Table 1 Benefits of Being a Caregiver Scale – scale development
Steps | Goal | Methods/Participants | Results |
|---|---|---|---|
1 | Identify existing quantitative questionnaires evaluating PAC | Literature search (based on chapters of the Cochrane Handbook for Systematic Reviews of Interventions): Years of publication: 1990 and 2019 Languages: English and German - 2 master students guided by postdoc researcher | five questionnaires: Fabà, Villar, Giuliani, 2017; Yap Luo, et al., 2010; Tarlow Wisniewski, et al., 2004; Fulton Picot, Youngblut, Zeller, 1997; Strawbridge, 1991 eight subscales: Zank, Schack, Leipold, 2006; Farran, Miller, et al., 1999; Orbell, Hopkins, Gillies, 1993; Given, Given, et al., 1992; Schofield, Murphy, et al., 1997; Kinney, Stephens, 1989; Lawton, Kleban, et al., 1989; Motenko, 1989 |
2 | Create a list of all items from the literature and combine the same or similar content | Analyze items for redundancies and similarities (according to Mayring, 2019) 2 master students guided by postdoc researcher and supervised by senior research advisor | - 143 items covering 12 different categories (e.g. personal development, meaning of life, …) - similar items from each category were named together (127 different aspects) |
3 | Compare the recorded items with qualitative statements (cited in the systematic review of Lloyd, 2016) | Analyze items for redundancies and similarities (according to Mayring, 2019) - 2 master students guided by postdoc researcher and supervised by senior research advisor | 2 extra items covering new aspects (total 127 + 2 = 129 items) |
4 | Define the construct “benefits” - based on the results of the literature review and the current results on the topic of PAC | Focus group (according to Krueger, 2015) - 6 researchers and care advisors (a representative of the German Alzheimer´s society, health psychologist, nursing scientist, physician, health services researcher, psychologist) | all items on the new scale need to show (a) that family caregivers experience benefits for themselves and (b) the benefits they experience are due to their caregiving activities (“Caring for …”) |
5 | Identify the items (out of the 129 total items) that: - correspond to the definition of “benefits" - are important in the caregiving setting - can be influenced by interventions | Written survey (adapted from Flesch, 1948) and focus group to discuss the results of the survey - a majority decision had to be made (according to Krueger, 2015) - 6 researchers and care advisors (see above) | 20 items |
6 | Analyze the 20 items for comprehensibility, redundancy, and similarities plus find the appropriate formulation format and scaling | Written survey (adapted from Flesch, 1948) - 6 researchers and care advisors (see above) | 18 items every item includes: “Caring for my …” 5-point Likert scale ranging from 4 (strongly agree) to 0 (strongly disagree) |
7 | Analyze the 18 items for content, comprehensibility, and importance | Written survey (adapted from Flesch, 1948) - 5 informal caregivers | 15 items (FINAL VERSION OF THE BBCS for the validation study) |