Finding a new balance in life: a qualitative study on perceived long-term needs of people with acquired brain injury and partners

ABSTRACT

Objective: Although the long-term consequences of acquired brain injury are frequent and diverse, care and support over the longer term is an under-addressed issue. This study aims to identify the perceived needs of people with acquired brain injury and their partners.

Methods: Interviews with four focus groups of people with brain injury (n = 17) and three partner groups (n = 19) were audio- and videotaped, transcribed verbatim and analyzed using inductive content analysis.

Results: Needs were perceived on the intrapersonal, social, healthcare and societal levels, focusing on three themes: 1) Adaptation to changes, including awareness of consequences, acceptance, role changes and dealing with these; 2) Understanding from relatives/friends, professionals, institutions and society; 3) Timely, individualized care, involving information, transition to home, searching for support, peer support and support for partner/family.

Discussion: The variety and complexity of needs show that people with brain injury and their partners need to find a new balance in order to live a fulfilling life despite the consequences of brain injury. The overarching need for continuity of care from the transition to home onwards provides important implications for supporting the process of learning how to live well with brain injury.

KEYWORDS:

• Brain injury
• stroke
• needs
• psychosocial
• chronic

Introduction

Survival rates of people with acquired brain injury (PwABI) have increased in the last decades due to the improvement of acute medical care (1,2). Living with brain injury, many experience problems in the longer-term problems, which are often primarily psychosocial in nature (3–8). They include difficulties with interpersonal relationships, work, leisure activities, personality changes, behavioral problems, cognitive deficits and emotional problems (1,6,9,10). New difficulties may even emerge in the long term due to changing circumstances (6,11), for example, when one loses their caregiver and loses support or when one becomes a grandparent but experiences difficulties with caring for their grandchild. Long-term consequences of stroke not only affect the autonomy and well-being of people with brain injury but also impacts family members, specifically partners, who usually fulfill caregiver roles after the brain injury of their loved one (12,13).

In the Netherlands, different forms of care and support for longer-term problems are available and provided by several disciplines, such as psychologists, medical doctors, social workers and physiotherapists. However, there seems to be a mismatch between the available services and the actual day-to-day needs of PwABI and their families in the long term (14). Unmet needs for PwABI as reported in the literature involve understanding the injury, improving emotional difficulties and stress, activities of daily living, communication and finding employment (6,15–18). In addition, PwABI have difficulty finding and accessing services to support them with these issues (16–19). Partners may have needs in direct relation to the problems of the PwABI, such as coping with behavioral and emotional issues, but they also have needs of their own, including respite from caregiving and emotional and social support (13,15,18).

Many studies on needs covered a time span limited to the first few years after the injury (17,20–22), but there is limited research on longer-term needs of PwABI and their partners residing in the community. Studies on longer-term problems are of a less recent date (15,19). Organization of care is subject to continuous change, with an increasing importance being placed on the perspective of the service users. According to the 2018–2030 Action Plan for Stroke (23), more research is necessary to elucidate the needs of patients and carers in order to guide current innovations in the provision and organization of care services. Therefore, the current study aims to complement the existing literature by qualitatively exploring the perceived long-term needs both of PwABI and of their partners. In this study, discussions on care needs were embedded within topics of living with brain injury or with a partner with brain injury to elucidate day-to-day needs and corresponding health-care needs.

Methods

Participants

Recruitment took place between October 2016 and May 2017 via hospitals, patient organizations and professional service coordinators in the province of Limburg, the Netherlands and via flyers on social media. Patients were eligible to participate if they are aged 18 or above, whose brain injury occurred over six months ago, who were living at home, able (e.g. no severe aphasia) and willing to discuss their personal situation in a group and had no physical/mental problems unrelated to the brain injury that caused needs more profound than those caused by the brain injury. People with neurodegenerative disorders were excluded. Partners were eligible when the injured partner fulfilled the criteria above (except for the criterion regarding aphasia). Two partner focus groups were formed by a convenience sample of recently finished therapeutic partner groups (psycho-education and peer support groups led by a psychologist). For the brain injury groups and a third partner group, we used maximum variation purposeful sampling (24) to ensure a sample with a wide range of characteristics (e.g. different age, time since injury, type and severity of injury).

After the study procedure was explained, written informed consent was obtained prior to participation. The medical ethics committee of Maastricht University Medical Center approved this study (METC 16-4-196.2/ivb).

Procedures

Four brain injury groups were planned, as research suggests that most issues around a research topic will be captured after the fourth group discussion (25). Three partner groups were planned because we expected partial overlap with the themes of the brain injury groups. Prior to the focus groups, participants were asked to prepare a letter with tips for another person with brain injury or partner, to elicit thoughts and feelings about living with brain injury or with a partner of brain injury and facilitate the revelation of information during the focus groups (26).

The moderator (CvH) used a semi-structured topic guide including questions on the experiences of living with (a partner with) brain injury, problems encountered, types of support needed and received (see Supplementary Material). During the discussion, the moderator briefly summarized the key points for obtaining participant verification (25). About halfway in the discussion, participants were provided with 25 pictograms reflecting several life domains and common problems after brain injury, including blank cards on which themes could be added (based on Boots and colleagues (27), see Supplementary Table 1). Participants were asked to select themes that were most important to them personally, which were then discussed further. The interviews were audiotaped and video recorded. A second researcher (APMS) took additional notes, to ensure the identification of potentially relevant non-verbal information or cues presented by the participants. Each meeting had a duration of approximately 90 minutes. Participants received a small participation fee (€10,00).

Data analysis

Audiotapes were transcribed verbatim and combined with the video observations and notes. Transcripts were analyzed independently by authors APMS and IW using the qualitative analysis software ATLAS.ti (version 7.0). The texts were read thoroughly and open codes were applied to all aspects of the content (29). Inductive content analysis was applied, identifying categories and higher-order themes by inductive reasoning and constant comparison (30). APMS and IW compared and discussed their analysis until consensus was reached. Interpretation and integration of categories into themes were discussed further and finalized with CvH and MdV. Quotations were selected based on representativeness by APMS, verified by IW and CvH and all authors checked their relevance. APMS and IW independently checked and confirmed saturation (i.e. no new themes emerging (24)) after seven groups.

Research team and reflexivity

The discussion was lead by a professor of clinical neuropsychology (author CvH), whose work centers around the neuropsychological consequences of brain injury, in particular stroke. The researcher who assisted during the focus groups and analyzed the data is a postdoctoral researcher (neuropsychologist) who new to the field of brain injury at the time of the focus groups and has a background in psychosocial research in psychiatry (author APMS). Author IW, who also analyzed the data, is an assistant professor whose research is mostly on insight in daily functioning after brain injury. These three authors work as researchers and do not have experience working as clinicians. The broader research team involved two professors with a background in neuropsychology combining research with clinical work, both with extensive clinical experience.

The research topic was chosen to guide future research of the research group into improving care after brain injury in the long term. The authors assumed that unmet needs would exist and in particular regarding invisible consequences, but naturally, they tried to prevent these personal assumptions from influencing the discussion to avoid bias. The interaction between the researchers conducting the focus groups was in most cases limited to the focus groups and the organization thereof. The discussion leader and the assistant researcher were each acquainted with one patient and one partner prior to the focus groups, in a professional context (i.e. from meetings in which the patient/partner participated as ‘experience experts’).

Results

Participants

Four focus groups of PwABI (n = 17) and three partner groups (n = 19) were held. Demographic characteristics of the participants are shown in Table 1. PwABI were divided over four focus groups in which two groups involved people with stroke (a more severe group with people who had received inpatient rehabilitation and one less severe group without) and two groups involved people with traumatic brain injury (again two groups differing in severity based on inpatient rehabilitation). For the partner groups, such a distinction was not made since we used a convenience sample of existing therapeutic groups, who were mixed with regard to the severity of the injury of the PwABI.

Table 1. Characteristics of participants.

	People with Acquired Brain Injury (n = 17)	Partners^a (n = 19)
Age (mean, sd)	57.1 (10.8)	60.2 (7.6)
Gender, nr. Male	7	6
Education level^b	5.7 (0.6)	5.4 (0.5)
Living situation (person with brain injury), nr Alone With partner With partner and child(ren) Rehabilitation clinic^c	6 8 3	-13 5 1
Type of brain injury, nr^d Hemorrhagic stroke^e Ischemic stroke Traumatic brain injury Brain tumor Auto-immune infection	4 5 8	3 9 4 2 1
Years since (first) injury (mean, sd)	10.0 (7.6)	5.9 (6.0)

^aData on type of brain injury and time since injury refers to the PwABI

^bEducation level according to Verhage (28)

^cOne partner of a person with brain injury receiving inpatient rehabilitation at the time of the study was included in the convenience sample of an existing partner therapy group as the therapist deemed it therapeutically undesirable to split up the group (codes specific to this situation were not included in the analysis as the focus of the study lies with community-dwelling PwABI).

^dIn the case of multiple injuries, the first injury in adulthood was noted.

^eOf which one was a subarachnoid hemorrhage.

Content analysis

The analysis indicated a metatheme of ‘finding of a new balance in life,’ reflecting the process of learning to adapt in a variety of life domains in order to live a satisfying and fulfilling life, despite the consequences of brain injury. Three subthemes were identified capturing experiences of both PwABI and partners and covering an intrapersonal, social, health care and societal level: 1) adaptation to changes, 2) understanding, 3) timely and individualized care. For an overview of these themes and the underlying categories, see Figure 1. These themes were identified across the type of injury (stroke or traumatic brain injury). The themes were the same for both PwABI and partners even though specific expressions relating to the theme were sometimes different. In the text, the use of the word ‘participants’ indicates that both PwABI and partners made the statements presented here. When the text is only based on expressions of either PwABI or of partners, this is described as such. A few categories within themes were unique to either PwABI or partners, which is indicated below. The quotes are clarified by placing missing words and irrelevant content between brackets.

Figure 1. Themes and categories divided over several levels. *Category emerged only from partner focus groups, **Category emerged only from brain injury focus groups.

Adaptation to changes

Awareness of the consequences

PwABI said they were often not aware of the persisting nature of certain problems (physical, cognitive and emotional) until they experience a lack of improvement in functioning in daily life. But PwABI want to discover the limits of their recovery themselves; in their experience, professionals emphasize the boundaries of recovery rather than focus on their capabilities and supporting them in achieving their goals. Partners state that they are more aware of problems than the PwABI and that these different views lead to tension and conflicts in the relationship.

So very often now I feel that it’s not working and then I say “Let’s get out of here, okay” […]. And then an hour later I say [to my husband] “That was really nothing, right – it was too busy, right” – [And then my husband says] “Well, it didn’t bother me” […] And then the whole thing is just denied. (Partner2; female; 9 months since PsWABIs stroke)

Process of acceptance

Acceptance was described as incredibly difficult or even impossible. Generally, participants viewed acceptance as learning to let go of the old life and the old expectations and dreams for the future. Partners found it difficult to accept that their spouse is ‘not the same person anymore’ and to let go of activities they used to do as a couple. Some participants regard acceptance as ‘something you need to go through’ and wondered if support would even be possible. Others said that they have ‘accepted that they will never accept’ what happened and to keep fighting to get better. Participants indicated that understanding the changes would benefit the acceptance process, partners specifically their loved ones’ lack of insight in this regard.

I have the feeling that if I accept [my situation] I’m giving in. That if I’m not hitting back, I’m not fighting. And I try – even though it might sound crazy – every day I try to find something […] to make it a little more bearable for my partner, and for myself. (Partner8; male, 13 years since PsWABIs stroke)

Learning how to deal with the changes in daily life

PwABI with a longer time since injury said to have struggled with reconstructing their lives because they did not receive formal care. Most PwABI learn to use compensational strategies and to find a balance in activities that require and boost energy, and some mention that such adaptation is required for life. They would have liked to receive practical support aimed at functioning independently and vocational support (an example mentioned was a job coach) as meaningful daytime activities are extremely important to them. Partners struggle with coping with the changes and they said to feel unable to continue the demanding caregiver role for long periods of time if they do not receive support in dealing with the changes.

Role changes within the relationship and family

Most partners said to provide practical and emotional support, handle financial issues and play a major role in contact with services. The shift in tasks and roles leaves some partners feeling like ‘carer and patient’ rather than equal partners. PwABI who have a partner usually mention the support of their spouse is unvaluable, although less successful adaptation of the partner was also mentioned. Both PwABI and partners expressed that they would have wanted support in dealing with role changes, including communication, intimacy and sexuality.

Before the stroke I really wore the pants. […] Until I couldn’t anymore. And then, then it happened – an earthquake in our house. But we have withstood it wonderfully. And now we have found our balance again, after ten years (PwABI8; female, 10 years since stroke).

Personal time (category based on partner groups only)

Partners said to recognize the importance of taking a break to keep themselves going, as they are told by professionals. But they say that at first, they were too preoccupied with the caregiving situation to incorporate it into their lives. They said they missed concrete guidance to recognizing when to take personal time and how to use this time.

You have to take good care of yourself. I ask ‘How do I do that?’ Explain to me how I can do that. Because I tell you […], you have to be on your toes and pay attention to everything and take care of everything. But at some point it just breaks. You’ll get sick from it [from doing it all]. It has to. I’m sure of that. (Partner2; female, 9 months since PsWABIs stroke)

Understanding

Understanding from relatives and friends

Participants said that their social environment does not empathize with consequences of their brain injury and its impact. PwABI feel they continuously need to defend themselves as to why they have not returned to work or why they skip social activities, as they are being told that they ‘look so good.’ Participants find it hard to clearly explain their situation, get tired of repeatedly having to do so and feel they cannot talk about what they have lost due to the brain injury.

The weight of grief. The loss of so very very much. Which is not actually addressed or asked about. Certainly not, as ‘you’re so lucky’ [it could have been so much worse] – Yes, and then you go and say ‘But guys, I’ve lost so much.’ You don’t say that (PwABI6; female, 13 years since subarchnoidal hemorrhage).

Understanding from professionals

Participants mentioned that medical specialists (e.g. neurologists) have theoretical knowledge but have little understanding and awareness of invisible problems and their consequences in daily life. Participants missed the opportunity to talk about their day-to-day situation rather than focusing only on medical issues. They felt unheard with the medical specialists and some state that the opportunity to talk about their daily life would also have benefited the timely identification of needs and referrals to the appropriate services. Some suggested that the rehabilitation physician should play a role in the assessment of care needs.

If the neurologist, instead of asking ‘How’s it going?’, asked you to go through your daily routine, from the moment you get up until the time you go to bed […], then many more things would come to light. (PwABI35, male, 27.5 years since traumatic brain injury)

Understanding from institutions

A lack of understanding and empathy is also perceived on the part of the authority evaluating illness and labor incapacity (The Employee Insurance Agency; in Dutch: Uitvoeringsinstituut Werknemersverzekeringen or UWV), and the municipalities assessing whether care support is indicated according to the Social Support Act (in Dutch: Wet Maatschappelijke Ondersteuning). Participants perceived decisions as based on the PwABIs' appearance rather than on actual capabilities, which participants attributed to a lack of knowledge regarding brain injury.

If you go there [to the UWV] and you look fairly well put together […], then they never ask how far you’ve come to look that way. Or if indeed you feel fairly well put together. […] They just check the box: GDA, general daily activities, all okay. (PwABI26, female, 4 years since traumatic brain injury)

Knowledge in society at large

Participants would like the society at large to be more knowledgeable on brain injury, so that others can understand the impact on daily life, accept ‘different’ behavior and take this into account in social interactions. Some said that they feel responsible for spreading knowledge on brain injury themselves by talking about it more.

When I go to the dentist now I say, upfront and clearly: ‘I have acquired brain injury and I can react differently.’ They can’t see it; I don’t have a sticker on my forehead. But you have to warn them. […] Because I can get really dizzy from the bright lamp, and then I sound like a drunkard. (PwABI36, female, 2 years since traumatic brain injury)

Timely and individualized care

Information

Most participants have received information folders from the hospital, but very few actually felt it was helpful at that time. Some had trouble reading them so soon after injury, others needed all their energy to ‘keep going,’ or they were not open to information about long-lasting problems at that time. PwABI said that repeated, simple, individualized, verbal information from a professional was very useful. Information from peers was considered to be the most valuable. Partners need information on the impact on the partner specifically and mentioned they would have liked to know what could be ahead of them in terms of difficulties, to be able to act on problems early on.

I think it would be great if, right at the beginning, when you and your partner are starting to deal [with the new situation], if what you can expect could be made clear. Because then I think you might be able to put things together earlier and you would know where to ask for help more quickly. (Partner8; male, 14 years since PsWABIs stroke)

Transition to home after discharge

Participants said to feel unprepared for their life at home or ‘having the patient back home,’ being confronted with (unexpected) problems and having no place to go with their questions. They started to feel completely abandoned as they did no receive support after discharge, apart from physical therapy. They would have wanted to be prepared for the transition and to have received practical support to ‘get life back on track.’

In the chronic phase, you’re just thrown into the pool. And whether you can swim or not – you see how you can stay afloat. (PwABI2; male, 25 years since traumatic brain injury)

Searching for help and support

Participants describe having to fight and even be rude to get the needed support. They feel dependent upon coincidence and luck to get in touch with the right person. Some stopped asking for help altogether to avoid frustration and bureaucratic issues. Those who received a list with services were still unsure about what service to select and indicate that they need support with finding and accessing the right services.

Let me put it like this, if you do a lot of searching, you’ll get somewhere in the end. But nothing is offered to you. And if you don’t undertake action, nothing will happen. (PwABI1, male, 6.5 years since stroke)

Peer support

Participants indicated that peers understand each other’s’ struggles, accept ‘odd behavior’ and provide practical tips, which PwABI are more inclined to use than tips from professionals. PwABI said that if peers were to be working together with a medical specialist, needs would be recognized early on and appropriate referrals would be made. Although partners did not express the need for the use of peers in health care, they did say to greatly value contact with other partners (i.e., their own peers) for similar reasons.

I propose that after people have had a follow-up visit with a neurologist, they have an additional conversation with a consultant. Because the neurologist just asks: ‘How is it going?’ ‘Yes, fine’, then that’s as far as it goes. […] A consultant would have more time […] If, for example, you say ‘I got tired so quickly’ or ‘oh, I have that too’, more things come out. (PwABI31, female, 11.5 years since traumatic brain injury)

Support for partner/family

Partners wanted to have received support focussed on learning to understand the problems their spouse is having and support dealing with cognitive, communicative and personality changes, being involved in treatment, and having a contact person who is available for questions. Partners said they tend to seek help for themselves only when ‘it’s too late.’ They expect that if timely support was offered, problems could be prevented in the long term.

We all agree that we have to take care of our partner and guide them. And then, how far can you go, anyway? Where is the need and what is […] the straw that breaks the camel’s back, that turns you into a patient yourself. For that I think you need guidance. […][someone] whose finger is on the pulse, who can support you and guide you. (Partner3, male, 3 years since PsWABIs stroke)

Individual differences (from brain injury groups only)

Participants indicate that professionals need to acknowledge that every person is different, with individual problems, goals and ways of coping. Treatment needs to be tailored to the individual and specific problems occurring alongside brain injury should be taken into account when providing support as well.

Acknowledgment of small improvements (from brain injury groups only)

Small improvements are experienced by PwABI for years or even decades. They and indicate that every step toward their old level of functioning is extremely valuable to them. They would like professionals to emphasize these possibilities for improvement in the long term, instead of telling PwABI that improvement is no longer possible after six months.

They said that after two years no further improvement is possible. Well, there still is after 11 years. It goes very, very slowly, but sometimes I do make a little progress. (PwABI31; female, 11.5 years since traumatic brain injury)

Case management (from partner groups only)

Partners expressed the need for a contact person, someone to call to ask questions and who can simply provide with a listening ear or who help to access services when necessary. Some explicitly mention they would like to have a case manager, based on experiences with case managers for dementia (for their parents). Partners indicate that a case manager would be particularly useful in the first phase after brain injury, but also for long-term monitoring and active outreach so that they can help by identifying problems they may not yet fully acknowledge or understand themselves. According to partners, such a person could not only save them the frustrating search for services but would also save health-care costs as they state that some problems they have encountered could have been prevented.

If you have someone you can always call, if only for a moment. I don’t need to go there; I can handle it by phone, but if there is someone with whom you can just vent […] (Partner1, female, 1.5 years since PsWABIs stroke)

Discussion

This study explored the perceived needs of PwABI and their partners, within the context of living with brain injury in the long term. Based on the variety and complexity of needs on an interpersonal, social, health-care and societal level, we identified the metatheme of ‘finding a new balance in life’: people need to (learn to) adapt in a variety of life domains in order to live a satisfying and fulfilling life, despite the consequences of brain injury. Three major subthemes were identified: 1) adaptation to changes, i.e. dealing with the consequences in daily life; 2) understanding, i.e. the perceived lack of understanding from others of the invisible consequences, and; 3) timely and individualized care, i.e. needs and experiences with regard to health care. Thus, the results of our study go beyond needs on a health-care level, as they suggest that factors such as the lack of recognition of invisible consequences by those in the immediate social environment and society at large affects well-being as well.

In line with previous studies, we identified the timely provision of information, continuity of care, access to services and appreciation of individual differences as important care needs (15,18–20,31,32). We also identified needs that are less prominent in the existing literature on needs after brain injury, such as the need for peer support to be integrated in health care was identified. Peer support integrated in the care system for people with brain injury is still rather the exception that the rule, even though numerous positive effects of peer groups or individual peer monitoring improves have been reported, such as self-efficacy (33), better understanding of brain injury, ability to cope and quality of life (34–37) as well as increased community involvement (38). In addition, this study confirmed that partners need help with supporting their family member, but they also have needs of their own, such as designating personal time, being prepared for having the person with brain injury back home after stays in hospital or rehabilitation center, support with dealing with role changes and communication difficulties and the need for a case manager. Specific attention should be paid to coping with behavioral changes as well as practical support, as this is a recurrent theme (12,18,39).

In addition to peer support and care for partners, specific recommendations for improving care for both people with acquired brain injury and their partners were derived from the results (see Supplementary Material). Since no single intervention or professional discipline can meet the constellation of needs within the individual context, the overarching clinical implication is the need for a fixed expert contact person; a case manager. This is explicitly mentioned by partners and corresponds to the discontinuity of care coloring the majority of the needs of PwABI. A case manager could provide a listening ear when people just need to talk, provide information to foster understanding, identify care needs as they emerge, provide practical and emotional support within the boundaries of their professional abilities and help to find and access more specialized care if necessary. Case management could provide three types of continuity of care, namely informational (tailored to the personal situation), management (care coordination) and relational (ongoing therapeutic relationship) (20). Although the efficacy of case management with brain injury is unknown due to the lack of (randomized) controlled trials (40), findings of a six-month nursing outreach intervention (41) support the statements of participants of the current study that continuity of care would prevent escalation of problems and reduce health-care costs in the long term. Case management for dementia (42,43), oncology (44) and diabetes (45,46) has been shown to improve well-being, most often measured in terms of anxiety, depression and quality of life. Such positive effects were found for both the person with dementia and their caregivers (43); for oncology and diabetes, no outcomes for caregivers were reported (44–46). Trials on case management for brain injury are necessary to evaluate whether this could support the process of finding a new balance in life.

Besides clinical implications, this study also has theoretical implications. On a conceptual level, the classification of care phases – acute, subacute/rehabilitation and chronic (11,47) – may need to change from a biomedical to a biopsychosocial terminology to emphasize the need for continuity of care. Biomedical terminology is based on the stages of neurological and motor recovery, reaching a plateau after six months (48) and covers the ICF-model’s aspect of body functions, but not activity and participation (49). The classification fails to recognize the ‘chronic’ phase for those not going through formal rehabilitation and seems to imply that after rehabilitation, a status quo has been reached that one ‘has to live with.’ It ignores the start of the active, unsettling and long-lasting process of adaptation, with improvements on a psychosocial level that are perceived as more valuable than physical recovery. Therefore, we propose a biopsychosocial classification (Figure 2), renaming the rehabilitation phase as ‘recovery phase’ and the chronic phase as ‘adaptation phase.’ The adaptation phase is characterized by reintegration into ordinary life; becoming aware of the problems, learning to accept the situation and starting to look at possibilities as well as maintaining a ‘(renewed) stable, balanced life’ (11). A positive approach of exploring goals and support in reaching them is required and in all phases attention should be paid to partners’ needs. The balance may be disturbed by changes in the personal situation or the environment, hence the arrow in Figure 2. The term adaptation may better help (medical) professionals recognize the need to ensure continuity of care. In fact, this terminology is common in fields where continuity of care in the community is standard practice, such as severe mental illness (50,51) and dementia (52). For brain injury, in which the need for support may be less evident at the time of occurrence, this model we propose may provide a starting point for acknowledging the existence of problems that require adaptation and support, which may lead to referral to other services.

Figure 2. Proposed biopsychosocial classification of care phases after acquired brain injury.

This study is not without limitations. Although we purposefully selected a sample to represent a wide range of personal and injury-related characteristics, it is likely that the people who are most seriously affected were not represented, for example, due to an inability to travel to or participate in group discussions. One can argue that people with stroke and traumatic brain injury are different. While this is true from a neurological point of view, our analysis did not show long-term experiences or needs specific to the diagnosis. Generalizability of results for partners may possibly be limited as well since two partner groups consisted of a convenience sample. Some PwABI had difficulties choosing the most important themes from the set of pictograms, but the pictograms nevertheless fostered the discussion about experiences and needs. Also, the majority of the participants were living in the south of the Netherlands and regional differences in care organization may lead to different experiences and needs. That being said, our results are similar to those obtained in other countries, such as the United States (53), suggesting that the identified needs exceed regional and even country borders.

To conclude, both PwABI and partners experience a wide range of needs across different aspects of life. This study provides insights into how to support them in finding a new balance in life after brain injury. An important clinical implication is continuity of care, which may be provided through case management.

Disclosure of interest

The authors report no conflict of interest.

Supplementary material

Supplemental data for this article can be accessed here.

Additional information

Funding

This research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors.