Abstract
PURPOSE:
The purpose of this study was to understand healthcare providers’ perspective and responsivity to families’ needs in rehabilitative care delivery for children with Acquired Brain Injury (ABI).
METHODS:
Three focus group sessions were conducted to explore and understand multidisciplinary healthcare professionals’ (Hcps) perspectives about the care they deliver to parents of children with ABI. Convenience sampling was used to recruit healthcare providers (total sample size
RESULTS:
Findings from this study revealed Hcps’ perspectives on their day-to-day delivery of care and furthered our understanding of their challenges. It also increased our awareness about the rewards that Hcp gain as a result of their work. Five main themes emerged: (1) Getting back to normal; (2) Hsps’ roles and perception; (3) Challenges in practices; (4) Practice rewards; (5) a focus on solutions/ideas for better healthcare delivery.
CONCLUSION:
Hcps’ perspectives on their day-to-day delivery of care to families who have a child with ABI enhance our knowledge about the existing challenges and complexities. Findings from this study have significant implication for rehabilitation services in making rehabilitation goals more achievable for families of children with ABI.
Introduction
There is limited direct involvement of healthcare professionals (Hcps) in the day-to-day life of parents who have a child with ABI. In a recent study, it was reported that parents who have a child with ABI tend to feel isolated and uncertain about their child’s recovery and overall progress [1]. In 2013, Brown et al. [2] indicated that “the burden placed on parents through the rehabilitation process might pose further difficulties for parents to address behavioural issues with their child, due to prioritizing…the medical stuff” [p. 1576]. Some have pointed out that it is important for Hcps to develop trustful relationships and to have a good attitude towards patients, which may be beneficial for appropriate care delivery [3, 4]. Lefebvre et al. [3] further indicated that some patients felt as if they were treated like an ‘object of care’ eliminating the human dynamics from the care they received which resulted in lower self-esteem for patients. Others have emphasized the importance of language and the manner in which Hcps talk with parents [4]. These findings are indications that Hcps need to be more sensitive to how they communicate with parents who have a child with ABI.
Severe Acquired Brain Injury (ABI) in children has a significant impact on behavioural patterns, adaptive abilities, social, and executive functions [5, 6, 7, 8]. Moreover, it also adversely affects caregivers of children and the family as a whole [9]. Often parents, and especially mothers of young children with brain injury, have to shoulder the burden of their child’s injury as primary caregivers [10]. Family members and parents of children with severe brain injury have reported persistent stress associated with their child’s injury [11]. In addition, primary caregivers of children with severe brain injury tend to face greater psychological stress and report increasing depressive symptoms [12]. Stancin and colleagues [13] found that in order to deal with the tensions associated with their child’s brain injury, parents used a wide range of coping strategies.
A recent systematic review of literature on examining impact of a child’s brain injury on family functioning indicated that injury related burden and stress associated with a child’s brain injury have long standing effects on family structure, functions [14], and other family members. Studies that have examined family dynamics in this patient population indicate that the impact of a child’s injury negatively impacts familial dynamics and other family members such as siblings [15]. Existing studies show that a child’s ABI has adverse consequences on siblings’ behaviour and reduced self-esteem [15, 16]. Other studies have highlighted that mothers and fathers differ in how they approach their child’s traumatic brain injury. Healthcare providers need to understand how a child’s ABI impacts family members in different ways in order to provide specialized care to these families [17]. Direct involvement of Hcps is vital for appropriate service delivery to families who have a child with ABI. Consequently, the objective of this study was to understand healthcare providers’ perspectives and responsiveness to family needs in the rehabilitative care delivery to children with ABI.
Methods
Multidisciplinary Hcps were invited to take part in three focus group sessions. The purpose was to discuss their experiences with parents who have a child with severe ABI, possible issues, recommendations and practices based on the findings from our pervious ethnographic study that explored being a parent of a child with ABI [14]. We anticipated that the discussion would involve issues such as quality of the services offered to families, how convenient/flexible these recommendations are to families and practitioners, and team implications.
Study design
Focus group sessions were conducted to explore and understand Hcps’ perspectives about the care they delivered to parents of children with ABI. The rationale for conducting the focus groups was to gain an in-depth understanding of Hcps’ experiences with this population [18]. One of the central tenants of a focus group is the phenomenon of sharing and comparing which revealed the distinct perspectives, along with views and experiences of Hcps who have worked with parents of children with an ABI [19]. It has been suggested that “focus groups can thus serve a number of different purposes. Used in a self-contained fashion, they can be the basis for a complete study. Used with other methods, they can either supplement another primary method or combine with other qualitative methods in a true partnership” [19, p. 3]. Our study was approved by the Health Research Ethics Board at the University of Alberta (Edmonton, AB, Canada) and received operational approval from Alberta Health Services.
Participants and recruitment
We invited the entire multidisciplinary team of health care professionals in the brain injury clinic in a large western Canadian rehabilitation hospital to participate using a study invitation sent by an administrative staff member not involved in the study. Included in the email was an information sheet explaining the details of the study inviting them to contact the first author regarding study participation. The rationale behind having an intermediary send the invitations was to control for power dynamics, as well as to ensure that Hcps did not feel obligated to be part of this project. Convenience sampling [20] was used to recruit fifteen healthcare providers who attended each focus group session. The team members (Social Worker, Neuropsychologist, Occupational Therapists, Pediatric Neurologist, Developmental Pediatricians, and school Principal) who were involved in the long-term rehabilitation care for families of a child diagnosed with ABI participated in the study. An informed consent was obtained from each participant.
Data collection
Data were collected via semi-structured interview questions asked during focus group sessions. Each session was 60–90 minutes in length and took place at the rehabilitation hospital. The main purpose of having semi-structured questions was to enable an initial discussion. As the discussion with participants progressed, many spontaneous questions were raised. We used probes to elicit more detailed answers to the questions which enhanced the overall quality of collected data. Throughout the focus group sessions, we presented our questions in a non-leading and non-biased manner to ensure authenticity and impartiality of the information being collected. While multiple disciplines were represented in each focus group, we did not analyze the data based on disciplinary contributions or power dynamics between team members as a way of protecting individual members’ confidentiality.
Data analysis
Recorded focus groups sessions were transcribed and subsequently entered as verbatim transcripts into NVivo qualitative data analysis software (2010) to assist with the organization and retrieval of the data. We used the analytic framework outlined by Crabtree and Miller [21] who suggested five phases of data interpretation: (a) describing, (b) organizing, (c) connecting, (d) corroborating/legitimating, and (e) representing the account.
(a) Describing: In this stage, the main focus was on reviewing data and deciding what steps needed to be taken to further enhance data interpretation. (b) Organizing: we used immersion and crystallization as our organizing style. In this style, continuous engagement with the text and data was required until the interpretation crystallized [21]. We reviewed the text paragraph-by-paragraph, line-by-line, and word-by-word. (c) Connecting: After the organizing style was finalized, we analyzed and made connections between what Hcps’ described in relation to care delivery. In this phase of our analysis, we made connections between Hcps’ experiences and roles that emerged from the data in order to make sense of the themes and patterns. (d) Corroborating and legitimating: The focus in this stage was to verify our explanations of the data and to make sure that the data was consistent with the reality experienced by Hcps working with parents who have a child with a TBI. (e) Representing the account: In this phase, our focus was to choose the best means for presenting our findings to different audiences such as researchers and clinicians.
Methodological rigour
Rigour for this study was established through the use of the following criteria developed by Lincoln and Guba (1985) [22]. Credibility: Activities we conducted in order to ensure credibility included peer debriefing to critically review progress on data analysis. Transferability: In order to achieve transferability, we presented our findings to Hcps at the clinic. This transferability was evident as we presented our finding to Hcps who reported identifying similar experiences in a similar setting while providing care.
Results
Five main themes emerged from the data we collected from Hcps: (1) a focus on getting back to normal; (2) reframing Hcps’ roles and perceptions; (3) challenges in practices; (4) practice rewards; and (5) finding ways forward based on solutions proposed by Hcps for better care delivery.
Theme 1: Getting back to normal
The healthcare providers described their interactions with parents who reported a desire to get back to normal. It is vital to note that Hcps were using the term ‘normal’ range for laboratory investigations. The term was rarely used to suggest what ‘normal’ would mean to families in terms of their child’s daily routine. While the introduction of adjusting to a ‘routine’, is a term used by Hcps, it signals a change within families who have a child with TBI. Healthcare providers might have been able to foresee possible trajectories for recovery based on their experience and insights from other care providers and empirical studies, they recognized that this is not going to be the previous normal or a return to previous family functioning. Substitution of the word ‘atypical’ for ‘abnormal’ was used by Hcps to suggest that there could be a deviation from the expected age appropriate performance and the previous family life. At other times, healthcare providers described introducing the phrase ‘back to a routine’, suggesting that there might be a need to adapt to a different family life. There is an enormous tension associated with the word ‘normal ‘which reflects the families’ beliefs, values, desire and hopes. It is recommended that health professionals use the word ‘normal’ with caution in order to avoid hurting and offending anyone while providing care.
Theme 2: Reframing Hcps’ roles and perceptions
Hcps on the other hand, acknowledged that they may not be viewed as an integral part of the family support system. However, they suggested that their knowledge and experience could be considered as support. Hcps wrestled with the need to direct more attention and effort to ensure that parents develop a rapport with them beyond their expertise. This was particularly the case for those Hcps who were involved in the long-term care and rehabilitation efforts for families.
Hcps acknowledged that the medical model in which they worked was hierarchical in nature. One care provider mentioned that “[i]t’s behind the scenes that the parents certainly know the hierarchy here”. Hcps were aware that parents knew who to contact for what is usually physician based needs. At other times, members of the team acknowledged that not all of the information was shared with all team members. This was due to the hierarchy to which medical professionals belong, as well as the rapport builds with parents along with maintaining confidentiality.
In some instances, Hcps were clear that not all issues faced by patients or their families were part of the care they provided. There were instances when some providers would have preferred to be the primary care provider, however, due to the structure of the medical system, they were limited to and dependent on other medical professionals who were in the community.
Participants in this study emphasized that continuity of care and involvement of multidisciplinary teams is vital in terms of rehabilitation goals. Furthermore, Hcps spoke about the importance of asking comprehensive questions to better understand the past medical and developmental history of each patient and their family. This was done to provide better care and to set mutual rehabilitation goals across disciplines. Hence, it is recommend that health care professionals incorporate standardized interventions that will evaluate the overall quality of life in these families and provide appropriate care based on their precise needs.
Theme 3: Recognized gaps in practice
Hcps in this study believed that their work is extremely structured and restrictive in time which impact the way teams function. Time constraints were identified as the main challenge that Hcps faced when prioritizing the most significant issues that needed to be resolved during a clinic visit. One challenge was that the focus was often on the physical needs and not on the emotional, non-physical aspects of an ABI. From the perspective of Hcps, the issue of time was a major barrier to developing relationships with parents and their children. This lack of relationship was viewed as leading to ambiguity around delving into personal matters and crossing privacy limits.
Theme 4: Practice rewards
Hcps also described ‘rewards’ while providing care for families who have a child with an ABI. Often, Hcps are rewarded by seeing the emerging resilience in the families they serve. At times, they are able to witness their patients’ successes after being discharged. Hcps found it rewarding when children with ABI were well integrated into the community. Some Hcps found it inspiring that families were actively involved in the community and supporting other parents who were going through similar challenges. One Hcp said that When families become so strong and find the time to volunteer and give back to the community by assisting others,it is inspiring and rewarding and means that the system did well. Hcps also reported that in spite of the fact that they were the bearer of bad news, it was rewarding that parents still cooperated with them.
Theme 5: Finding ways forward
In light of the challenges that were raised by Hcps, possible solutions were discussed. Participants identified that large multidisciplinary teams can, occasionally create an impression that the child and the family are taken care of one provider said that “for our complex cases with so many people involved there is the illusion that somebody will have their eyes on the child when discharged”. According to some Hcps, the involvement of many people in care delivery may not be effective for families who are not strong advocates. Hcps also a raised concern that family-centered care to a greater extent is undermined in their practice. In an attempt to address this Hcps recommended the model of a case manager/caseworker who would act as a medium between Hcps, families and the community. This model will add a stronger contextual understanding of the families and act as a resource. Moreover, Hcps also advocated for the use of social media as a means for families to gain access to resources. In particular, they felt that it would help build up connections with other parents or support groups following their child’s discharge from the outpatient clinic.
Discussion
Our study offers a unique and innovative perspective of five main themes that emerged through our focus group discussions and analysis. Hcps felt that the effort in communicating with families, about “getting back to normal” (theme 1) is not always perceived in the way it is intended. Additionally, there is also a gap between parental expectations, hopes, and anticipated trajectories for recovery that is presented by the Hcps. Current studies only focus on understanding Hcps’ perspectives on the family-centered care [23] and care givers’ involvement in mental health topics [24].
Support systems and their positive impact on families of children with an ABI are well documented in literature [25, 26, 27]. However, there is no existing literature that explores the extent to which support from Hcps is viewed as part of the families’ support system. Our study determined that Hcps believed that they were not considered an integral part of a family’s support systems. Additionally, Hcps felt that they have actively demonstrated efforts to speak with families about the importance of parental unit strengths and the effects of long-term burdens in caring for a child living with an ABI. In addition, Hcps provided detailed information about community resources. It is also evident in the existing literature, that parents who have a child with an ABI felt that they were often left alone and without support from Hcps when leaving the medical facility [1]. In our previous research, parents expressed a desire “to share feelings” and “addressing needs that were non-visible and non-physical” [28] as a part of their broader definition of support systems and the vision of Hcps’ roles and perceptions (theme 2).
In this study, Hcps also recognized gaps in practice (theme 3). One of the main issues was their time constraints as limiting factor in connecting and building relationships with parents in rehabilitation settings. A time constraint as a limiting factor in quality of care and communication is discussed in literature as a recognized gap. A study that examined families’ and Hcps’ perspectives on family-centered care indicated that lack of communication and time constraints were limiting factors in providing appropriate care. In this study, nurses did not have enough time to deliver ‘basic care’ to families because their roles expanded to include “procedures, paperwork, administration duties and medical tasks”. Further, parents in this study also expressed tremendous frustration due to a lack of communication about their roles while caring for their child in the hospital [23]. It is evident that continuity of care and building relationships with parents are key elements of care.
There is a long-term pathway for recovery and normalcy for the children, their families, and Hcps following the child’s diagnosis. In this triad, the patients and families tend to be a constant, while Hcps may change over time. The nature of Hcps’ work in this field is such that the journey starts with the injury. Since the family and child’s past history, previous development and performance are not always documented, there is a strong reliance on families’ recollection. ABI might have significant impacts on cognitive performance [29], and is associated with difficulties in academic achievement [30] as well as social problems [31], a prognosis varies depending on previous pre-morbid conditions, cognitive ability [32] and functioning. Therefore, it is imperative to have more accurate data in order to be able to describe possible trajectories for recovery. Some of these issues, gaps, and challenges expressed by Hcps are core concerns in the existing medical model. We recommend that future research be conducted to explore Hcps’ experiences in relation to constraints and pressures under which they deliver care to families who have a child with ABI.
While acknowledging the challenges, healthcare providers unanimously agreed that the rewards in practice (theme 4) are motivating, invigorating, and helpful in building resilience in their day-to-day work. Our finding is in alignment with current research which focuses on the on the value of sense of satisfaction for Hcps who have cared for people with AIDS. The participants in this study reported that getting positive feedback form their patients was the main reward. As evident in the quote from the study: “I feel important to the client. The patients say I’m glad you’re here and I make a difference [33].”
Literature suggests that the readiness for discharge from pediatric rehabilitation exists in only 3 to 27% of children with an ABI [34]. Considering this low rate of readiness, it becomes prudent to establish the foundations for long term specialized care in order to achieve the rehabilitation goals [34, 35] This in fact ties back to our themes 1, 2, and 3 leading to the last theme of: “finding ways forward”. The idea of a case manager who will liaise between the institutional Hcps and primary health care providers along with community resources was recommended by study participants as a solution to improve communication [36]. We suggest that the latter is highly important especially in centers located in catchment areas including rural communities where liaising services are not always available.
Strengths and limitations
The number of focus group sessions was identified as a limitation of our study. We were able to conduct three focus group sessions with Hcps who were available to attend. However, these sessions did not capture all disciplines involved in the provision of care. Another limitation relates to the data that was gathered from a single site. This, however, did add to the specificity of the study. In future studies, researchers may benefit from recruiting participants from multiple sites where specialized care is provided. Also, it is important to consider analyzing data specific to disciplines, and to explore the power dynamics among care providers, and parents, for example, how roles in care provision are enacted. Despite these limitations, this study adds to the existing literature by expressing the direct perception of the Hcps on the gaps and needs for improving the care for this complex patient population. An additional strength of this study was that our focus groups included multidisciplinary Hcps.
Conclusions
Considering Hcps’ perspectives on their day-to-day delivery of care enhanced our understanding of the challenges between Hcps and families. This study is adding to the literature by qualitatively defining and presenting themes that are fundamental in understanding disparities and challenges in the long-term journey of establishing doctor-family relationship within the patient centered care model. It also brings the opportunity to increase the awareness of the rewards that Hcps gain while working with this population. Findings from this study have significant implication for services that make rehabilitation goals more achievable for patients and families of children with an ABI.
Footnotes
Acknowledgments
The authors thank all Hcps for participating in this study. We would also like to acknowledge valuable editorial feedback provided by Janet Neufeld, RN, MA that improved the quality and clarity of our manuscript. As well, acknowledge the important contributions of Ms. Marilyn Dumkee (Glenrose Rehabilitation Hospital) for helping in the recruitment of the study participants. The authors disclosed receipt of the following financial support for this project: The research was funded by Alberta Centre for Child, Family and Community Research (ACCFCR) (RES0023762).
Conflict of interest
The authors declare that they have no conflict of interest.