know in this field, language can be fraught. A “difficult family” can be code for many things, particularly when race or ethnicity are applied. When we’re talking about language such as "cultural competency", "white fragility", "anti-racist", it is important for us to explore what these terms mean to us, as well as to unpack what they may mean to others and to examine why we may want to use them, if at all. Before the last SWHPN Summit, a SWHPN member reached out to ask if “Cultural Competence” was the name we wanted to use for the Summit right now and my honest answer was, “I don’t know." Being open to discussion without defensiveness and without taking things personally but recognizing that there are deeply emotional issues around these issues is an important part of how we face up to making changes in our organization.

4: keep your ethics in check
I have seen several posts now on NASW discussion boards, Twitter, and various listservs where social workers have harkened back to our professional ethics and values. Recently, social workers Lauren Schmidt, MSW, LICSW, APHSW-C, Daphne Lindsey, LICSW, Elizabeth Julian, LICSW from Seattle Children's reached out to express their disappointment that SWHPN had not posted any resources exploring the intersection of racial inequity and COVID-19. This was after their colleague Arika Patneaude, MSW, LICSW, APHSW-C, EMMHS had reached out to express a similar disappointment a few weeks back. All of this is to say that we should be doing better, and they are right: this is in our bones as social workers. Here are just two of our core values that we should be turning to right now (and really, always) as we engage in conversations about inequities across all intersections:
  • Value: Social Justice
  • Ethical Principle: Social workers challenge social injustice.
  • Social workers pursue social change, particularly with and on behalf of vulnerable and oppressed individuals and groups of people. Social workers' social change efforts are focused primarily on issues of poverty, unemployment, discrimination, and other forms of social injustice. 
  • Value: Dignity and Worth of the Person
  • Ethical Principle: Social workers respect the inherent dignity and worth of the person.
  • Social workers treat each person in a caring and respectful fashion, mindful of individual differences and cultural and ethnic diversity (National Association of Social Workers [NASW], 2008).
SWHPN is ethically obligated to educate about social justice and to speak on the dignity and worth of each and every one of our members, as well as each and every one of the patients and families that we serve, as well as those who we do not yet serve but who are eligible for our service. In truth, we recognize the dignity and worth of all persons, and we would like to work together with our members to highlight the work we are doing to improve our work in showing that we do care about these ethics, as well as in highlighting the incredible resources that are out in the world.

With that in mind, below are the steps we have taken so far to change the organization and the steps we plan to make in the coming months:

  1. At the July board meeting, we are discussing our strategic Equity, Diversity, and Inclusion (EDI) plan. This will include embedding EDI strategic plans within each committee (rather than creating a new committee specifically for EDI). 
  2. We will be asking all educational presenters to include EDI materials in their presentations. 
  3. We will start an Equity, Diversity, and Inclusion Special Interest Group (SIG) within the next few months, while also asking all SIGs to embed EDI within their goals and action planning.
  4. We will share new crowdsourced resources every Friday about 3 topics: Grief and Bereavement, COVID-19, and EDI. If you have read a great article, listened to a thought-provoking podcast, or watched an illuminating webinar on one of these topics, we want to hear about it! You can submit these on this form until 5:00 p.m. EST to include it in that week’s SWHPN Shares post.
Here are a few recent resources we're drawing some learning from; we know there are many more and hope you'll submit those here.

  • Code Switch: Why Now White People: in this episode, hosts Gene Demby and Shereen Marisol Meraji discuss theories for why the country, and specifically white people, appear to have responded to George Floyd’s killing when so many others have gone unanswered.
  • Income emerges as major indicator of coronavirus infection, along with race: this Washington Post article describes who is getting sick in the pandemic. This won't be surprising information to medical social workers, as poverty is a social determinant of health and a lever of power, but it will be important to note, especially for our patients who live in places of intersectionality.
  • Suggested by social workers Lauren Schmidt, MSW, LICSW, APHSW-C, Daphne Lindsey, LICSW, and Elizabeth Julian, LICSW at Seattle Children's:

To our members, we ask that you make a commitment to equity, diversity, and inclusion both with your colleagues and with your patients. If you’re white, commit to listening to colleagues and patients who are hurting. Tell us when we make a misstep (and when it doesn’t take too much energy). This is going to be a difficult period of change and I can’t promise we will be perfect; but I can promise we will try as hard as we can, and that we will try to apply the above principles.

Allie Shukraft, MSW, MAT, APHSW-C | SWHPN Board Chair

A Way to Respond: Learn and Share Your Voice

We know there is a lot going on. In just the past twelve weeks, we’ve seen the COVID-19 pandemic blaze through our communities, resulting in more than 100,000 deaths. We’re seeing the related economic downturn affect workers, businesses, housing, food security, and more interrelated systems. We’re sharing the righteous anger from thousands of people across the country as they protest the impunity with which racial, ethnic, and xenophobic hatred and violence has been allowed to flourish. We echo the statement cried out on the streets and emblazoned across social media that Black Lives Matter.

Through it all, hospice and palliative care social workers have faced changing norms and practices head-on. We’ve grappled with determining who is considered an “essential” worker eligible for PPE. We’ve learned how to conduct family meetings in our living rooms and parking garages via videoconferencing and new apps. We’ve figured out how to show a smile behind a mask, how to show concern without being able to hug, and how to record memories and share presence for loved ones who couldn’t be physically present. 

AND we’ve done all of that while also grappling with the social justice issues that, due to hundreds of years building up layers upon layers of structural racism and inequities, are suddenly split open for all to see. Of the COVID deaths, we see the disproportionate impact it has had on Black people, Native Americans, Latinos, LGBTQ+ people, incarcerated people, and other marginalized communities, due directly to historical factors including redlining, unequal access to  to jobs, healthcare, and insurance, and stigma from healthcare providers. In the economic downturn, we see the same factors at play again, affecting those already struggling; and again in the police and judicial systems that overwhelmingly harm communities of color. It has been a lot to take in and process, even more for our social workers who are living it as a reality.

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SWHPN Guidance for Talking About Masks

As some social workers who have been working remotely are now returning to work and going into people’s homes wearing masks, we are hearing reports that some are getting pushback from both patients and coworkers about wearing masks. Some have shared that patients have expressed a worry that this is an indication that they may be sick with COVID-19, while coworkers have expressed that they do not feel they need to wear masks for various reasons. Below we offer some suggestions for responses that you could give to both of these groups. These responses were provided to us from various social workers we have spoken with, while others come from a variety of resources you can click on to learn more.

Some suggested prompts:
I wear a mask in every patient’s home and in all public spaces while I am working.
One of the first responses you might choose to give to patients can be to normalize that this is standard procedure, something that has been recommended by the Centers for Disease Control for all people to wear a cloth covering their nose and mouth in public spaces or in situations when they cannot be physically distanced (6 feet apart). The primary reason for healthcare workers to mask is to protect patients. In this way, we keep any germs that we may have from transmitting from ourselves to them and we are following recommended practices that are based on scientific evidence. While we do not suspect that we have the virus at this time (if we did, we would be at home and not at work), research has shown that people can be infected with COVID-19 and not showing any symptoms for up to 2 weeks before they begin to feel ill.

Wearing a mask is not a political or cultural statement for me.
While I understand some people believe that by wearing a mask, they are stating that they have a certain belief, my personal beliefs have nothing to do with the choices I make at work. Rather, I make choices based on the policies of my employer and what is recommended as in the best interest of the patients and families that I work with.

Frequently Asked Questions:
What if a patient or family refuses to allow you in the home if you are wearing a mask but your agency has asked you to wear one or you feel it is what is recommended for patient care?
SWHPN recommends that you do not visit patients and families in person without wearing a mask until general masking recommendations have been lifted by the CDC, and especially if masking is recommended by your employer. If a patient or family member feels that a mask is an obstacle to a visit, we recommend that you do not remove the mask for a visit, but change this particular patient’s care plan to be one that is virtual when possible, unless the family member that objects to masking is not present or changes their objection.

What if a co-worker refuses to wear a mask?
We have heard reports from some hospice social workers that some coworkers do not want to wear masks for various reasons (I live alone, I know I am not sick, etc.). Because we as social workers know that we cannot control another person’s behavior, and masks are intended to keep other people healthy, rather than the wearer, we know that this can potentially impact your health. If a co-worker refuses to wear a mask, you have 3 options: talk to them and provide education, speak to your leader about the issue, or stay at least 6 feet away from this co-worker, something you can control.

Another talking point you can try is sending them articles about masks, like the one above from the CDC, or one of these from NPR: https://www.npr.org/sections/health-shots/2020/06/21/880832213/yes-wearing-masks-helps-heres-whyhttps://www.npr.org/2020/06/17/879682816/a-growing-body-of-research-highlights-the-importance-of-wearing-face-masks, and https://www.npr.org/2020/06/11/875311079/how-the-widespread-mask-use-could-slow-the-coronavirus-pandemic.

Of course, there are many different people in the world and they may have their own reasons for not wanting to wear masks. As one author writes about here in The New York Times, many black men are afraid to wear masks for fear of racial profiling. In the Atlantic, another author posits that a public health approach for people who feel asking them to mask is infringing on their rights, taking an empathetic approach, as outlined here, will be more successful than badgering, shaming, or pushing. 

One final thing to consider when providing patient education: utilize tools that are culturally competent and meet the health literacy needs of the patient and family. There are a number of healthcare inequities which are being highlighted during this pandemic and as a social worker, it's important to address and discuss these issues with your clients so that you can assess and hopefully address what barriers may exist within their medical services. Providing linguistically and culturally appropriate education is a start. Talking openly about racial and ethnic inequalities with your patients and families is a step. We will be posting more about racial and ethnic disparity and the COVID-19 pandemic on this site, but here are some tools you can use when educating about masks and COVID health literacy:

It Starts With Us: SWHPN Statement on Racism and Structural Inequities in Hospice and Palliative Social Work

The Social Work Hospice and Palliative Care Network (SWHPN) wholeheartedly rejects the killings of black and brown people by police. As social workers helping ease suffering at end-of-life, we cannot let racism and disparities in care go unchecked. We are here to support a more just, equitable system for all.

Our organization is comprised of nearly 1,000 hospice and palliative care social workers throughout the country. Our core work focuses on providing professional development, amplifying evidence-informed best practices, and advocating for improved policies and increased funding, so that all patients and families experiencing serious illness receive expert psychosocial care which alleviates their suffering, improves their quality of life, and facilitates their dying in accordance with their wishes.

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SWHPN Shares: Being a Hospice Social Worker in a Time of Crisis

A few months ago, a Child Life Specialist who I work closely with and I discussed talking about feelings. She assumed I'm good at this because I talk about feelings all day long—most days at work, and often with colleagues and friends who come to me to talk through difficult emotions. I laughed and said, "Yes, I spend all day talking to people about their emotions; that's easy. Talking about my emotions is something else altogether." If I were to gather a room full of social workers together, I'd be willing to bet the same would be true for many of us.

But now that a worldwide crisis has hit, we're forced to face at least some of our emotions on a daily basis in order to manage our own mental health and coping. For me, as someone with a mental illness (major depressive disorder), I have to be conscious not only of my treatment (medication and therapy adherence on a routine schedule) but also how I am tapping into my own coping mechanisms. As we ask in our field, how are they working for me? In addition to the struggles with depression I typically deal with, which can be amplified by isolation and hopelessness if I let them, I also struggle with a feeling that many people are confronting now, especially those with disorders: anxiety.

One tool we can use to help us manage anxiety is mindfulness, as it can help us to focus on the present moment and stop perseverating on the past and the future. There are a number of free tools out there right now that can be helpful with this: Mindful.org has a page of free resources, including articles and meditations. MindwellU has a 30-day mindfulness challenge that can encourage you to slow down a few times a day.

Another tool that can be helpful is to put the experience we are all having in a cognitive frame that makes sense for you. In the first episode of her podcast, Unlocking Us, Brene Brown speaks about something she labels "FFTs" for "_______ First Times", and she shares that the ability to normalize experiences that are foreign to us, like going through a pandemic, helps us realize that our responses, like anxiety and fear, are typical. This helps us put the experience into perspective and reality-check our expectations. In this way, Brown gives us a tool with which to respond to the FFTs we keep experiencing during this crisis, so that we can stop reacting to the experience and start living again.

Since we talk about going back to the social work basics in times of crisis, it doesn't hurt to mention the self-care basics when dealing with feelings of anxiety, stress, and worry:





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Goodbyes in the Time of COVID

As COVID-19 has changed visiting policies in hospitals and other facilities, it has also changed how people say goodbye to the ones they love, and how we as social workers support them in saying those goodbyes. Anticipatory grief is happening virtually and in isolation, and part of our work during this pandemic is connecting families with patients, supporting them as they say goodbye, and acknowledging the loss of saying that goodbye in person. As a palliative care social worker, I have encountered many instances in which family members could not be present to say goodbye to the patient. Some family members are COVID+ themselves, are immunocompromised, or live across the country or world. While one healthy visitor is allowed to visit a patient who is imminently dying, predicting someone’s final hours and minutes can be difficult to do, and sometimes family are concerned about coming to the hospital and putting themselves at risk.

Technology has allowed us to support families in their grief, and for those who do not have access to a video camera, telephone communication has proved vital. There are some roadblocks to connecting families with patients- clinicians working remotely, a limited number of staff who are allowed to enter a COVID+ patient’s room, a high number of palliative care consults, limited technology that staff and family members have access to, and ever present technological glitches. Despite these barriers, my palliative care colleagues have wielded creativity, compassion, and collaboration to facilitate goodbyes, and share messages of love in a time of overwhelming death and despair.

Over the past several weeks, my team has been able to coordinate Zoom video meetings so that families can see their COVID+ family members at the end of their lives. We have set up Zoom meetings, disseminated the login information, and our physicians and nurses have brought iPads to patients so families could see their hospitalized family members. In instances where the physician cannot enter a patient’s room (either to limit exposure or to conserve PPE), and the patient cannot hear their families on the iPad, we have invited those in attendance at these meetings to write messages in the chat box, or to say messages out loud with the promise that we would deliver these messages to the patient. Over Zoom, families have joined together in grieving the loss of their family members who have meant so much to them, sharing memories and gratitude, and saying their goodbyes.

After these meetings, I have transcribed their written and spoken messages so they could be placed by the patient’s bedside. The physician on my team suggested I compile them into transitional documents for families, which they could continue to reflect on as the patient transitioned. I have emailed the documents to families with space for additional messages for those who had been unable (either logistically or emotionally) to join the call, and placed one-page abbreviated versions by patients’ bedsides so physicians and nurses entering the rooms could read brief messages to patient from their families. This interdisciplinary intervention aimed to facilitate connections between patients and families, and we hoped it would provide opportunities for care providers to connect with their patients as well. Working within the boundaries we had, we hoped to provide support, and were grateful that families could connect with patients and with one another through video and written text.

Another intervention we have used with caregivers for patients who did not have access to a video camera or smart device, and were unable to visit at the end of life due to visitation restrictions, was to pass on messages verbally. In circumstances where bringing a phone to the patient is not possible, I have asked friends and family members what they wanted to say to patients. They have shared messages such as “You are not alone” and “I love you.” These messages are then imparted to the patients by physicians, nurses, and social workers. It is so important for friends and families to know that, though they are not with them physically, their messages will be delivered.

Collaboration has always been inherent in palliative care, though I have never been as grateful for it as I am now. As families and patients remain in quarantine, healthcare workers are bringing people together virtually in a number of creative ways, and palliative care social workers are uniquely positioned to provide anticipatory grief support to the families and friends of patients with COVID-19. As we navigate the psychosocial impact of COVID-19 on grieving families, we can continue to explore new ways of facilitating communication and share our newfound interventions with each other.


Kasey Sinha, Palliative Care Social Work Fellow at Mount Sinai Beth Israel in New York, NY. SWHPN is accepting guest submissions on COVID-19 practice and interventions at [email protected].

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Update on Social Work Open Discussions

Over the past month, our weeknight Social Work Open Discussions have been attended by social workers and psychosocial professionals from over thirty states and four countries! Thanks to all who participate and make these meetings the dynamic discussions they are during this critical time.

We are updating our schedule over the coming weeks to consolidate these meetings, as well as provide some discussion around specific topics. As always, these remain informal gatherings and safe places for clinicians and colleagues to share feelings and fears in an effort to find renewal, support, and social connection.

Beginning Tuesday, May 5th, please join us on Tuesdays and Thursdays at 7:00 pm EST. You can register to participate here. Come as little or as often you need.

See the updated schedule:

  • Thursday, April 30th: Topic: Grief and Trauma with special guest April Naturale. Looking to the future, there will likely be some level of grief and trauma for our colleagues and a large portion of the world that exists for a long time. What are we going to do about that as a field and as individuals?
  • Tuesday, May 5th: Open Discussion
  • Thursday, May 7th: Topic: New Normal. What does the "new normal" for hospice and palliative social work look like, and what can we do to ensure that our field is equipped to support patients, families, and colleagues? What are you hoping for, what are you worried about?
  • Tuesday, May 12th: Open Discussion
  • Thursday, May 14th: Topic: Transitions. How has your role changed since COVID-19? If you're working from home or have changed locations, what support do you need? How are you adapting? What things will remain post-COVID? 

You can find our most updated list of events and Social Work Open Discussion topics on the SWHPN Events Calendar.





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When You're Working Remotely as a Hospice or Palliative Care Social Worker

 

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Special Call for Papers: Social Work Practice during Coronavirus (COVID-19) Pandemic

Deadline: December 31, 2020

The coronavirus pandemic has created changes and challenges in how social work practice is being conducted in all areas of the health care system due to guidelines and restrictions put in place in response to the pandemic. Thus, hospice, palliative and other social workers are being tasked with supporting individuals, families, and co-workers in new, unforeseen, and creative ways. In this special issue, social workers are encouraged to share reflections about the situations, challenges and changes they are experiencing as well as the processes of new ways to connect with those in most in need of intervention. In addition, it is important that social workers’ practice self-care and so papers on approaches to doing so during this stressful time are welcome.

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Working with Families Facing Undesired Outcomes During the COVID-19 Crisis

As SWHPN gathers resources for its social workers who are facing an unprecedented time in their practice, we've issued our first tip sheet: Working with Families Facing Undesired Outcomes During the COVID-19 Crisis.

You can find tip sheets and additional tools, resources, and information on the COVID-19 Resources PagePlease share widely.

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