Perceptions of Subjective Burden Among Latino Families Caring for a Loved One With Schizophrenia

Purpose: Caring for a loved one diagnosed with schizophrenia is often an overwhelming experience that is associated with different levels of caregiving burden for family members.  Although Latinos with schizophrenia are more likely to live with their family when compared to other ethnic groups, few studies have examined subjective burden among Latino family members. The objective of this study was to explore perceptions of subjective burden among Latino family members who participated in a randomized controlled trial of a culturally based family intervention. A longitudinal qualitative examination of subjective burden allowed for a more nuanced understanding of this type of caregiving burden among families in both conditions.

Methods:  Data come from an NIMH funded trial of a culturally based family intervention focused on Latino families of clients with schizophrenia.  The study consisted of 64 Latinos diagnosed with schizophrenia receiving services in community-based mental health centers in the Los Angeles area and one key family member.  Family members were low acculturated and primarily monolingual Spanish speaking.  Qualitative methods were utilized to examine subjective burden based on an open-ended section of the Family Burden Interview Schedule measure assessed at baseline, post-study, and follow-up.  This section asks family members to describe “other ways the family has suffered as a result of the client’s illness”.  A grounded theory approach was applied to the qualitative analysis of data on perceptions of burden.  At first open coding was used with baseline data and subsequently post-study and follow-up data were coded on treatment condition.  Following open coding, axial coding was conducted to develop categories derived from codes.  A constant comparative process yielded themes and subthemes based on patterns observed in the data.  Analysis was conducted by two bilingual/ bicultural team members who initially independently coded the data and then came together to discuss and reach consensus on codes and themes.   

Results:  Five salient themes emerged from the families in both conditions (intervention and usual care) in the following order: (1) family interpersonal relations; (2) emotional/physical health; (3) grief due to loss of role expectations; (4) religion/spirituality; and (5) stigma.  While post- and follow-up analyses demonstrated little change from baseline findings for families in the usual care condition, families in the intervention noted that participation in the intervention led to improved family well-being thus addressing key burden concerns.  This was evidenced in interpersonal relations with client, emotional health, communication, understanding of the illness, and stigma.  

Implications:  Findings illustrated that families caring for a loved one with schizophrenia perceived numerous challenges in their caregiving experience, which primarily centered on family interpersonal relations.  However, families in the intervention reported benefits as a result of the intervention that substantially alleviated subjective burden concerns.  Overall, findings suggest that low acculturated Latino families caring for a loved one with schizophrenia may gain meaningful benefits from participation in a culturally-based intervention thereby supporting its use in community mental health settings with Latinos.