What is it like to have your loved one with a severe brain injury come to rehabilitation? The experiences of significant others
KEYWORDS : Brain injury; sub-acute rehabilitation; significant other; drawing method; qualitative methodology
Introduction
A severe acquired brain injury (ABI) has a dramatic impact on the life of the injured person and their significant other. Family mem- bers typically spend many hours at the hospital with their loved one during the acute and rehabilitation phase of their recovery [1]; their experiences have been explored mostly through qualita- tive studies across the recovery spectrum. Research has found that in the acute stages post-ABI; families experience signs of recovery as a source of hope; consistent support from the health care team is essential, and the overall experience of the signifi- cant other is one of negotiating uncertainty [2]. Post discharge from hospital, the transition home is an emotional time, shaped by the inpatient experience and the carer underestimating the changes in their loved one’s abilities [3]. On the further end of the recovery spectrum, Perlesz et al. [4] found that 12–60 months after discharge up to 49% of primary carers, particularly wives, experienced psychosocial distress and were at risk of low levels of family satisfaction. Oyesanya [1] published a systematic review examining the experiences of patients with ABI and their families during the hospital stay with two specific themes from families during rehabilitation being perceptions of rehabilitation and the need for information. It was concluded that awareness of families’ experiences can assist healthcare professionals to meet their needs during hospitalisation. It was further stated that more stud- ies are needed to gain greater understanding of the families’ experiences during their hospital stay, as much of the research into carers’ experiences occurs well after inpatient rehabilitation.
The aim of this study is to explore what it is like for a significant other when their loved one with an ABI enters rehabilitation. Further investigation of the significant others experience at this point in the rehabilitation journey will help clinicians better under- stand the experiences of significant others. This may increase clin- icians’ ability to respond to carer needs early on in the sub-acute stage of their loved ones recovery, as inpatient experiences may shape the loved ones’ and significant others’ transition home.
Method
Thematic analysis and the drawing method are used to interpret the data. Qualitative methodology can give voice to those people rarely heard, describe complex interactions between families and clinicians, and describe meanings attached to situations [5]. Given this, two qualitative methods were used to explore the research question “What is it like for the significant other of a person with a severe ABI, during the early stages of their loved one’s admis- sion to sub-acute rehabilitation?” Semi-structured, scripted inter- views using open-ended questions were conducted. Questions included, but were not limited to: Can you tell me a little bit about (patient name) and why they are in ABI rehabilitation?; What did your life look like before (patient name) was injured?; What is it like to have someone you care about in rehabilitation with a brain injury?; How do you think this experience has changed you as a person?; How do you feel now (patient name) has started their rehabilitation journey?; What have you found helpful? What have you found unhelpful?; Is there anything else you would like to share? Once the interview was completed, it was followed by an invitation for the significant other to com- plete a drawing that represented their experience of their rehabili- tation journey. The participant was then asked, “can you describe your picture to me?”
Arts-based methods in health research have been used to increase understanding of phenomena and can be used alone or in combination with other qualitative research methods [6]. The method offers a rich and insightful way to explore how people make sense of their world [7]. This latter point was particularly useful given the research question and the aim of understanding what the significant others were experiencing. Previous studies have investigated through drawing how people with a variety of aetiologies experience living with a disease including spinal cord injury [8], Ebola [9], chronic pain [10], HIV [11], heart disease [7], and post-natal depression [12] as well as how patients interact with health services [13].
Setting
The research was conducted in a purpose built 42-bed ABI inpatient rehabilitation unit in metropolitan Australia which is a part of a level one trauma tertiary teaching public hospital. The unit was opened in 2014 and the interviews occurred from April 2016 to January 2017. Local Ethics Committee approval was granted and local ethics processes were adhered to.
Participants
Potential participants were screened by their admitting social worker to ensure that they matched the inclusion/exclusion crite- ria. Inclusion criteria included; having an ongoing relationship with the person; being in a position to visit regularly, and able and consenting to participate in the drawing and interviewing. Significant others were excluded if it was anticipated their loved one would have a length of stay less than one month; if the sig- nificant others were perceived to have a relationship which sug- gested potential conflict or relationship breakdown, and if the significant other was based far away or overseas and was likely to visit only occasionally. An anticipated length of stay of less than one month was included in the exclusion criteria as it was felt that any shorter would not allow for screening, confirmation of inclusion/exclusion criteria, recruitment, and participation of the significant other prior to the loved one being prepared for dis- charge. Significant others had to be involved in the loved one’s life at the time of admission (i.e., free of obvious conflict or loca- tion issues) so that they could actually describe what the rehabili- tation experience was like. Significant others were only included if this was their loved one’s first admission for this injury at this or
other centres, so that the experience of the significant other was not influenced by previous admissions. Estimated length of stay was determined from admission functional independence meas- ure (FIM) [14] scores.
A convenience sample approach was taken. All patients admit- ted were considered, regardless of injury aetiology, to reflect the diversity of the people who undergo rehabilitation at the service. Social work staff approached significant others they considered met the inclusion criteria, they did not invite significant others they perceived as being too stressed to participate. Of 11 people approached, 9 accepted. The two people who declined were not interested in participating. Participants were provided written information about the study and all consented prior to the inter- view process. The study was conducted in Victoria, Australia, where patients involved in traffic accidents or workplace accidents are eligible for compensation.
Data collection
Each interview included two methods of data collection; an inter- view, and a drawing plus description of the drawing. The inter- viewer (DF or JS) was not a member of the loved ones treating team at the time of the interview. The interview was conducted using a set of pre-determined questions recorded in a quiet room, close to the ABI unit to minimise disruptions. At the end of the interview, the participant was asked to draw a picture to reflect their experience of being a significant other of someone with an ABI. They had a choice of coloured pens or pencils and were given as much time as they required. Once the picture was completed they were asked to describe the picture. This picture description provided data that enabled the researchers to under- stand the participants’ interpretation of the drawing during the data analysis stage [7].
Data coding and analysis
De-identified interviews including the participant’s comments about their drawings were transcribed by an external transcription company. The spoken data from the interviews but not the draw- ing description was analysed using a six phased-thematic analysis framework [15]. Two researchers independently (MC & DS) fami- liarised themselves with the interview data and initial coding was completed. Codes were then sorted into potential themes, which were then reviewed and refined. The two researchers then met and compared results to finalise a list of themes. Quotes from the participants were chosen to represent the themes based on how well they captured the theme with care taken to include all par- ticipants’ voices.
The figure analysis used questions proposed by Guillemin [7] which examined the contents of the drawings and were based on Rose [16] visual representation interpretation framework. Researchers JS and DF undertook this analysis. Aspects of the pic- ture the researchers focused on when analysing the drawings included; the use and possible significance of colour; relationships between the drawings; what the drawings represented, and was there any elements of contradiction [7]. These questions were independently applied to the pictures by two researchers. The researchers had access to the transcripts of the picture descrip- tions and included these comments in their analysis of the pic- tures to support analysis of what the drawings represent. The two researchers then met and achieved a consensus in the themes. Interview themes and picture and picture description themes were then reviewed by researchers MC and DS in order to develop an overall comparison and contrast of the themes from each analysis type.It was clinically impractical that either the loved ones or signifi- cant others were unknown to all of the research team by the time the data was collected for coding. However, at least one of the encoders did not work clinically with the loved ones or signifi- cant others.
Results and discussion
Nine significant others of loved ones with a severe ABI were recruited. Demographic information is presented in Table 1. Of the nine interviewees, eight were female, four were parents, three were wives, one was a daughter, and one was an ex-partner. The loved ones with ABI had suffered a traumatic brain injury (n 4), a stroke (n 2), an aneurysm (n 1), encephalitis (n 1), or an hypoxic brain injury (n 1). The loved ones mean age was 42.78 (range 17–76), mean days in acute pre-admission to rehabilitation was 69.56 (range 27–121) and mean FIM score on admission was 51.33 (range 24–71). Of the nine participants, two were eligible for compensation. Given the diversity of our population, we were unable to subgroup any of the data for further analysis. A satur- ation log identified that saturation began at the sixth interview. Additional collected data allowed confirmation of saturation and further examples to illustrate themes. We did not conduct satur- ation methods prior as not to risk bias into interpretation. Guest et al. [17] stated that between six and 12 interviews can be enough.
The study aim was to explore what it is like for a significant other to have their loved one with an ABI enter inpatient rehabili- tation. Overall seven themes – some including subthemes – were identified which represented the experience for significant others. These themes were: trauma; relief; interactions; change; grief and loss; journey and uncertainty. The themes identified were not pre- sent in isolation and often they interacted and overlapped with one another. The pictorial data provided information that was not captured in the interviews, providing strong content for two of the themes in particular (grief and loss and journey) demonstrat- ing that the drawing method can complement and add useful information for researchers to explore lived perspectives. From nine pictures completed during the interviews, eight are included in this article; one of the drawings was excluded due to the poor quality of the drawing. It was observed during the interviews that it was difficult to get the significant others to shift from their loved ones to themselves. However, the drawing method allowed them to reflect on their own experiences and feelings in a differ- ent way. The themes identified are following.
Trauma – it’s very, very upsetting
This theme emerged in response to the opening question, which was “Can you tell me a little bit about your loved one, and why they are in ABI rehabilitation?” Apart from one participant who provided limited details okay well he had a car accident … , partici- pants seemed willing to tell their story, and spoke in detail about the difficult experience they had been through, and how shocking and sudden the initial event was. Comments from significant others that capture some of their experiences include; He was in ICU for three weeks; Will he die on the table?; They hit a pole and the driver died; She collapsed at home; Whatever affects him, affects me; and I mean, I was just in absolute panic. A wife reported … without realising and thinking too deeply about it, it’s very, very upsetting to you mentally, and a mother stated So I was like, what?
What do you mean, go and say goodbye? It’s just crazy. These experiences appeared to inform the early ABI rehabilitation experience and how the significant others felt when they finally arrived at rehabilitation with their loved one. Significant others spoke about having been on a roller coaster and consequently still dealing with the impact of the acute experience, for example, … for the past four months I was like any phone rings I used to panic and think what it is? and my son said to me, mum, if you don’t stop, you’re going to end up in a bed next to him or even worse. Trauma was evident in the pictures symbolically, including faces crying or upset (Figures 1 and 2) a broken heart (Figure 3) as well as the use of dark colours to express current emotional states (Figures 1, 2, and 4).D’Cruz et al. [18] state that healthcare professionals and mem- bers of the community are encouraged to support story-telling of those living with an ABI. They suggest that an audience enables people living with ABI to validate their experiences and belonging within the ABI rehabilitation environment. Our study showed that the significant others had their own narrative and stories to tell. Significant others in this research appeared to welcome the opportunity to share and tell their story. While story-telling was not explicitly explored in this study, it is worth considering further as a means for significant others to feel validated and reflect on their experiences.
Relief – but here, I feel more relaxed
Emerging from the discussion of the injury, significant others reported an experience of intense relief when asked what it was like to be at the ABI Unit. Participants noted they and their loved one felt more relaxed, But here I feel more relaxed, and they also spoke about relief Relief, I guess. Relief, of course (at being here). This had two aspects; the purpose built environment, and the expertise of staff. A significant other whose loved one had behav- iours of concern noted … the unit being here was helpful – it’s helpful in that it’s a purpose built unit for somebody who has acquired a brain injury, while another reported it’s been perfect, I feel like even her room setting has been good because it’s nice and quiet. She’s close to the dining room and the kitchen, laundry. Other significant others noted the newness and cleanliness of the building; one reported that being able to bring in their dog was marvellous. The newness of the facilities impressed it’s beautiful. I love it. I was amazed, to be honest, when I came here, and Well it’s just a nicer environment I think. Expertise in ABI was valued by the significant others and contributed to their experience when they arrived at the unit; probably less stressed because I know that everyone’s trained in ABI … it’s comforting to know; and it has taken pressure off me … I know he is well looked after here. Having access to a specialist environment with specialist staff was a source of comfort for the significant others. Although not every environ- ment can be new, from the significant others perspective, it is reassuring that the environment is set up for their loved ones and that staff are trained and experienced in ABI rehabilitation. Only two pictures contained items easily identified as symbolic of hos- pitals; Figure 5 – a bed, and Figure 6 – parallel bars and a wheel- chair. The verbalizations of why people were relieved were not portrayed in the pictures.
Interactions – it’s two-way
The interactions significant others experienced during their loved one’s rehabilitation were important. Interactions as a theme included two subthemes: interactions (attitudes and actions – and what these communicated) and interactions (processes).
Figure 1. Drawing with annotations for each of the three elements; a small house, tunnel, and sun.
Interactions (attitudes and actions) included when staff atti- tudes and actions were described as; enthusiastic everybody’s very enthusiastic; kind But here it seems the kindness is magnified, more than you expect; friendly, You come in and you enjoy coming in and everyone is hello when you come in and everybody is friendly, and patient They’re very patient. I’ve never seen anybody pull a face behind anybody’s back at all and I’m very observant. These attitudes and actions positively shaped the experiences of the sig- nificant others in the rehabilitation setting and provided a sense that interactions were two-way. This was important to the signifi- cant others because it supported them to feel empowered; It is two way communication which the patients also have to participate and the family because it’s – at the end of the day it is a family who’s going to take the cause of it and every decision and every- thing; and informed it’s just we’re all on the same page and it’s been amazing. Duff [2] stated that positive family and clinician interactions make the hospital experience better, and when nega- tive interactions occur, significant others can feel forgotten, patronised or even more stressed. Consistent with this, when a negative breakdown in interactions occurred in this study, signifi- cant others reporting feeling stressed, particularly about leaving their loved one in the evening and not being sure care needs would be met when they were not there That’s when I started getting stressed out because I don’t think he’s – I just think – well, I mean, he’s not getting changed. What’s happening when I’m not here? Positive interactions enabled the significant others to trust the staff more.
Interactions (processes) emerged as particularly important to significant others and included family meetings and timetabling. When these processes were not undertaken, or were not under- taken in a planned or structured way, significant others reported feeling frustrated and unclear about what the plan was for their loved ones care. Processes like family meetings were valued by significant others we had a big meeting with everybody and I got to talk to everyone and ask all the questions, and that was fantas- tic. However, when this did not occur it was a source of frustra- tion I would have thought … that I could have a meeting with them and they would say, now this is what we’re going to be doing for him and everything, but that hasn’t happened. … it should have. Timetabling was also perceived as important by participants, and it was important that the timetable reflected what was happening in their loved ones day; one significant other noted Well I don’t know exactly what is happening with him, what he’s doing and another commented His physio is at 10 o’clock but he’s not out of bed. Timetabling being accurate resulted in significant others being able to plan their time and potentially have a break or attend to their other family commitments I might sort of look at that (the timetable) and say, right, if I know someone else (is here) -
Figure 2. Drawing showing storm clouds, sad and happy faces and a door with question marks.
Figure 3. Drawing with written annotations surrounding a picture of a broken heart and sad face.
I might have a day off soon. Another significant other commented I’m still not spending as much time at home, but the plan is that once I know what his routine is here, then I can make a routine at home. Not knowing what their loved one was doing while the sig- nificant other was away increased their stress. Interaction with staff, timetabling, or meetings did not feature in the pic- ture analysis.
Change – everything (has changed)
The theme of change emerged as a strong factor in the experien- ces of the significant others. Change was evident in their experi- ence of; their roles within family and friend relationships and how they perceived these relationships; the practical tasks they were and were no longer able to undertake, and the physical and personality changes demonstrated by their loved one since the injury.
Figure 4. Drawing of a circle with a treadmill inside it.
Loved one’s experiences with friends and family during this early period of rehabilitation were complex and were impacted by changes in roles. Balancing this change in roles appeared to be a challenging experience for significant others. Two mothers spoke of how their lives had changed to prioritise their unwell child I can’t go nowhere, and I told everyone I can’t, I’m not – I’m not leaving here and at the moment he needs me more than they do. When family or friends stepped in to offer support the changes significant others described feeling grateful, and relieved she … stayed for two weeks. Made sure I ate. Made sure I looked after me and she has been a great support for me because I’m able to stay at her house. Support from friends and family was import- ant to significant others practically and emotionally during this period of change we’ve been very blessed and fortunate … the school has been supplying us meals for all this time and I’m lucky to have family friends who are very supportive of my decisions. In some cases, the absence of visitors appeared to add to the signifi- cant others stress and sense of loss and changed their view of their friends All these people that he did so much for, they never came up, and from the same significant other one of my friends who I thought was a good friend, she was two doors’ walk from me, I haven’t seen her once since this has happened.
Figure 5. Drawing of a room with a bed two people and a dog, with a rainbow in the sky.
Figure 6. Drawing of a wheelchair, parallel bars, and annotations.
The practical impact of changes in the significant others life since becoming a regular hospital visitor included the costs in time and money related to travel distance, car parking, and phone bills; the travel is really hard, and it’s a heavy pocket (paying for parking), and my phone bill is astronomical. Not being able to undertake usual home and family duties were stated as changes by the significant others I don’t even have time to clean the house properly, or cook and my daughter, she’s about to have a kid. Haven’t been to no appointments and It is all stress … I’m running two households and I’m trying to do his washing and drying. Having to take on new duties was also reported as a change such as doing banking for a daughter who had been financially inde- pendent, taking on gardening when this had been the partner’s role previously, and making decisions I’ve had to take over a lot more of the decision making … normally at home we talk about things together. Having to take on a hands-on caring role was reported as a new experience for some of the significant others as well I’ve washed him here, I’ve helped him on the toilet … Whereas at home he wouldn’t have let you … It’s very different.
Each significant other described changes in their loved one with the brain injury. Their experience of these changes seemed to be informed by the personality of their loved one prior to the injury, the relationship they had with the person, and the life they had together before the injury. One wife described how her hus- band was previously a “people person” who now didn’t want to see friends, and an ex-partner reported there’s something about him that’s totally different from how he was before … . A wife spoke of the active life they had together so really we are very much a couple and how this may have to change. A parent praised their child for being independent and capable, and derived hope that even though she may not recover fully, she’s a smart enough cookie that she will work around and minimise the impact of those deficits. A mother described how the hardest change for her was him not being there. This mother also reported being concerned about changes in her son’s physical needs he can’t even go to the toilet himself and being unable to make sense of personality changes he’s just making up stuff I know that is not true and it’s really weird. A daughter expressed a tremendous sense of loss at the change in her mother, who previously was caring about everyone else, always put herself last. This daughter summed up with I guess she’s not the same person … she’s been my person to go to, now it’s kind of the opposite.
Change was also identified within the significant others themselves. Significant others reported changes to their personalities and wellbeing through statements such as I just cry for nothing; It has made me more impatient and It has changed my focus at the moment … this is just life as normal. Emotional changes were rep- resented in the pictures through participants writing words (e.g., Figures 1 and 3) rather than through the actual drawings, how- ever, change in their loved one was not identified as a pictorial theme. Nevertheless, change of self was not consistent with all participants as one stated I don’t think I’ve changed that much. I think I’m still the same.
Grief and loss – isolated; sad; fearful; lonely; hopeful; and tired
Grief and loss were discussed broadly in the interviews and was captured visually in four out of nine pictures. Pictures expressing grief involved drawings of people with frowning faces, tears, or no features at all (Figures 1–3). Dark colours were used to express negative emotions and featured in most of the pictures e.g., a black treadmill (Figure 4), dark-coloured crumbling staircase (Figure 7), dark clouds, and gray rain clouds (Figure 2), black beginning of a pathway (figure, not featured), and a tunnel (Figure 1). Two out of nine participants annotated emotive words, in Figure 3(a) mother wrote loss of time; upset and sad; miss son being the way he was while the other annotated her picture (Figure 1) with the words isolated; sad; fearful; lonely; hopeful and tired. The visual descriptions of missing family are perceived by the researchers to represent feelings of grief and loss. Verbal descriptions of grief and loss were not used by these participants in the interviews.
Journey – getting through the tunnel and getting to the light
The sense of a journey was strongly depicted in the pictures, with the sense of hope through that journey present in both the inter- views and pictures. Many drawings included a type of pathway that conveyed a journey (e.g., a rainbow (Figure 5), a circle (Figure 4), stairs (Figure 7), or showed a picture progression that illustrated change over time. Drawings which reflected journey progressed from a dark (black/grey) colour on the left of the page to a lighter colour (yellow) on the right (Figure 2 and Figure 8). These illustrations represent the loved one’s experience of transi- tioning from the difficulty and trauma of an acute injury to the beginning of rehabilitation and beyond. They also reflected their hopes for recovery and a bright future. Further drawings of jour- ney include roads, stairs, and doors e.g., it’s me or my dad stand- ing at the end of the tunnel looking down and hopefully there’s light at the end (Figure 1). Four of the pictures reflected the ups and the downs of their lived experience that’s a stairway, that tracks down quite hard and disappears somewhere … and (this is) a ladder which is quite hard to climb on the other side (Figure 7), and getting through the tunnel and getting to the light (Figure 1).
Previous literature has talked about long-term traumatic brain injury survivors having hope, even when hope is diminished in health professionals and that carers play a significant role in the narrative of hope [19]. We can see that significant others on admission to rehabilitation are full of hope and have taken com- fort in improvements already seen in the acute stages. The sense of hope gained from seeing even the smallest of improvements was something they valued and was represented in both the ver- bal and pictorial data and consistent with other studies [1]. Participants discussed how seeing improvements in their loved one resulted in a sense of progress. Significant others referred back to initial signs of improvement in ICU and the acute phase and how improvements at these stages were important in provid- ing hope for the future it was a slow progress for them but for us it was a big impact on our lives. Significant others reported that observing and finding hope and encouragement in small changes offset some of their fears about the future I felt that there was a little improvement every single day. I sort of sense it; so I’m very optimistic that I’ll get him back to how he was (laughs); and the challenge or fear is that she won’t get better … but in the time she’s been here, I’ve seen continuous improvement. Given this, hope appears to play an important role in the experience of the signifi- cant other, even though it may vary from family to family. For those working with the loved ones and the significant others, it may be beneficial that clinicians acknowledge that the hopes of significant others might be very different to their own profes- sional goals for the patient.
Entering into rehabilitation is not seen as an independent act by significant others. It forms part of the loved one’s journey post incident. This was identified from the detailed retelling of life in the acute hospital in the verbal interviews, the high use of jour- ney symbolism throughout the pictures, and then looking forward and discussions of hope both in the pictures and in the tran- scripts. After going through a traumatic experience, inpatient rehabilitation is a new environment for significant others and they appear to need professional support as they and their loved one make the transition. Therefore, entering a phase of recovery (whether it be ICU, acute, inpatient, or outpatient rehabilitation) should not be seen as separate points in time for significant others but a seamless journey.
Figure 7. Drawing of a cliff with two crumbling staircases going upwards, with a sun in the distance.
Figure 8. Drawing of three tress alongside a wide pathway to a door, with a sun in the sky.
Uncertainty – you’re in a dark place and you’re gloomy and there’s all uncertainty
Representations of uncertainty were present in three pictures with the use of question marks (Figure 1), closed doors (Figure 2), and two different pathways leading to two different destinations (Figure 7). These drawings reflect feelings of uncertainty about what the future holds for the significant other and their loved one. Figure 2 depicting a door with three adjacent question marks was described by the significant other as … you go through the door that takes you home. But then there’s still uncertainty when you get home … . Figure 4 shows a treadmill going in a cycle and sur- rounded by a circle, the significant other said; when things are bad, it’s backwards. Then just start the slog forward again and then something happens and it goes backwards. It’s just this back and forwards the whole time. This sense of uncertainty is recurrent in the literature in describing significant others experiences in the acute phases [1,2] and now it can be seen also present for the sig- nificant other as their loved one enters rehabilitation.
Implications for clinical practice
Oyesanya [1] states that families during the rehabilitation phase have clear expectations of clinicians including; being listened to; receiving support and information, and being prepared for self and family management of the injuries associated with the ABI. This study’s findings are consistent with this. Knowing this is important for clinicians working in this field. Workplace policies, practices, and training can be evaluated against this information and changed accordingly. For example, new staff members may receive orientation with opportunities to build skills in compas- sionate information giving or motivational interviewing and given that compassion fatigue is a factor for healthcare professionals [20], longer serving staff may benefit from ongoing training and support to provide compassionate interactions. Additionally, many of the participants held trauma over from their intensive care and acute experiences so staff training in these areas in providing compassionate interactions would also have benefits for signifi- cant others. Further training and education opportunities could also focus on the significant others as well including support groups, peer support, practicalities of dealing with health services, and self-care.
There were many comments made about the importance of the way staff interactions were undertaken. Staff interactions that were kind, respectful, and friendly were highly valued, and significant others reported that communication opportunities such as family meetings, pre-admission tours, consistency of information, timeta- bles, and staff taking time explaining things led to less frustration. It appears that having a dedicated staff member, with enough allo- cated time and the right skills, to support the significant others when they arrive at rehabilitation is valuable in decreasing stress and disseminating information. Timetables were valued so that the significant others knew that loved ones were accessing the care and therapy they needed and so that the significant others could plan other aspects of their life around what was happening on the ward. The clinical implications from this suggest that rehabilitation teams need to ensure that there are ongoing opportunities to communi- cate with significant others are utilised as soon as possible and that loved ones have access to timetables that are correct and reflective of the rehabilitation schedule. This is consistent with Oyesanya [1], who stated that receiving information and being listened to were expectations of people with ABI, and that it was important families were included in interdisciplinary meetings and goal setting. Knowing that staff specialised in ABI rehabilitation is a big relief for significant others as they believe their loved one is better off in a specialist ABI centre. Not only should staff be recruited on their technical skills but also on their abilities to be compassionate and strong communicators. While travel was raised as an issue, it was secondary to knowing that their loved one would be receiving spe- cialist ABI rehabilitation. Our participants have described support from others, both practical and emotional, as being valuable. Clinicians should assist family members on how to best access this support whether formal or informal.
Meaningful and relevant education should continue throughout the recovery post-ABI [21]. Kreutzer et al. [22] found that informa- tion on behaviour management and cognitive impairment were a priority for families, as well as honest and understandable informa- tion, and access to psychological support. Our research, over 20 years later, reflects that these needs do not seem to have changed. Good communication and a positive ward environment are behaviours that staff can contribute to easily. When staff behaviours do not meet expectations of significant others, significant others report increased stress. Expectations and information dissemination should be a discussion point on admission to rehabilitation.
We identified that significant others welcomed the opportunity to talk about their experience prior to admission into the ABI unit and express the trauma they had experienced. Even though the significant others were more relaxed on admission to the ABI unit than in the acute environment, they still were grappling with feel- ings of uncertainty and grief. Significant others had already been through extensive trauma and change as reported in our inter- views. They were still trying to make sense of this change as their loved one entered rehabilitation. The idea that it is important for significant others to tell their story warrants further investigation as a means of supporting them to validate and reflect on their feelings. Given this, significant others should be provided oppor- tunities to access support and counselling for their own emotional wellbeing separate from that received by the loved one.
Hope plays a crucial role in the narrative of significant others, and they hold onto this very closely, particularly at the beginning of rehabilitation when there is so much uncertainty. Clinicians working in the ABI field need to be mindful of the importance of hope which significant others hold on to strongly. Hope is differ- ent from optimism and faith [23]. The participants in this study have recently arrived to rehabilitation from acute care and are still undergoing a period of uncertainty, not unlike their experience of intensive care [23]. Our participants valued information and it has been shown that when information is given compassionately hope is increased and hope enables better coping and resilience in families of patients with severe ABI [23].
Implications for future research
We have discussed that our results are consistent with much of the reported themes over many years but also have added some new findings. The challenge now is not just to explore the experiences of significant others but to investigate which interventions can improve the experiences of significant others. Are there specific interventions the ABI team can undertake to assist significant others to manage the burdens of having a loved one in rehabilitation? It would be valuable to know how significant others’ experiences evolve over the rehabilitation journey especially when the rehabilita- tion journey may be many months. From this, healthcare professio- nals may be able to adjust inpatient support and interventions to meet changing needs and experiences as the role of significant others evolves. There is recent work in this area which focuses on training staff to support people in rehabilitation, which is important given our findings in the theme of interactions [24,25]. Further research which focuses on subgroups considering injury severity and other factors (e.g., parents vs. spouses, causes of injury or pre- existing co-morbidities) would highlight how experiences may differ for different groups with ABI and their significant others, and whether different support or interventions may apply. As mentioned earlier, hope is an important construct to support coping and resili- ence in families of patients with ABI [23]. It would be valuable for future research to investigate clinicians and significant others inter- actions and ascertain what type of styles support hope and resili- ence in early stages of ABI rehabilitation.
It was found that the drawing method was an important com- ponent of the data collection as it provided additional data and allowed an additional way for significant others to share their experiences. The drawing method should be considered for future research to augment spoken data collection in ABI. Further direc- tion on how best to use this methodology is recommended.
Limitations
Oyesanya [1] suggested focusing on populations where causes of ABI injury (e.g., traumatic brain injury vs stroke) differ or sub- grouping the loved ones into age groups. We did not target one specific aetiology or age as we wanted to be inclusive to all peo- ple who enter the ABI unit. Further, we did not target a subgroup of significant others (e.g., wives) so were unable to explore differ- ences between significant other groups, by relationship. Timing of interviews was problematic. Although we had intended to do the interviews closer to the admission, the mean time was 21 days post-admission due to the time it took to arrange interviews because of busy timetables for both the participants and researchers. This meant the very early experiences (i.e., in the first two weeks of admission were not captured). Further, due to social work staff screening out significant others who demonstrated high levels of stress, the experiences of these significant others are not captured in the data and may mean we have missed this cohorts’ experiences. A final limitation is that this research occurred in one, new, purpose-built ABI unit which means signifi- cant others responses relating to the newness and customisation of the environment may be less applicable to other centres.
Conclusions
We interviewed nine people who had a loved one enter an ABI unit for the first time and asked what was it like for them to have their loved one arrive in rehabilitation with a severe ABI. Overall, seven themes were identified, of which five were evident from interviews and two more predominately from the drawing method. The whole experience for the significant other is traumatic as they try to understand changes to both their loved ones and their own roles. Healthcare providers have a key role in supporting significant others as their loved ones enter rehabilitation, especially in terms of providing respectful, kind,ECC5004 and effective interactions.