Beliefs,Suffering, and Healing: A Clinical Practice Model for Families Experiencing Mental Illness

PURPOSE. Mental illness often changes families' lives and relationships forever. A Family Systems Nursing framework is proposed for working collaboratively with families. CONCLUSIONS. The Illness Beliefs Model ( Wright & Bell, 2009 ) offers clinicians ways to target illness beliefs that may perpetuate or, alternatively, soften suffering. PRACTICE IMPLICATIONS. We have learned from families that it is often not the family member with the illness who is suffering most, but rather, other family members. The complexity of “relational suffering” challenges mental health nurses to acquire knowledge and skills to work with families to soften physical, emotional, relational, and spiritual suffering.     

Physically manifested illness in children and adolescents. A biobehavioral family approach.

This article presents a family systems approach to the assessment and treatment of children and adolescents with physically manifested illness. A biobehavioral continuum of psychologically and physically manifested disease is offered to replace the false dichotomy of organic versus psychological illness. The Biobehavioral Family Model, an empirically validated model of the mutual influence of family relational patterns and childhood illness, organizes the treatment approach. The Family Process Assessment Protocol provides a method of diagnosing the child's illness in the context of family relational functioning. Two cases, a child with conversion disorder and a child with asthma, illustrate this approach. Additional family systems approaches are referenced in a table with citations.     

Ongoing transitions: the impact of a malignant brain tumour on patient and family

Although primary malignant brain tumours represent only 1.4% of all cancers, it is considered one of the most devastating types of cancers in adults. From the time of diagnosis, the patient and family embark on a "roller coaster" ride of uncertainty, fear and hope. Despite improved medical outcomes, patients often experience severe functional impairment, as well as behavioural and cognitive dysfunction. Subsequently, they suffer from greater dependency and hopelessness than other cancer patients. The family caregivers are faced with multiple demands such as taking on new roles within the family and caring for their loved one while grieving the loss of the person they knew. The role of the nurse is to support the patient and the family throughout the illness trajectory, identify and promote their strengths and mobilize the necessary resources to facilitate patient and family coping. The purpose of this paper is to present, via a detailed case study, the impact of a malignant brain tumour on the patient and the family. The nursing strategies used to help them make the necessary transitions throughout the illness trajectory are discussed.     

Families living with acquired brain injury: a multiple family group experience

Although the use of multifamily group work is well established within the mental health field, it remains an underutilised method of treatment for families affected by brain injury. This paper reports on a pilot project exploring multifamily group work with families with a parent with an acquired brain injury. Six families met for a total of 12 sessions over a period of 6 months, with session themes informed by the Bouverie Family tasks model of adaptation post-ABI. The project was evaluated using qualitative and quantitative research methods, with pre, post group and 3 month follow up measures of individual, couple and family functioning. Parents reported generally reduced levels of personal distress at follow up but continuing high levels of marital and family dysfunction. Children were generally reported to be well functioning, although parents were particularly concerned about the impact of family disruption and violence on their children. Families were unequivocally positive about their participation in the group with benefits including reduced feelings of shame and isolation, provision of mutual support, increased understanding of brain injury, sharing of difficult experiences and movement from blame to compassion. Further research is warranted on the specific applications of multifamily group work with acquired brain injury.     

The socialization of adolescent coping behaviours: relationships with families and teachers

A motivational theory of children's coping identified aspects of relationships--involvement, structure and autonomy support--that are expected to determine whether coping will be characterized by approach (active) or avoidance. Associations between adolescents' (N=487, Age M=14) relationships with families and teachers, and coping behaviours were examined. Whether a Family Primacy Model or a Context-Specific Model best explained the findings was also determined. A Family Primacy Model received predominant support; adolescents with more positive family relationships used more active coping with problems at home and school. Positive relationships with teachers predicted more active coping behaviours, especially at school.     

The family support group in the treatment of amyotrophic lateral sclerosis

Support groups are effective means of addressing the psychosocial needs of patients with amyotrophic lateral sclerosis and their families. An education-support group for family members of patients with ALS has been functioning at New England Medical Center in Boston and has been found to be successful in helping families and, therefore, patients to cope with this stressful illness. This article discusses the benefits of this group to families and patients, family members' roles in caring for and coping with this illness, the group's structure and development, and gives suggestions to others who are considering running a group of this kind. Our experience has shown that group participants feel less isolated, less fearful, and less threatened than prior to their involvement in the group and gain a sense of empowerment that enables them to meet the extensive caretaking demands of the patient with ALS. The contribution that an ALS Family Support Group provides is a component in the care of the patient with ALS that can be critical to families dealing with this illness.     

A family experiential model of recovery after brain injury

The Family Experiential Model (FEM) described in this article is a therapeutic "navigation tool" for families traversing the recovery process with their loved one after brain injury. Its conception furnishes a personal voice and the pragmatic "stoplight model" depicts how the family's myriad of powerful emotions affects the chosen path in the rehabilitation and recovery process. As an example of mentalizing, the FEM is a healing tool that instills mutual insight and empathy among the family, psychotherapist, and patient. The application of the FEM to individual and group treatment in a holistic treatment milieu is also described.     

The role of family work in early psychosis

In keeping with the current clinical and research focus on early intervention and the rapid increase worldwide of programs for those experiencing a first episode of psychosis, the development of services for families has to be an integral part of any comprehensive program. Families can and do play a major role in the recovery from a first episode of psychosis. However, without support from and an alliance with professionals, they may find it difficult to see their way through the maze of emotions and challenges that inevitably accompany the first episode. This paper will briefly review the literature describing the impact of a first episode of psychosis on families. Secondly, to support the need for family work, we report on 2-year effectiveness study data that demonstrates that over time families show improvement in their psychological well-being and their experience of caregiving. To design an optimal family program within a first episode service we need to be sensitive to the phase and stage of the illness and have outcomes measured against the goals articulated for first episode family programs. Thus, thirdly we will describe a recovery model that has its origins in the Calgary First Episode Program and has since been expanded for use in the First Episode Psychosis Program in Toronto, Canada.     

Unmet needs of families of adults with mental illness and preferences regarding family services

OBJECTIVE: This study used a survey to assess the information and educational needs of family members of adults with mental illness and their preferences regarding how to address those needs. METHODS: Recruitment was attempted through two sources: local mental health treatment facilities and the Maryland chapter of the National Alliance on Mental Illness (NAMI). Inadequate contact information and low response rate produced only 16 responses from family members of consumers recruited through local mental health facilities. Thus results are reported for a family needs assessment survey mailed to NAMI members (308 of 962 possible responses). Bivariate and multivariate analyses were used to summarize relationships between characteristics of the family member, characteristics of the ill relative, experience of stigma by the family member, and information needs of the family members. RESULTS: On average, family members reported a substantial number of unmet needs (mean+/-SD of 7.09+/-4.71 needs; possible number of needs ranges from 0 to 16), often despite prior receipt of information. Family members' experiences of stigma and having an ill relative with a more recently occurring condition (for example, a younger relative or a shorter length of illness) or with a disabling condition (for example, recent hospitalization) were significantly associated with a greater number of unmet needs. Family members preferred that a mental health provider (63%) address their needs on an as-needed basis (58%). CONCLUSIONS: The needs and preferences of family members of adults with mental illness are diverse and varied. Consequently, these families may benefit from ongoing provision of information and support tailored to meet the families' individual needs. Continued efforts should be made to understand and address consumer and family needs, potential barriers to participation in family services, and the relationship between stigma and family need.     

Releasing information to families of persons with severe mental illness: a survey of NAMI members

OBJECTIVE: Guidelines for the treatment of severe mental illness recommend that providers share information with families and involve them in treatment. However, research indicates that consumer-provider-family collaboration is not part of routine clinical practice. This study examined the process of releasing information to families and the types of information they receive. METHODS: Self-administered surveys were completed by 219 family and consumer members of the National Alliance for the Mentally Ill. The surveys gathered information about their experiences with providers' releasing information. Consumers' attitudes toward collaboration and family members' satisfaction with providers were also measured. Regression analyses examined the relationship between consumers' attitudes toward family involvement and whether providers discussed family involvement or the release of information with consumers. Further analyses examined the relationship between family satisfaction and release of information. RESULTS: The majority of family respondents (72 percent) reported that they received some specific information about their relative's mental illness. Most families received information about diagnosis and medications, but few received information about the treatment plan. Few consumers reported that their permission was requested to release information to their families. Consumers' attitudes toward their family and toward family involvement were significantly associated with whether they were encouraged by their provider to involve a family member in their treatment. No significant relationship was found between consumers' attitudes and whether their provider discussed the release of information. Family members' satisfaction was positively related to whether they received information from providers. CONCLUSIONS: The findings suggest that although some information is shared with families, collaboration is not currently part of routine clinical practice.     

Brain damage is a family affair

Behavioral alterations due to brain damage that compromise the quality of patients' lives also affect the well-being of patients' families. Family distress following head injury has been well-documented. With other cerebral disorders, similar emotional burdens and family disruptions are experienced by the immediate family. Most families suffer many of the core problems arising from the patient's dependency and cognitive inefficiency, and from social reactions to the patient's disability. Moreover, emotional disturbances and executive disorders associated with the site or nature of the lesion(s) affect patients' interaction with their families differentially creating distinctive patterns of family burden. Specific family problems may be relieved through education, counselling, and emotional support.     

Collaborer avec les familles des jeunes adultes avec troubles psychiques débutants : vers un dialogue réflexif ? Illustration de cas

Early intervention programs for young adults with early mental illness value and promote collaboration with families. Partnership is justified in particular by the influence of family tensions on relapse and the importance of redefining ties at this stage of life. However, in practice, implementing interventions with families is still complex and gaps exist between willingness and actual practices. Early intervention programs around the world often favor a psychoeducational approach with families. However, an alternative practice with young adults developed in Finnish psychiatry under the name of “open dialogue” involves a discussion about the process of care during family sessions with the aim of improving it. Inspired by this approach to clinical our case study presents how a reflexive dialogue can be established with families, in the context of observations done within a clinical program for young adults (18 to 25 years) with early mental illness, in order to facilitate collaboration with them. For our case study, reflexive dialogue was implemented through a reflexive interview organized for the family of a 23-year-old single man living in a foster care family and treated after a first psychotic episode. The interview was done in a context of tensions within clinical staff and the family. During this reflexive interview, a member of the clinical staff not directly involved in family sessions collectively interviewed the clinical staff and the families during a semi-structured interview (Example of question for staff: Are there any issues you haven’t talked about yet? Example of question for family: Have you ever felt that you have not been heard by caregivers?). This interview is presented to the families as a way of gathering everyone's impressions of their experiences of family sessions, as freely as possible. This interview is presented as an opportunity to reorient the continuation of therapy by allowing clinicians to better adjust to family expectations. The interview takes place in three stages: (1) The interviewer turns to the caregivers and asks them questions about the family sessions. Family members listen to the answers without intervening (close to the practice of the reflexive team). (2) The interviewer turns to family members and asks them questions. Caregivers listen to their answers without intervening. (3) Family and caregivers are invited to briefly share their impressions of what was said during this interview session. A few weeks after the intervention, quantitative (adaptation of SCORE scale) and qualitative feedback on the usefulness and perception of interview was taken from the clinicians as well as the family. Results suggested that the interview was judged useful by staff and family on several dimensions like positive change in therapeutic relation after reflexive interview. The interview also positively changed the way clinical staff and parents viewed each other within the system of care. Clinical staff saw more resources of parents and parents perceiving a better relationship within clinical staff. Our results seem promising and encourage a more systematic study of reflexive interview effect on collaboration with families.     

Healthy Functioning in Families with a Schizophrenic Parent

This is a study using Family Adaptability and Cohesion Evaluation Scales (FACES IV) that surveyed married couples with children where one person was schizophrenic. A surprising finding was that both the patient and their partner rated their family in the healthy range. Using the Circumplex Model where balanced scores are healthy, most of the patients (78%) and spouses (87%) described their family as balanced. Both groups saw their family as “flexible to very flexible” and “connected to very connected.” In terms of the unbalanced aspects of their family (disengaged, enmeshed, rigid, and chaotic), the vast majority of patients and spouses rated these traits as low or very low. Both the patients and spouses described the family communication as more negative than positive. In terms of family satisfaction, it was low for over half of the patients and partners. In summary, these families with a schizophrenic parents generally were functioning well in spite of this major disorder in one parent.     

Stigma impact on Moroccan families of patients with schizophrenia.

OBJECTIVES: First, to explore whether in Morocco, a non-Western country, family members of patients with schizophrenia suffer from stigma and, if they do, which areas of their lives are most affected; and second, to explore family members' knowledge about the illness and their attitudes toward the patients. METHODS: The study was conducted among 100 family members accompanying patients with schizophrenia. We used a heteroquestionnaire that inquired about family members' and patients' sociodemographic data, family members' knowledge of the patients' illness, their attitudes and behaviours toward the patient, and their perception of stigma. RESULTS: Family members' mean age was 47.44 years, SD 12.83; 69% were women; 38% had no education; and 77% had no professional activity. Most families (76%) reported having no knowledge about the illness. However, the illness was considered to be incurable (39%), severe (37%), chronic (80%), and handicapping (48%) and was believed to be caused by drug use (25%), stressing life events (such as conflict or bereavement; 46%), sorcery (25%), organic disturbance (30%), or heredity (23%). We found that most of the families suffer from stigma and discrimination. A total of 86.7% reported they have hard lives because of the illness, and 72% reported psychological suffering caused by sleep and relationship disturbances and a poor quality of life. CONCLUSIONS: In this study, we found that Moroccan families of patients with schizophrenia suffer from stigma. We found the same results in European, In North American, and in some Arab and Islam countries. Despite the belief that traditional societies are more supportive of the weak and the sick, stigma is a major burden in addition to that of the illness.     

Family focused grief therapy: a randomized, controlled trial in palliative care and bereavement

OBJECTIVE: The aim of family focused grief therapy is to reduce the morbid effects of grief among families at risk of poor psychosocial outcome. It commences during palliative care of terminally ill patients and continues into bereavement. The authors report a randomized, controlled trial. METHOD: Using the Family Relationships Index, the authors screened 257 families of patients dying from cancer: 183 (71%) were at risk, and 81 of those (44%) participated in the trial. They were randomly assigned (in a 2:1 ratio) to family focused grief therapy (53 families, 233 individuals) or a control condition (28 families, 130 individuals). Assessments occurred at baseline and 6 and 13 months after the patient's death. The primary outcome measures were the Brief Symptom Inventory, Beck Depression Inventory, and Social Adjustment Scale. The Family Assessment Device was a secondary outcome measure. Analyses allowed for correlated family data and employed generalized estimating equations based on intention to treat and controlling for site. RESULTS: The overall impact of family focused grief therapy was modest, with a reduction in distress at 13 months. Significant improvements in distress and depression occurred among individuals with high baseline scores on the Brief Symptom Inventory and Beck Depression Inventory. Global family functioning did not change. Sullen families and those with intermediate functioning tended to improve overall, whereas depression was unchanged in hostile families. CONCLUSIONS: Family focused grief therapy has the potential to prevent pathological grief. Benefit is clear for intermediate and sullen families. Care is needed to avoid increasing conflict in hostile families.     

Family functioning in families of first-episode psychosis patients as compared to chronic mentally ill patients and healthy controls

The present study aimed to investigate possible differences in family environment among patients experiencing their First Episode of Psychosis (FEP), chronic patients and controls. Family cohesion and flexibility (FACES-IV) and psychological distress (GHQ-28) were evaluated in families of 50 FEP and 50 chronic patients, as well as 50 controls, whereas expressed emotion (FQ) and family burden (FBS) were assessed in families of FEP and chronic patients. Multivariable linear regression analysis, adjusted for confounders, indicated impaired cohesion and flexibility for families of FEP patients compared to controls, and lower scores for families of chronic patients compared to those of FEP patients. Caregivers of chronic patients scored significantly higher in criticism, and reported higher burden and psychological distress than those of FEP patients. Our findings suggest that unbalanced levels of cohesion and flexibility, high criticism and burden appeared to be the outcome of psychosis and not risk factors triggering the onset of the illness. Furthermore, emotional over-involvement both in terms of positive (i.e. concern) and negative behaviors (i.e. overprotection) is prevalent in Greek families. Psychoeducational interventions from the early stages of the illness should be considered to promote caregivers? awareness regarding the patients? illness, which in turn, may ameliorate dysfunctional family interactions.     

Comparable family burden in families of clinical high‐risk and recent‐onset psychosis patients

Aim: Family burden is prevalent in psychotic disorders, but little is known about burden experienced by families of patients in early illness. In this exploratory study, we examined the extent of burden reported by families of patients during a putative prodromal period and in the aftermath of psychosis onset. Methods: Family burden was assessed in 23 family members of patients with emerging or early psychosis. The Family Experiences Interview Schedule was used to assess both objective and subjective burden. Objective burden is comprised of increased resource demands and disruption of routine. Subjective burden includes worry, anger/displeasure and resentment at objective burden. Results: Family burden was comparable for the clinical high‐risk and recent‐onset psychosis patients. Worry was as high as previously reported for more chronic patients. By contrast, there was a relative absence of displeasure/anger. Family members endorsed assisting patients in activities of daily living, although not ‘minding’ doing so, and reported little need to supervise or control patients' behaviour. Conclusions: Early in emerging psychotic illness, families report helping patients and worrying about them, but their lives are not yet disrupted and they do not have much anger or resentment. This may be an ideal time then for intervention with families, as worry may motivate help‐seeking by families.     

Families of the seriously mentally ill and their satisfaction with services

Family members of seriously mentally ill persons were interviewed to determine their satisfaction with services received through a countywide service system based on the community support program (CSP) model developed by the National Institute of Mental Health. Interviews with 56 family members indicated that a majority were dissatisfied with various aspects of the service system. Multiple regression analysis revealed that significant contributors to family satisfaction were sex of respondent, type of relationship to family member, age at onset of illness, and time since onset of illness. Interaction with a case manager, specifically interaction involving emotional support for families, was the strongest factor explaining family satisfaction. That finding confirms the central role of the case manager in the delivery of CSP services.