Department of Psychiatry and Behavioral Sciences, Memorial Sloan-Kettering Cancer Center, New York, USA
AIDS Institute, New York State Department of Health, Albany, USA
Department of Pediatrics, Albert Einstein College of Medicine, Bronx, USA
Abstract
Background
Patient perceptions of and satisfaction with care have become important indicators of the quality of services and the relationship of services to treatment outcomes. However, assessment of these indicators continues to be plagued by measurement problems, particularly the lack of variance in satisfaction data. In this article, we present a new approach to better capture patient perceptions of experiences in care, the Dynamics of Care (DoC) assessment. It is an in-depth approach to defining and assessing patients' perspectives at different junctures in care, including their decisions about whether and where to seek care, the barriers encountered, and the treatments and services received.
Methods
The purpose of this article is to describe, validate, and discuss the benefits and limitations of the DoC, which was administered as part of a longitudinal study to evaluate the New York State HIV Special Needs Plan (SNP), a Medicaid managed care model for people living with HIV/AIDS. Data are from 426 study respondents across two time points.
Results
The results demonstrate the validity and value of the DoC. Help seeking decisions and satisfaction with care appear to be situation-specific, rather than person-specific. However, barriers to care appear to be more cross-situational for respondents, and may be associated with clients' living situations or care arrangements. Inventories in this assessment that were designed to identify potential deterrents to help seeking and difficulties encountered in care demonstrated clear principal component structures, and helped to explain satisfaction with care. The problem resolution index was found to be independent from satisfaction with care and the data were more normally distributed. DoC data were also associated with subsequent utilization and change in quality of life.
Conclusion
The DoC was designed to be a flexible, integrated measure to determine individuals' salient service needs, help seeking and experiences in care. One of the many strengths of the assessment is its focus on specific problems in context, thus providing a more sensitive and informative way to understand processes in care from the patient's perspective. This approach can be used to direct new programs and resources to the patients and situations that require them.
Background
There is mounting evidence that variations in perceived quality of health care among people with HIV/AIDS affect patient behavior, especially adherence to medication regimens and other physician recommendations, as well as health outcomes
Funding agencies have also placed an emphasis on clients' perceptions of care. The Health Resources and Services Administration (HRSA), in providing guidance to its Ryan White CARE Act grantees, has recommended that service planners and providers pay close attention to client satisfaction as they develop and implement their service delivery systems
Despite widespread consensus that perceived quality of care, and patient satisfaction in particular, is important to measure, and despite much investment in instrument development, the assessment of patient satisfaction has been and continues to be plagued by critical measurement issues
Several studies suggest that health status per se, rather than degree of improvement in health status due to medical care, also influences satisfaction ratings; there is some evidence that healthier patients tend to report greater satisfaction with health care
Given the pitfalls of satisfaction measurement and its debatable value for quality improvement, there has been a call for new approaches to the assessment of patient perceptions of care. A number of researchers have emphasized the need for increased attention to narrative, specifically patients' detailed accounts of what went well and what did not, as well as reports about what did or did not happen when patients received care, what they experienced in light of what they value, and whether needs have been met
These concerns led us to develop a novel approach to the assessment of health service use and quality, which we refer to as the "Dynamics of Care" assessment. The purpose of this article is to describe, validate, and discuss the benefits and limitations of the Dynamics of Care assessment, which was developed for a longitudinal evaluation study called "Choices in Care." The study was designed to evaluate New York State's Special Needs Plan – a comprehensive care model created for people with HIV and their children that was developed as an alternative to both Medicaid fee-for-service (FFS) and to Medicaid managed care
Methods
Sample
Individuals were eligible to participate in the Choices in Care study if they enrolled in one of the Special Needs Plans (SNPs) in the prior three months, or if they received care through the traditional Medicaid FFS system. Enrollment in a SNP is voluntary, and the majority of people with Medicaid in New York City who are HIV+ are still receiving care through the FFS model. Thus, we oversampled SNPs enrollees to facilitate comparison with FFS. New SNP enrollees and FFS recipients were eligible for the study if they were 18 years of age or older, spoke either English or Spanish, resided in New York City, had the cognitive capacity to complete the informed consent and a 1 hour interview, and were not incarcerated at the time of the recruitment call.
The Special Needs Plan model began in 2003. To date, the three active plans have an enrollment of over 2000 individuals. Study recruitment began in September, 2003, following approval from the Institutional Review Boards at Memorial Sloan-Kettering Cancer Center and the New York State AIDS Institute; recruitment concluded in January, 2007. We recruited new SNP enrollees within 45–90 days of their enrollment into one of the three plans, in order to get baseline information about their health status upon entering the plan, before they had an opportunity to make use of SNP services. New SNP Enrollees were identified from a roster of names provided monthly by the New York State Department of Health (NYSDOH) AIDS Institute. It is important to note that upon enrolling in a SNP, individuals were informed that they would be contacted for plan evaluation purposes. While all individuals had the opportunity to take part in the study, only a percentage were reached by phone and agreed to participate during the eligible timeframe (up to 90 days post enrollment). The comparison group of fee-for-service recipients was recruited concurrently as a convenience sample; they self-selected for the study by responding to flyers posted at Designated AIDS Centers, at community based organizations, and Adult Day Health Care programs. The majority of these recruitment sites provide care to HIV+ individuals under the fee-for-service model and to people enrolled in one of the Special Needs Plans. For privacy reasons, it was not feasible to obtain a list of all HIV+ fee-for-service recipients from which to recruit.
The purpose of the Choices in Care evaluation is to examine access to care, perceived quality of life, member satisfaction and patient reported outcomes among HIV+ adult medicaid recipients. Since the study's inception, 306 SNP enrollees and 322 FFS recipients have been recruited, for a total of 628 subjects. The study refusal rate among known eligible SNP enrollees was 12%. The majority of analyses reported here are based on data from 426 respondents who have completed the first and second (of five) study interviews.
Procedures
Study participants were interviewed five times, at three month intervals, in order to compare patient needs, access to care, quality of care, and patient outcomes across the SNP and FFS samples, and within the SNP sample across the three plans. The present validation study draws on data from the baseline and three-month interviews. The informed consent process occurred at the time of the baseline interview. Each interview took 30–45 minutes to complete and was conducted either in person at the study offices in New York City or on the phone, whichever was more desirable for the participant. Interviews were conducted in English or Spanish, depending on the participant's preference. In addition to transportation reimbursement, participants received $25 for the first interview, $30 for the second, $35 for the third, $40 for the fourth and $45 for completing the fifth.
Measures
Information about personal characteristics, including self-identified gender, age, race/ethnicity, whether the respondent's primary language is English or not, and education level (high school graduate or not), was obtained in the baseline interview. The Choices in Care study was designed to examine impact of care on patient reported outcomes. Thus, outcome measures were collected at baseline and again at six months, including health status, treatment adherence, risk behaviors, and quality of life. The main Dynamics of Care assessment occurred at the intervening three month interview, with brief follow-up questions occurring during the six month interview, including questions about the current status and resolution of events in care identified at the three month time point (see discussion of measure below).
The Dynamics of Care assessment
The Dynamics of Care assessment was designed to capture patients' experiences of care in detail, for the purpose of evaluation and quality improvement. It is an in-depth approach to defining and assessing patients' perspectives at different junctures during an episode of care, including their decision whether and where to seek care, the barriers they encountered, and the treatments and services they received. The Dynamics of Care is an interviewer administered assessment that begins by asking respondents whether they experienced problems in the last three months in nine specific areas ("trigger events") that the Special Needs Plan was designed to address. These areas include: 1) Adherence to Medical Instructions; 2) Medical Problems; 3) Specialty & Inpatient Hospital Care; 4) Preventive Health Care & Screening; 5) Sexual Risk Behavior; 6) Family Planning; 7) Psychological Symptoms; 8) Substance Use; and 9) Life Circumstances & Demands. This first part of the measure, the Events in Care Screening Questionnaire (ECSQ) contains 54 yes/no items and serves to identify the areas of recent concern to each patient
The main part of the Dynamics of Care interview explores respondent experiences, with respect to three selected events in care. The interview is structured with skip patterns to probe relevant questions depending upon how far individuals have progressed in regard to seeking and obtaining care. For each of the three trigger events, respondents are asked to provide a brief narrative description of the concern. They then delineate whether or not they sought care and what factors influenced that decision, including provider recommendations. Among those who were or are actively seeking care, we ask about any barriers and delays that they have encountered. For those who have already started receiving services it is determined which providers they have seen; respondents are then asked about experiences in care including the outcome of referrals, coordination of care, and communication with providers. Respondents are also asked to rate satisfaction with help received from the main provider involved with their care pertaining to each event. In addition, overall experience of problem resolution is explored including whether or not they are seeking or receiving care, or trying to handle a problem on their own.
If a participant mentions problems in more than three of the nine areas, three events are selected for further probing based on the area of greatest concern to the patient, the area that the patient rated
Health care
•
•
Health history and health status
•
•
•
•
∘
∘
•
•
Risk history and current risk behaviors
The respondents were asked their history and current activity (within the last 3 months) in a variety of risk behaviors including:
•
•
•
•
•
Personal characteristics
Variables include: self-identified gender; age; race/ethnicity; whether the respondent's primary language is English or not; education level (high school graduate or not); number of sources of income (0–9); monthly gross income from all sources; housing stability (whether or not the respondent lives in a place of his/her own); whether the respondent self-identified as gay or bisexual; whether the respondent had a spouse or partner; whether the respondent was living with a partner; number of other adults and minor children in the household; and whether the respondent was living with another seropositive person.
Analysis
Analyses were based on data from 426 respondents who completed the first two study interviews. All data were analyzed using SPSS V12.0 for Windows. In the results section that follows, we first present the characteristics of the sample, including demographic information, health status, health care utilization, and risk behavior. We next describe our identification and sampling of Events in Care for further assessment in the Dynamics of Care. Finally, we present a series of analyses of the psychometric and response properties of each section in the Dynamics of Care, including stage of help-seeking, barriers and delays encountered while seeking help, and perceived quality of interaction with main providers. For each section of the measure, we give the item response rates and intraclass correlations across respondents' specific areas of care. We also provide data on inter-item reliability and the principal component structure of summary scores. Lastly, we determine whether Dynamics of Care measures were related to demographic and health-related measures through a series of multiple regression analyses.
Results
Sample characteristics
Detailed demographic characteristics are outlined in Table
Sample Characteristics
Total Sample N = 426
Female
49.5%
46 years
Black
61%
Hispanic
39%
Spanish
18%
High school diploma or GED
64%
Bachelor's or higher degree
8.4%
Gay or Bisexual
26%
26%
Live with spouse or partner
21%
Live with adult other than spouse or partner
35%
Live with minor children
19%
Live with an individual who is seropositive
16%
10%
14%
48%
9.7 years
83%
46%
2.3
Had 2 or 3 conditions
38%
Had 4 or more conditions
24%
Reported never receiving treatment for one or more conditions
27%
4.27
63.7 (out of 100)
64.3 (out of 100)
With respect to risk behaviors, 75% of the sample has a history of crack, heroin, or other injection drug use; 23% had used one or more of these drugs in the past three months. Fifty-nine percent had sex with someone who injects drugs, and 18% have traded sex for money, drugs, or other needs. Nineteen percent of respondents reported having unprotected sex in the past three months, and 7% had unprotected sex with someone who is seronegative. Twenty-one percent had smoked one or more packs of cigarettes a day in the past three months, and 10% reported that they had too much alcohol in the past three months.
Events in Care
The first part of the Dynamics of Care assessment entails identifying and prioritizing events of interest to the respondent. As noted above, we developed the ECSQ, a face-valid measure including 54 items that probe needs in nine areas of concern. In each area, we asked whether people living with HIV/AIDS (PWHAs), had specific problems or concerns in the past three months, whether they needed additional information, and whether their providers had raised concerns. Detailed results of the validation of the ECSQ are presented in a separate paper
Rates of trigger concerns over the past three months, by area and item (N = 428)
Adherence to Medical Instructions
43%
Difficulty taking medications, like forgetting, being late, prescriptions
21%
Difficulty following medical advice
8%
Any side effects that interfered with activities or made you feel worse
29%
Questions about treatment or lab tests
14%
Any provider expressed concern about adherence or make treatment changes
16%
Medical Problems and Symptoms
66%
Any new symptoms or health problems
28%
Pain or symptom gets noticeably worse
27%
More tired or have less energy
47%
Any medical problem interfered with activities or ability to care for yourself
23%
Any questions about health symptoms
29%
Seek treatment at an emergency room
20%
Provider expressed concerns about your symptoms, pain or energy level
21%
Specialty & Inpatient Hospital Care
56%
Required a medical specialist
23%
Any dental problems
23%
Any problems with vision
29%
Any elective surgery or procedure
8%
In hospital or institution (medical)
9%
Provider suggested a medical specialist
18%
General Wellness and Prevention
50%
Want check-up or screening for blood pressure, diabetes, cancer, etc.
23%
Change habits: diet, smoking, exercise
38%
Have any questions about staying healthy to discuss with provider
29%
Provider said you were overdue for any procedure, screening or other tests
11%
Substance Use
11%
Increased use of alcohol, marijuana, heroin, cocaine or drugs
7%
Your concerns about alcohol, drugs
9%
Provider concerned re: alcohol, drugs
8%
Sexual Health and Risk Behavior
31%
Find better ways to prevent sexual transmission of HIV or other infections
27%
Difficulty practicing safer sex
6%
Difficulty talking about HIV
4%
Want to discuss sexual risk and protection with provider
8%
Provider expressed concern about sexual risk or not protecting yourself
9%
Family Planning and Birth Control
14%
Want better ways to prevent pregnancy
7%
Made changes to birth control choices
2%
Considering changes to birth control
2%
Thinking about having a baby
9%
Want to discuss birth control or family planning with provider
4%
Provider had concerns, changes to birth control or family planning decisions
3%
Psychiatric Symptoms
54%
Bothered by sadness or depression
48%
Felt panicky, anxious or out of control
32%
Confusion or difficulty concentrating interfered with activities or self-care
29%
Thoughts of harming yourself or others
6%
In hospital or institution (psychiatric)
2%
Questions about coping with feelings or changes in thinking or memory
22%
Provider suggested psychological help
20%
Dealing with Life Circumstances
41%
Medicaid coverage, loss of income, benefits, housing, or legal problems
22%
Needs of others (like children, family, partner) interfere with self-care
4%
Increased responsibilities at home
16%
Caring for someone sick or disabled
12%
Questions about how to handle problems with money, housing, family
11%
Provider discussed problems related to living situation and care giving
11%
Selection of concerns for further assessment
Due to practical limitations of time, we decided to ask respondents the Dynamics of Care questions in only three of their identified areas of concern. As mentioned above, in order to select a representative sample of clients' concerns for further discussion in the Dynamics of Care assessment, we first asked respondents to rate their satisfaction with services available to them in each area, in order to select areas in which they were most and least satisfied. Then, we asked them to indicate which area represented their "biggest concern or need." These ratings allowed us to follow-up on clients' most salient concerns, as well as additional areas of concern that varied in terms of level of satisfaction with services. When several different areas received a respondent's highest or lowest rating, interviewers were instructed to select one of the areas that were mentioned less frequently in our pilot data, specifically, Family Planning, Sexual Risk Behavior or Substance Use. In other words, we designed the process to over-sample areas that tended to be mentioned less frequently. Table
Rates of Selection of Areas to Probe in Dynamics of Care Interviews
1
2
3
4
5
6
Chosen as Most Important
Chosen as Most Satisfied
% Chosen as 2nd Area to Probe
Chosen as Least Satisfied
% Chosen as 3rd Area to Probe
% of All Events Chosen
Adherence to Medical Instructions
10%
52%
63%
29%
83%
15%
Medical Problems
21%
41%
17%
27%
50%
15%
Specialty & Inpatient Hospital Care
13%
46%
48%
32%
72%
16%
Preventive Health Care & Screening
7%
48%
30%
34%
58%
10%
Substance Use
5%
31%
87%
15%
86%
4%
Sexual Risk Behavior
4%
51%
84%
22%
79%
10%
Family Planning
3%
43%
100%
11%
100%
5%
Psychological Symptoms
16%
40%
26%
30%
56%
13%
Life Circumstances & Demands
20%
32%
30%
25%
66%
13%
1. Proportion of time each area was identified as the most important concern to discuss.
2. Proportion of time area was identified as one of the areas with most satisfactory care.
3. Proportion of time area was chosen when it was eligible for the second slot.
4. Proportion of time area was identified as one of the areas with least satisfactory care.
5. Proportion of time area was chosen when it was eligible for the third slot.
6. Proportion of time area was chosen for discussion in any slot out of all selected areas.
Life Circumstances & Demands (20%), Medical Problems (21%), and Psychological Symptoms (16%) were identified most often as respondents' biggest areas of concern, in contrast with Substance Use (5%), Sexual Risk Behavior (4%), and Family Planning (3%) (see Table
Among those people who had indicated concerns in a given area, areas most likely to be given the highest satisfaction ratings included Adherence to Medical Instructions (52%), Sexual Risk Behavior (51%), Preventive Health Care & Screening (48%) and Specialty and Inpatient Hospital Care (46%) (see Table
Areas most likely to receive clients' lowest satisfaction ratings included Preventive Health Care and Screening (34%), Specialty and Inpatient Hospital Care (32%), and Psychological Symptoms (30%). Areas least likely to receive lowest ratings included Family Planning (11%) and Substance Use (15%) (see Table
Overall, the strategy of selecting respondents' greatest concern, considering other areas according to level of satisfaction, and over-sampling less common concerns yielded good representation across the nine areas under consideration. We were able to probe 969 events in care, which represents 62% out of a total of 1568 events indicated by the ECSQ. The distribution of these events ranged from 4% in the area of Substance Use to 16% in the area of Specialty and Inpatient Hospital Care (see Table
Overview of analysis of the Dynamics of Care
We conducted a series of analyses on the Dynamics of Care assessment to better understand the psychometric and response properties of each section. The Dynamics of Care assessment was designed to be used in several different ways. The focus on specific events in care makes it possible to examine similar issues across different clients and settings (for example, comparing all episodes in the area of adherence). It is also possible to combine like items across areas of assessment, to derive idiographic (that is, individually-defined) measures of processes in care that are comparable across individuals, despite differences in events in care. For example, it is reasonable to examine individuals' average satisfaction across providers. Similarly, we can indicate whether clients ever encountered a particular barrier in seeking care, irrespective of the specific events in care under consideration.
For the present paper, we have focused analysis on summary ratings derived from the dynamics measurements. This provided an opportunity to consider how baseline individual differences in health care, health status, and personal characteristics related to experiences in care. In order to present analyses in a cogent fashion, we will focus on each section of the interview in sequence: Stage of Help-Seeking, Barriers and Delays Encountered while Seeking Help, Perceived Quality of Interaction with Main Providers and Problem Resolution. This is necessary because sample size changes from section to section (e.g., we only discuss barriers encountered while help-seeking among those respondents who actually sought help). This sequential approach also conveys how the assessment can highlight and focus on different junctures in care.
For each section of the measure, we present information on item response rates, as well as item homogeneity (intraclass correlations) across respondents' sampled areas of care. We also provide information on data reduction procedures, including inter-item reliability (Cronbach's alpha coefficient) and principal component structure of various summary scores. These results are presented in the narrative or in separate tables, below. Finally, we describe results of a series of multiple regression analyses to determine whether Dynamics of Care measures were related to demographic and health-related measures in a coherent fashion. In order to filter the large number of predictor measures and focus in on the strongest and most reliable associations with each dynamics variable within the different sections, we conducted separate regression analyses to identify the strongest predictors from each set of measures, and then considered only those predictors in a final, overall analysis. Results of all regression analyses are presented in similar format, summarized in Tables
Regression Analyses – Stage of Help-Seeking
% Already Receiving Help
0.13
p < .001
Dealing with Life Circumstances (-0.21)
Dental Care (0.16)
Recent Unprotected Sex (-0.14)
Spanish Speaking (0.11)
Number of Case Managers (-0.08)
Any Employment (0.10)
Psychiatric or Mental Health Care (0.14)
Criminal Justice Involvement (-0.13)
Problems Recognized by a Provider (0.10)
% Seeking Help
0.12
p < .001
Dealing with Life Circumstances (0.18)
Dental Care (-0.14)
Physical QOL (-0.10)
Spanish Speaking (-0.09)
Specialty and Inpatient Care (0.15)
Number of Case Managers (0.12)
Recent Unprotected Sex (0.15)
Any Employment (-0.11)
Lives with Other Adults (0.13)
% Considering Help
0.07
p < .001
Substance Use (0.15)
Problems Recognized by a Provider (-0.08)
CD4 Count Greater than 200 (0.09)
Age (-0.11)
General Wellness and Prevention (0.11)
Alcohol Use (0.08)
Lives with Another HIV+ Person (-0.09)
% Would Not Consider Help
0.09
p < .001
Specialty and Inpatient Care (-0.13)
Number of Specialists (-0.12)
Number of Symptoms (-0.09)
Latino Identity (-0.16)
Dental Care (-0.11)
High School Graduate (-0.12)
Number of Case Managers (-0.08)
Criminal Justice Involvement (0.11)
Special Needs Plan Enrollee (-0.10)
Stage of help-seeking and factors that influenced help-seeking decisions
The first section of the Dynamics of Care interview assesses whether and when individuals started to seek help for each sampled event in care. To be selected, these events had to have been a concern at some point during the three months prior to the interview; however, the onset of these concerns could have occurred earlier. Thus, of the 969 events sampled for probing, 16% had emerged as problems in the last month and an additional 28% occurred in the past three months. Of the remaining events, 13% emerged within the past six months, 14% within the past year, and 29% had been problems for a year or more. Respondents had already started to receive help for 52% of the sampled events, were actively seeking help for 16%, and were considering seeking help for 21%. For the remaining 11% of events, respondents said that they would not consider seeking professional help. Across 387 individuals (of a possible 428) who identified at least one event in care, 80% were already receiving help for at least one of their sampled concerns, 34% were seeking help for at least one concern, 41% were contemplating help seeking in some area, and 23% mentioned at least one area in which they would not consider seeking professional help. Among 262 individuals for whom three events were sampled, intraclass correlations (ICC) in help seeking status indicators were relatively low across areas of care, ranging from .02 to .09. (ICC can be interpreted as a correlation between the measure and some indicator of class membership – in this case that events were all reported by the same individual). The timing of the onset of individuals' different concerns also had a moderate ICC = .23. These results suggest that the interview succeeded in eliciting discussion of individual problems and concerns that were distinct from one another.
In order to study differences in help seeking, we created composite scores reflecting the proportion of events for which an individual was receiving, seeking, contemplating or avoiding help. Correlates of these composites are presented in Table
Help seeking was also associated with presence of providers. As expected, receipt of help was generally associated with provider recognition of problems and presence of different types of providers. However, people seeking help tended to report greater involvement with case managers, especially compared to people who were already connected to services. Help seeking was also associated with individual health status. People who reported poorer physical quality of life at baseline were more likely to be seeking care, while those with fewer symptoms were more likely to say that they would not consider professional help. Alternatively, recent sexual risk behavior and alcohol use were associated with seeking and contemplating care, respectively. Help seeking was also related to indicators of socioeconomic status, with employed individuals more engaged in care, in contrast with those who were recently involved in the criminal justice system or who had not completed high school. Ethnic differences also emerged. Spanish-speaking Hispanics were more likely to have been receiving help, but respondents who identified as Hispanic reported being less likely to not consider seeking help. Active help seeking was also associated with living with other adults and particularly other HIV+ individuals. Younger respondents were also more likely to be considering help.
In order to better understand help seeking, the Dynamics of Care assessment includes a series of nine items that ask about beliefs and preferences that might deter help seeking. These items and their orthogonal varimax principal component structure are presented in Table
Item Endorsement and Principal Components Analysis of Influences on Decisions to Seek Care (N = 969 events in care from 387 clients)
Items
Response Rate*
1
2
3
4
Were afraid that nothing would help
25%
0.73
0.30
0.19
0.04
Felt like you should just learn to live with this concern
33%
0.71
0.01
0.39
0.13
Thought that getting help would lead to unwanted changes in your care
20%
0.68
0.29
0.04
0.25
Worried that getting help might make this problem worse
13%
0.66
0.19
0.09
0.03
Felt embarrassed or uncomfortable
22%
0.25
0.85
0.15
0.11
Thought that you might be judged
19%
0.25
0.85
0.15
0.09
Wanted to get things back on track on your own
53%
0.12
0.07
0.84
0.24
Needed more information about help that was available
49%
0.28
0.29
0.72
-0.10
Thought that this was not important enough to go for help
10%
0.18
0.14
0.12
0.94
*Proportion of events for which respondents indicated that this item influenced their decision to seek care "somewhat" or "a great deal".
1. Belief that Nothing Would Help – Had to Learn to Live With Problem
2. Felt Uncomfortable, Judged, Embarrassed about Seeking Care
3. Wanted to address things on your own – Needed more Information
4. Not Important Enough to Go For Help
Correlation analyses indicated that these components explained differences in help seeking. In particular, the decision to not consider professional help was significantly associated with lack of desire for additional information to get things on track (r = -.19, p < .001), the belief that it was not necessary to learn to live with the problem at hand (r = -.12, p < .04), and the feeling that the problem was unimportant (r = .10, p < .06). Alternately, the desire to obtain information to get things back on track was positively associated with both considering help (r = .16, p < .002) and seeking help (r = .11, p < .04). As might be expected, people already in care were less likely to feel that their concerns were not important enough to warrant formal help (r = -.13, p < .02).
Results of regression analyses shown in Table
Regression Analyses – Barriers and Delays Encountered while Seeking Help
Believed Nothing Would Help – Had to Learn to Live With Problem
0.12
p < .001
Sexual Health and Risk Behavior (0.17)
Nursing Care (0.14)
Years Since HIV Diagnosis (0.12)
Spanish Speaking (0.26)
Physical, Occupational Therapy, Rehab (0.14)
Undetectable Viral Load (-0.11)
Gay or Bisexual Identity (0.13)
Home Assistance (0.13)
Psychological QOL (-0.11)
Special Needs Plan (SNP) Enrollee (-0.11)
Felt Uncomfortable, Judged, Embarrassed about Seeking Care
0.13
p < .001
Psychiatric Symptoms (0.24)
Total Number of Providers (0.10)
Number of Lifetime Diagnoses (0.10)
Number of Sources of Income (-0.16)
Family Planning and Birth Control (0.10)
Special Needs Plan (SNP) Enrollee (-0.14)
Years Since HIV Diagnosis (-0.08)
Number of Symptoms (0.14)
Wanted to address things on your own – Needed more Information
0.08
p < .001
Sexual Health and Risk Behavior (0.16)
Nursing Care (0.16)
Recent Hard Drug Use (0.12)
Latino Identity (0.20)
Substance Use (0.11)
Number of Sources of Income (-0.11)
Not Important Enough to Go For Help
0.1
p < .001
Substance Use (0.10)
Dental Care (-0.16)
Undetectable Viral Load (0.11)
Lives with Minor Children (0.09)
Nursing Care (0.09)
Years Since HIV Diagnosis (0.10)
Recent Hard Drug Use (0.15)
Recent Unprotected Sex with HIV- Partner (0.14)
Difficulty getting an appointment with provider
0.12
p < .001
Medical Problems and Symptoms (0.18)
Home Assistance (0.14)
Years Since HIV Diagnosis (0.17)
Spanish Speaking (0.11)
Psychiatric Symptoms (0.15)
Nursing Care (0.11)
Psychological QOL (-0.18)
Unstable Housing Situation (-0.10)
Specialty and Inpatient Care (0.15)
Language difficulties
0.23
p < .001
Sexual Health and Risk Behavior (0.24)
Physical, Occupational Therapy, Rehab (0.21)
Psychological QOL (-0.18)
Spanish Speaking (0.33)
Specialty and Inpatient Care (0.12)
Nursing Care (0.19)
Recent Unprotected Sex (0.20)
Level of Education (0.12)
Number of Providers Seen per Concern (0.12)
Special Needs Plan (SNP) Enrollee (-0.07)
Transportation problems or distance
0.17
p < .001
Psychiatric Symptoms (0.22)
Home Assistance (0.11)
Undetectable Viral Load (-0.11)
African American (-0.14)
Medical Problems and Symptoms (0.19)
Involved in Sex Work (-0.13)
Level of Education (0.13)
Family Planning and Birth Control (0.13)
Psychological QOL (-0.15)
Number of Sources of Income (-0.13)
Dealing with Life Circumstances (0.18)
Recent Unprotected Sex (0.11)
Lives with Main Partner (0.14)
Accessibility problems because of things like stairs, curbs, or lack of ramps
0.12
p < .001
Dealing with Life Circumstances (0.17)
Number of Case Managers (0.12)
Physical QOL (-0.10)
Lives with Main Partner (0.10)
Sexual Health and Risk Behavior (0.16)
Psychiatric or Mental Health Care (-0.11)
Adherence to Medical Instructions (0.15)
Number of Providers Seen per Concern (0.12)
Specialty and Inpatient Care (0.13)
Inconvenient hours
0.16
p < .001
Specialty and Inpatient Care (0.24)
Physical, Occupational Therapy, Rehab (0.21)
Number of Lifetime Diagnoses (0.11)
African American (-0.10)