Systematic review of factors associated with hope in family carers of persons living with chronic illness.

AIMS: To identify factors associated with hope in family carers of persons living with chronic illness. DESIGN: A systematic review of quantitative and mixed method studies on hope in carers of persons living with chronic illness. DATA SOURCES: Five electronic databases (Medline, Cumulative Index to Nursing and Allied Health Literature, Web of Science, ProQuest Dissertations and PsycINFO) were searched from inception to 13 July 2020. REVIEW METHODS: Inclusion criteria were the following: (a) study population of adult (18 years of age and older) carers of persons living with chronic illness, (b) hope was measured as a variable, (c) reported factors associated with hope, (d) employed either quantitative or mixed methods design, (e) written in English and (f) was published in peer reviewed journals. All included studies were evaluated for quality using the Mixed Method Appraisal Tool. RESULTS: Twenty-six studies were included in the systematic review. Quality of life, physical and mental health, life satisfaction and the hope of care recipients were found to be positively associated with hope. Carer's coping increased (self-efficacy and caregiver preparedness) as hope increased with a decrease in maladaptive coping strategies. Anxiety, depression, distress, grief and guilt were negatively associated with carers' hope. Carers' hope did not appear to be associated with carer or care-recipient demographic variables. CONCLUSION: Carers' hope appears to be associated with the carers' over all positive health. The factors associated with carers' hope provide potential areas to focus intervention development such as strategies that increase self-efficacy. More research is needed to clarify if factors such as stage of disease and resilience are associated with hope. Research on carers' hope assessment and intervention development should also focus on factors associated with hope. IMPACT: The findings underscore the need to assess and work with carers of persons living with chronic illness to enhance their hope.

Qualitative Research and Its Importance in Adapting Interventions.

Systematic approaches are essential when adapting interventions, so the adapted intervention is feasible, acceptable, and holds promise for positive outcomes in the new target population and/or setting. Qualitative research is critical to this process. The purpose of this article is to provide an example of how qualitative research was used to guide the adaptation a web-based intervention for family carers of persons with dementia residing in long-term care (LTC) and to discuss challenges associated with using qualitative methodologies in this regard. Four steps are outlined: (a) choosing an intervention to adapt, (b) validating the conceptual framework of the intervention, (c) revising the intervention, and (d) conducting a feasibility study. Challenges with respect to decontextualization and subjective reality are discussed, with suggestions provided on how to overcome them. The result of this process was a feasible and acceptable web-based intervention to support family carers of persons with dementia residing in LTC.

Acceptability of a Personal Contact Intervention among People Living with Dementia: Might Baseline Contact Matter?

Our study aimed to explore how perceived baseline contact may influence acceptability of Connecting Today, a personal contact intervention, among people living with dementia. We aimed to generate hypotheses for testing in future studies. This was a sub-group analysis of pilot study data. Fifteen people living with mild to moderate dementia participated in Connecting Today. We explored how perceptions of intervention acceptability may differ in groups reporting weekly contact (n = 8) compared with groups reporting monthly/unknown (n = 7) contact at baseline. Measures of acceptability included a treatment perceptions and preferences questionnaire, and the number of and reasons for non-consent, missing data, and study withdrawal. We used descriptive statistics and content analysis. In visits one and two, a larger proportion (85.7-100%) of low baseline contact participants reported feeling better, and indicated that the visits helped them and were easy "mostly" or "a lot", compared with the high baseline contact group (37.5-62.5%). Most missing data (71%) and all study withdrawals occurred in the high baseline contact group. Scheduled in-person visits with family, friends, or a volunteer may appeal to residents in care homes who have few existing opportunities for routine, one-on-one visits with others. Hypotheses generated should be tested in future studies.

Connecting Today: Feasibility and acceptability of a remote visiting program for people living with dementia in long-term care homes.

OBJECTIVES: Social isolation and loneliness affect the quality of life of people living with dementia, yet few interventions have been developed for this population. The purpose of this study was to assess the feasibility and acceptability of 'Connecting Today', a remote visiting program designed for use with care home residents living with dementia. METHODS: This was a feasibility study to assess whether Connecting Today can be delivered in care homes, and was acceptable to family and friends and people living with dementia. We used a single-group before/after design and included residents ≥ 65 years old with a dementia diagnosis from two care homes in Alberta, Canada. Connecting Today involved up to 60 min per week of facilitated remote visits for 6 weeks. To understand feasibility, we assessed rates and reasons for non-enrollment, withdrawal and missing data. We assessed acceptability with the Observed Emotion Rating Scale (residents) and a Treatment Perception and Preferences Questionnaire (family and friends). Data were analyzed with descriptive statistics. RESULTS: Of 122 eligible residents, 19.7% (n = 24) enrolled (mean age = 87.9 years, 70.8% females). Three residents withdrew from the study before the first week of calls. Among 21 remaining residents, 62%-90% completed at least 1 call each week. All the calls were completed by videoconference, rather than by phone. Alertness and pleasure were observed for ≥92% of residents during calls. The 24 contacts rated Connecting Today as logical, effective and low risk. CONCLUSIONS: Facilitated, remote visits are feasible and highly acceptable to residents and their family and friend contacts. Connecting Today shows promise to address social isolation and loneliness for people living with moderate to severe dementia because it can promote positive engagement in meaningful interactions with their family and friends while they are living in a care home. Future studies will test effectiveness of Connecting Today in a large sample.