The Experience of Providing Care to Relatives With Chronic Mental Illness

Veltman, Albina; Cameron, Jill I.; Stewart, Donna E.

doi:10.1097/00005053-200202000-00008

Cited by 126 publications

(114 citation statements)

References 20 publications

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“…28 For McFarlane, given the specificities of severe mental illness and the burden of family caregiving, teamwork between family members and mental health professionals should be an option, but rather a requirement. We may therefore state that taking care of the well-being of patients with a severe mental disorder also includes taking care of their relatives.…”

Section: Introductionmentioning

confidence: 99%

Stigmatizing attitudes in relatives of people with schizophrenia: a study using the Attribution Questionnaire AQ-27

Sousa¹,

Marques²,

Rosário³

et al. 2012

Trends Psychiatry Psychother.

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Background: Family members of people with mental disorders can contribute to stigmatization. Because of the lack of adequate information and resources, and the fatigue resulting from daily care, the family can reinforce social exclusion of the mentally ill and disbelieve recovery. Furthermore, family members may also suffer from self-stigma, experiencing a decrease in their own self-esteem and self-worth. Objective: To evaluate the presence of stigmatizing attitudes towards patients diagnosed with schizophrenia in a group of relatives of patients with this disorder. Methods: In this exploratory study, we surveyed 40 family members of patients with schizophrenia seen at the Community Psychiatry Unit of the Psychiatry Department at Centro Hospitalar de São João (CHSJ), in Porto, Portugal, using a preliminary version of the Attribution Questionnaire AQ-27 in Portuguese. Results: The questionnaire dimensions with the highest mean scores were help, pity, and coercion, followed by segregation, anger, avoidance, dangerousness, responsibility, and fear. These results suggest that relatives do not see people with schizophrenia as responsible for their illness and that they show concern and willingness to help. They avoid but do not fear people with schizophrenia and neither consider them dangerous. Conclusion:The participants expressed positive, little stigmatizing attitudes towards people with schizophrenia, probably as a result of their familiarity with severe mental disorder, an adequate attribution process, and low levels of perceived dangerousness. However, the high scores of coercion, pity, and segregation may reflect concealed stigmas that may influence the self-determination of the mentally ill, suggesting the need for psychoeducational interventions aimed at family members.

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Section: Introductionmentioning

confidence: 99%

Stigmatizing attitudes in relatives of people with schizophrenia: a study using the Attribution Questionnaire AQ-27

Sousa¹,

Marques²,

Rosário³

et al. 2012

Trends Psychiatry Psychother.

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“…7 Recent evidence demonstrates that caregiving can also be associated with feelings of satisfaction, personal growth, and improved relations between caregiver and patient. [8][9][10] Caregiving Appraisals…”

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confidence: 99%

Caregiving and Illness Beliefs in the Course of Psychotic Illness

et al. 2008

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Objective: Informal caregivers play a central role in patient care, and caregiving can provide positive and negative experiences. Negative caregiving experiences are associated with distress. This study investigates associations between caregiving appraisals in psychosis, distress, and 3 key illness beliefs (consequences, cure-control, and timeline), and whether illness beliefs makes a contribution to the relation between negative caregiving appraisal and distress. Method:We employed a cross-sectional study design. Caregivers (n = 146), including Early Psychosis Services caregivers (n = 60), completed self-report measures of the impact of care and illness beliefs. Results:Negative caregiving appraisals and distress were strongly associated. Caregivers appraised caregiving negatively and reported greater distress when they perceived the illness as having severe consequences for themselves and the patient, and when they perceived it as a long-term illness. In contrast, they appraised caregiving positively when they perceived that both they and the patient could exert some control over the illness. Illness beliefs did not account for the strong relation between negative caregiving appraisals and distress. Caregivers of patients with longer illness histories reported higher levels of positive caregiving appraisals. Conclusion:Caregivers' cognitive representation of psychosis may play an important role in positive and negative appraisals about caregiving, even at an early stage of the illness. Implications for interventions with early psychosis caregivers are discussed. Can J Psychiatry 2008;53(7):460-468Clinical Implications · Caregivers' beliefs about psychosis may play an important role in their appraisals of positive and negative caregiving experiences. · Routine interventions with caregivers should aim to identify their key illness beliefs. · A clinical focus on modifying less adaptive illness beliefs may be helpful in reducing levels of negative appraisals of caregiving and distress, particularly in early psychosis. Limitations· A demographically broader sample of caregivers was not recruited. · Only cross-sectional relations between appraisals of caregiving experiences, illness beliefs, and distress were examined; the data do not denote causality.

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“…The communication problem between Anna and the formal caregivers was an important barrier that came to characterize her future relationship with psychiatric care providers. Among others, Veltman [30], Doornbos [31], and Kaas et al [32] state that defective information and support, together with formal caregivers' nonchalant attitudes, indifference, and inaccessibility to family members, are frequent and important reasons that inhibit family members' ability to become participants in their ill relative's care.…”

Section: Discussionmentioning

confidence: 99%

“I screamed for help”: A single case study of one sister’s experiences with formal psychiatric care when her brother became mentally ill

Sjöblom¹,

Lilja²

2013

Health

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Studies have shown that the quality of the relationship between siblings has great significance for the mentally ill sibling's overall quality of life. Sibling relationships may be particularly important because few adults with severe mental illness have children. As parents grow older, adult children are expected to support their sibling with mental illness when their parents are no longer able to do so. The sibling relationship has the potential to be one of the most significant relationships for adults with schizophrenia. The aim of this paper is to present a case study of a sister's experiences and needs in her contact with psychiatric care. This single case study was designed and the informant was recruited because of her value in maximizing what we can learn about being a sibling to a person with mental illness. Data were collected through four in-depth, semi-structured, repeated interviews during a two-year period, and were interpreted and analyzed through content analysis. Three major topics were discussed: 1) Anna's brother's time with formal psychiatric care; 2) Anna's feelings and emotions; and 3) Anna's view of her contact with psychiatric care. The findings indicated a sibling's need for attention, support, and understanding from the formal caregivers. Participation in our study was one of the first opportunities she had to talk about her relationship with formal psychiatric care. An open dialogue may help siblings to manage their situations.

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The Experience of Providing Care to Relatives With Chronic Mental Illness

Cited by 126 publications

References 20 publications

Stigmatizing attitudes in relatives of people with schizophrenia: a study using the Attribution Questionnaire AQ-27

Stigmatizing attitudes in relatives of people with schizophrenia: a study using the Attribution Questionnaire AQ-27

Caregiving and Illness Beliefs in the Course of Psychotic Illness

“I screamed for help”: A single case study of one sister’s experiences with formal psychiatric care when her brother became mentally ill

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