Coping, Social Support, and Caregiver Well-Being With Families Living With SCI: A Mixed Methods Study.

OBJECTIVES: To explore coping, problem solving, social support, and well-being among family caregivers of adults with spinal cord injury (SCI). METHODS: This was a mixed methods study (qualitative interviews and standardized surveys) with a diverse sample of 39 adults with SCI and their caregivers from four rehabilitation hospitals in the United States, including one Veterans Affairs (VA) hospital. Cluster analysis was used to explore whether distinct profiles of caregivers could be identified, and it was used in conjunction with qualitative data to explore patterns in well-being. Measures of well-being included leisure time satisfaction, social integration, anxiety, depression, physical health complaints, caregiver burden, and quality of life. RESULTS: The importance of individual and extra-individual resources, namely coping and social support, emerged from early qualitative analyses and guided subsequent mixed methods examination of the data. A cluster analysis yielded three caregiver profiles: (1) effective problem solvers with moderate satisfaction with social support, (2) mixed problem solvers with stronger negative orientations and mixed satisfaction with social support, and (3) low endorsers overall. Profiles helped us explore patterns across our data set and efficiently identify differences in caregiver social support, coping, well-being, and unmet needs. CONCLUSION: Data echo the need for multimodal interventions aimed at skill development, respite options, and screening, support, information, and referral around mental health and burden. SCI care and rehabilitation programs should consider incorporating strategies for bolstering effective caregiver problem-solving skills, reducing negativity and ambivalence, and enhancing social support.

It is a marathon rather than a sprint: an initial exploration of unmet needs and support preferences of caregivers of children with SCI.

STUDY DESIGN: Focus group study. OBJECTIVES: Explore unmet needs and support preferences of caregivers of youth with spinal cord injury (SCI). SETTING: One pediatric specialty rehabilitation hospital system in the United States. METHODS: Four focus groups were conducted with a convenience sample of 26 caregivers who were primarily mothers (96%) and married (65%), and had at least some college education (85%). Children living with SCI were on average 12.8 years old (SD = 3.3, 8-18). The average age of injury was 4.7 years (SD = 4.4, 0-16.2); mean injury duration was 8.2 years (SD = 3.9, 2-16); 77% had paraplegia; and 58% were male. Focus groups were digitally recorded, transcribed verbatim, and coded using thematic analysis and NVivo. RESULTS: Qualitative data highlighted caregiver perspectives on unmet needs relating to two phases of care: acute and rehabilitation vs. current life with SCI, and two kinds of stressors: those associated with SCI and care vs. those related to other areas of the caregivers' lives, especially their families. Caregivers described stressful interactions with care systems and community services, articulated several concerns regarding well-being of family members, and noted that both they and their children with SCI experienced isolation. Caregivers articulated preferences for additional support from professionals and peers. CONCLUSIONS: Data suggest the need for ongoing caregiver interventions and strengthened family-centered care systems, including professional assistance navigating health systems and peer support. Intervention development would benefit from further qualitative data collection with additional caregivers of youth with SCI, including multiple family members, and families from more diverse care settings.

The spirit of ecological inquiry and intervention research reports: a heuristic elaboration.

One distinctive approach to community psychology intervention research involves finding ways to contribute to the development of communities. Ecological inquiry is a primary theoretical framework for this work. The purpose of this paper is to explore how the spirit of ecological inquiry may be expressed in the descriptions of how we design, conduct, and evaluate community interventions. We first elaborate a set of criteria as a heuristic framework for carrying out and documenting community intervention writing, theory, and action. We then pilot the application of these criteria to explore the presence of an ecological emphasis within intervention studies published in the AJCP between 1994 and 2002. This exercise helped illuminate the extent to which an ecological perspective is reflected in intervention accounts, and select intervention accounts that reflect a substantial ecological emphasis are described. Further, this review highlights the areas of our written work which contain fewer makers of ecological inquiry, as with the relevant exclusion of citizens in formative intervention roles. We conclude with a series of reflections about constraints on published intervention accounts and recommendations for those interested in furthering the spirit of ecological inquiry through their research and action commitments to community development.