Patient Engagement

Wilderness: Families’ Perspectives of the Mental Health Care System (Part 1)

Mental health care providers strive to offer patients and their families comprehensive and compassionate care. However, the mental health care system too often falls short of this mandate. In order to transform the health care system, it is often helpful to view it from the perspective of the family members who are trying to seek care for their loved ones.

Wilderness is a 10-minute film about a mother’s journey through the system: . Directed by Dawn Wilkinson and produced/acted by Penny Eizenga, it won the Remi Platinum Award for Best Drama in the Short Film category at the 2012 Houston World Film Festival. It is an honest portrayal of the barriers and problems many families face seeking help for their ill relatives. It highlights compelling universal experiences and struggles confronting family members trying to seek help for their loved ones. It raises serious questions on some care providers may interact with family members.

We have had students, family members, and health care providers view the film in a series of workshops held in Hamilton and Toronto, sponsored by McMaster University. The latest viewing of Wilderness occurred at a workshop held on May 19, 2015 at the American Psychiatric Association Conference, Toronto Convention Centre. The objective was to empower psychiatrists, mental health care providers and learners to make changes in their practice that would help strengthen families in their journey towards supporting recovery for their loved one. Panelists who participated in these workshops and focus groups included Jill Dennison, representing [at the time] the Hamilton Branch of the Schizophrenia Society of Ontario, Elizabeth Ward, RN Family Educator from the Cleghorn Program Early Intervention in Psychosis St. Joseph’s Health Care Hamilton, and various family members of young people who sought help for a first episode of psychosis. Dr. Alexandra Paventi Douglas, a psychiatry resident at McMaster University, contributed to the analysis of the focus group feedback.

What are some of the needs of family members trying to access care for a loved one experiencing a first episode of psychosis?

The film highlights important issues that may not be addressed by the mental health care system. The pathways to care are rarely direct. Families may take their loved one to three or more different healthcare providers before finding one who can offer help. Families can sometimes feel excluded from the mental healthcare process. Sometimes their loved one does not want to see family members during periods of crisis or admission to hospital. Patients may spend substantial periods of time in seclusion. Sometimes staff dissuade visitation or participation in the treatment process. Separation may heighten the strain experienced by the family. Family members may hide their concerns about their loved one from friends and co-workers because of concerns about stigma. The whole family system may experience exhaustion from the stress of trying to manage. Feelings of grief and desperation among family members can lead to burn-out.

Healthcare providers may be in a position to address some of these problems but may not always identify when it is occurring. This film suggests that healthcare providers need to be more in tune with the distress that families undergo because individual family members may feel very alone and isolated in dealing with their loved one, in addition to the mental health care system. It highlights the need for mental health care providers to recognize the family’s need for education, support, and partnership in caring for mentally ill youth. Compassionate listening by a healthcare provider may be invaluable in helping families stay united and connected to each other, and their ill loved relative. Encouraging visits with family and finding suitable ways of allowing family participation in the treatment process may help the care providers offer more effective and compassionate care, in addition to supporting the family system. Ultimately providing supports to the family may improve outcomes for our patients.

How can care providers maintain confidentiality while seeing the family?

Dealing with confidentiality can be a challenge when treating teenagers. However, sometimes health care providers use confidentiality as a reason for not meeting with family members. Including the family in the treatment process is not about telling the family member everything that their son or daughter had said. Rather, it is about listening to the families’ concerns, gathering their observations, and providing general advice on how to manage situations without disclosing confidential information.

During the assessment phases, clients and family members should be seen separately. In a multidisciplinary team, one of the care providers can see the family at the same time that the doctor or another member of the team meets with the young person. However, meeting with the young person first before interviewing the family may help to build rapport, trust, and to address concerns about privacy and confidentiality. If the health care provider negotiates the boundaries of confidentiality first with the young person, the patient may be more willing to allow the family member to be involved. Often young people will request that certain details remain confidential, say their sexual history or their substance use, but will grant permission to disclose to family members other medical issues regarding their illness or treatment. This way the client’s confidentiality and privacy can be protected, but the staff can make use of the family’s input.

Also, the family may have relevant information that they want to divulge but may not feel comfortable saying it in front of their loved one. For example, the family may not feel comfortable revealing concerns about suicidality or aggressive behaviours in front of their ill relative. Collecting data separately allows staff to obtain twice as much information but in half the time. This approach enables respect for the client’s privacy but promotes release of relevant information from the family. Family observations can be vital for devising a recovery plan, hopefully, one that all parties can contribute to and support. In cases where the program does not have the luxury of having staff assess the patient and the family separately, data can be collected one at a time. However, all parties should be brought together to discuss the plan. By assembling the family, client, and staff to discuss the plan, the care provider has a better understanding of the potential obstacles and barriers to implementing it. The various stakeholders have contributed to the plan so they may be more committed to making it work. In essence, healthcare providers often need the support of family members to help convince the young person to participate in the treatment process.

Conclusion:

In summary, the film makes strong statements about the impact of excluding families from the treatment process. Families may need guidance from care providers on how to engage productively with the system. Mental healthcare providers can develop strategies to include family members while respecting client confidentiality. In September 2015, the final segment of this two-part blog on the film Wilderness will explore strategies to help families manage in situations where their mentally ill relative refuses to seek care.

– Suzanne Archie, June 2015

  1. Archie S, Akhtar-Danesh N, Norman R, Malla A, Roy P, Zipursky RB. Ethnic diversity and pathways to care for a first episode of psychosis in Ontario. Schizophr Bull Jul 2010;36(4):688-701.

 

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