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NeuroRehabilitation 35 (2014) 475–480 DOI:10.3233/NRE-141139 IOS Press
Hope: A further dimension for engaging family members of people with ABI Pim Kuipersa,b , Emmah Doigc,∗ , Melissa Kendall b,d , Ben Turnere , Marion Mitchellf,g and Jennifer Flemingc a Centre
for Functioning and Health Research, Metro South Health District, Brisbane, Australia for Community Science, School of Human Services, Griffith University, Brisbane, Australia c School of Health and Rehabilitation Sciences, The University of Queensland, Brisbane, Australia d Acquired Brain Injury Outreach Service and Transitional Rehabilitation Programme, Metro South Health, Brisbane, Australia e Acquired Brain Injury Outreach Service, Princess Alexandra Hospital, Metro South Health, Brisbane, Australia f NHMRC Centre of Research Excellence in Nursing (NCREN), Centre for Health Practice Innovation, Griffith Health Institute, Griffith University, Brisbane, Australia g Princess Alexandra Hospital, Brisbane, Australia b Centre
Abstract. BACKGROUND: Family member engagement is increasingly recognised as an influential factor in the rehabilitation continuum following Acquired Brain Injury, including the inpatient setting and longer-term community integration phases. OBJECTIVE: To explore the experiences of patients and family members about their involvement in brain injury rehabilitation. METHODS: This study comprised individual and group interviews with 14 ex-patients and family members. Interviews explored effects of inpatient rehabilitation on family relationships. Interview audio recordings were analysed using an interpretive approach by two independent researchers. RESULTS: Findings clearly confirmed the significance of engaging family members in inpatient rehabilitation, and specifically reinforced the importance of informational, emotional, practical and peer support. However, the key finding of the study was the importance of hope, and the need for rehabilitation professionals to foster hope. Despite not having included any questions on this topic, all interviewees noted the importance of hope, some saw it as fundamental to positive outcomes, and many were unconvinced of rehabilitation professionals’ concern to avoid false hope. Various dimensions of hope are explored. CONCLUSIONS: The study notes that hope has been identified as highly important in many areas beyond brain injury rehabilitation. Based on this small preliminary study, the issue of hope is seen as a key focus for future research. Keywords: Brain injury, rehabilitation, family relationships, hope
1. Introduction In recent decades rehabilitation services for people with brain injuries in Australia and internationally have undergone substantial change (Ponsford, Sloan, ∗ Address for correspondence: Dr. Emmah Doig, School of Health and Rehabilitation Sciences, The University of Queensland Brisbane, Brisbane, Australia. Tel.: +61 7 3896 3081; Fax: +61 7 3406 2267; E-mail: [email protected].
& Snow, 2012). In particular, a major Australian metropolitan brain injury rehabilitation unit has been the focus of considerable research and commentary in recent years (Fleming, Sampson, Cornwell, Turner, & Griffin, 2012; Turner, Fleming, Cornwell, Haines, & Ownsworth, 2009; Turner et al., 2007). Key studies informing service improvement in this setting have drawn attention to a number of issues including the importance of reconceptualising ‘environment’ and ‘occupation’ issues in inpatient settings (Fleming,
1053-8135/14/$27.50 © 2014 – IOS Press and the authors. All rights reserved
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P. Kuipers et al. / Hope: A further dimension for engaging family members of people with ABI
Sampson, Cornwell, Turner, & Griffin, 2012), and the importance of fostering greater independence and participation in meaningful occupations in the transition back to the community (Turner, Ownsworth, Cornwell, & Fleming, 2009). These studies, coinciding with organisational evolution and other factors, such as increased funding under the National Partnership Agreement on Preventive Health (DoHA, 2010), have led to a number of changes that have been progressively implemented in the rehabilitation unit. New research initiatives documenting the outcomes of such changes are in progress. The current project is one of these, specifically focusing on family members of people with ABI and their involvement in rehabilitation. Recognising the importance of family member/significant other involvement in brain injury rehabilitation (Lefebvre, Pelchat, Swaine, G´elinas, & Levert, 2005), the primary aim of the current study was to explore patient and family members’ perspectives regarding traditional inpatient rehabilitation. In particular, the study sought to explore the experience of a cohort of ex-patients and family members, whose involvement with the brain injury rehabilitation unit occurred prior to the current changes, and against which future investigations might draw comparisons.
2. Method The current study comprised interviews with a ‘retrospective’ cohort of family members/carers and expatients reflecting on their experience while they/their family member was in traditional inpatient rehabilitation. The period in which they were engaged with
inpatient rehabilitation was between February, 2009 and June, 2012. Ethical approval for the study was obtained from the Griffith University and the Metro South Hospital and Health Service Human Research Ethics Committees. Interviewees were eight family members/significant others of people with brain injuries, namely, mothers (n = 5), fathers (n = 1) and wives (n = 2). Interviewees also included six people who had been hospitalised after ABI (3 males, 3 females). Table 1 provides demographic details. Characteristics of individuals who participated in interviews are highlighted in this table. Two ex-patients interviewed did not have family currently available to participate but provided comment on the involvement of their family during inpatient rehabilitation. Three significant others participated without participation from the ex-patient to which they were related. These ex-patients were all unable to participate in interviews as a result of the nature of their impairments. Table 1 indicates that most ex-patients had traumatic injuries. All had injuries in the moderate to severe range (for TBI, Initial GCS >12; PTA >1 Day; for CVA, clinical classification as moderate to severe). All interviews were conducted face-to-face, with the exception of one telephone interview. Interviews were conducted in a location of the participant’s choice, usually the family home. Interviews were between 45 and 90 minutes duration. A semi-structured interview format with open-ended questions was employed to explore positive and negative aspects of inpatient rehabilitation, staff, routines, treatments, systems, and environments on relationships with families. In total, 10 interviews were conducted. Seven of these were individual interviews (ex-patients, n = 3;
Table 1 Details of 6 ex-patient and 8 family member participants (interviewees shaded) Patient M/F F F M M F M F F
Age 32 50 52 31 49 44 32 26 20
Injury CVA Fall from horse CVA Skateboard accident Fall–work accident CVA Fall–kitesurfing accident MBA Fall–>1 m
Family member Months post injury 26 12 42 21 48 20 11 21 21
Months since hospital discharge 21 10 38 11 43 16 7 17 5
NOTE: CVA: cerebro-vascular accident; i/v: interview; MBA: motorbike accident.
Comment
Relationship with ex-patient No family i/v No family i/v Wife Mother Wife Mother Father Mother Mother Mother
Both parents i/v No ex-patient i/v No ex-patient i/v No ex-patient i/v
P. Kuipers et al. / Hope: A further dimension for engaging family members of people with ABI
family members, n = 4), and three were group interviews comprising the ex patient and their family member interviewed together. All interviews were audio-recorded, and the interviewer also took notes of salient points throughout the interview, noting potentially important quotes. 2.1. Analysis The primary aim of the current study was to build understanding and distinguish broad concepts rather than conduct a detailed content analysis of interviews, so appropriate data analysis methods were sought. It was recognised that in all research, but particularly in qualitative studies, the interpretation of the data is the decisive factor in determining what conclusions can be drawn (Flick, 2009). As a result, we chose a method which emphasises rigour of interpretation. Rather than focus on verbatim transcribing and specific coding, we conducted two complete and independent interpretations of all of the raw data. This ensured that our conclusions were primarily based on the key interview themes. It also allowed us to cross check and verify findings and minimise interpretation bias that may result from the traditional approach of having one person conduct a detailed thematic analysis of a transcript (Flick, 2009). The interviewer and a second experienced brain injury researcher (not directly involved with the project) listened to all recordings of all interviews, taking notes regarding the key points, and stopping the recording to make verbatim transcriptions of important and representative quotes. When both had completed their interpretations, they met to develop a consensus document which noted commonly identified points and distinguished major themes which both agreed were representative of the data. Based on this consensus document, the interviewer then associated indicative quotes with each theme.
3. Results and discussion Aspects of our findings which are consistent with previous research are briefly documented below. Beyond this, a key finding, which has not been extensively covered in the literature is the issue of the importance of ‘hope’. This is documented in detail. Relevant quotes are included from participant (P), and family member/significant other (SO) interviews. All of the interviews in this study reinforced the importance of engaging family member/carers
477
more effectively in rehabilitation (Fleming, Sampson, Cornwell, Turner, & Griffin, 2012; Turner, Ownsworth, Cornwell, & Fleming, 2009; Gill, Wall, & Simpson, 2012). One participant with an ABI observed that including her daughters in the rehabilitation process had benefits for them as well as herself; “ . . . by telling (my daughters) how important their input is, gave them a challenge, and gave them a sense of wellbeing; that they are contributing to (my) recovery. Which is good for their soul, good for them as well” (P 10). In addition to this fundamental principle of engagement, our interview results reflected four themes that have previously been reported in the literature. First, the importance of informational support was evident. As with previous studies (Coco, Tossavainen, J¨aa¨ skel¨ainen, & Turunen, 2011), data from our interviews emphasised the importance of information about the patient’s symptoms, their care and prognosis “for the whole family and friends” (SO 4). Our interview summaries identified that “we’ve never done this before, so we don’t know the questions to ask . . . we don’t know what we need to know” (SO 11). It was clear that comprehensible, repeated and consistent information, coming from a few sources was vital, which is consistent with previous findings (Lefebvre & Levert, 2012). Participants noted that information needs to be actively forthcoming, with some complaining that in many instances it had to be “sourced out by ourselves” (SO 4). Second, the importance of emotional support for family members was also clear. Previous studies have documented family members’ need for caring, listening and respect (Coco, Tossavainen, J¨aa¨ skel¨ainen, & Turunen, 2011), as well as empathy and sensitivity from health care professionals (Lefebvre & Levert, 2012). Emotional support from professional staff was described as necessary for adapting to lifestyle and role changes after ABI “My whole life is changed in a flash. I now am the head of the household, (I am) the husband, the mother, the carer, the wage earner, the fix em’ up handy man, the lawn mower, everything . . . and the different changes in (my husband’s) totally different personality. How do you deal with that?” (SO 12). The importance of emotional support for siblings was also emphasised (Degeneffe & Olney, 2010), since the main focus becomes the family member with the brain injury. They noted that siblings will constrain themselves, that they “will often not say anything because they don’t want to worry Mum and Dad how they are feeling . . . and they are watching from the side” (SO 2).
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Third, participants’ need for practical support and hands-on collaboration with health care professionals was clear. As in previous studies, family members emphasised the need for support in decision making, and in their provision of care (Coco, Tossavainen, J¨aa¨ skel¨ainen, & Turunen, 2011). They emphasised the need for support in practical issues, particularly at discharge, but also ongoing. For example, one relative described being told in hospital that her husband “had problems with insight, but what does insight mean? It’s huge, two little words, means a lot of things . . . you really need support . . . just learning how to manage . . . rethinking how I was going to talk to him” (SO 12). The need for support went beyond psychological issues and included the practicalities of respite care, transport, vocational issues and in negotiating transfers within the continuum of care, as previously emphasised (Lefebvre & Levert, 2012). In this regard, the potential value of a key worker across the continuum of care was raised by several families “from start to finish . . . as a mentor and a guide, for the family of the patient” (SO 11). Fourth, the relevance of peer support was noted. Participants emphasised that “staff members learn things by the book” (SO 2) whereas, “the only ones who get it are those in your shoes because they have done it too” (SO 6). This clearly echoed the research literature which has noted the importance of peer support for enhancing coping, both for people with brain injuries and their family members (Hibbard et al., 2002). However, of particular interest and clearly identified in both analyses of the data across all family member/carer interviews was the issue of hope. Despite not having included specific interview questions on this topic, the issue of hope (and conversely hopelessness) was commonly identified by family members, and seen as vital across the whole continuum of care. Having some degree of hope was described as crucial. One participant stated that hope was needed “to give you a bit of encouragement, to keep hanging in there, and give you a bit more hope that things were going to be all right” (SO 8). Many family members expressed concern that the rehabilitation process did not adequately foster hope. They reported receiving information from clinical staff that was “the worst case scenario” (SO 6 and 13) or “doom and gloom” (SO 1 and 6). They said that such information, delivered in meetings left them feeling fearful and “never coming out of it feeling better” (SO 6). One participant’s recollection was, “They kept telling us there was no hope for her, she’s never going to walk, she’s never going to talk, she’s going to be 24 hour care,
bedridden . . . that’s what they kept telling us (which left us with) nothing to hang onto” (SO 4). In response, some families reported ignoring what they perceived as negative information from the inpatient setting, thereby establishing a degree of hopefulness, for example, “that didn’t really bother me because I didn’t listen to them anyway because I knew she would walk out of that hospital, I just knew, and she did” (SO 4). This mother stated that her hopefulness stemmed from her own resolve, rather than the information she received in rehabilitation, “if I wasn’t the sort of person I am and I believed that, I would have given up, but I’m not” (SO 4). Participants had considered the reasons why clinicians may avoid giving hopeful information. They understood that there may be numerous reasons why practitioners would not want to generate unrealistic hope. Fear of litigation due to unrealised outcomes was one explanation, “I understand with litigation these days it is hard for them . . . ” (SO 1). Another relative recognised that multiple experiences of suboptimal outcomes may cause them to be cautious. She stated “when you see (many) people, and you know that they see the worst, you can tell from staff that have been there for years they’ve been through a lot, they’ve seen a lot, so it really is an individual thing as far as what a patient can achieve if they have the family to push them along... or they have that personality to help themselves” (SO 13). As suggested above, a number of family members had reflected on this issue, and had also considered potential strategies for maximising hope in an inpatient setting. While many acknowledged the necessity and importance of receiving truthful information about their injured family member, they also expressed a need for some professional support to cope with this information, to process and contextualise it for themselves. For example one family member stated, “the clinical staff will tell you things and they are quite negative in what they tell you, but in reality, it is a realistic view in their experience, so a psychologist (should) help guide you through all of those emotions that you have. You feel quite hopeless” (SO 13). A possible approach to providing information while still fostering hope in the inpatient setting was suggested by one mother. She recommended using phrasing such as, “This is what he is, or this is where it’s at; but with work, we could, not we will, but we could, get to (that).” (SO 1). One family member reflected on the value of staff who provided hopeful information, but who were also warm and caring. Describing a particular staff member, “she’d tell you what they were doing...
P. Kuipers et al. / Hope: A further dimension for engaging family members of people with ABI
and she’d tell you why they were doing it in terms you could understand... and it put your mind at ease a little bit... She never came in unless she put her arm around you and gave you a little squeeze, you know and just little things like that gave you a lot of support to go on” (SO 8). Some interviewees suggested that when making predictions about future functioning, clinical staff need to consider that patient and family traits and circumstances, aside from the presence of brain injury, are mediating factors in the rehabilitation process and can impact on future outcomes for the person with a brain injury. This was mirrored by one mother who, in the face of negative future predictions about her daughter’s functioning, recalled thinking “no, you don’t know my daughter, and you don’t know her stubbornness and you don’t know my stubborness or our determination” (SO 4). In contrast with our findings detailing different kinds of support which echoed the literature (Coco, Tossavainen, J¨aa¨ skel¨ainen, & Turunen, 2011; Lefebvre & Levert, 2012), it would appear that the issue of hope has only briefly been touched on in a number of brain injury research studies (Bright, Kayes, McCann, & McPherson, 2011). For example, the importance of engendering hope has been noted for people with stroke (Bright, Kayes, McCann, & McPherson, 2013), and more conceptually in the positive psychology approach to brain injury rehabilitation (Evans, 2011), and in relation to spiritual and post-traumatic growth (McGrath, 2011). However, based on our overview and more detailed reviews (Bright, Kayes, McCann, & McPherson, 2011), it appears not to have been the core focus of attention within the ABI literature, or specifically a focus of research on family members/carers. Beyond the area of brain injury, hope has been recognised as fundamental to the coping and adjustment of family members during critical and acute care (Keenan & Joseph, 2010), and in cases of brain tumours (Lucas, 2013). It has been documented as an essential factor enabling people with spinal cord injury to cope (Dorsett, 2010). Indeed in the context of spinal cord injury rehabilitation, Dorsett’s review of the literature identified many vital dimensions of hope in terms of its positive effects on performance, impact on life satisfaction and goal achievement (Dorsett, 2010). It has been noted that hope is linked with life satisfaction, and is a protective factor for stress and depression (Strom & Kosciulek, 2007). However most ABI studies that mention hope appear to focus on avoiding ‘false hope’, noting discrepancies between patient
479
and practitioner expectations (Gebhardt, McGehee, Grindel, & Testani-Dufour, 2011), and express concern to avoid hope for unrealistic recovery (Lefebvre, Pelchat, Swaine, G´elinas, & Levert, 2005; O’Callaghan, McAllister, & Wilson, 2011). Our findings suggest that there is a need for clinically relevant research to guide practitioners in fostering hope appropriately and in optimal ways to enhance patient and family member experiences and outcomes. As a small exploratory, qualitative study, the limitations to generalising from this work are self-evident. The sample of participants was not randomly selected and it is likely that those who consented to interview were those who were more actively engaged and hope-oriented. Despite this, the clear confirmation of variables established in the literature, suggests a degree of validity to the findings which should foster confidence in the method. Likewise, the fact that the notion of hope was not solicited in the interview structure, but was raised in all interviews, indicates that the issue is important and may warrant further investigation and consideration. 4. Conclusion Based on these findings, it would appear that it may be beneficial to clearly define and understand the place and importance of hope in the context of people with ABI and their families. In this regard, a recent review of the concept of hope among stroke patients which documents conceptualisations of hope and resources contributing to hope may have application to family members and significant others (Bright, Kayes, McCann, & McPherson, 2011). From the perspective of health practitioners, greater clarity on the legal, ethical and clinical implications of fostering hope (and false hope) may be warranted. This issue will inform our future research. Acknowledgments Funding for this project was provided by the Princess Alexandra Hospital Research Foundation. Ethical consent for the project was obtained through Griffith University and the Metro South Hospital and Health Service Human Research Ethics Committees. Declaration of interest The authors report no conflicts of interest.
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References Bright, F. A. S., Kayes, N. M., McCann, C. M., & McPherson, K. M. (2011). Understanding hope after stroke: A systematic review of the literature using concept analysis. Topics in Stroke Rehabilitation, 18(5), 490-508. Bright, F., Kayes, N., McCann, C., & McPherson, K. (2013). Hope in people with aphasia. Aphasiology, 27(1), 41-58. Coco, K., Tossavainen, K., J¨aa¨ skel¨ainen, J. E., & Turunen, H. (2011). Support for traumatic brain injury patients’ family members in neurosurgical nursing: A systematic review. Journal of Neuroscience Nursing, 43(6), 337-348. Degeneffe, C. E., & Olney, M. F. (2010). ’We are the forgotten victims’: Perspectives of adult siblings of persons with traumatic brain injury. Brain Injury, 24(12), 1416-1427. DoHA. (2010). National. Partnership Agreement on Preventive Health, http://www.health.gov.au/internet/main/publishing .nsf/Content/phd-prevention-np Dorsett, P. (2010). The importance of hope in coping with severe acquired disability. Australian Social Work, 63(1), 83-102. Evans, J. J. (2011). Positive psychology and brain injury rehabilitation. Brain Impairment, 12(2), 117-127. Fleming, J., Sampson, J., Cornwell, P., Turner, B., & Griffin, J. (2012). Brain injury rehabilitation: The lived experience of inpatients and their family caregivers. Scandinavian Journal of Occupational Therapy, 19(2), 184-193. Flick, U. (2009). An introduction to qualitative research. (3rd. ed.) London: Sage Publications Limited. Gebhardt, M. C., McGehee, L. A., Grindel, C. G., & Testani-Dufour, L. (2011). Caregiver and nurse hopes for recovery of patients with acquired brain injury. Rehabilitation Nursing, 36(1), 3-12. Gill, I. J., Wall, G., & Simpson, J. (2012). Clients’ perspectives of rehabilitation in one acquired brain injury residential rehabilitation unit: A thematic analysis. Brain Injury, 26(7-8), 909-920. Hibbard, M. R., Cantor, J., Charatz, H., Rosenthal, R., Ashman, T., Gundersen, N., et al. (2002). Peer support in the community: Initial findings of a mentoring program for individuals with traumatic brain injury and their families. The Journal of Head Trauma Rehabilitation, 17(2), 112-131.
Keenan, A., & Joseph, L. (2010). The needs of family members of severe traumatic brain injured patients during critical and acute care: A qualitative study. Canadian Journal of Neuroscience Nursing, 32(3), 25-35. Lefebvre, H., & Levert, M. (2012). The needs experienced by individuals and their loved ones following a traumatic brain injury. Journal of Trauma Nursing, 19(4), 197-207. Lefebvre, H., Pelchat, D., Swaine, B., G´elinas, I., & Levert, M. J. (2005). The experiences of individuals with a traumatic brain injury, families, physicians and health professionals regarding care provided throughout the continuum. Brain Injury, 19(8), 585-597. Lucas, M. R. (2013). What brain tumor patients and their families have taught me. Journal of Neuroscience Nursing, 45(3), 171-175. McGrath, J. C. (2011). Posttraumatic growth and spirituality after brain injury. Brain Impairment, 12(2), 82-92. O’Callaghan, A. M., McAllister, L., & Wilson, L. (2011). Experiences of care: Perspectives of carers of adults with traumatic brain injury. International Journal of Speech-Language Pathology, 13(3), 218-226. Ponsford, J., Sloan, S., & Snow, P. (2012). Traumatic brain injury: Rehabilitation for everyday adaptive living. (2nd ed.) Hove, UK: Psychology Press. Strom, T. Q., & Kosciulek, J. (2007). Stress, appraisal and coping following mild traumatic brain injury. Brain Injury, 21(11), 11371145. Turner, B., Fleming, J., Cornwell, P., Haines, T., & Ownsworth, T. (2009). Profiling early outcomes during the transition from hospital to home after brain injury. Brain Injury, 23(1), 51-60. Turner, B., Fleming, J., Cornwell, P., Worrall, L., Ownsworth, T., Haines, T., et al. (2007). A qualitative study of the transition from hospital to home for individuals with acquired brain injury and their family caregivers. Brain Injury, 21(11), 1119-1130. Turner, B., Ownsworth, T., Cornwell, P., & Fleming, J. (2009). Reengagement in meaningful occupations during the transition from hospital to home for people with acquired brain injury and their family caregivers. The American Journal of Occupational Therapy, 63(5), 609-620.
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NeuroRehabilitation 35 (2014) 475–480 DOI:10.3233/NRE-141139 IOS Press
Hope: A further dimension for engaging family members of people with ABI Pim Kuipersa,b , Emmah Doigc,∗ , Melissa Kendall b,d , Ben Turnere , Marion Mitchellf,g and Jennifer Flemingc a Centre
for Functioning and Health Research, Metro South Health District, Brisbane, Australia for Community Science, School of Human Services, Griffith University, Brisbane, Australia c School of Health and Rehabilitation Sciences, The University of Queensland, Brisbane, Australia d Acquired Brain Injury Outreach Service and Transitional Rehabilitation Programme, Metro South Health, Brisbane, Australia e Acquired Brain Injury Outreach Service, Princess Alexandra Hospital, Metro South Health, Brisbane, Australia f NHMRC Centre of Research Excellence in Nursing (NCREN), Centre for Health Practice Innovation, Griffith Health Institute, Griffith University, Brisbane, Australia g Princess Alexandra Hospital, Brisbane, Australia b Centre
Abstract. BACKGROUND: Family member engagement is increasingly recognised as an influential factor in the rehabilitation continuum following Acquired Brain Injury, including the inpatient setting and longer-term community integration phases. OBJECTIVE: To explore the experiences of patients and family members about their involvement in brain injury rehabilitation. METHODS: This study comprised individual and group interviews with 14 ex-patients and family members. Interviews explored effects of inpatient rehabilitation on family relationships. Interview audio recordings were analysed using an interpretive approach by two independent researchers. RESULTS: Findings clearly confirmed the significance of engaging family members in inpatient rehabilitation, and specifically reinforced the importance of informational, emotional, practical and peer support. However, the key finding of the study was the importance of hope, and the need for rehabilitation professionals to foster hope. Despite not having included any questions on this topic, all interviewees noted the importance of hope, some saw it as fundamental to positive outcomes, and many were unconvinced of rehabilitation professionals’ concern to avoid false hope. Various dimensions of hope are explored. CONCLUSIONS: The study notes that hope has been identified as highly important in many areas beyond brain injury rehabilitation. Based on this small preliminary study, the issue of hope is seen as a key focus for future research. Keywords: Brain injury, rehabilitation, family relationships, hope
1. Introduction In recent decades rehabilitation services for people with brain injuries in Australia and internationally have undergone substantial change (Ponsford, Sloan, ∗ Address for correspondence: Dr. Emmah Doig, School of Health and Rehabilitation Sciences, The University of Queensland Brisbane, Brisbane, Australia. Tel.: +61 7 3896 3081; Fax: +61 7 3406 2267; E-mail: [email protected].
& Snow, 2012). In particular, a major Australian metropolitan brain injury rehabilitation unit has been the focus of considerable research and commentary in recent years (Fleming, Sampson, Cornwell, Turner, & Griffin, 2012; Turner, Fleming, Cornwell, Haines, & Ownsworth, 2009; Turner et al., 2007). Key studies informing service improvement in this setting have drawn attention to a number of issues including the importance of reconceptualising ‘environment’ and ‘occupation’ issues in inpatient settings (Fleming,
1053-8135/14/$27.50 © 2014 – IOS Press and the authors. All rights reserved
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P. Kuipers et al. / Hope: A further dimension for engaging family members of people with ABI
Sampson, Cornwell, Turner, & Griffin, 2012), and the importance of fostering greater independence and participation in meaningful occupations in the transition back to the community (Turner, Ownsworth, Cornwell, & Fleming, 2009). These studies, coinciding with organisational evolution and other factors, such as increased funding under the National Partnership Agreement on Preventive Health (DoHA, 2010), have led to a number of changes that have been progressively implemented in the rehabilitation unit. New research initiatives documenting the outcomes of such changes are in progress. The current project is one of these, specifically focusing on family members of people with ABI and their involvement in rehabilitation. Recognising the importance of family member/significant other involvement in brain injury rehabilitation (Lefebvre, Pelchat, Swaine, G´elinas, & Levert, 2005), the primary aim of the current study was to explore patient and family members’ perspectives regarding traditional inpatient rehabilitation. In particular, the study sought to explore the experience of a cohort of ex-patients and family members, whose involvement with the brain injury rehabilitation unit occurred prior to the current changes, and against which future investigations might draw comparisons.
2. Method The current study comprised interviews with a ‘retrospective’ cohort of family members/carers and expatients reflecting on their experience while they/their family member was in traditional inpatient rehabilitation. The period in which they were engaged with
inpatient rehabilitation was between February, 2009 and June, 2012. Ethical approval for the study was obtained from the Griffith University and the Metro South Hospital and Health Service Human Research Ethics Committees. Interviewees were eight family members/significant others of people with brain injuries, namely, mothers (n = 5), fathers (n = 1) and wives (n = 2). Interviewees also included six people who had been hospitalised after ABI (3 males, 3 females). Table 1 provides demographic details. Characteristics of individuals who participated in interviews are highlighted in this table. Two ex-patients interviewed did not have family currently available to participate but provided comment on the involvement of their family during inpatient rehabilitation. Three significant others participated without participation from the ex-patient to which they were related. These ex-patients were all unable to participate in interviews as a result of the nature of their impairments. Table 1 indicates that most ex-patients had traumatic injuries. All had injuries in the moderate to severe range (for TBI, Initial GCS >12; PTA >1 Day; for CVA, clinical classification as moderate to severe). All interviews were conducted face-to-face, with the exception of one telephone interview. Interviews were conducted in a location of the participant’s choice, usually the family home. Interviews were between 45 and 90 minutes duration. A semi-structured interview format with open-ended questions was employed to explore positive and negative aspects of inpatient rehabilitation, staff, routines, treatments, systems, and environments on relationships with families. In total, 10 interviews were conducted. Seven of these were individual interviews (ex-patients, n = 3;
Table 1 Details of 6 ex-patient and 8 family member participants (interviewees shaded) Patient M/F F F M M F M F F
Age 32 50 52 31 49 44 32 26 20
Injury CVA Fall from horse CVA Skateboard accident Fall–work accident CVA Fall–kitesurfing accident MBA Fall–>1 m
Family member Months post injury 26 12 42 21 48 20 11 21 21
Months since hospital discharge 21 10 38 11 43 16 7 17 5
NOTE: CVA: cerebro-vascular accident; i/v: interview; MBA: motorbike accident.
Comment
Relationship with ex-patient No family i/v No family i/v Wife Mother Wife Mother Father Mother Mother Mother
Both parents i/v No ex-patient i/v No ex-patient i/v No ex-patient i/v
P. Kuipers et al. / Hope: A further dimension for engaging family members of people with ABI
family members, n = 4), and three were group interviews comprising the ex patient and their family member interviewed together. All interviews were audio-recorded, and the interviewer also took notes of salient points throughout the interview, noting potentially important quotes. 2.1. Analysis The primary aim of the current study was to build understanding and distinguish broad concepts rather than conduct a detailed content analysis of interviews, so appropriate data analysis methods were sought. It was recognised that in all research, but particularly in qualitative studies, the interpretation of the data is the decisive factor in determining what conclusions can be drawn (Flick, 2009). As a result, we chose a method which emphasises rigour of interpretation. Rather than focus on verbatim transcribing and specific coding, we conducted two complete and independent interpretations of all of the raw data. This ensured that our conclusions were primarily based on the key interview themes. It also allowed us to cross check and verify findings and minimise interpretation bias that may result from the traditional approach of having one person conduct a detailed thematic analysis of a transcript (Flick, 2009). The interviewer and a second experienced brain injury researcher (not directly involved with the project) listened to all recordings of all interviews, taking notes regarding the key points, and stopping the recording to make verbatim transcriptions of important and representative quotes. When both had completed their interpretations, they met to develop a consensus document which noted commonly identified points and distinguished major themes which both agreed were representative of the data. Based on this consensus document, the interviewer then associated indicative quotes with each theme.
3. Results and discussion Aspects of our findings which are consistent with previous research are briefly documented below. Beyond this, a key finding, which has not been extensively covered in the literature is the issue of the importance of ‘hope’. This is documented in detail. Relevant quotes are included from participant (P), and family member/significant other (SO) interviews. All of the interviews in this study reinforced the importance of engaging family member/carers
477
more effectively in rehabilitation (Fleming, Sampson, Cornwell, Turner, & Griffin, 2012; Turner, Ownsworth, Cornwell, & Fleming, 2009; Gill, Wall, & Simpson, 2012). One participant with an ABI observed that including her daughters in the rehabilitation process had benefits for them as well as herself; “ . . . by telling (my daughters) how important their input is, gave them a challenge, and gave them a sense of wellbeing; that they are contributing to (my) recovery. Which is good for their soul, good for them as well” (P 10). In addition to this fundamental principle of engagement, our interview results reflected four themes that have previously been reported in the literature. First, the importance of informational support was evident. As with previous studies (Coco, Tossavainen, J¨aa¨ skel¨ainen, & Turunen, 2011), data from our interviews emphasised the importance of information about the patient’s symptoms, their care and prognosis “for the whole family and friends” (SO 4). Our interview summaries identified that “we’ve never done this before, so we don’t know the questions to ask . . . we don’t know what we need to know” (SO 11). It was clear that comprehensible, repeated and consistent information, coming from a few sources was vital, which is consistent with previous findings (Lefebvre & Levert, 2012). Participants noted that information needs to be actively forthcoming, with some complaining that in many instances it had to be “sourced out by ourselves” (SO 4). Second, the importance of emotional support for family members was also clear. Previous studies have documented family members’ need for caring, listening and respect (Coco, Tossavainen, J¨aa¨ skel¨ainen, & Turunen, 2011), as well as empathy and sensitivity from health care professionals (Lefebvre & Levert, 2012). Emotional support from professional staff was described as necessary for adapting to lifestyle and role changes after ABI “My whole life is changed in a flash. I now am the head of the household, (I am) the husband, the mother, the carer, the wage earner, the fix em’ up handy man, the lawn mower, everything . . . and the different changes in (my husband’s) totally different personality. How do you deal with that?” (SO 12). The importance of emotional support for siblings was also emphasised (Degeneffe & Olney, 2010), since the main focus becomes the family member with the brain injury. They noted that siblings will constrain themselves, that they “will often not say anything because they don’t want to worry Mum and Dad how they are feeling . . . and they are watching from the side” (SO 2).
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Third, participants’ need for practical support and hands-on collaboration with health care professionals was clear. As in previous studies, family members emphasised the need for support in decision making, and in their provision of care (Coco, Tossavainen, J¨aa¨ skel¨ainen, & Turunen, 2011). They emphasised the need for support in practical issues, particularly at discharge, but also ongoing. For example, one relative described being told in hospital that her husband “had problems with insight, but what does insight mean? It’s huge, two little words, means a lot of things . . . you really need support . . . just learning how to manage . . . rethinking how I was going to talk to him” (SO 12). The need for support went beyond psychological issues and included the practicalities of respite care, transport, vocational issues and in negotiating transfers within the continuum of care, as previously emphasised (Lefebvre & Levert, 2012). In this regard, the potential value of a key worker across the continuum of care was raised by several families “from start to finish . . . as a mentor and a guide, for the family of the patient” (SO 11). Fourth, the relevance of peer support was noted. Participants emphasised that “staff members learn things by the book” (SO 2) whereas, “the only ones who get it are those in your shoes because they have done it too” (SO 6). This clearly echoed the research literature which has noted the importance of peer support for enhancing coping, both for people with brain injuries and their family members (Hibbard et al., 2002). However, of particular interest and clearly identified in both analyses of the data across all family member/carer interviews was the issue of hope. Despite not having included specific interview questions on this topic, the issue of hope (and conversely hopelessness) was commonly identified by family members, and seen as vital across the whole continuum of care. Having some degree of hope was described as crucial. One participant stated that hope was needed “to give you a bit of encouragement, to keep hanging in there, and give you a bit more hope that things were going to be all right” (SO 8). Many family members expressed concern that the rehabilitation process did not adequately foster hope. They reported receiving information from clinical staff that was “the worst case scenario” (SO 6 and 13) or “doom and gloom” (SO 1 and 6). They said that such information, delivered in meetings left them feeling fearful and “never coming out of it feeling better” (SO 6). One participant’s recollection was, “They kept telling us there was no hope for her, she’s never going to walk, she’s never going to talk, she’s going to be 24 hour care,
bedridden . . . that’s what they kept telling us (which left us with) nothing to hang onto” (SO 4). In response, some families reported ignoring what they perceived as negative information from the inpatient setting, thereby establishing a degree of hopefulness, for example, “that didn’t really bother me because I didn’t listen to them anyway because I knew she would walk out of that hospital, I just knew, and she did” (SO 4). This mother stated that her hopefulness stemmed from her own resolve, rather than the information she received in rehabilitation, “if I wasn’t the sort of person I am and I believed that, I would have given up, but I’m not” (SO 4). Participants had considered the reasons why clinicians may avoid giving hopeful information. They understood that there may be numerous reasons why practitioners would not want to generate unrealistic hope. Fear of litigation due to unrealised outcomes was one explanation, “I understand with litigation these days it is hard for them . . . ” (SO 1). Another relative recognised that multiple experiences of suboptimal outcomes may cause them to be cautious. She stated “when you see (many) people, and you know that they see the worst, you can tell from staff that have been there for years they’ve been through a lot, they’ve seen a lot, so it really is an individual thing as far as what a patient can achieve if they have the family to push them along... or they have that personality to help themselves” (SO 13). As suggested above, a number of family members had reflected on this issue, and had also considered potential strategies for maximising hope in an inpatient setting. While many acknowledged the necessity and importance of receiving truthful information about their injured family member, they also expressed a need for some professional support to cope with this information, to process and contextualise it for themselves. For example one family member stated, “the clinical staff will tell you things and they are quite negative in what they tell you, but in reality, it is a realistic view in their experience, so a psychologist (should) help guide you through all of those emotions that you have. You feel quite hopeless” (SO 13). A possible approach to providing information while still fostering hope in the inpatient setting was suggested by one mother. She recommended using phrasing such as, “This is what he is, or this is where it’s at; but with work, we could, not we will, but we could, get to (that).” (SO 1). One family member reflected on the value of staff who provided hopeful information, but who were also warm and caring. Describing a particular staff member, “she’d tell you what they were doing...
P. Kuipers et al. / Hope: A further dimension for engaging family members of people with ABI
and she’d tell you why they were doing it in terms you could understand... and it put your mind at ease a little bit... She never came in unless she put her arm around you and gave you a little squeeze, you know and just little things like that gave you a lot of support to go on” (SO 8). Some interviewees suggested that when making predictions about future functioning, clinical staff need to consider that patient and family traits and circumstances, aside from the presence of brain injury, are mediating factors in the rehabilitation process and can impact on future outcomes for the person with a brain injury. This was mirrored by one mother who, in the face of negative future predictions about her daughter’s functioning, recalled thinking “no, you don’t know my daughter, and you don’t know her stubbornness and you don’t know my stubborness or our determination” (SO 4). In contrast with our findings detailing different kinds of support which echoed the literature (Coco, Tossavainen, J¨aa¨ skel¨ainen, & Turunen, 2011; Lefebvre & Levert, 2012), it would appear that the issue of hope has only briefly been touched on in a number of brain injury research studies (Bright, Kayes, McCann, & McPherson, 2011). For example, the importance of engendering hope has been noted for people with stroke (Bright, Kayes, McCann, & McPherson, 2013), and more conceptually in the positive psychology approach to brain injury rehabilitation (Evans, 2011), and in relation to spiritual and post-traumatic growth (McGrath, 2011). However, based on our overview and more detailed reviews (Bright, Kayes, McCann, & McPherson, 2011), it appears not to have been the core focus of attention within the ABI literature, or specifically a focus of research on family members/carers. Beyond the area of brain injury, hope has been recognised as fundamental to the coping and adjustment of family members during critical and acute care (Keenan & Joseph, 2010), and in cases of brain tumours (Lucas, 2013). It has been documented as an essential factor enabling people with spinal cord injury to cope (Dorsett, 2010). Indeed in the context of spinal cord injury rehabilitation, Dorsett’s review of the literature identified many vital dimensions of hope in terms of its positive effects on performance, impact on life satisfaction and goal achievement (Dorsett, 2010). It has been noted that hope is linked with life satisfaction, and is a protective factor for stress and depression (Strom & Kosciulek, 2007). However most ABI studies that mention hope appear to focus on avoiding ‘false hope’, noting discrepancies between patient
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and practitioner expectations (Gebhardt, McGehee, Grindel, & Testani-Dufour, 2011), and express concern to avoid hope for unrealistic recovery (Lefebvre, Pelchat, Swaine, G´elinas, & Levert, 2005; O’Callaghan, McAllister, & Wilson, 2011). Our findings suggest that there is a need for clinically relevant research to guide practitioners in fostering hope appropriately and in optimal ways to enhance patient and family member experiences and outcomes. As a small exploratory, qualitative study, the limitations to generalising from this work are self-evident. The sample of participants was not randomly selected and it is likely that those who consented to interview were those who were more actively engaged and hope-oriented. Despite this, the clear confirmation of variables established in the literature, suggests a degree of validity to the findings which should foster confidence in the method. Likewise, the fact that the notion of hope was not solicited in the interview structure, but was raised in all interviews, indicates that the issue is important and may warrant further investigation and consideration. 4. Conclusion Based on these findings, it would appear that it may be beneficial to clearly define and understand the place and importance of hope in the context of people with ABI and their families. In this regard, a recent review of the concept of hope among stroke patients which documents conceptualisations of hope and resources contributing to hope may have application to family members and significant others (Bright, Kayes, McCann, & McPherson, 2011). From the perspective of health practitioners, greater clarity on the legal, ethical and clinical implications of fostering hope (and false hope) may be warranted. This issue will inform our future research. Acknowledgments Funding for this project was provided by the Princess Alexandra Hospital Research Foundation. Ethical consent for the project was obtained through Griffith University and the Metro South Hospital and Health Service Human Research Ethics Committees. Declaration of interest The authors report no conflicts of interest.
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