|Sample||How We Wrote The Stories|
The purpose of the ethnographic/qualitative study was to provide detailed information and stories about the experiences of participants receiving the “cash option” in New Jersey’s Personal Preference program. The study focused on how “care units,” composed of consumers and/or representatives, paid workers, and consultants interacted around issues of consumer directed care. The study addresses several broad research questions: (1) has Personal Preference made a difference in the lives of consumers, representatives, and workers, and if so, how; (2) how does participation in the Personal Preference program compare with previous arrangements; (3) in what manner are services provided, and (4) how does the program work?
Following the approach taken by Keigher and Luz , the focus was on both consumers (Personal Preference participants and their families) and their paid workers (both family and non-family member workers). Additionally, interviews were conducted with consultants assigned to provide oversight for those consumers included as part of the care unit interviews.
Qualitative data collection (involving interviews, visits to consumer’s homes, and travel throughout the state) took place in New Jersey in July and August of 2001. Face-to-face, semi-structured interviews lasting up to an hour each were conducted with the members of 25 care units. The tape-recorded interviews were conducted by two trained interviewers and took place in the consumers’ homes. Each consumer interviewed had participated in the New Jersey Personal Preference Program for at least six months. Consumers of different ages, races, sexes, monthly cash benefit amounts, and type of care workers were interviewed.
Three semi-structured interview protocols (consumer/representative, paid caregiver, and consultant) were developed through an iterative process of consultation with the Cash and Counseling Program management team (included representatives from the program management office, Mathematica Policy Research, Personal Preference Program in New Jersey, ASPE-HHS, RWJ). Interviews included open-ended questions organized under three headings: background, services, and operation of the program.
Selection criteria for the care units (triads including consumer/representative, paid worker, and consultant) were developed in close consultation with the Management team and the New Jersey program office. The main selection criteria were identified as: age 18-64/65+, ethnicity—African American/Asian/Hispanic/White (including Russian and Ukrainian), type of worker (family/non-family), and representative/no representative. Other variables taken into consideration to ensure maximum variability were County of residence, variations in use of the cash benefit, disability level (determined by level of Medicaid benefit, but above $200 per month), gender, and language, age extremes. The names of eligible consumers (i.e., had participated in the program for at least six months and fitting the selection criteria) to contact were derived from lists provided by Mathematica Policy Research and New Jersey program office. Research staff then telephoned potential subjects to enlist their participation and schedule home visits to conduct interviews.
A total of 57 interviews were conducted (25 care units composed of 25 consumers/representatives, 26 paid workers, and 6 consultants). Two interviewers, one female Caucasian and one female Hispanic made two visits to New Jersey in August of 2001. All interviews with consumers and paid workers were face-to-face and conducted in the home of the consumer. In most cases consumers and paid workers were interviewed separately but during the same visit. Interviews averaged about one hour and were tape-recorded.
Six consultants were interviewed by phone at a later date. Consultants were interviewed separately and asked about their activities as consultants in the Personal Preference program generally, and specifically, about the consumers in the study for whom they were responsible. Consultants were busy and difficult to contact.
Individual tape recordings were transcribed verbatim as Word documents and then uploaded into software designed for qualitative data management and analysis (Atlas.ti). The software was used to manage the large quantity of textual data, facilitate coding, and discover crosscutting topic/themes. Stories were written from the interview transcripts.
We wrote each of the twenty-five stories based on related interviews with a consumer, personal care worker, and consultant. In writing the stories, we tried to incorporate all three perspectives on a topic or story whenever possible. Each story relies heavily on direct quotations from those interviewed. We used interviewers’ field notes and comments to add detail to the stories.
Occasionally, the facts or chronologies were not clear or were in conflict with the information in other interviews within a unit. In some cases the discrepancies came about because of a time lag between interviews, differences of viewpoint about the topic, or a lack of knowledge on the part of a member of the unit. In cases where facts were unclear or contradictory, we checked the interviewer’s notes and reconciled evidence within the transcripts themselves. Occasionally, a consumer or caregiver might give us information that may not be factually true, but that they believe to be true. We accepted the interviewers interpretation of events and only note discrepancies if it helps the reader understand the story or the program.
Two authors wrote the original story drafts. All members of the research team discussed story content and interpretations as a group and read the drafts and the interview transcripts to check for completeness and accuracy.
We added topic headings to facilitate reading and comparison between stories. Names are all pseudonyms. Places, companies, and agency names have been eliminated or fictitious names used in their stead.
Within quotations, three periods represent a short break within an answer such as an interviewer breaking in to ask a question. Four periods are used to indicate a considerable break in the conversation. For example, sometimes a consumer returned to a topic or expanded on an answer much later in an interview. Brackets within a quote include our clarification of a reference to a person or event. The terms caregiver, care worker, and care provider were used interchangeably as were consumer and participant.
Quotations were rendered as close to verbatim as possible in order to preserve the rhythm and regional flavor of the interviewees’ speech patterns. Above all, the participants speak for themselves about what life is like for them in the Personal Preference program.