Family needs after brain injury: A cross cultural study

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NeuroRehabilitation 36 (2015) 203–214 DOI:10.3233/NRE-151208 IOS Press

Family needs after brain injury: A cross cultural study Anne Norupa , Paul B. Perrinb , Gustavo Cuberos-Urbanoi , Audny Anked,e , Nada Andelicf,h , Sarah T. Doyleb , Maria Cristina Quijanog , Alfonso Caracuelc , Dulce Mar´ıa D´ıaz Sosaj , Irma Guadalupe Espinosa Jovek and Juan Carlos Arango-Lasprillal,∗ a RUBRIC

Research Unit on Brain Injury Rehabilitation Copenhagen, Department of Neurorehabilitation, Traumatic Brain Injury Unit, Copenhagen University Hospital, Glostrup, Denmark b Department of Psychology, Virginia Commonwealth University, Richmond, VA, USA c Department of Developmental and Educational Psychology-Mind, Brain and Behavior Research Center, University of Granada, Granada, Spain d Department of Rehabilitation, University Hospital of North Norway, Tromso, Norway e Faculty of Health Sciences, Department of Clinical Medicine, University Tromso, Norway f Department of Physical Medicine and Rehabilitation, Oslo University Hospital, Ulleval, Oslo, Norway g Javeriana University, Cali, Colombia h Institute of Health and Society, CHARM (Research Centre for Habilitation and Rehabilitation Models and Services), Faculty of Medicine, University of Oslo, Oslo, Norway i Department of Personality, Assessment and Psychological Treatment, University of Granada, Granada, Spain j Department of Psychology, Universidad Nacional Aut´ onoma de M´exico, M´exico City, M´exico k Instituto Nacional de Rehabilitaci´ on de M´exico, M´exico City, M´exico l IKERBASQUE, Basque Foundation for Science, University of Deusto, Bilbao, Spain Abstract. OBJECTIVE: The objective of this study was to explore differences by country in the importance of family needs after traumatic brain injury (TBI), as well as differences in met/unmet needs. METHOD: Two hundred and seventy-one family members of an individual with TBI in Mexico, Colombia, Spain, Denmark, and Norway completed the Family Needs Questionnaire. RESULTS: Eight of the ten needs rated as most important globally were from the Health Information subscale. Importance ratings on the Health Information, Professional Support, and Involvement With Care subscales were similar across countries, but Mexican family members rated Instrumental Support needs as less important than Colombian, Spanish, and Danish family members, and also rated their Community Support needs as less important than Danish and Spanish family members. Mexican family member’s rated emotional support needs as less important than Colombian, Spanish, and Danish family members. Globally, the needs rated as most often met were from the Health Information subscale, and the most unmet needs were from the Emotional Support subscale. CONCLUSION: Despite some similarities across countries several differences were identified, and these can help professionals to provide more culturally appropriate rehabilitation services for family members in order to improve informal care for TBI. Keywords: Traumatic brain injury, caregivers, family needs, cultural differences, global regions

1. Introduction ∗ Address

for correspondence: Juan Carlos Arango-Lasprilla, Ph.D, IKERBASQUE Research Professor, Department of Psychology, University of Deusto, IKERBASQUE, Basque Foundation for Science, Bilbao, Spain. Tel.: +34 9441390 03/3261; E-mail: [email protected].

Traumatic Brain Injury (TBI) is an important public health issue and one of the leading causes of death and disability around the world (De Silva et al., 2009) as well as it is the primary cause of disability in people

1053-8135/15/$35.00 © 2015 – IOS Press and the authors. All rights reserved

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under age 40 (Fleminger & Ponsford, 2005). Research over the past decade has produced several international epidemiological studies highlighting trends of TBI hospitalizations, incidence, and mortality rate (Andelic, 2012; Andelic et al., 2012a; Engberg, Liebach, & Nordenbo, 2006a; Engberg & Teasdale, 2007; Javouhey, Guerin, & Chiron, 2006; Langlois, RutlandBrown, & Wald, 2006). The collection of country-level data is critical as it provides insight into the global perspective on TBI and emphasizes the potential differences in outcomes after injury between developing and developed nations (Hyder, Wunderlich, Puvanachandra, Gururaj, & Kobusingye, 2007). A wide range of consequences occur after TBI, including psychosocial, emotional, cognitive, physical, and financial changes in the lives of both individuals sustaining the injury and their family members (Arango-Lasprilla et al., 2010a; Dikmen, Machamer, & Temkin, 2001; Draper, Ponsford, & Schonberger, 2007; Gamboa, Jr., Holland, Tierney, & Gibson, 2006; McCarthy et al., 2006; Sigurdardottir, Andelic, Roe, & Schanke, 2009). Individuals with TBI often exhibit impaired executive functioning, as well as difficulties with attention, information processing, memory, learning, and linguistics (Greenspan, Wrigley, Kresnow, Branche-Dorsey, & Fine, 1996; Lehtonen et al., 2005; Mathias & Wheaton, 2007; Vakil, 2005). Physical complications may include pressure ulcers, bladder and bowel problems, spasticity, and chronic pain (Langlois et al., 2006; Safaz, Alaca, Yasar, Tok, & Yilmaz, 2008). Psychosocial consequences to individuals with TBI include decreased life satisfaction and lower perceived social support (Stalnacke, 2007) that may lead to substance abuse, anxiety, and depression (Anson & Ponsford, 2006; Kreutzer, Seel, & Gourley, 2001; Ponsford, Whelan-Goodinson, & Bahar-Fuchs, 2007). Finally, decreased employment and increased medical expenses are common after TBI (Kreutzer, Seel, & Gourley, 2001; Arango-Lasprilla et al., 2008, Forslund et al., 2013). These consequences of TBI can be life-altering and result in the loss of functional independence, making it necessary for a caregiver to assist with daily activities, a role commonly fulfilled by family members (Arango-Lasprilla et al., 2009; Kreutzer et al., 2001). In part as a result of extensive caregiving duties, TBI caregivers exhibit high rates of psychological distress, anxiety, and depression, as well as decreased quality of life (Forslund, Roe, Sigurdardottir, & Andelic, 2013; Marsh, Kersel, Havill, & Sleigh, 1998b; Marsh, Kersel, Havill, & Sleigh, 1998a; Norup, Siert, & Mortensen,

2010; Norup, 2013). Family caregivers also report reduced personal independence and reduced satisfaction with life (Kolakowsky-Hayner, Kreutzer, & Miner, 2000; Moules & Chandler, 1999). This may be due to the fact that caregivers experience an altered life situation with decreases in personal time in combination with the challenging job of managing behavioral changes, physical limitations, cognitive deficits, and decreased functionality in the family member with TBI (Kreutzer, Serio, & Bergquist, 1994). Research suggests these consequences persisting for years after injury can have a long term impact on families (Koskinen, 1998; Kreutzer et al., 1994). Given the consequences of TBI on family members, it is critical to recognize the needs of the family that may emerge in the context of providing care. Kreutzer et al. (1994) identified TBI caregiver needs in an American population and the study found that most important needs included information on the exact problems of the patient, access to someone who can answer questions about patient care in a truthful manner, access to professionals’ advice to ensure the best care for the patient and respect from all health professionals. Similarly in a American sample, Leith et al. (2004) identified five major family needs in TBI care as reported by caregivers: (1) a statewide agency delivery system and support services to facilitate appropriate placement and treatment; (2) facilities and outlets for information and education on TBI; (3) support and encouragement given to individual with TBI and caregivers from health professionals; (4) aid in creating an enthusiastic and positive environment for TBI patients and families; and (5) emotional support and enhanced community reintegration after injury(Leith, Phillips, & Sample, 2004). Previous research also indicates that caregiver needs differ according to phase of treatment and time since injury (Rotondi, Sinkule, Balzer, Harris, & Moldovan, 2007). In addition to highlighting important family needs in a sample of TBI caregivers from the United States, Kreutzer et al. (1994) identified the following needs as most likely to be unmet: not having a friend to relate to who has gone through similar events, not having anyone to aid in conquering worries or preparing for worst-case scenarios, an inability to escape responsibilities, not knowing how to handle family members in stressful times, not being understood by family members who are not providing care, and not having help in completing household duties. Rotondi et al. (2007) similarly identified the following unmet needs: inadequate instruction for patient care, uncertainty of how to

A. Norup et al. / Family needs after brain injury

place the person with TBI into an optimal rehabilitation program, and being unknowledgeable of the ideal way to obtain functional recovery after TBI. Finally, Arango-Lasprilla et al. (2010) reported most frequently unmet needs in a sample of Latin American TBI caregivers to be emotional support, instrumental support, and professional support. Despite this work, the majority of research on TBI caregiver needs has been conducted in the United States, but it is likely caregiving experiences and needs may vary by global region. For example, in comparison with U.S. populations, TBI caregivers in Latin America are more likely to have unmet needs in emotional support, instrumental support, and professional support (Arango-Lasprilla et al., 2010b), and in contrast it could be expected that Scandinavian caregivers would report less needs as unmet due to the fairly extensive and tax-based health care system. While recent work in Scandinavia (Borg et al., 2011; Engberg, Liebach, & Nordenbo, 2006b; Norup, Welling, Qvist, Siert, & Mortensen, 2012) has explored several aspects of TBI such as post-TBI outcomes, the rehabilitation process, and mental health in relatives of individuals with TBI, no research has been conducted on family needs among TBI caregivers. Because of this fairly substantial omission in the research literature, the purpose of the current study was to explore differences by country in family needs using the Family Needs Questionnaire

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(FNQ (Kreutzer et al., 1994)) in Latin America (Mexico, Colombia), Spain, and Scandinavia (Denmark, Norway). The study aimed at investigating differences in the rating of importance of family needs after TBI, and differences in met vs. unmet needs. It was hypothesized that the family needs in Scandinavian countries may differ from others due to “a long tradition of organization and resource allocation within the Scandinavian healthcare systems for the comprehensive rehabilitation of patients with long-term disabilities” (Borg et al., 2011).

2. Method 2.1. Participants The sample included 271 caregivers of an individual with TBI from five different countries: Mexico, Colombia, Spain, Norway and Denmark. A caregiver was defined as a family member responsible for actively providing day-to-day care for a person with TBI, and whowasfamiliarwiththeindividual’smedicalandsocial status (a more detailed description for each country can be seen under Procedure). The sample was primarily female (76.4%), and most were spouses (33.2%) or parents (39.9%) of the individual with TBI. The mean age of the family members was 49.34 years (SD = 13.91). Most

Table 1 Sample characteristics Columbia Family member, n 29 Gender, female, n (%) 19 (65.5%) Relationship n (%) Spouse 8 (27.6%) Parent 4 (13.8%) Brother/sister 10 (34.5%) Son/daughter 3 (10.3%) Other 4 (13.8%) Response rate 82.9% Individual w/ TBI Age 34.45 (11.05) Time since injury, months 33.55 (57.25) Severity of injury Moderate to severe TBI classified by GCS at admission.

Type of hospital

Level 4 university Hospital of Valle, Cali.

Mexico

Spain

Norway

Denmark

67 55 (82.1%)

47 36 (76.6%)

86 65 (75.6%)

42 32 (76.2%)

18 (26.9%) 35 (52.2%) 10 (14.7%) 2 (3.0%) 2 (3.0%) 40.5%

23 (48.9%) 17 (36.2%) 1 (2.1%) 6 (12.8%) 0 34.0%

37 (43.0%) 35 (40.7%) 8 (9.3%) 5 (5.8%) 1 (1.2%) 69.7%

16 (38.1%) 17 (40.0%) 2 (4.8%) 5 (11.9%) 2 (4.8%) 60.8%

38.18 (13.85) 42.69 (47.39) Moderate to severe TBI classified by GCS at admission.

49.26 (11.58) 34.37 (48.87) Moderate to severe TBI classified by GCS at admission.

43.57 (20.15) 64.52 (15.77) Moderate to severe brain injury classified by GCS ≤8 at admission.

Instituto Nacional de Rehabilitaci´on de M´exico, Rehabilitation hospital, M´exico City.

Virgen de las Nieves, Rehabilitation hospital, Granada.

39.69 (18.83) 14.55 (2.03) Moderate to severe TBI with GCS score ≤8 during the first 24 hours post-injury. One of the four national Trauma Referral Centers.

Sub-acute rehabilitation, TBI-unit, Copenhagen.

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of the patients had acquired a moderate or severe TBI, although the Danish sample also included some patients with non-traumatic brain injury. The mean age of the patients was 41.02 years (SD = 16.59). All patients had been discharged from the hospital at the time of the investigation, and time since injury was mean 34.72 months (SD = 40.19). Characteristics of the family members, the individuals with TBI, response rates etc. for the individual countries appear in Table 1. 2.2. Measures The primary outcome measure was the FNQ (Kreutzer, 1994), and this investigation used the revised scoring procedure with 37 items addressing diverse psychosocial needs in close family members in the chronic phase after brain injury. A factor analysis study revealed six subscales within the FNQ: Health Information, Emotional Support, Instrumental Support, Professional Support, Community Support Network and Involvement with Care (Serio, Kreutzer, & Witol, 1997). Family members provide two different ratings for each of the 37 listed needs. First, the importance of the specific need is rated along a four-point Likert scale, where 1 is ‘not important’ and 4 is ‘very important’ (the importance part was not completed by the Norwegian participants). The specific need is also rated to indicate the extent to which the need has been met, where ‘no’ equals a score of 0, ‘partly’ equals 1, and ‘yes’ is scored as 2. FNQ subscale scores were only calculated for a participant when the participant had complete item data on that subscale. 2.3. Procedure Spain. Participants were caregivers retrospectively contacted through the official registry of patients with a diagnosis of TBI, who survived and were discharged home after admission to an inpatient rehabilitation service during the previous year. The final sample consisted of 47 caregivers out of 140 contacted, and the rest could not be reached or did not return the questionnaire. The final sample consisted of 47 caregivers out of 140 contacted giving a response rate of 34%. The rest could not be reached or did not return the questionnaire sent to them by mail after a phone call to explain the instructions. Denmark. Participants were family members of patients with severe brain injury, who had received inpatient sub-acute rehabilitation and had participated in a study described elsewhere (see Norup, Snipes, Siert,

Mortensen, et al., 2013). Of the original sample of 94 pairs of patients and relatives, 74 relatives were contacted retrospectively and asked to participate in the study (relatives of patients who had passed away or left the country were not contacted again). Of the 74 relatives asked to participate 45 completed and returned the questionnaire. Three of the questionnaires were completed inadequately, and these were excluded. Consequently, the final sample included in the analyses comprised 42 relatives. Of the remainders, two relatives did not wish to participate in further studies; two did not feel that the questionnaire described their situation; one relative had been diagnosed with Alzheimer’s Disease and could not complete the questionnaire; one relative did not have any contact with the patient; and the remaining 23 relatives could not be reached or did not return the questionnaire. Norway. Participants were family members of patients with severe traumatic brain injury that were included in a prospective population-based multicenter cohort study covering all regions of Norway. Patients transferred to one of four major Trauma Referral Centers during 2009 and 2010 with an unsedated GCS score ≤8 during the first 24 hours post-injury were included. For more detailed information about inclusion procedure see Andelic et al. (2012a). Among the 163 participating patients at one-year follow-up, 132 caregivers were available for inclusion after receiving consent from the patients. Of these 132 relatives asked to participate 92 returned the questionnaire. Eighty-six caregivers had completed the family needs questionnaire adequately and were finally included in this study. Colombia. Family members of patients, who had been received rehabilitation, were recruited for the study. The inclusion and exclusion criteria have been described thoroughly elsewhere (Arango-Lasprilla et al., 2010b). Patients were called at home and staff spoke with the primary caregiver about the study. Twenty-nine of the 35 caregivers, who met the criteria, agreed to meet with the research team at the hospital of Valle and participate in the study. Twenty-nine of the 35 caregivers, who met the criteria, agreed to meet with the research team at the hospital and participate in the study resulting in a response rate of 82.9%. Mexico. The sample consisted of 68 caregivers of individuals with TBI treated a rehabilitation hospital, Mexico City. Caregivers were included if they met the criteria described in a previous publication (Leibach et al., 2014). A review of medical records was conducted to identify individuals with TBI who had been treated between January of 2005 and December of 2010.

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This review generated a list of 246 individuals with TBI, all of whom were contacted by the research team. Based on the inclusion criteria outlined above, 78 of the 246 individuals with TBI were excluded. Of those contacted, 43 families refused to participate for various reasons including: not having the time to participate (19), not having the financial resources to make the trip to the center (14), and not feeling the study was necessary for their family (7). Three families reported the individuals with TBI had passed away. Fifty-seven families did not arrive to their study appointment, resulting in a final sample of 68 caregivers. 2.4. Statistical analyses Two parallel sets of analyses were conducted, one to examine participants’ ratings of the importance of family needs and the other to examine participants’ ratings of the extent to which family needs were met. In both sets of analyses, means and standard deviations were calculated for each need, and the needs were ranked according to overall endorsement. Two multivariate analyses of covariance (MANCOVAs) adjusting for time since injury were then conducted in which the independent variable was participant country and the six dependent variables were the six subscales of the FNQ. If an omnibus effect was found, follow-up ANCOVAs were then run, also adjusting for time since injury, in which the independent variable was participant country and the dependent variable was each of the FNQ subscales. These ANCOVAs used least

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significant difference contrasts in order to pinpoint the precise differences among countries in family needs by country. Additionally, all ANCOVAs included η2 (partial eta-squared; calculated by Sum of SquaresEffect / [Sum of SquaresEffect +Sum of SquaresError ]) estimates of effect size. Effect sizes will be quantified as a η2 of 0.01 = small, 0.06 = medium, and 0.14 = large. 3. Results 3.1. Importance ratings The mean importance rating for each need was ranked in the sample consisting of the Spanish, Danish, Columbian, and Mexican responses. The Norwegian sample did not complete the importance rating, consequently these responses are not included in the importance ranking. The importance ratings are presented in Table 2. Eight of the ten needs identified as being most important were from the Health Information scale, and the last two needs with high ratings were from the Professional Support and Community Support scale. Table 3 lists the lowest ranked needs in the sample, and the Emotional and Instrumental Support scales had the lowest importance ratings. A MANCOVA, controlling for time since injury, examined differences by country in family members’ mean importance ratings on the six FNQ subscales. For the six importance ratings of family needs entered as dependent variables into the MANCOVA, a statistically

Table 2 Needs rated as being most important needs in the total sample* (n = 184) Rank

Need

Mean (SD)

FNQ scale

1.

To have enough resources for the patient (e.g., rehabilitation programs, physical therapy, counseling, job counseling) To have complete information on the patient’s physical problems (e.g., weakness, headaches, dizziness, problems with vision or walking) To have a professional to turn to for advice or services when the patient needs help To have complete information on the patient’s problems in thinking (e.g., confusion, memory, or communication) To have my questions answered honestly To have information on the patient’s rehabilitative or educational progress To be told about all changes in the patient’s medical status To be assured that the best possible medical care is being given to the patient To have complete information on the medical care of traumatic injuries (e.g. medication, injections, surgery) To have explanations from professionals given in terms that I can understand

3.79 (0.56)

Professional Support

3.77 (0.53)

Health Information

3.77 (0.55)

Community Support Network

3.77 (0.53)

Health Information

3.71 (0.62) 3.70 (0.62)

Health Information Health Information

3.69 (0.69) 3.67 (0.66)

Health Information Health Information

3.66 (0.68)

Health Information

3.64 (0.68)

Health Information

2.

3. 4. 5. 6. 7. 8. 9. 10.

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A. Norup et al. / Family needs after brain injury Table 3 Needs rated as being least important needs in the total sample* (n = 184)

Rank

Need

Mean (SD)

FNQ scale

1. 2.

To spend time with my friends To be reassured that it is usual to have strong negative feelings about the patient To be encouraged to ask others to help out To get a break from my problems and responsibilities Help preparing for the worst To have help keeping the house (e.g. shopping, cleaning, cooking etc.) To have complete information about drug and alcohol problems and treatment To have the patient’s friends understand his/hers problems Help in remaining hopeful about the patient’s future To discuss my feelings about the patient with somebody who has gone through the same

2.60 (1.19) 2.61 (1.21)

Instrumental Support Emotional Support

2.66 (1.22) 2.78 (1.17) 2.81 (1.21) 2.88 (1.14)

Emotional Support Instrumental Support Emotional Support Instrumental Support

2.88 (1.19)

Health Information

3.02 (1.10) 3.06 (1.09) 3.07 (0.97)

Community Support Network Emotional Support Emotional Support

3. 4. 5. 6. 7. 8. 9. 10.

*The total sample here does not include the Norwegian sample, as they did not complete ratings of importance. FNQ sub-scales importance ratings are scored from 1 to 4 on a Likert scale: 1 refers to ‘Not important’; and 4 refers to ‘Very important’. Table 4 Adjusted means (and standard error) of importance ratings of family needs Need Health Information Emotional support Instrumental support Community support Professional support Involvement with care

Colombia 3.634 (0.089) 3.249 (0.127)a 3.237 (0.119)a 3.283 (0.124) 3.581 (0.106) 3.439 (0.117)

Mexico 3.643 (0.059) 2.606 (0.084)abc 2.836 (0.079)abc 3.130 (.082)ab 3.573 (0.070) 3.333 (0.077)

Spain

Denmark

F

p-value

η2

3.689 (0.072) 3.359 (0.103)b 3.146 (0.096)b 3.500 (0.100)a 3.682 (0.086) 3.343 (0.094)

3.453 (0.088) 2.982 (0.126)c 3.055 (0.118)c 3.373 (0.123)b 3.409 (0.105) 3.209 (0.116)

1.028 13.456 4.055 3.199 0.831 1.272

0.382 0.000 0.008 0.025 0.479 0.286

0.018 0.188 0.066 0.052 0.014 0.021

Note. Country means for a single FNQ sub-scale that share the same subscript letter were statistically different by country at p < 0.05 or lower. Mean importance ratings for FNQ sub-scales: 1 refers to ‘Not important’; 2 refers to ‘Slightly important; 3 refers to ‘Important’, and 4 refers to ‘Very important’.

significant Box-M test for homogeneity of the variance-covariance matrices across design cells, BoxM = 157.80, F(63, 36295.42) = 2.32, p < 0.001, and six out of six statistically significant Levene’s tests (all ps < 0.031) did not provide multivariate or univariate support for the homogeneity of variance assumption, suggesting that a more conservative estimate of the F-statistic should be used, such as Pillai’s Trace. The omnibus MANCOVA revealed a statistically significant effect for country, Pillai’s Trace = 0.352, F(18, 489) = 3.61, p < 0.001, η2 = 0.117. As a result, six follow-up univariate ANCOVAs adjusted for time since injury, and least significant difference contrasts were run to identify which countries differed on which specific family needs. The results of these ANCOVAs, as well as adjusted means by country, appear in Table 4 (the Norwegian sample did not complete the importance ratings and were omitted). Mexican family members rated emotional support needs as less important than Colombian, Spanish, and Danish family members, with the effect size reaching a large-sized effect. Similarly, Mexican family members

rated instrumental support needs as less important than the other three groups, with the effect size reaching a medium-sized effect. And finally, Mexican family members rated community support needs as less important than Spanish and Danish family members, a small-size effect. 3.2. Met ratings Table 5 shows the needs most often met in the total sample, and eight of these needs were from the Health Information scale. Two needs from the Community Support subscale were also rated among the ten needs most often met in the total sample. Table 6 shows the needs most often unmet in the total sample, and most were from the Emotional support subscale. A second MANCOVA, again controlling for time since injury, examined differences by country in family members’ mean met ratings on the six FNQ subscales. For the six met ratings of family needs in the MANCOVA, a statistically significant Box-M test,

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Table 5 Rating of needs being met in the total sample (n = 271) Rank 1. 2. 3. 4. 5. 6. 7. 8. 9. 10.

Need

Met %

FNQ Scale

To have explanations from professionals given in terms that I can understand To have my question answered honestly To have complete information on the medical care of traumatic injuries (e.g. medications, injections, surgery) To be told about all changes in the patient’s medical status. To be shown that medical, educational or rehabilitation staff respect the patient’s needs or wishes To have information on the patient’s rehabilitative or educational progress To discuss my feelings about the patient with other friends or family To be assured that the best possible medical care is being given to the patient To have a professional to turn for advise or services when the patient needs help To have complete information on the patient’s physical problems (e.g., weakness, headaches, dizziness, problems with vision or walking)

71.2%

Health Information

70.3% 60.3%

Health Information Health Information

59.6% 57.3%

Health Information Health Information

55.7%

Health Information

55.1%

Community Support Network

54.2%

Health Information

53.9%

Community Support Network

52.3%

Health Information

FNQ sub-scales: 1 refers to ‘Unmet’; 2 refers to ‘Partially met’; 3 refers to ‘Met’. Table 6 Rating of needs being unmet in the total sample (n = 271) Rank 1. 2. 3. 4. 5. 6. 7. 8. 9. 10.

Need

Unmet %

Help preparing for the worst To be reassured that it is usual to have strong negative feelings about the patient To have help keeping the house (e.g., shopping, cleaning, cooking, etc.) To be shown what to do when the patient is upset or acting strange Help getting over my doubts and fears about the future To discuss my feelings about the patient with someone who has gone through the same experience To be encouraged to ask others to help out To have enough resources for myself or the family (e.g. financial or legal counseling, respite care, counseling, nursing or daycare) To have complete information about drug and alcohol problems and treatment To get a break from my problems and responsibilities

58.8% 56.3%

Emotional Support Emotional Support

FNQ Scale

52.0%

Instrumental Support

50.6% 48.8% 48.1%

Professional Support Emotional Support Emotional Support

46.7% 46.6%

Emotional Support Professional Support

46.6%

Health Information

46.2%

Instrumental Support

FNQ sub-scales: 1 refers to ‘Unmet’; 2 refers to ‘Partially met’; 3 refers to ‘Met’.

Box-M = 115.86, F(84, 24904.52) = 1.25, p = 0.063, and only two out of six statistically significant Levene’s tests (Health Information, p = 0.031, and Involvement with Care, p = 0.034) provided multivariate and generally univariate support for the homogeneity of variance assumption, suggesting that the more liberal Wilk’s Lambda could be used as an estimate of the F-statistic. The second omnibus MANCOVA yielded a statistically significant effect for country, Wilk’s Lambda = 0.721, F(24, 534.96) = 2.19, p = 0.001, η2 = 0.078. Again, six follow-up univariate ANCOVAs adjusted for time since injury and with least significant difference contrasts were run (Table 7).

Norwegian family members rated their health information needs as less met than did Colombian, Mexican, and Danish family members, and Spanish family members rated those needs as less met than Colombian and Danish family members. However, the overall effect of country on health information needs was smallsized. Mexican family members rated their emotional support needs as less met than Spanish, Danish, and Norwegian family members, with the effect size reaching a medium-sized effect. Similarly, Mexican family members rated their instrumental support needs as less met than Colombian, Danish, and Norwegian family members, a small-sized effect. Finally, Spanish and

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A. Norup et al. / Family needs after brain injury Table 7 Adjusted means (and standard error) of met ratings of family needs

Need Health Information Emotional support Instrumental support Community support Professional support Involvement with care

Colombia

Mexico

Spain

2.474 (0.108)ab 1.803 (0.112) 2.167 (0.111)a 2.213 (0.106) 2.093 (0.120) 2.492 (0.127)ab

2.438 (0.091)c 1.698 (0.094)abc 1.813 (0.094)abc 2.106 (0.089) 2.046 (0.101) 2.366 (0.107)cd

2.312 (0.115)be 2.066 (0.119)b 1.972 (0.119) 2.255 (0.113) 2.045 (0.128) 2.080 (0.135)bd

Denmark 2.522 (0.128)de 2.091 (0.132)c 2.183 (0.132)c 2.257 (0.126) 1.991 (0.142) 2.486 (0.150)e

Norway

F

p-value

η2

2.246 (0.076)acd 1.936 (0.079)a 2.100 (0.078)b 2.222 (0.075) 1.952 (0.084) 2.017 (.089)ace

2.662 4.04 2.928 0.749 0.554 4.707

0.034 0.004 0.022 0.559 0.696 0.001

0.046 0.071 0.046 0.013 0.009 0.069

Note. Country means for a single FNQ sub-scale that share the same subscript letter were statistically different by country at p < 0.05 or lower. Mean met ratings for FNQ sub-scales: 1 refers to ‘Unmet’; 2 refers to ‘Partially met’; 3 refers to ‘Met’.

Norwegian family members rated their involvement with care needs as less met than did Colombian and Mexican family members, and Danish family members rated those same needs as more met than Norwegian family members. The overall effect of country on involvement with care needs was medium-sized. 4. Discussion The purpose of the current study was to explore differences in the importance ratings of family needs after TBI by country, as well as differences in met needs in Mexico, Colombia, Spain, Denmark, and Norway. 4.1. Importance of needs In the total sample, eight of the ten needs rated as most important were from the Health Information scale, and the last two among the top ten were from the Professional Support and Community Support Network Scale. This finding is in concordance with the results of other studies (Arango-Lasprilla et al., 2010b; Kreutzer et al., 1994) and suggests that globally the provision of information about TBI to family members is of the outmost importance. Importance ratings on the Health Information, Professional Support, and Involvement With Care were similar across countries. These needs can be considered global needs and their importance are not found to be significantly associated with differences in the health care systems, family structures and culture. Significant differences were found across countries in relation to Emotional and Instrumental Support needs, as Mexican family members rated these needs less important than Columbian, Spanish and Danish family members. Mexican family members also rated their Community Support needs less important than Danish and Spanish family members. In general, Mexican family members rated their needs as less important than the other populations with effects sizes ranging from small to large on the different subscales.

The needs consistently rated as lower by Mexican family members were the type of needs traditionally met by one’s family and community. In comparison to other ethnic groups, individuals from the LatinAmerican countries have been shown to be more family-oriented and collectivistic, which is the tendency to prioritize group identity above one’s own personal needs (Markus & Kitayama, 1991). Perhaps because of this collectivistic nature, Mexican family members of individuals with TBI in the current study did not perceive themselves to have high emotional, instrumental, or community support needs, as these needs may have already been fulfilled by one’s family and community. This might lead the needs to not even be perceived as needs, and as a result, those needs were rated much lower. Spanish and Danish cultures by contrast tend to be more westernized and individualistic, and these specific needs may have emerged as more important because of the salience of not having as much family and community support as in Mexican culture. Similarly, families in the Latin-American countries have a large responsibility in providing care for their family member with brain injury because of lack of rehabilitation facilities and services as well as poor social security and health care systems. This might cause low expectations for families, as they will not expect that their needs will be provided for by anyone else than their own family, and this might indirectly affect, how they rate the importance of their needs. Interestingly, the Mexican sample rated their needs significantly less important compared to the Columbian sample on the Emotional Support scale and the Instrumental Support scale even though one would expect more or less the same pattern in these countries as they have similar culture and family structure. One difference between the two samples that might have an effect on our results is that the participants in the Columbian sample primarily were siblings and spouses, whereas the Mexican sample mostly consisted of parents. Previous research has suggested that spouses might be in a

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more vulnerable position than parents and experiencing higher burden (Kreutzer, Gervasio, & Camplair, 1994; Ponsford, Olver, Ponsford, & Nelms, 2003). This might be reflecting in the rating of needs as well. Parents might have been more accustomed to being caregivers in contrast to siblings who do not normally have a caregiving role in relation to a brother or sister. The life change caused by a brain injury in the family could have a larger impact on a sibling who assumes a caregiving role than on a parent, mainly because the parent is accustomed to taking care of his or her child no matter what the circumstances. This might result in a less dramatic shift in role for a parent. For a sibling, suddenly becoming the primary caregiver could cause comparably greater disruptions in everyday life. Other explanations related to differences between the samples could be that the Columbian sample is smaller and that the Mexican sample does have more female caregivers along with a higher mean age. 4.2. Met and unmet needs In the total sample, needs rated as most often met was from the Health Information scale, which is comparable with what has previously been reported in Columbian (Arango-Lasprilla et al., 2010b) and American samples (Kolakowsky-Hayner et al., 2000; Serio, Kreutzer, & Gervasio, 1995). In the total sample, most unmet needs were from the Emotional Support scale, which is comparable to the Columbian sample (Arango-Lasprilla et al., 2010b), whereas the previous American sample rated needs from the Professional and Instrumental Support scales as most unmet (Kolakowsky-Hayner et al., 2000). Community Support Network and Professional Support scales needs were similarly met across countries. However, the Spanish and Norwegian sample had lower met need ratings in relation to Health Information, although effect sizes were small. Both Spanish and Norwegian family members might have greater expectations for their health information needs to be met due to more well-developed national health care systems in those countries than in Latin America. Unfortunately, greater access to care in this sample did not seem to coincide with the perception of health care information actually reaching family members of individuals with TBI. Future studies should be done in order to understand if this is due to a problem with the provision of health information in these two countries or the information provided is adequate and the unmet needs in this area are due to the families’ possibly unrealistically high expectations of receiving this type of information.

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On both the Instrumental Support scale and the Emotional Support scale Mexican family members rated their needs as less met than the other samples. In Mexico, there is a stigma surrounding asking for help concerning emotional issues (Wright, 2009). Also, when the individuals indeed are ready to ask for such help, there is a lack of professionals (e.g., rehabilitation psychologists, community therapists) with adequate training who can assist such persons and families (Arango-Lasprilla et al., 2011; Berenzon, Saavedra, Medina-Mora Icaza, Aparicio, & Galvan, 2013). Religion plays a more important role in Mexico, more so than in the other countries in the study, possibly normalizing the emotional needs associated with caregiving as suffering that is attributed to an external locus of control. Of all the countries, Mexico had the largest proportion of women caregivers. The instrumental support activities assessed included shopping, cleaning, and cooking. Women in Mexico feel obliged to perform activities associated with their gender role without asking for help and assistance from their significant others, children, and/or friends (Galanti, 2003), so it is not surprising that needs in this area are less met. On the Involvement With Care both the Spanish and Norwegian sample rated their needs less met than the Latin-American samples. These differences may be explained by the lack of outpatient rehabilitation centers and respite care facilities in Latin America. Therefore, caregivers in Latin American are forced to be heavily involved in caregiving. In addition, the caregiver in Latin American feels obliged to care for the family member him or herself (Lehan, Stevens, Arango-Lasprilla, Diaz Sosa, & Espinosa Jove, 2012) and enjoys playing an active role in all aspects of care. It is possible that the universal health care systems in Spain and Norway that provide patient care allow the caregivers in these countries to be less involved in the direct care of their family member. Another interesting finding is the difference between the Danish and the Norwegian sample in relation to met needs as we expected that these samples would have more or less similar ratings due to their access to free health care services in contrast to the Latin American countries. On the Health Information scale and the Involvement With Care scales, the Norwegian sample scored significantly lower than the Danish sample. This is surprising, as these two countries have the most similar health care systems of the participating countries, where treatment does not depend on insurance or personal wealth. For this reason alone, patients will have access to rehabilitation services, which

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hypothetically could influence the needs of their family. However, the Norwegian sample did actually score lower on all subscales, and significantly lower on Health Information and Involvement With Care. The two samples are actually quite similar in terms of gender, age, and relationship to the patient. One possible explanation could be a better organized health care system in Denmark than Norway for patients with severe TBI, as not all patients in Norway are treated within continuous treatment chains from acute care to rehabilitation (Andelic et al., 2012b). Another explanation could be related to the difference in the recruited populations. The population in Denmark was recruited from a highly specialized sub-acute rehabilitation facility, while the Norwegian population was recruited from the Trauma Referral Centers. This means that it is possible that some Norwegian patients may not have received rehabilitation at all, thus their families have probably received less or more inconsistent information. Furthermore, there are large differences in the time since injury: 64 months in the Danish population vs. 14 months in Norwegian population. In spite of the fact that MANCOVA have adjusted for time since injury, there are other factors related to time since injury that can influence the results. For example the patients are on different levels of recovery, patients at different phases of rehabilitation, and this indirectly influences the needs of the family. The vulnerability of the family is more emphasized at the earlier stages due to e.g. the self-awareness and neurobehavioral problems of patients, the adaptation process and coping of family members to new situation of life etc. Future research should be conducted to further investigate if this difference is replicated in additional studies. 4.2.1. Clinical implications Across countries and cultures the most important family needs to be addressed are resources for professional treatment of the person with brain injury and provision of clear health information. Norwegian and Spanish families want to be more involved in the care of the patient. High unmet needs for emotional support highlight the need for targeted action. 4.3. Limitations and future directions Although the current study uncovered a number of similarities and differences among countries in terms of family needs after TBI, it has several limitations and as a result, directions for future research. Participants completed the FNQ as a part of a diverse set of studies in

their respective countries, and as a result, the samples were different in many aspects, including the family members being in different phases of rehabilitation. The MANCOVAs did include an adjustment for time since injury, but additional variables potentially influencing the outcomes could not be accounted for. Future research should take into account TBI severity, relationship to patient, and other important demographic variables. It could be possible that some of the differences between countries may be a function of who filled out the questionnaires. For instance, parents could experience different needs than spouses or siblings. Due to the small sample size these possible differences by relationship to patient couldn’t be explored further. All the samples were convenience samples; they may or may not be representative of other family members of an individual with TBI in each of the five countries. Future research should include samples specifically meant to be representative of the family members affected by TBI in the respective countries. Implementation of an international study that recruits patients and family members at the time of the injury and collects data at 1-year, 2-year, and 5-year follow-up will help understand the similarities and differences of family needs across countries and over time. The FNQ measures six kinds of family needs which are common among caregivers of individuals with TBI around the world. The results of this study cannot be generalized to other needs which caregivers may experience, but which were not assessed by this instrument. It would be interesting to see the differences by countries in needs of economic help/assistance, self-care needs, spiritual/religious needs, etc. Another limitation to the current study is that response rates of individuals who had been approached to participate were not systematically collected. As a result, the exact response rates for each country cannot be calculated or compared. It is possible that country-level differences in response rates influenced the patterns of findings, which would be a ripe area for future research. Future research could explore 1) The relationship between other characteristics of the caregivers (such as mental health functioning, personal strengths, family functioning, coping styles, etc.) and their perception of family needs following the TBI, 2) The relation between the patient functioning (physical, cognitive, behavioral and social) and family needs, 3) The effect of different brain injury rehabilitation and interventions programs on family needs within and across countries.

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5. Conclusion Despite the mentioned limitations, the current study was the first to examine differences in family needs after TBI by country. In all countries studied, the most important needs were informational, professional support, and involvement with care. Of the needs studied, regardless of country, informational needs were most met, while emotional needs were mostly unmet. This suggests that rehabilitation professionals should continue to include educational programs in their services to keep meeting the informational needs of this population. The development of new programs, possibly in a peer support group setting that target family member caregiver emotional needs like optimism, normalizing negative feelings, and preparing for negative outcomes, are warranted. As brain injury continues to be a major cause of death and disability globally, additional research addressing the needs of families providing post-injury informal care in diverse global regions will be critical. Identifying these differences can help craft more culturally appropriate rehabilitation services for family members that take into account country-specific unmet needs in order to improve informal care for TBI. Acknowledgments The authors would like to thank all the participants in the study and additionally acknowledge the work done by the staff at the different departments in the different countries. Conflict of interest The authors have no conflicts of interest to report. References Andelic, N. (2012). The epidemiology of traumatic brain injury. Lancet Neurology. Andelic, N., Anke, A., Skandsen, T., Sigurdardottir, S., Sandhaug, M., Ader, T., et al. (2012a). Incidence of hospital-admitted severe traumatic brain injury and in-hospital fatality in Norway: A national cohort study. Neuroepidemiology, 38, 259-267. Andelic, N., Bautz-Holter, E., Ronning, P., Olafsen, K., Sigurdardottir, S., Schanke, A. K. et al. (2012b). Does an early onset and continuous chain of rehabilitation improve the long-term functional outcome of patients with severe traumatic brain injury? Journal of Neurotrauma, 29, 66-74. Anson, K., & Ponsford, J. (2006). Coping and emotional adjustment following traumatic brain injury. Journal of Head Trauma Rehabilitation, 21, 248-259.

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