PubMed · 15683051
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Lynne Wallis. New directions.. https://pubmed.ncbi.nlm.nih.gov/15683051/
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BACKGROUND: Providing home care for a child with a chronic illness can be stressful for the family. The purpose of this paper is to examine patterns of caregiving and the associated psychological impact on maternal caregivers of children with sickle cell disease (SCD). PROCEDURE: Fourteen maternal caregivers of children with SCD were interviewed as part of a larger study of maternal caregivers of children with chronic illness. Forty-four caregivers of children with HIV and 36 caregivers of healthy children were included as comparison groups. Interviews included questions regarding amount of time spent providing care for the child (technical care, non-technical care, health care management), hospitalization, emergency room visits, illness stigma, and mental health of the caregiver. RESULTS: Children with SCD had significantly lower functional status and significantly more hospitalizations in the previous 3 months than children with HIV. Caregivers of children with SCD were more likely to work full-time and had higher incomes than caregivers of children with HIV. The three caregiving groups did not differ significantly on amount of total care, although caregivers of children with SCD and caregivers of children with HIV both reported significantly more time spent in technical care than caregivers of healthy children. Despite lower functional status of the children in the SCD group, when group comparisons on caregiving time variables were adjusted for child's functional status, the differences between groups increased. This appeared to be due to the fact that caregivers in the HIV group spent more time in all caregiving categories except skin, crisis, and other care. In terms of caregiver mental health, caregivers of children with HIV and SCD had significantly higher depressive mood scores than caregivers of healthy children but the groups did not differ on caregiving burden. CONCLUSIONS: The perceived care burden of caregivers of children with SCD may be related to the unpredictable nature of the crisis care they provide. Additional attention is warranted to developing adequate resources for caregivers of children with SCD to mitigate the stress of unexpected crises.
Through December 2003, more than 55,300 persons were living in small towns and rural areas of the United States at the time of their AIDS diagnosis. Many HIV-infected rural persons experience elevated levels of depression, suicidal ideation, and anxiety. This research tested if two telephone-delivered, mental health interventions could facilitate the adjustment efforts of persons living with HIV/AIDS in rural areas of the United States. Participants (N=299) were recruited through AIDS service organizations in 13 states and assigned to a Usual Care Condition (n=107), an 8-session Information Support Group Intervention (n=84), or an 8-session Coping Improvement Group Intervention (n=108). Participants completed self-administered surveys at pre-intervention, post-intervention, and 4- and 8-month follow-ups. ANCOVA revealed that no treatment condition produced reductions in the main outcome measures of depressive and psychological symptoms; however, Information Support participants received significantly more support from friends at 4- and 8-month follow-ups and reported fewer barriers to health care and social services at 4-month follow-up compared to participants in the other two conditions. Telephone-delivered, information-support groups have potential to increase perceptions of support and reduce barriers to health care and social services in this population, but the practical significance of these intervention-related changes is limited.
PURPOSE/OBJECTIVES: To test the effects of different perspective-taking instructional sets, gender, caregivers' personal histories with cancer, and caregiving relationship factors on family caregiver and patient perceptual agreement of symptom experiences of patients with lung cancer. DESIGN: Counterbalanced. SETTING: Thoracic oncology outpatient clinical setting in Canada. SAMPLE: 98 dyads consisting of patients with lung cancer and their family caregivers. METHODS: Data were collected on a one-time basis by employing an abbreviated version of the Memorial Symptom Assessment Scale targeting lack of energy and worrying. Caregivers were randomized to one of six counterbalanced conditions of perspective-taking instructions. MAIN RESEARCH VARIABLES: Caregiver discrepancy scores, instructional sets (i.e., neutral, self-report, and imagine-self and imagine-patient perspective-taking), order effects, gender, caregivers' personal history with cancer, and caregiving relationship factors. FINDINGS: No order effects were found for the instructional sets. Instructions to imagine the patient's perspective over imagining how the caregiver would feel if he or she had cancer were most effective in enhancing the caregiver's ability to estimate the patient's lack of energy and worrying. Gender had no significant effects. The amount of patient-caregiver communication had a positive impact on the accuracy of caregivers' perspectives. CONCLUSIONS: The patient-oriented instructions had a limited impact on enhancing patient-caregiver congruence on patient symptoms. This likely is related to the study's convenience sample of caregivers who appear to naturally engage in empathic processes of patient-oriented perspective-taking when they assessed and reported on patient symptom conditions. IMPLICATIONS FOR NURSING: Further exploratory work should identify interpersonal conditions that negatively hamper the effects of caregiver perspective-taking on their reasonable understanding of patient symptoms.