NeuroRehabilitation An IniordllClplllllry Joumal
ELSEVIER
NeuroRehabilitation 7 (1996) 175-187
A longitudinal analysis of family needs following traumatic brain injury Adrienne D. Witol*a, Angelle M. Sander a, Jeffrey S. Kreutzera,b a Department of Physical Medicine
and Rehabilitation, Medical College of Virginia, MCV Box 980542, Richmond, VA 23298-0542, USA bDivision of Neurological Surgery Medical College of Virginia Richmond, VA, USA
Abstract The present investigation assessed 38 family members' perceptions of unmet, partly met and met needs following the brain injury of a relative. Follow-up data was collected at two time intervals averaging 6 and 24 months post-injury. There was no significant difference between the proportion of needs rated as important or very important at time I or II. Highly ranked needs included requests for information, clear and honest explanations from professionals, reassurance, respite care, educational and social activities for the patient, emotional support, financial counseling, and advice about community resources. Relatives rated nearly half of the 40 needs as not met at either time. A significant difference was noted in the proportion of un met/partly met needs within each factor scale at time I and II. A larger number of Emotional Support and Involvement with Care needs were reported as not met at time II. Needs for Professional Support were more frequently reported as met at time II. For both time periods, Health information needs were generally perceived as met while needs relating to Instrumental Support were largely unmet. The findings are discussed in light of implications for treatment and long term adjustment to injury related changes. Keywords: Family needs; Traumatic brain injury
1. Introduction
The prevalence and longevity of neurobehavioral difficulties following traumatic brain injury (TBI) has been well documented [1-3]. Common problems, including memory loss, learning dif-
* Corresponding author. Tel.: + 1 804 8289055; fax: + 1 804 8282378.
ficulties, poor judgment, irritability, and impulsivity can affect the individual who sustained injury, as well as his/her family members for seven or more years postinjury [2,3]. In contrast to persistent behavioral, emotional and cognitive symptoms, interactions with health professionals and rehabilitative programs is relatively short. Instead, families are increasingly responsible for providing care. The long-term implications of TBI can place a severe strain on families' coping skills.
1053-8135/96/$15.00 © 1996 Elsevier Science Ireland Ltd. All rights reserved. PlI S 1053-8135(96) 00190-4
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Relatives may respond by denying personal needs in order to ensure providing their loved ones' care [4-6]. The importance of individual and family needs following the incidence of TBI is highlighted by the presumed relationship between stress, difficulties coping, and long-term psychosocial adjustment. In addition, family functioning exerts positive and/or negative influences upon the individual with a TBI, his or her subsequent recovery and other family members [7]. Kreutzer and colleagues have demonstrated that emotional distress levels in the person with TBI were positively correlated with levels of family distress [8]. Family needs are continually evolving as the individual recovers, transitions to community care, and the family and individual adapt or fail to adapt to changes in social, emotional, and cognitive functioning. Presumably, individuals whose needs are generally met, adapt to injury related difficulties and experience less stress than do those with many unmet needs. With time, needs which were initially easily bypassed may become more pressing, taxing coping skills and affecting subjective well-being. 2. Caregiver and family needs following TBI
Molter [9], was one of the first to systematically investigate family needs of critically ill patients. The authors provided no specific information about patient diagnosis. While all patients had spent at least 3 days on an intensive care unit, it is uncertain if any of the patients had sustained a TBI. Family members (n = 40) were administered a 45-item questionnaire as part of a structured interview. The measure was developed through a literature review and survey of nursing graduate students. No information regarding the validity of the structured interview format was provided. Relatives, of whom 75% were males, were asked to rate needs on a scale of 1-4 (not important to very important), identify each need as met or unmet, identify who typically helped the subject meet the particular need, and state if there were any other pertinent needs not included on the questionnaire. Molter also examined the frequency of met and
unmet needs for items that were described as important or very important. Of this subset, only four needs were described as unmet by a majority of family members: (1) to talk to the doctor at least once a day (90%); (2) to be told about chaplain services (80%); (3) to have a place to be alone while in the hospital (0%); and (4) to have help with financial problems (97%). Leske [10], adapted Molter's structured needs questionnaire by changing the order of item presentation and named the interview the Critical Care Family Needs Inventory (CCFNI). Cronbach's alpha was 0.98, supporting the measure's internal consistency. No other information regarding the construct validity or reliability of the structured interview format was provided. The author administered the CCFNI to 55 family members of 20 critically ill patients. No specific diagnostic criteria was provided. However, the majority of patients were injured due to a motor vehicle accident or assault and there is a high likelihood that at least a subset of patients had incurred a TBI. Family members were asked to rank needs based on importance. In cases where more than one family member participated, the relatives were asked to reach a consensus. Highly ranked needs included: beliefs about hope; honest answers to questions; prognostic information and frequent updates regarding progress and treatment; and feeling that the staff cares about the patient. No information regarding met or unmet needs was provided. Mauss-Clum and Ryan [11], were among the first to specifically address the family needs of persons with neurological disability. The investigators surveyed a small sample (n = 30) of wives and mothers about the effects of brain injury from stroke, progressive neurological disease, and traumatic brain injury. Patients were at least 6months post-injury or disease onset, but no efforts were made to distinguish needs on the basis of diagnosis. The sample was asked to recall experiences during the intensive care phase of their family members' illness, rank a group of needs, and identify what kinds of help were received. No information was provided regarding the questionnaire's construction, reliability or validity.
A.D. Witol et al. / NeuroRehabilitation 7 (1996) 175-187
Among needs identified as important, kind and clear explanations, discussion of realistic expectations, emotional support, financial counseling, and advice about community resources were rated most highly. The authors also provided data regarding the information or assistance relatives received at the time of injury. Approximately 57% of the sample reported having received explanations regarding the patient's condition, while one half reported having received emotional support. Less than 25% of the sample reported having discussions about realistic exceptions, or receiving financial or resource counseling. Finally, 20% of the sample reported having received no information or support at the time of injury. The retrospective nature of data collection likely influenced family members' recollections of important needs and received support. In contrast, Mathis [12] directly surveyed family needs of critically ill patients, with and without TBI. Molter's questionnaire [9], was completed by 26 family members, 11 of whom were relatives of patients with traumatic brain injury. All of the relatives of persons with TBI were female. Cronbach's alpha of 0.94 for questionnaires completed by family members of patients without TBI and 0.90 for those of relatives of persons with TBI provided support for the measure's internal consistency. No information regarding the construct validity or reliability of the structured interview format was provided. Chi-square analyses revealed significant differences between the perceptions of important needs of family members of patients with and without acute brain injury. Highly ranked needs of family members of patients with TBI included needs for medical information, reassurance, close communication, and honesty from professionals. In contrast, to the needs of families of critically ill patients, highly ranked needs for TBI families included information regarding the patient's medical care and feeling accepted by the hospital staff. Needs ranked as 'not important' by the majority of respondents included needs relating to: flexible visiting hours; having company while visiting; talking about negative feelings such as guilt and anger; and being encouraged to cry. Engli and Kirsivali-Farmer [13], replicated
177
Mathis' investigation, finding differing needs between family members of patients with (n = 8) and without (n = 6) acute brain injury. Family members of patients with acute brain injury ranked needs for medical information, frequent visits, reassurance, close communication and honesty from professionals most highly. Only five needs were ranked similarly by both groups. Highly ranked needs unique to family members with TBI related to: prognostic information; having questions answered honestly; reassurance regarding medical care; and visiting frequently. Three quarters of the small sample reported that their top ranked needs had been met by medical staff, chaplains, friends, and/or relatives. Campbell [14] surveyed needs of 14 relatives participating in a support group for family members of patients with brain injury. Commonly reported needs related to: information about injury sequelae, the future, community resources, and finances; having questions answered honestly; help maintaining hope; opportunities to discuss feelings; and participation in community activities. The majority of respondents described the support group as helpful in providing emotional support and meeting informational needs pertaining to community resources, the effects of TBI and financial assistance. Half of the participants judged the group as not helpful in providing information about physical care or helping participants obtain support from religious institutions. Approximately 40% of the participants described the group as not helpful in meeting needs relating to: respite; learning how to reorganize family chores; learning how to adjust to the patient's memory loss; and coping with behavioral changes. While these efforts produced clinically intriguing data, findings were limited by the small sample size and the absence of a reliable and valid measure of family needs. The Family Needs Questionnaire (FNQ) was developed in response to methodological concerns regarding assessment of family needs and the degree to which needs are met following TBI. Needs items were derived from a review of the literature on family reactions to neurological disabilities, adapted from existing questionnaires [9-12,14,15] or based on needs frequently ex-
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pressed during clinical interviews. Studies of family adjustment following brain injury have provided support for the FNQ's validity and clinical utility [16,17]. Kreutzer, Serio, and Bergquist [16], used the FNQ to systematically survey the needs of 119 relatives of patients with TBI. The majority of relatives were female. Time post-injury ranged between 1 week and 8 years. Spearman-Brown split-half reliability coefficient was 0.75, reflecting adequate internal consistency. Rank ordering revealed that needs related to information regarding: neurobehavioral sequelae and behavior management; honest communication; reassurance; and access to professional advice or services were most frequently rated as important. In contrast, needs frequently rated as 'not important' related to help taking care of the patient and managing household responsibilities, being reassured about having strong negative feelings towards the patient, spending time with friends, and having friends and family members' understanding. The authors also provided information relating to the frequency of met and unmet needs for items that were described as important or very important. At least two thirds of the sample described needs relating to information, access to professional support, and talking with friends or family about the patient as met. However, one third of participants described needs including help preparing for the worst, help remaining hopeful, opportunities to speak with persons who have gone through similar problems, and respite as unmet. In addition, perceptions of met needs decreased with time post-injury. In a subsequent investigation, Serio and colleagues [17], as part of a study focusing on prediction of family needs, used the FNQ to assess the needs of 180 family members of persons with TBI between 1 month and 12 years post-injury. Highly ranked needs were related to health information and emotional support. Interestingly, time since injury was not a strong predictor of family needs. 3. Summary
Methodological problems in family needs research limit our ability to draw firm conclusions
about the needs of family members with TBI. Many studies did not provide information regarding patients' diagnoses. The use of small sample sizes with uncertain composition raises questions about representativeness. Finally, information regarding the construct validity or reliability of the assessment measures has rarely been provided. Despite methodological differences, a review of the literature has revealed a striking consensus regarding needs following traumatic brain injury [11-14,16-18]. While needs relating to information, encouragement, and help maintaining hope were consistently reported, the perception of the degree to which needs were met varied. Various theoretical models of family adjustment exist; however, little research has been done examining how family needs change over time. The present investigation was intended to provide information about changes in family needs using an assessment tool with known psychometric properties. A longitudinal design was used to identify changes in the extent to which needs were rated as met and their level of importance. 4. Method 4.1. Subjects
Subjects for the current study were selected from a larger data base of patients who had sustained traumatic brain injury and were referred for outpatient neuropsychological evaluation at a large urban medical center. Relatives were identified by the patient based o~ frequency of contact with the patient. A subset of the relatives was administered the FNQ. Eighty-four subjects had FNQ data available for at least two time periods. Relatives who had completed the FNQ at two time intervals were included in the longitudinal sample (n = 38). At initial follow-up, the average time elapsed since the patient's injury was 27.92 weeks (SD = 3.32 weeks). An average of 87.36 weeks (SD = 43.68) had elapsed since injury at second follow-up. A series of t-test analyses were conducted to compare the longitudinal sample to the original database sample in terms of patients' age at injury and injury severity. No differences were found between the groups for
A.D. Witol et al. / NeuroRehabilitation 7 (1996) 175-187
age, duration of unconsciousness, or Glasgow Coma Scale scores at the time of hospital admission (P > 0.05). 4.2. Relatives
The mean age of family members was 39.19 (range = 18-67, SD = 11.50). The majority were Caucasian (76%) and female (81%). AfricanAmericans comprised 21 % of the sample, and the remain~~r were Hispanic. Regarding relationship to the lDJured person, the majority of the sample were spouses (61%), parents comprised 28% of the sample and the remainder were siblings (2%), offspring (4%), girl/boyfriend (2%), or some other close relation (2%). Educational backgrounds varied: 32% did not complete high school; 11 % had graduated from high school; 21 % had attended some college; and 16% of participants had earned college undergraduate or graduate degrees. The majority of the sample reported a total household income of less than $30000 at both time I and II (59% and 63%, respectively). The majority of relatives resided with patients at initial (87%) and later (89%) assessments. The mean days each week spent with the patient at time I was 6.50 (SD = 1.70) and time II was 6.54 (SD = 1.57). Respondents at time I typically reported spending 8 h or less caring for, supervising, or helping the patient each day. Slightly more than half the sample (54%) spent 4 h or less caring for the patient at time II, while approximately one-third spent 9 h or more caring for the patient. 4.3. Patients
The majority of patients were male (74%) and Caucasian (76%). The remainder of the patients were African-American (24%). Motor vehicle acci~ents were the primary cause of injury (71 %), With a lesser number of persons injured by falls (10%), assault (8%), and firearms (8%). The average age at the time of injury was 33.1 (range = 17-57; SD = 10.80). Information about duration of unconsciousness was available for 92% of the sample (M = 7.93 days; SD = 21.95). Admission
179
GCS scores were available for 55% of the sample (M = 7.0; SD = 3.08). 4.4. Instruments
The FNQ is a self-report measure that asks caregivers to rate 40 needs along two dimensions. Level of importance is rated as 'not important', 'somewhat important', 'important', and 'very important'. Respondents can also designate needs as 'not applicable'. Each need is also rated as 'met' 'unmet', or 'partly met'. A principal componen~ factor analysis based on the FNQ responses of 178 family members revealed 37 items comprising six factors: (1) health information; (2) emotional support; (3) instrumental support; (4) professional support; (5) community support network' and (6) . lDvolvement with care [19]. Acceptable ' internal reliability for scales representing each factor was indicated by Cronbach's alpha values ranging from 0.78 (nvolvement with care) to 0.89 (health information). Descriptions of scale content are pro~ided in Table 1, and examples of items comprismg each scale are provided in Tables 3, 4 and 5.
4.5. Procedure Patients were referred for evaluation at an outpatient rehabilitation clinic affiliated with a university based, level I trauma center. Relatives were asked to accompany the patient to their evaluation. The FNQ was mailed to relatives for completion before the patient's appointment. On arrival for the evaluation, questionnaires were reviewed for accuracy and completeness. Trained staff members reviewed the questionnaires for missing information and requested clarification when necessary. 5. Results The first set of data analyses focused on need importance ratings. Importance was defined as a rating of 'important' or 'very important'. The second set focused on analysis of unmet needs.
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Table 1 Description of FNQ scale content Factor
Needs scale content description
Items
Health information
Information about the patient's medical care, physical condition, cognitive status and psychosocial functioning
10
Emotional support
Family member receives understanding, reassurance, and nurturance from family, friends, and others in the community
8
Instrumental support
Respite and practical assistance in meeting responsibilities are available. Relatives also have opportunities to fulfill personal, physical, and social needs
6
Professional support
Relatives have long-term access to training and information on how to best help manage the patient's difficulties
6
Community support network
Important members of the patient's peer group, including those in evaluative positions, understand injury related difficulties and are supportive of the rehabilitation process.
5
Involvement with care
Family has been integrated into the patient's treatment team; their opinions are solicited and they are kept informed of the rehabilitation process
3
5.1. Analysis of importance ratings by item and percentage score
To help in ranking needs, the proportion of respondents who rated each item as important was determined. One third of the needs (17) were rated as important by at least 90% of relatives at either time interval. Six needs were rated as important by the entire sample at time 1. Two of these needs were ranked as important by 100% of respondents at both time intervals, 'I need to be reassured that the best possible medical care is being given', and 'I need to have my questions answered honestly'. At second follow-up, all needs were rated as important by a majority of family members. Thirteen of the 17 items were rated as important at both time intervals (see Table 2). Only one need was rated as unimportant by a majority of family members, 'to give my opinion daily to others involved in the patient's care, rehabilitation, or education'. To characterize individual perceptions of how important the 40 needs were, an Importance Percentage score was calculated for each respondent. To compute the Importance Percentage score, the total number of items rated as 'important' or 'very important' was calculated and divided by 40.
A matched pairs t-test revealed no difference in the mean Importance Percentage score at time I (71 %) and time II (67%) (p > 0.05). 5.2. Analysis of importance ratings based on scale scores at time I and II
Scale scores for each respondent were calculated by summing the scores for items within the scale and dividing by the number of completed items. Missing items and those rated as 'not applicable' were not included in the calculations. Mean scale scores for both time intervals are presented in Fig. 1. Mean differences ranged from - 0.07 to 0.43. Differences for scales including Professional Support (- 0.07), Involvement with Care ( - 0.07), and Health Information were negligible (+ 0.03). The largest difference was noted for Instrumental Support where a 15% increase in the importance rating was noted between time I (M = 2.82) and time II (M = 3.25). 5.3. Analysis of unimportant needs at time I and II
To gain a sense of areas of support judged least important, the items commonly rated as 'not important' were examined (see Table 3). At time I,
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Table 2 Top ten important needs postinjury Time I
%
I need to ...
Time II
%
I need to ...
be told of all changes in the patient's medical status
100
be assured that the best possible medical care is given to the patient
100
have information on thinking problems
100
have my questions answered honestly
100
have questions answered honestly
100
get explanations I can understand
97
have information on TBI medical care
100
have information on TBI medical care
97
have information on the patient's physical problems
100
have information on the patient's physical problems
97
be assured that the best possible medical care is given to the patient
100
be shown what to do when the patient is upset or acting strange
97
have a professional to tum to for advice or services when the patient needs help
97
have information on the patient's rehabilitative or educational progress
97
have enough resources for the patient
97
get a break from my problems and responsibilities
be shown what to do when the patient is upset or acting strange
97
have a professional to tum to for advice or services when the patient needs help
94
be shown what to do when the patient wishes
94
have information on the patient's thinking problems
94
have staff members agree about treatment plans
94
be told why the patient acts different or strange
94
be told how long problems are expected to last
94
be told how long problems are expected to last
94
have information on the patient's rehabilitative or educational progress
94
know my opinions are used in treatment planning
93
have enough resources for myself and myfamily
93
be told of changes in the patient's medicial status
93
get explanations I can understand
92
have enough resources for the patient
93
be told why the patient acts different or strange
91
have my family understand the patient's problems
92
have help remaining hopeful
91
have help preparing for the worst
91
Items in italics denote needs unique to time period I or II.
spending time with friends was most often rated (24%) as unimportant. At time II, giving opinions to professionals was most often rated (35%) as unimportant. At both time intervals, giving opinions to professionals and discussing feelings with others were among the five needs most frequently rated as unimportant. No items from the Professional Support or Health Information scales were commonly rated as unimportant.
5.4. Analysis of met and unmet needs by item and percentage
Methods for calculating the proportion of 'met', 'partly met', and 'unmet' needs for each scale were adopted from Kreutzer et al. [16]. For each respondent, calculations only included needs described as 'important' or 'very important'. For
A.D. WilOl et al. / NeuroRehabilitation 7 (1996) 175-187
182
Involvement with Care
Community Support Network
Professional Support
Instrumental Support
Emotional Support
Health Information
2
1.5
2.5
3
3.5
4
Mean Scale Score
o Time I
• Time II
Fig. 1. Mean Importance Factor Scale Scores
example, the Met Needs percentage was calculated by dividing the number of needs rated as 'met' by the total number rated as 'important' or 'very important'. There was little indication of overall changes in the proportion of met and unmet needs over time. Approximately one half of all needs were characterized as 'unmet' at time I (53%) and time II (49%). Nearly one third were described as 'partly met' at either time interval (I = 31 %; II = 28%). A relatively small number of needs were characterized as 'met' (I = 13%; II = 20%). Differences in the need indices at time I and II were examined using matched pairs t-tests. No signifi-
cant differences were found for unmet, partly met, or met need percentages (P> 0.05). To help in delineating priorities for service delivery, needs most often rated as 'unmet', were also identified at each time interval (see Table 4). At least 30% of the sample identified six needs as 'unmet' at time I and nine needs at time II. The need 'to talk with others who have gone through similar experiences' was most often rated as 'unmet' at both time intervals. In addition, three of the needs that had been ranked as highly important (see Table 2) at time I or II: 'to have help getting over doubts and fears of the future;' to have help preparing for the worst'; and 'to get a
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A.D. Witol et at. / NeuroRehabilitation 7 (1996) 175-187 Table 3 Needs frequently rated as 'not important' Time I
%
Time II
I need to ... spend time with my friends
24
give my opinions daily to others involved in the patient's care
35
give my opinions daily to others involved in the patient's care
22
be told daily what is being done with or for the patient
29
be reassured that it is usual to have strong negative feelings about the patient
21
discuss my feelings about the patient with someone who has gone through the same experience
21
have help from other members of the family in taking care of the patient
20
discuss my feelings about the patient with friends or family
23
discuss my feelings about the patient with friends or family
19
have help keeping house (e.g. shopping, cleaning, etc.)
21
%
I need to ...
Items in italics denote needs common to both time intervals.
Table 4 'Unmet Needs' reported by the majority of family members Time I needs I need to .... have help managing household responsibilities
get a break from problems and responsibilities have my spouse understand how hard it is for me have the patient's employers, co-workers and teacher understand talk with others who have gone through similar experiences
have help getting over doubts and fears of the future
%
Factor
31 39 37 33 53
Instrumental support Instrumental support Emotional support Community support Network Emotional support
30
Emotional support
47
Emotional support
41 40 38 35 34 35 31 31
Emotional support Emotional support Professional support Emotional support Instrumental support Emotional support Emotional support Community support
Time II Needs I need to .... talk with others who have gone through similar experiences have my family understand how hard it is for me have help preparing for the worst have enough resources for myself and family
have help getting over doubts and fears of the future get a break from problems and responsibilities have my spouse understand how hard it is for me be encouraged to ask others to help out have the patient's friends understand his/her problems Items in italics denote common needs at times I and II.
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break from problems and responsibilities' were rated as 'unmet' by at least a third of family members. A majority of the most commonly identified 'unmet' needs were items comprising the Emotional Support scale. In fact, six of the eight needs comprising the Emotional Support scale were commonly identified as unmet at time II. No items from the Involvement with Care or Health Information scales were listed among the most commonly unmet needs. Needs most often identified as 'met' are listed in Table 5. More than two-thirds of respondents identified six needs as 'met' at time I and five at time II. Three needs were common to both time intervals. With one exception at each time period, met needs represented items on the Health Information scale. No items from the Emotional Support, Involvement with care, or Instrumental Support scales were commonly rated as met. 5.5. Analysis of needs by factor scale
For each scale, the proportion of items rated as 'partly met' or 'unmet' by a majority of respondents was calculated (see Fig. 2). These proportions are general indicators of needs which merit
attention from clinicians. Chi-square analysis was used to examine temporal changes in scale scores. The results revealed a significant difference in the proportion of commonly reported unmet needs at time I and time II, X2 (4, N = 38) = 26.00, P < 0.01. Increases were noted for Involvement with Care (time 1=33%; time II = 67%) and Emotional Support (time 1=56%; time II = 78%). A decrease was noted for unmet needs relating to Professional Support (time I = 67%; time II = 33%). The majority of respondents rated all of the Instrumental Support needs as 'partly met' or 'unmet' at both time intervals. Conversely, none of the Health Information needs were rated as 'partly met' or 'unmet' by a majority of the sample. 6. Discussion A review of the family needs literature reveals a wide variety of research methodologies, including differences in needs assessment methods and sample composition. In spite of differences, studies have consistently identified a common subset of important family needs. Needs relating to medical information, financial advice, and emotional and social support have been frequently reported
Table 5 'Met' Needs reported by the majority of family members Time I needs
%
Factor
I need to .... have my questions answered honestly. have the treatment team agree. be assured that best possible medical care is being given. be told about all changes in the patient's medical status see that the healthcare staff respects the patient's needs discuss feelings about the patient with friends or family
86 85 81 75 85 71
Health information Health information Health information Health information Health information Community support
82
80
Health Health Health Health
77
Professional support
Time II needs I need to .... have my questions answered honestly. have the treatment team agree. be assured that best possible medical care is being given to have complete information on substance problems and or treatment have enough treatment resources for the patient Items in italics denote common needs at times I and II.
78 76
information information information information
A.D. Wito/ et a/. / NeuroRehabi/itation 7 (1996) 175-187
185
** Involved w/Care Community Support Network
'** Professional Support Instrumental Support
** Emotional Support Health Information
0
20
40
60
80
100
** p
ELSEVIER
NeuroRehabilitation 7 (1996) 175-187
A longitudinal analysis of family needs following traumatic brain injury Adrienne D. Witol*a, Angelle M. Sander a, Jeffrey S. Kreutzera,b a Department of Physical Medicine
and Rehabilitation, Medical College of Virginia, MCV Box 980542, Richmond, VA 23298-0542, USA bDivision of Neurological Surgery Medical College of Virginia Richmond, VA, USA
Abstract The present investigation assessed 38 family members' perceptions of unmet, partly met and met needs following the brain injury of a relative. Follow-up data was collected at two time intervals averaging 6 and 24 months post-injury. There was no significant difference between the proportion of needs rated as important or very important at time I or II. Highly ranked needs included requests for information, clear and honest explanations from professionals, reassurance, respite care, educational and social activities for the patient, emotional support, financial counseling, and advice about community resources. Relatives rated nearly half of the 40 needs as not met at either time. A significant difference was noted in the proportion of un met/partly met needs within each factor scale at time I and II. A larger number of Emotional Support and Involvement with Care needs were reported as not met at time II. Needs for Professional Support were more frequently reported as met at time II. For both time periods, Health information needs were generally perceived as met while needs relating to Instrumental Support were largely unmet. The findings are discussed in light of implications for treatment and long term adjustment to injury related changes. Keywords: Family needs; Traumatic brain injury
1. Introduction
The prevalence and longevity of neurobehavioral difficulties following traumatic brain injury (TBI) has been well documented [1-3]. Common problems, including memory loss, learning dif-
* Corresponding author. Tel.: + 1 804 8289055; fax: + 1 804 8282378.
ficulties, poor judgment, irritability, and impulsivity can affect the individual who sustained injury, as well as his/her family members for seven or more years postinjury [2,3]. In contrast to persistent behavioral, emotional and cognitive symptoms, interactions with health professionals and rehabilitative programs is relatively short. Instead, families are increasingly responsible for providing care. The long-term implications of TBI can place a severe strain on families' coping skills.
1053-8135/96/$15.00 © 1996 Elsevier Science Ireland Ltd. All rights reserved. PlI S 1053-8135(96) 00190-4
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A.D. Witol et al. / NeuroRehabilitation 7 (J996) 175-187
Relatives may respond by denying personal needs in order to ensure providing their loved ones' care [4-6]. The importance of individual and family needs following the incidence of TBI is highlighted by the presumed relationship between stress, difficulties coping, and long-term psychosocial adjustment. In addition, family functioning exerts positive and/or negative influences upon the individual with a TBI, his or her subsequent recovery and other family members [7]. Kreutzer and colleagues have demonstrated that emotional distress levels in the person with TBI were positively correlated with levels of family distress [8]. Family needs are continually evolving as the individual recovers, transitions to community care, and the family and individual adapt or fail to adapt to changes in social, emotional, and cognitive functioning. Presumably, individuals whose needs are generally met, adapt to injury related difficulties and experience less stress than do those with many unmet needs. With time, needs which were initially easily bypassed may become more pressing, taxing coping skills and affecting subjective well-being. 2. Caregiver and family needs following TBI
Molter [9], was one of the first to systematically investigate family needs of critically ill patients. The authors provided no specific information about patient diagnosis. While all patients had spent at least 3 days on an intensive care unit, it is uncertain if any of the patients had sustained a TBI. Family members (n = 40) were administered a 45-item questionnaire as part of a structured interview. The measure was developed through a literature review and survey of nursing graduate students. No information regarding the validity of the structured interview format was provided. Relatives, of whom 75% were males, were asked to rate needs on a scale of 1-4 (not important to very important), identify each need as met or unmet, identify who typically helped the subject meet the particular need, and state if there were any other pertinent needs not included on the questionnaire. Molter also examined the frequency of met and
unmet needs for items that were described as important or very important. Of this subset, only four needs were described as unmet by a majority of family members: (1) to talk to the doctor at least once a day (90%); (2) to be told about chaplain services (80%); (3) to have a place to be alone while in the hospital (0%); and (4) to have help with financial problems (97%). Leske [10], adapted Molter's structured needs questionnaire by changing the order of item presentation and named the interview the Critical Care Family Needs Inventory (CCFNI). Cronbach's alpha was 0.98, supporting the measure's internal consistency. No other information regarding the construct validity or reliability of the structured interview format was provided. The author administered the CCFNI to 55 family members of 20 critically ill patients. No specific diagnostic criteria was provided. However, the majority of patients were injured due to a motor vehicle accident or assault and there is a high likelihood that at least a subset of patients had incurred a TBI. Family members were asked to rank needs based on importance. In cases where more than one family member participated, the relatives were asked to reach a consensus. Highly ranked needs included: beliefs about hope; honest answers to questions; prognostic information and frequent updates regarding progress and treatment; and feeling that the staff cares about the patient. No information regarding met or unmet needs was provided. Mauss-Clum and Ryan [11], were among the first to specifically address the family needs of persons with neurological disability. The investigators surveyed a small sample (n = 30) of wives and mothers about the effects of brain injury from stroke, progressive neurological disease, and traumatic brain injury. Patients were at least 6months post-injury or disease onset, but no efforts were made to distinguish needs on the basis of diagnosis. The sample was asked to recall experiences during the intensive care phase of their family members' illness, rank a group of needs, and identify what kinds of help were received. No information was provided regarding the questionnaire's construction, reliability or validity.
A.D. Witol et al. / NeuroRehabilitation 7 (1996) 175-187
Among needs identified as important, kind and clear explanations, discussion of realistic expectations, emotional support, financial counseling, and advice about community resources were rated most highly. The authors also provided data regarding the information or assistance relatives received at the time of injury. Approximately 57% of the sample reported having received explanations regarding the patient's condition, while one half reported having received emotional support. Less than 25% of the sample reported having discussions about realistic exceptions, or receiving financial or resource counseling. Finally, 20% of the sample reported having received no information or support at the time of injury. The retrospective nature of data collection likely influenced family members' recollections of important needs and received support. In contrast, Mathis [12] directly surveyed family needs of critically ill patients, with and without TBI. Molter's questionnaire [9], was completed by 26 family members, 11 of whom were relatives of patients with traumatic brain injury. All of the relatives of persons with TBI were female. Cronbach's alpha of 0.94 for questionnaires completed by family members of patients without TBI and 0.90 for those of relatives of persons with TBI provided support for the measure's internal consistency. No information regarding the construct validity or reliability of the structured interview format was provided. Chi-square analyses revealed significant differences between the perceptions of important needs of family members of patients with and without acute brain injury. Highly ranked needs of family members of patients with TBI included needs for medical information, reassurance, close communication, and honesty from professionals. In contrast, to the needs of families of critically ill patients, highly ranked needs for TBI families included information regarding the patient's medical care and feeling accepted by the hospital staff. Needs ranked as 'not important' by the majority of respondents included needs relating to: flexible visiting hours; having company while visiting; talking about negative feelings such as guilt and anger; and being encouraged to cry. Engli and Kirsivali-Farmer [13], replicated
177
Mathis' investigation, finding differing needs between family members of patients with (n = 8) and without (n = 6) acute brain injury. Family members of patients with acute brain injury ranked needs for medical information, frequent visits, reassurance, close communication and honesty from professionals most highly. Only five needs were ranked similarly by both groups. Highly ranked needs unique to family members with TBI related to: prognostic information; having questions answered honestly; reassurance regarding medical care; and visiting frequently. Three quarters of the small sample reported that their top ranked needs had been met by medical staff, chaplains, friends, and/or relatives. Campbell [14] surveyed needs of 14 relatives participating in a support group for family members of patients with brain injury. Commonly reported needs related to: information about injury sequelae, the future, community resources, and finances; having questions answered honestly; help maintaining hope; opportunities to discuss feelings; and participation in community activities. The majority of respondents described the support group as helpful in providing emotional support and meeting informational needs pertaining to community resources, the effects of TBI and financial assistance. Half of the participants judged the group as not helpful in providing information about physical care or helping participants obtain support from religious institutions. Approximately 40% of the participants described the group as not helpful in meeting needs relating to: respite; learning how to reorganize family chores; learning how to adjust to the patient's memory loss; and coping with behavioral changes. While these efforts produced clinically intriguing data, findings were limited by the small sample size and the absence of a reliable and valid measure of family needs. The Family Needs Questionnaire (FNQ) was developed in response to methodological concerns regarding assessment of family needs and the degree to which needs are met following TBI. Needs items were derived from a review of the literature on family reactions to neurological disabilities, adapted from existing questionnaires [9-12,14,15] or based on needs frequently ex-
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pressed during clinical interviews. Studies of family adjustment following brain injury have provided support for the FNQ's validity and clinical utility [16,17]. Kreutzer, Serio, and Bergquist [16], used the FNQ to systematically survey the needs of 119 relatives of patients with TBI. The majority of relatives were female. Time post-injury ranged between 1 week and 8 years. Spearman-Brown split-half reliability coefficient was 0.75, reflecting adequate internal consistency. Rank ordering revealed that needs related to information regarding: neurobehavioral sequelae and behavior management; honest communication; reassurance; and access to professional advice or services were most frequently rated as important. In contrast, needs frequently rated as 'not important' related to help taking care of the patient and managing household responsibilities, being reassured about having strong negative feelings towards the patient, spending time with friends, and having friends and family members' understanding. The authors also provided information relating to the frequency of met and unmet needs for items that were described as important or very important. At least two thirds of the sample described needs relating to information, access to professional support, and talking with friends or family about the patient as met. However, one third of participants described needs including help preparing for the worst, help remaining hopeful, opportunities to speak with persons who have gone through similar problems, and respite as unmet. In addition, perceptions of met needs decreased with time post-injury. In a subsequent investigation, Serio and colleagues [17], as part of a study focusing on prediction of family needs, used the FNQ to assess the needs of 180 family members of persons with TBI between 1 month and 12 years post-injury. Highly ranked needs were related to health information and emotional support. Interestingly, time since injury was not a strong predictor of family needs. 3. Summary
Methodological problems in family needs research limit our ability to draw firm conclusions
about the needs of family members with TBI. Many studies did not provide information regarding patients' diagnoses. The use of small sample sizes with uncertain composition raises questions about representativeness. Finally, information regarding the construct validity or reliability of the assessment measures has rarely been provided. Despite methodological differences, a review of the literature has revealed a striking consensus regarding needs following traumatic brain injury [11-14,16-18]. While needs relating to information, encouragement, and help maintaining hope were consistently reported, the perception of the degree to which needs were met varied. Various theoretical models of family adjustment exist; however, little research has been done examining how family needs change over time. The present investigation was intended to provide information about changes in family needs using an assessment tool with known psychometric properties. A longitudinal design was used to identify changes in the extent to which needs were rated as met and their level of importance. 4. Method 4.1. Subjects
Subjects for the current study were selected from a larger data base of patients who had sustained traumatic brain injury and were referred for outpatient neuropsychological evaluation at a large urban medical center. Relatives were identified by the patient based o~ frequency of contact with the patient. A subset of the relatives was administered the FNQ. Eighty-four subjects had FNQ data available for at least two time periods. Relatives who had completed the FNQ at two time intervals were included in the longitudinal sample (n = 38). At initial follow-up, the average time elapsed since the patient's injury was 27.92 weeks (SD = 3.32 weeks). An average of 87.36 weeks (SD = 43.68) had elapsed since injury at second follow-up. A series of t-test analyses were conducted to compare the longitudinal sample to the original database sample in terms of patients' age at injury and injury severity. No differences were found between the groups for
A.D. Witol et al. / NeuroRehabilitation 7 (1996) 175-187
age, duration of unconsciousness, or Glasgow Coma Scale scores at the time of hospital admission (P > 0.05). 4.2. Relatives
The mean age of family members was 39.19 (range = 18-67, SD = 11.50). The majority were Caucasian (76%) and female (81%). AfricanAmericans comprised 21 % of the sample, and the remain~~r were Hispanic. Regarding relationship to the lDJured person, the majority of the sample were spouses (61%), parents comprised 28% of the sample and the remainder were siblings (2%), offspring (4%), girl/boyfriend (2%), or some other close relation (2%). Educational backgrounds varied: 32% did not complete high school; 11 % had graduated from high school; 21 % had attended some college; and 16% of participants had earned college undergraduate or graduate degrees. The majority of the sample reported a total household income of less than $30000 at both time I and II (59% and 63%, respectively). The majority of relatives resided with patients at initial (87%) and later (89%) assessments. The mean days each week spent with the patient at time I was 6.50 (SD = 1.70) and time II was 6.54 (SD = 1.57). Respondents at time I typically reported spending 8 h or less caring for, supervising, or helping the patient each day. Slightly more than half the sample (54%) spent 4 h or less caring for the patient at time II, while approximately one-third spent 9 h or more caring for the patient. 4.3. Patients
The majority of patients were male (74%) and Caucasian (76%). The remainder of the patients were African-American (24%). Motor vehicle acci~ents were the primary cause of injury (71 %), With a lesser number of persons injured by falls (10%), assault (8%), and firearms (8%). The average age at the time of injury was 33.1 (range = 17-57; SD = 10.80). Information about duration of unconsciousness was available for 92% of the sample (M = 7.93 days; SD = 21.95). Admission
179
GCS scores were available for 55% of the sample (M = 7.0; SD = 3.08). 4.4. Instruments
The FNQ is a self-report measure that asks caregivers to rate 40 needs along two dimensions. Level of importance is rated as 'not important', 'somewhat important', 'important', and 'very important'. Respondents can also designate needs as 'not applicable'. Each need is also rated as 'met' 'unmet', or 'partly met'. A principal componen~ factor analysis based on the FNQ responses of 178 family members revealed 37 items comprising six factors: (1) health information; (2) emotional support; (3) instrumental support; (4) professional support; (5) community support network' and (6) . lDvolvement with care [19]. Acceptable ' internal reliability for scales representing each factor was indicated by Cronbach's alpha values ranging from 0.78 (nvolvement with care) to 0.89 (health information). Descriptions of scale content are pro~ided in Table 1, and examples of items comprismg each scale are provided in Tables 3, 4 and 5.
4.5. Procedure Patients were referred for evaluation at an outpatient rehabilitation clinic affiliated with a university based, level I trauma center. Relatives were asked to accompany the patient to their evaluation. The FNQ was mailed to relatives for completion before the patient's appointment. On arrival for the evaluation, questionnaires were reviewed for accuracy and completeness. Trained staff members reviewed the questionnaires for missing information and requested clarification when necessary. 5. Results The first set of data analyses focused on need importance ratings. Importance was defined as a rating of 'important' or 'very important'. The second set focused on analysis of unmet needs.
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Table 1 Description of FNQ scale content Factor
Needs scale content description
Items
Health information
Information about the patient's medical care, physical condition, cognitive status and psychosocial functioning
10
Emotional support
Family member receives understanding, reassurance, and nurturance from family, friends, and others in the community
8
Instrumental support
Respite and practical assistance in meeting responsibilities are available. Relatives also have opportunities to fulfill personal, physical, and social needs
6
Professional support
Relatives have long-term access to training and information on how to best help manage the patient's difficulties
6
Community support network
Important members of the patient's peer group, including those in evaluative positions, understand injury related difficulties and are supportive of the rehabilitation process.
5
Involvement with care
Family has been integrated into the patient's treatment team; their opinions are solicited and they are kept informed of the rehabilitation process
3
5.1. Analysis of importance ratings by item and percentage score
To help in ranking needs, the proportion of respondents who rated each item as important was determined. One third of the needs (17) were rated as important by at least 90% of relatives at either time interval. Six needs were rated as important by the entire sample at time 1. Two of these needs were ranked as important by 100% of respondents at both time intervals, 'I need to be reassured that the best possible medical care is being given', and 'I need to have my questions answered honestly'. At second follow-up, all needs were rated as important by a majority of family members. Thirteen of the 17 items were rated as important at both time intervals (see Table 2). Only one need was rated as unimportant by a majority of family members, 'to give my opinion daily to others involved in the patient's care, rehabilitation, or education'. To characterize individual perceptions of how important the 40 needs were, an Importance Percentage score was calculated for each respondent. To compute the Importance Percentage score, the total number of items rated as 'important' or 'very important' was calculated and divided by 40.
A matched pairs t-test revealed no difference in the mean Importance Percentage score at time I (71 %) and time II (67%) (p > 0.05). 5.2. Analysis of importance ratings based on scale scores at time I and II
Scale scores for each respondent were calculated by summing the scores for items within the scale and dividing by the number of completed items. Missing items and those rated as 'not applicable' were not included in the calculations. Mean scale scores for both time intervals are presented in Fig. 1. Mean differences ranged from - 0.07 to 0.43. Differences for scales including Professional Support (- 0.07), Involvement with Care ( - 0.07), and Health Information were negligible (+ 0.03). The largest difference was noted for Instrumental Support where a 15% increase in the importance rating was noted between time I (M = 2.82) and time II (M = 3.25). 5.3. Analysis of unimportant needs at time I and II
To gain a sense of areas of support judged least important, the items commonly rated as 'not important' were examined (see Table 3). At time I,
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181
Table 2 Top ten important needs postinjury Time I
%
I need to ...
Time II
%
I need to ...
be told of all changes in the patient's medical status
100
be assured that the best possible medical care is given to the patient
100
have information on thinking problems
100
have my questions answered honestly
100
have questions answered honestly
100
get explanations I can understand
97
have information on TBI medical care
100
have information on TBI medical care
97
have information on the patient's physical problems
100
have information on the patient's physical problems
97
be assured that the best possible medical care is given to the patient
100
be shown what to do when the patient is upset or acting strange
97
have a professional to tum to for advice or services when the patient needs help
97
have information on the patient's rehabilitative or educational progress
97
have enough resources for the patient
97
get a break from my problems and responsibilities
be shown what to do when the patient is upset or acting strange
97
have a professional to tum to for advice or services when the patient needs help
94
be shown what to do when the patient wishes
94
have information on the patient's thinking problems
94
have staff members agree about treatment plans
94
be told why the patient acts different or strange
94
be told how long problems are expected to last
94
be told how long problems are expected to last
94
have information on the patient's rehabilitative or educational progress
94
know my opinions are used in treatment planning
93
have enough resources for myself and myfamily
93
be told of changes in the patient's medicial status
93
get explanations I can understand
92
have enough resources for the patient
93
be told why the patient acts different or strange
91
have my family understand the patient's problems
92
have help remaining hopeful
91
have help preparing for the worst
91
Items in italics denote needs unique to time period I or II.
spending time with friends was most often rated (24%) as unimportant. At time II, giving opinions to professionals was most often rated (35%) as unimportant. At both time intervals, giving opinions to professionals and discussing feelings with others were among the five needs most frequently rated as unimportant. No items from the Professional Support or Health Information scales were commonly rated as unimportant.
5.4. Analysis of met and unmet needs by item and percentage
Methods for calculating the proportion of 'met', 'partly met', and 'unmet' needs for each scale were adopted from Kreutzer et al. [16]. For each respondent, calculations only included needs described as 'important' or 'very important'. For
A.D. WilOl et al. / NeuroRehabilitation 7 (1996) 175-187
182
Involvement with Care
Community Support Network
Professional Support
Instrumental Support
Emotional Support
Health Information
2
1.5
2.5
3
3.5
4
Mean Scale Score
o Time I
• Time II
Fig. 1. Mean Importance Factor Scale Scores
example, the Met Needs percentage was calculated by dividing the number of needs rated as 'met' by the total number rated as 'important' or 'very important'. There was little indication of overall changes in the proportion of met and unmet needs over time. Approximately one half of all needs were characterized as 'unmet' at time I (53%) and time II (49%). Nearly one third were described as 'partly met' at either time interval (I = 31 %; II = 28%). A relatively small number of needs were characterized as 'met' (I = 13%; II = 20%). Differences in the need indices at time I and II were examined using matched pairs t-tests. No signifi-
cant differences were found for unmet, partly met, or met need percentages (P> 0.05). To help in delineating priorities for service delivery, needs most often rated as 'unmet', were also identified at each time interval (see Table 4). At least 30% of the sample identified six needs as 'unmet' at time I and nine needs at time II. The need 'to talk with others who have gone through similar experiences' was most often rated as 'unmet' at both time intervals. In addition, three of the needs that had been ranked as highly important (see Table 2) at time I or II: 'to have help getting over doubts and fears of the future;' to have help preparing for the worst'; and 'to get a
183
A.D. Witol et at. / NeuroRehabilitation 7 (1996) 175-187 Table 3 Needs frequently rated as 'not important' Time I
%
Time II
I need to ... spend time with my friends
24
give my opinions daily to others involved in the patient's care
35
give my opinions daily to others involved in the patient's care
22
be told daily what is being done with or for the patient
29
be reassured that it is usual to have strong negative feelings about the patient
21
discuss my feelings about the patient with someone who has gone through the same experience
21
have help from other members of the family in taking care of the patient
20
discuss my feelings about the patient with friends or family
23
discuss my feelings about the patient with friends or family
19
have help keeping house (e.g. shopping, cleaning, etc.)
21
%
I need to ...
Items in italics denote needs common to both time intervals.
Table 4 'Unmet Needs' reported by the majority of family members Time I needs I need to .... have help managing household responsibilities
get a break from problems and responsibilities have my spouse understand how hard it is for me have the patient's employers, co-workers and teacher understand talk with others who have gone through similar experiences
have help getting over doubts and fears of the future
%
Factor
31 39 37 33 53
Instrumental support Instrumental support Emotional support Community support Network Emotional support
30
Emotional support
47
Emotional support
41 40 38 35 34 35 31 31
Emotional support Emotional support Professional support Emotional support Instrumental support Emotional support Emotional support Community support
Time II Needs I need to .... talk with others who have gone through similar experiences have my family understand how hard it is for me have help preparing for the worst have enough resources for myself and family
have help getting over doubts and fears of the future get a break from problems and responsibilities have my spouse understand how hard it is for me be encouraged to ask others to help out have the patient's friends understand his/her problems Items in italics denote common needs at times I and II.
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break from problems and responsibilities' were rated as 'unmet' by at least a third of family members. A majority of the most commonly identified 'unmet' needs were items comprising the Emotional Support scale. In fact, six of the eight needs comprising the Emotional Support scale were commonly identified as unmet at time II. No items from the Involvement with Care or Health Information scales were listed among the most commonly unmet needs. Needs most often identified as 'met' are listed in Table 5. More than two-thirds of respondents identified six needs as 'met' at time I and five at time II. Three needs were common to both time intervals. With one exception at each time period, met needs represented items on the Health Information scale. No items from the Emotional Support, Involvement with care, or Instrumental Support scales were commonly rated as met. 5.5. Analysis of needs by factor scale
For each scale, the proportion of items rated as 'partly met' or 'unmet' by a majority of respondents was calculated (see Fig. 2). These proportions are general indicators of needs which merit
attention from clinicians. Chi-square analysis was used to examine temporal changes in scale scores. The results revealed a significant difference in the proportion of commonly reported unmet needs at time I and time II, X2 (4, N = 38) = 26.00, P < 0.01. Increases were noted for Involvement with Care (time 1=33%; time II = 67%) and Emotional Support (time 1=56%; time II = 78%). A decrease was noted for unmet needs relating to Professional Support (time I = 67%; time II = 33%). The majority of respondents rated all of the Instrumental Support needs as 'partly met' or 'unmet' at both time intervals. Conversely, none of the Health Information needs were rated as 'partly met' or 'unmet' by a majority of the sample. 6. Discussion A review of the family needs literature reveals a wide variety of research methodologies, including differences in needs assessment methods and sample composition. In spite of differences, studies have consistently identified a common subset of important family needs. Needs relating to medical information, financial advice, and emotional and social support have been frequently reported
Table 5 'Met' Needs reported by the majority of family members Time I needs
%
Factor
I need to .... have my questions answered honestly. have the treatment team agree. be assured that best possible medical care is being given. be told about all changes in the patient's medical status see that the healthcare staff respects the patient's needs discuss feelings about the patient with friends or family
86 85 81 75 85 71
Health information Health information Health information Health information Health information Community support
82
80
Health Health Health Health
77
Professional support
Time II needs I need to .... have my questions answered honestly. have the treatment team agree. be assured that best possible medical care is being given to have complete information on substance problems and or treatment have enough treatment resources for the patient Items in italics denote common needs at times I and II.
78 76
information information information information
A.D. Wito/ et a/. / NeuroRehabi/itation 7 (1996) 175-187
185
** Involved w/Care Community Support Network
'** Professional Support Instrumental Support
** Emotional Support Health Information
0
20
40
60
80
100
** p
