Experiences of family caregivers of patients with post-traumatic hydrocephalus from hospital to home: a qualitative study

doi:10.21203/rs.3.rs-1755287/v1

Download PDF

Research Article

Experiences of family caregivers of patients with post-traumatic hydrocephalus from hospital to home: a qualitative study

https://doi.org/10.21203/rs.3.rs-1755287/v1

This work is licensed under a CC BY 4.0 License

You are reading this latest preprint version

Background

Post-traumatic hydrocephalus (PTH) is a complication of traumatic brain injury (TBI) that requires treatment and postoperative care. The shunt is one of the main treatments for PTH, which presents with dysfunction and infection. Considering brain injury, hydrocephalus shunt malfunction and infection, family caregivers need to be responsible for caring for PTH patients, recognizing shunt malfunction and infection, and managing those patients accordingly from hospital to home. Understanding the experiences and needs of caregivers is beneficial for knowing their competency and quality of health care, ameliorating and ensuring future transition care. The study aimed to explore the feelings, experiences, and needs of family caregivers when caring for patients with PTH and shunts.

Methods

This was a descriptive qualitative study using a semi-structured interview method with a purposive sample of 12 family caregivers of patients with PTH and shunts from hospital to home. Data were collected from October 2021 to March 2022 before being analyzed by content analysis methods.

Results

Based on the available data, we found caregivers were experienced and often had ‘complex emotional reaction’, ‘inadequate confidence in caregiving’, and ‘unmet needs’. As caregivers, they required professional and social knowledge and support in the areas of PTH and shunts, caregiving interventions, psychological care needs, and health insurance, just as other caregivers do, but also unlike other caregivers.

Conclusions

Family caregivers faced complex emotional burdens when caring for PTH and shunt patients, and they had trouble caring for PTH patients, recognizing common symptoms, shunt malfunction or complications, and they expected to manage their patients' conditions in collaboration with health professionals. There is a need for research on intervention support for the care of patients with PTH and shunts, particularly with regard to confidence and expertise in care.

post-traumatic hydrocephalus

shunt

transition care

family caregiver

interview

qualitative

Post-traumatic hydrocephalus (PTH) is a complication arising from TBI that may progress over weeks to months[1]. Patients with PTH are common given that there are about 50 million new TBI cases worldwide each year[2]. PTH has been an increasingly common neurosurgical problem involving all age groups with varying series, presentations, and treatments[3–5]. A permanent cerebrospinal fluid shunt is the main approach to save brain function and relieve hydrocephalus symptoms[6, 7]. PTH with TBI is defined as a surgical disease[8], and there is no cure for PTH but surgical methods can improve morbidity, mortality, and quality of life[9, 10]. A shunt is the treatment of choice for PTH, diverting excess cerebrospinal fluid from the ventricles to the abdominal cavity[11], where the peritoneum absorbs the drained cerebrospinal fluid, achieving maximum shunt survival remains challenging[12, 13], and shunt surgery can cause infection and malfunction. Patients with PTH usually take a long time to recover and improve postoperatively[14, 15], and it's unclear if it's a symptom of TBI or shunt malfunction or complications.

Considering the shortened average length of hospital stay, and high hospitalization expenses under the healthcare policy, patients and their relatives choose to go home to recover after the acute stage of surgical treatment[16–19]. The transition of care from hospital to home, when patients are discharged but have not yet recovered, is a critical and vulnerable period for caregivers and patients[20]. The mainstay of long-term care is the family member, who often does not have the relevant expertise and caregiving skills before the time, but who handles a range of patient care tasks alone[21]. Caregivers encounter the impact of brain injury, PTH, and shunt on daily life, and they are informed of postoperative shunt complications and shunt malfunction that require caregiver recognition[22, 23].

Previous literature focused on the TBI management, and the caregiver of traumatic brain injury(TBI) patients expressed their unsuccessful attempts to fill the gap in care coordination in Australia[24], which was inconsistent with guidelines that required patient and caregiver involvement in decision making at all stages and that care should be coordinated within and between services[25]. There is very little research on PTH and shunt, especially as PTH occurs after brain injury and shunting is a permanent way of possible dysfunction and infection[26]. All that caregivers know is the material and knowledge dictated to them by professionals during their hospitalization. There is no report exploring the care conditions and experiences of these caregivers. From Mohammed’s bibliometric analysis, the predominance study of hydrocephalus management existed in the medical treatment and surgical intervention[10]. PTH patients have a brain injury and the prognosis is also important for the individuals, families, and society[22], and health professionals perceive that proper transition care can avoid hospital admissions. There is a need to explore the feeling and experience of care for patients with hydrocephalus shunts to obtain or improve immediate transitional care. The purpose of the study was to explore the experiences and needs of family caregivers of patients with hydrocephalus shunts and to provide information about caregiver PTH and shunt intervention studies.

We used a qualitative approach to explore caregivers' experiences of PTH and shunt and found meaning in their experiences. This is consistent with realism, which recognizes that there can be different but valid interpretations of a phenomenon based on a particular perspective or point of view[27]. Using participant observation and semi-structured interviews in the exploratory study, the interviews allowed us to understand the experiences and preferences of the nursing process in light of the purpose of the qualitative exploratory study[28].

Setting and sample

The study was conducted in five adult neurosurgery departments in a general hospital in Zhengzhou, Henan Province, China. These departments provide healthcare education and follow-up medical consultations. As the first phase of a master's research project, a data report was collected to explore caregivers' feelings and experiences of care, what they had mastered, and what they needed. Eligible participants were selected through purposeful sampling[29]. Inclusion criteria: (1) TBI patient with PTH and receiving shunt surgery at least 1 month before the interview, (2) participants aged over 18 years old, (3) participants communicating clearly, (4) participants undertaking the primary care without payment, and (5) participates who were willing to share with the research team. Caregivers of patients with the following conditions were excluded: (1) patients with an end-of-life diagnosis, and (2) patients who chose to give up treatment during the survey period.

Data collection

This research focused on experience and significance. Demographic data were obtained through a brief questionnaire, and the interview guide was based on literature reviews and theoretical support[22, 24, 30], and was discussed within the study group, including four experts in hydrocephalus, nursing research, psychological care, and care behavior management, who were identified and consulted to formulate the interview guide, which reads, “Can you share your experience of caregiving shunt patients with PTH?” “How did you care for the PTH patients?’ ‘Did you have the needs and were they met (if not, why not)?”

Data were collected from October 2021 to March 2022. We recruited patients prior to discharge and interviewed the patients in a dedicated consulting room at their review one month after discharge. At the beginning of each interview, the purpose of the study was explained in detail and the confidentiality of the participants was ensured. Participants were given the opportunity to ask questions and confirmed their right to withdraw from the study at any time. Oral and written informed consents were also obtained. All interviews were conducted and recorded in Chinese by an experienced, university-educated research team, and an expert in the qualitative study field was invited to guide and oversee the process. In addition to listening, response and repetition, further questions were used to obtain additional details[28], such as, “Could you share the details about that?”. The interviews lasted approximately 30-60 minutes and continued until data saturation was reached and no new information was obtained [29]. 15 family caregivers were recruited; 12 caregivers agreed to participate; 1 caregiver declined participation due to patient deterioration; 2 caregivers declined due to work-related commitments.

Data analysis

All interviews were digitally audio-recorded and immediately transcribed verbatim. Using Graneheim’s and Lundman’s conventional content analysis strategies were employed to analyze text data[31]. While data were being collected and analyzed, interview transcripts were read repeatedly to understand and capture meaning units and coded with conceptual labels; initial codes were collected, and then categorized into subcategories, and all data associated with each potential theme were organized and collected; similar subcategories was divided into larger categories[29]. Disagreements were resolved through discussion and consensus among all investigators[32].

Data trustworthiness

Four criteria of credibility, confirmability, dependability, and transferability were used to ensure trustworthiness. Credibility was established via peer checking and member checking. Two of our researchers, who were unfamiliar with the transcripts, reviewed the full data for new themes related to coding excerpts as well as member checking and invited four participants to verify that the codes and categories were consistent with their experiences[33]. The entire study process was documented in as much detail as possible in order to achieve verifiability of the study results. Peers assessed the dependability of transcripts and group discussions to ensure consistent decisions were made. Through extensive, clear, and distinct descriptions of the culture and context, participant selection process and characteristics, data collection and the process of analysis were established with transferability[34]. Moreover, study findings were provided to two additional family caregivers with PTH and shunt patients to check accuracy.

Ethical considerations

All participants gave written informed consent to participate in the study. The study objectives were first explained to the participants and written informed consent was obtained from those willing to participate. In addition, permission was granted to record interviews with a tape recorder. Participant confidentiality and anonymity were guaranteed, and participants voluntarily entered the study and could withdraw from the study at any time without consequence. The time and place of the interviews were chosen in coordination with the participants[35]. This study was obtained from the Ethics Committee (ZZURIB2022-18).

12 caregivers completed the study. The caregivers’ characteristics are presented in Table 1. The respondents’ ages ranged from 24 to 57 years, 58.33% were female. Three major themes emerged from the analysis of caregivers’ experiences, and subthemes associated themes are presented and described in Table 2.

Table 1

Demographic characteristics
Number	Gender	Age	Occupation	Educational level	Kinship with patient
1	Female	24	2	Middle school	Daughter
2	Male	45	2	Primary school	Husband
3	Male	38	2	College	Son
4	Female	40	1	College	Daughter
5	Female	35	1	High school	Daughter
6	Female	55	3	Middle school	Wife
7	Male	30	2	High school	Son
8	Female	41	2	High school	Wife
9	Female	43	3	Middle school	Wife
10	Male	48	3	Primary school	Husband
11	Male	55	3	Primary school	Father
12	Female	57	2	Primary school	Mother
(1 = full-time job;2 = Part-time job;3 = No work, including unemployment, layoff, retirement)

Table 2

Themes and subthemes
Themes	Subthemes
Complex emotional reaction	Helpless to patients’ new diagnosis
	Uncertain reaction to patient’s prognosis
	Discontinuity between caregivers and professionals
Inadequate confidence in caregiving	Feeling insufficiency in caregiving
Inadequate confidence in caregiving	Struggling to live a normal life
Unmet needs	Understanding hydrocephalus and shunt
	Recognizing common symptoms and shunt malfunction
	Developing professional organization
	Financial difficulty
	Psychological support

Complex Emotional Reactions

Caregivers had complex emotional reactions to the diagnosis and shunt of patients with PTH, with disease and treatment impacting them throughout their lives, and with sub-themes of inability to help with the patient's new diagnosis, uncertainty in response to the patient's prognosis, and discontinuity between caregivers and professionals.

Helpless to patients’ new diagnosis

Patients were diagnosed with hydrocephalus with trauma, hemorrhage, and other craniocerebral injuries. A common reaction was fear of brain damage, as they did not know how to deal with multiple complex problems from patients, and when they were told the patients further consolidated hydrocephalus and had to perform surgery to stay alive, they did not know what to do except listen and follow blindly.

‘I remembered that I couldn’t believe that, his condition was already so severe that he had surgery just now and then had to have another surgery again. We had no choice but to shunt. We were told that hydrocephalus was fatal to his condition at the time.’(C12)

‘I didn’t know how to face the life until now, the doctor told us that shunt surgery was necessary for him, otherwise he would not be able to proceed with the next treatment We didn't know why the hydrocephalus happened again after the operation, but I didn't see any visible change in him after the operation, maybe like the doctor said if the hydrocephalus was not resolved his condition would be worse.’(C5)

‘He was the head of our family, we had parents and children to take care of, we both worked together to take care of the family before, other family members could not make a living, he had brain damage and PTH, we all knew the importance of the brain for breathing.’(C9)

Uncertain reaction to patient’ s prognosis

TBI patients always had symptoms of brain injury, family caregivers couldn't see the immediate effect and improvements of the shunt, and they needed more than one specialized and professional scan to determine the effectiveness of the shunt.

‘It was hard for me to identify something wrong that happened as a non-specialist (family caregiver), I did not know how to care for him at the beginning, but I had to take care of his life in a flurry, my own life and our family, especially his condition could change at any time.’(C4)

‘I knew something wrong happened, his consciousness became blurred and often fell asleep, I had to guess the condition was worse.’(C7)

‘I was thinking about whether he could recover from the surgery when he came out, everything was in a mess and it’s totally uncertain’(C11)

‘The doctor said we could leave the hospital, but I didn't see any significant changes after the shunt surgery except a CT scan.’(C9)

Discontinuity between caregivers and professionals

Caregivers wanted to keep in touch with professionals, as they felt that physicians did not usually share too much information and engage in in-depth discussions about the patients’ recovery and needs. This resulted in caregivers not knowing the care for their patients, and to some extent, caregivers may be the dominant force, for example, they needed to pay attention to the changes in patients, including patient shunt malfunction, treatment outcomes, and at the same time they feel discontinuity between interactions.

‘We took the CT scans on time, and hoped to see the improvement compared with the last check, he(doctor) just said a few words shortly.’(C9)

‘He(doctor) was busy, I just had a few minutes to ask him, and it seemed that he did not want to talk more about the condition, maybe it was too obscure to understand, I didn’t know how to get better.’(C12)

Inadequate Confidence In Caregiving

Given the lack of expertise about TBI and PTH, coupled with the severity of the patient's condition, treatment and symptoms, there was inadequate care capacity and efficiency. Relevant subthemes were feeling insufficiency in caregiving and difficulty living a normal life.

Feeling insufficiency in caregiving

Family caregivers were critical in patients’ condition monitoring, whether it was treatment efficacy, rehabilitation, or identification of shunt malfunction, because it had a challenge in caregiving for caregivers had no expertise, no experience. This made them feel insufficiency in caregiving, especially for the ones who were alone in caregiving.

‘I was still concerned about his body, stomach tube… I feared something incorrect happened in position change and feeding, which caused the condition worse.’(C11)

‘I was afraid I wouldn't do enough to delay his recovery, you know, I didn't know anything about this before, but I can try everything that was a benefit for his recovery’(C3)

Struggling to live a normal life

Caregivers reflected on the changes and challenges in their life after PTH and shunt. They saw nothing wrong with going home, but reality slapped them in the face. There were still existing symptoms of brain injury and hydrocephalus, and the shunt may malfunction or infection, as they struggle to return to a normal life.

‘You could not see and touch it but couldn’t ignore it, it maybe happened wrong, he is mentally exhausted, tired, and forgetful. I tried my best to get back to life like before. it was hard. I need to work, care for a patient and our parents. I was a mother, worker, daughter and wife, every role meant one duty, everything was difficult.’(C8)

‘He still felt dizzy and had a headache after the operation, and cognitive disorder persisted.’(C6)

‘I wondered whether she lived normally with the tube, the pressure, she still felt dizziness, she was able to go to the bathroom by herself during the day, but at night she suffered from incontinence, and the pressure is very low.’ (C2)

‘Because she needs care and there is no one else to care for her except me for caregiving, I can’t even go out for work, not to mention the offer to socialize with friends.’(C10)

Unmet Needs

Participants reported they had limited and insufficient support for caregiving patients with PTH and shunts from hospital to home. The needs was diverse, with four subthemes as an example: understanding hydrocephalus and shunts, recognizing shunt malfunction and comorbidities, financial support, and psychological adjustment.

Understanding hydrocephalus and shunt

For patients and their caregivers, the sudden news and diagnosis made it hard to know about their condition. Most patients were puzzled about the reason why hydrocephalus occurred after surgery. The information needs were important for them. However, it was usually difficult to understand complex medical terminology. Here are some examples of trying to understand hydrocephalus:

‘I couldn’t understand the word ‘hydrocephalus’, why it still happened after surgery. The doctor just told me it is dangerous for his condition. We had to perform the shunt operation firstly. But I want to know why and what’s happened? (C12)

‘I know a little information about hydrocephalus. The doctor said something about hydrocephalus, he said it is caused by too much water staying in the brain, the water flows into the head and leaves away normally. His example was simple and vivid, it left me in a deep impression.’(C4)

‘The Internet is convenient and accessible. When she was diagnosed with hydrocephalus, I searched for it on the Internet, trying to find more information. You know what the doctor said is not enough and they are busy, we want to know more and get some help anytime.’(C1)

‘I don't know much more than what the doctor told me about the hydrocephalus, we don't know as much as doctors do, we just do what the doctor told us to do, and play along with the treatment.’(C10)

Recognizing common symptoms and shunt malfunction

Caregivers gained knowledge about hydrocephalus and its treatment through learning and practical experience. When they returned home, the doctor and nursing staff helped them develop a discharge plan, that might need to be revised or adjusted. Their caregivers found it difficult to identify and express the symptoms caused by illness or shunt malfunction. Only a few caregivers could recognize the problem because of these apparent changes compared with the previous symptoms.

‘I thought he was OK after the surgery, he didn't have any other symptoms, we didn't come for a review, but when he caught a cold and fever, then his temperature was spiking, we wondered if there was a problem with the shunt tube.’(C11)

‘After he came home from surgery, he was still dizzy, and when he lifted his head, he became dizzier.’(C9)

‘The first few days he was clear before, but suddenly started to blur, no energy, sleeping throughout the day. It is a different contrast to previous life and rest. I wonder if the situation is not right.’ (C12)

Developing professional organization

Most caregivers living in rural areas preferred to make an appointment at a local county hospital, and some of them chose to have a call with their supervising doctor. They also needed official organization source support to get reliable information and contact professional person outside of the hospital or get other help in a transitional period.

‘The doctor was very responsible. When we were not sure about some problems, I usually called him for consulting, and he gave us some useful advice. We also learnt a lot from his interflow.’(C1)

Caregivers received immediate help and support when the patients presented acute illness symptoms. Their caregivers found it difficult to get continuous dynamic help to uninterruptedly meet hydrocephalus patients’ needs, and the process was long and volatile.

‘No exclusive doctor knew well about our condition, we went to different hospitals, we needed to say our complete medical treatment procedures and examination reports. It's too much work.’ (C2)

‘When the doctor asked us about shunt pressure, but I didn't remember it, I know that her shunt equipment of five regulations, her treatment had been given for a long time in the hospital, and the shunt pressure was changed several times. The doctor will find equipment for pressure measurement again. ’(C10)

Financial difficulty

Most adult patients with hydrocephalus had the primary disease, were mostly young and middle-aged, and were the main source of family income. On the other hand, the health insurance system had limited reimbursement and no financial and medical support policies for patients with hydrocephalus and shunt.

‘His condition is serious and rehabilitation is very important to him. After we were discharged from the hospital, we kept going back and forth for specialized rehabilitation, acupuncture, and massage, but it was a long time process. The spending was expensive and had limited reimbursement from medical insurance. We couldn't afford it, so we had to do that by ourselves at home.’(C12)

Psychological support

Constant caregiving took caregivers away from themselves and their own lives, and caregiving was seen as one's sole responsibility and lifetime, especially when traditional morals that valued filial piety above all else and focused on blood ties make it easy for caregivers to become trapped in a mental prison and require psychological adjustment.

‘I had been taking care of her for a long time. Sometimes I felt that there was no hope in life. The sky seemed to be dark all the time, but I couldn't deal with it. It's deserved, if I didn't take care of her, who would take care of her?’(C6)

‘Since he got sick, the focus of my life was taking care of him, I did not go out, did not work, did not play with friends, my friends also knew that there was a patient at home, they were sorry to disturb me, even if we happened to meet I would not say anything about taking care of the patient, I felt embarrassed, and I thought it is useless to talk to them except disturbing their normal life.’(C8)

‘It was important to see him as a child, not a patient. Sometimes I couldn’t control myself worried and annoyed, you just knew it was unavoidable but you could not let it occupy your whole life, change your mind.’(C7)

Recovery from TBI and PTH is a complex and chronic condition[36], and caregivers’ experiences of caring for PTH patients with a shunt from hospital to home were segmented into three themes, complex emotional reaction, needs support and inadequate care capacity and efficiency. Complex emotional reactions had been a key perception for caregivers, especially for these patients with brain trauma. Diseases affected cognition, consciousness, movement expression and understanding, and the complex emotional reaction was a stressor that could not be neglected[37, 38]. Various complex emotions brought a shift in caregiving and changes through the progression of recognition and assessment. The emotional burden had a positive role in facilitating caregivers to take action to learn and acquire more information about hydrocephalus and shunt[39]. Knowing these could reduce negative emotions and increase confidence and management skills, which has been confirmed by a large number of investigations[40]. Various emotions were related to the symptom and burden of the disease, the prognosis of TBI and PTH was unpredictable, and both were subjected to shunt, which could release symptoms but not restore them. Moreover, the symptoms of hydrocephalus were not suddenly eased, which also depends on individual differences[41, 42]. More importantly, shunt malfunction was intangibility and the patients with malfunction might show one or more of these, lower limbs weakness, somnolence, vomiting, or bellyache, behaviors that were common and easily overlooked[43]. This explained why most caregivers expressed uncertainty, concerns, and difficulties with adult hydrocephalus with the shunt.

Inadequate confidence in caregiving was another important experience of caregivers [44], which was related to the information, competence, and experience of the process of treatment and its outcomes in PTH patients. However, caregivers rarely had this experience and they were able to gain confidence from the actual caregiving life since the caregiving process was a continuous learning process for both patients and caregivers who improve their self-efficacy and help them to return to normal life by integrating their knowledge, experience and improving the patient's condition, which also has various effects in their actual life[45]. Confidence in care appeared to be an intermediate factor that is influenced in many ways by the patient's condition, knowledge, experience, and abilities, but also by the patient's own ability to care and care behaviors.

From the interviews, caregivers cited unmet needs related to long-term conditions, although care needs were diverse and included expertise support, and psychological and financial support. Considering the limited medical resources and insurance system, no official support or medical reimbursement was given for TBI, and shunt and these diseases and treatments placed a heavy burden on patients, caregivers, and society. First, it is crucial that caregivers of patients with hydrocephalus and shunts recognize and respond to malfunctions[46], experience seemed more important than abstract knowledge, and some caregivers experiencing malfunction or infection were more confident if necessary caregivers challenged health professionals’ assessment and decision[44]. Further, caregivers supposed that professionals could consider their knowledge, skill and knowledge and collaboration with health professionals[47]. When participants were discharged home from the hospital, they experienced despair and helplessness[48]. Developed countries have official institutions and support websites dedicated to hydrocephalus, which is very friendly for hydrocephalus patients and their caregivers[49, 50]. They face a lack of caregivers, the pressure of treatment costs, and the psychological burden. The cost of treatment is a major factor in the psychological stress of caregivers, and low income and inadequate organization resource support put psychological pressure on caregivers and a heavy burden on families[51].

This study described the experiences and needs of family caregivers with PTH and shunt. As a qualitative study, there were a few limitations, first, we selected a sample of patients with TBI, PTH, and shunt during an approximately one-month transition from hospital to home in a large general hospital who demonstrated that their experiences with patients with PTH shunt were unique and complex, and not well, the generalizability of this study is limited. Second, caregivers' experiences may be subjective and influenced by many factors such as prognosis, improvement, situation, and environment, necessitating a longitudinal qualitative study of a fixed population to discuss changes over time.

This study interviewed family caregivers’ experiences and needs for care of patients with PTH and shunt, and caregivers unique perceptions included: complex emotional reactions, inadequate confidence, and unmet needs. These experiences might affect the quality of care available to patients, and the results of this research are useful for health professionals to develop intervention study or discharge planning for PTH patients and their family caregivers based on their real needs and social context.

PTH

Post-traumatic hydrocephalus

TBI

Traumatic brain injury

Ethics approval and consent to participate

Research have been performed in accordance with the Declaration of Helsinki, and the ethical approval was obtained from the Ethics Committee of Institutional Review Board, Zhengzhou University (ZZUIRB2022-18), and approval for data collection was obtained from the Science and Research Department of the hospital. Informed written consent was obtained from all participants.

Consent for publication

Not applicable.

Availability of data and materials

The data that support the findings of this study are available from authors but restrictions apply to the availability of these qualitative data, which were used under license for the current study, and so are not publicly available.

Competing interests

The authors declare that they have no competing interest.

Funding

No funding.

Author Contributions

Jia-nan Wang conceptualized the study. Jia-nan Wang and Meng-jie Sun developed the interview guide, and La-mei Liu approved the guideline. Jia-nan Wang and Meng-jie Sun collected the data, supported by Yu-meng Qian, Meng-yao Zhuan Sun and Tong-yao Xu. Yu-meng Qian, Meng-yao Zhuan Sun and Tong-yao Xu transcribed the interviews, Jia-nan Wang and Meng-jie Sun analyzed and interpreted the data. Jia-nan Wang wrote the first draft of the manuscript，La-mei Liu and Ronnell Dela Rosa performed the quality control of this study, and revised the manuscript critically for important intellectual content. All authors have read and approved the final manuscript.

Acknowledgements

We thank all the caregivers who participated in this study, all nurses and doctors for their valuable assistance in recruiting participants.

De Bonis P, Anile C: Post-traumatic hydrocephalus: the Cinderella of Neurotrauma. Expert Rev Neurother 2020, 20(7):643–646. https://doi.org/10.1080/14737175.2020.1779059
Majdan M, Plancikova D, Brazinova A, Rusnak M, Nieboer D, Feigin V, Maas A: Epidemiology of traumatic brain injuries in Europe: a cross-sectional analysis. Lancet Public Health 2016, 1(2):e76-e83. https://doi.org/10.1016/S2468-2667(16)30017-2
Oi S: Classification of hydrocephalus: critical analysis of classification categories and advantages of "Multi-categorical Hydrocephalus Classification" (Mc HC). Child's nervous system: ChNS : official journal of the International Society for Pediatric Neurosurgery 2011, 27:1523–1533. https://doi.org/10.1007/s00381-011-1542-6
Dey M, Jaffe J, Stadnik A, Awad IA: External ventricular drainage for intraventricular hemorrhage. Curr Neurol Neurosci Rep 2012, 12(1):24–33.https://doi.org/10.1007/s11910-011-0231-x
Krishnamurthy S, Li J: New concepts in the pathogenesis of hydrocephalus. Transl Pediatr 2014, 3(3):185–194.https://doi.org/10.3978/j.issn.2224-4336.2014.07.02
Kim SE, Kim BJ, Cho SS, Kim HC, Jeon JP: The Incidence of Hydrocephalus and Shunting in Patients with Angiogram-Negative Subarachnoid Hemorrhage: An Updated Meta-Analysis. World Neurosurg 2018, 119:e216-e227.https://doi.org/10.1016/j.wneu.2018.07.119
Meng F, Wu H, Yang S: Clinical application of ventriculoperitoneal shunting in treating traumatic brain injury. Exp Ther Med 2019, 18(4):2497–2502.https://doi.org/10.3892/etm.2019.7860
LeHanka A, Piatt J: Readmission and reoperation for hydrocephalus: a population-based analysis across the spectrum of age. J Neurosurg 2020, 134(3):1210–1217.https://doi.org/10.3171/2020.3.JNS20528
Del Bigio MR, Di Curzio DL: Nonsurgical therapy for hydrocephalus: a comprehensive and critical review. Fluids Barriers CNS 2016, 13:3–22. https://doi.org/10.1186/s12987-016-0025-2
Mohammed A, Othman TA, Modhi AA, Fahad EA, Mohammed B: Bibliometric overview of the Top 100 most cited articles on hydrocephalus. Surg Neurol Int 2022, 13:176–187.https://doi.org/10.25259/sni_115_2022
Willis BK, Kumar CR, Wylen EL, Nanda A: Ventriculosubgaleal shunts for posthemorrhagic hydrocephalus in premature infants. Pediatr Neurosurg 2005, 41(4):178–185.https://doi.org/10.1159/000086558
Hosainey SAM, Hald JK, Meling TR: Risk of early failure of VP shunts implanted for hydrocephalus after craniotomies for brain tumors in adults. Neurosurg Rev 2022, 45(1):479–490.https://doi.org/10.1007/s10143-021-01549-7
Gholampour S, Patel J, Yamini B, Frim D: Cerebrospinal fluid hydrocephalus shunting: cisterna magna, ventricular frontal, ventricular occipital. Neurosurg Rev 2022:Advance online publication. https://doi.org/10.1007/s10143-022-01798-0
Pujari S, Kharkar S, Metellus P, Shuck J, Williams MA, Rigamonti D: Normal pressure hydrocephalus: long-term outcome after shunt surgery. J Neurol Neurosurg Psychiatry 2008, 79(11):1282–1286. https://doi.org/10.1136/jnnp.2007.123620
Marc RDB, Domenico LDC: Nonsurgical therapy for hydrocephalus: a comprehensive and critical review. Fluids and Barriers of the CNS 2015, 13:3–22.https://doi.org/10.1186/s12987-016-0025-2
Baek H, Cho M, Kim S, Hwang H, Song M, Yoo S: Analysis of length of hospital stay using electronic health records: A statistical and data mining approach. PLoS One 2018, 13(4):e0195901-e0195901. https://doi.org/10.1371/journal.pone.0195901
Abrahamson V, Jensen J, Springett K, Sakel M: Experiences of patients with traumatic brain injury and their carers during transition from in-patient rehabilitation to the community: a qualitative study. Disabil Rehabil 2017, 39(17):1683–1694.https://doi.org/10.1080/09638288.2016.1211755
Vanessa A, Jan J, Kate S, Mohamed S: Experiences of patients with traumatic brain injury and their carers during transition from in-patient rehabilitation to the community: a qualitative study. Disability and Rehabilitation 2016, 39(17):1683–1694. https://doi.org/10.1080/09638288.2016.1211755
KokWeng L, Lawrence L, Rebecca M, Mark B, Lashmi V: Assessment of caregiver burden in patients undergoing in- and out-patient neurosurgery. Journal of Clinical Neuroscience 2021, 88:83–87. https://doi.org/10.1016/j.jocn.2021.03.035
Rennke S, Ranji SR: Transitional care strategies from hospital to home: a review for the neurohospitalist. Neurohospitalist 2015, 5(1):35–42. https://doi.org/10.1177/1941874414540683
Peng R, Wu B: The Impact of Long-Term Care Policy on the Percentage of Older Adults With Disabilities Cared for by Family Members in China: A System Dynamics Simulation. Res Aging 2021, 43(3–4):147–155. https://doi.org/10.1177/0164027520923567
Nitin A, William RL, Luke CH, Andrew F, Jenna EK, Robert MF: Observations from Social Media Regarding the Symptomatology of Adult Hydrocephalus Patients. World Neurosurgery 2018(122):e307-e314. https://doi.org/10.1016/j.wneu.2018.10.027
Chahlavi A, El-Babaa SK, Luciano MG: Adult-onset hydrocephalus. Neurosurg Clin N Am 2001, 12(4):753–760
Sandra B, Shanthi A, Nicola C, Warwick T, Jennie P, Peter AC, Belinda JG: Care coordination experiences of people with traumatic brain injury and their family members in the 4-years after injury: a qualitative analysis. Brain Injury 2019, 33(5):574–583. https://doi.org/10.1080/02699052.2019.1566835
Transition between inpatient hospital settings and community or care home settings for adults with social care needs(NG27) [Available from: http://nice.org.uk/guidance/ng27]
Tribl G, Oder W: Outcome after shunt implantation in severe head injury with post-traumatic hydrocephalus. Brain Inj 2000, 14(4):345–354.https://doi.org/10.1080/026990500120637
Tenny S, Brannan GD, Brannan JM, Sharts-Hopko NC: Qualitative Study. In: StatPearls. edn. Treasure Island (FL): StatPearls Publishing; 2022.
Peters K, Halcomb E: Interviews in qualitative research. Nurse Res 2015, 22(4):6–7.https://doi.org/10.7748/nr.22.4.6.s2
Mitchell G: Use of interviews in nursing research. Nurs Stand 2015, 29(43):44–48.https://doi.org/10.7748/ns.29.43.44.e8905
Fisher JD, Amico KR, Fisher WA, Harman JJ: The information-motivation-behavioral skills model of antiretroviral adherence and its applications. Curr HIV/AIDS Rep 2008, 5(4):193–203.https://doi.org/10.1007/s11904-008-0028-y
Graneheim UH, Lundman B: Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness. Nurse Educ Today 2004, 24(2):105–112. https://doi.org/10.1016/j.nedt.2003.10.001
Yalinie K, Chitra L, Richard W, William TZ, Melanie K-A, Vicky RB, Isaac O, Fiona C, Khush A, Ewurabena AS et al: Exploring the Needs of Adolescents With Sickle Cell Disease to Inform a Digital Self-Management and Transitional Care Program: Qualitative Study. JMIR pediatrics and parenting 2019, 1(2):e11058.https://doi.org/10.2196/11058
Anderson C: Presenting and evaluating qualitative research. Am J Pharm Educ 2010, 74(8):141–148.https://doi.org/10.5688/aj7408141
What is transferability in qualitative research and how do we establish it? [https://www.statisticssolutions.com/what-is-transferability-in-qualitative-research-and-how-do-we-establish-it/]
Bijani M, Karimi S, Khaleghi A, Gholampoor Y, Fereidouni Z: Exploring senior managers' perceptions of the COVID-19 Crisis in Iran: a qualitative content analysis study. BMC Health Serv Res 2021, 21(1):1071–1082. https://doi.org/10.1186/s12913-021-07108-6
Isaacs AM, Riva-Cambrin J, Yavin D, Hockley A, Pringsheim TM, Jette N, Lethebe BC, Lowerison M, Dronyk J, Hamilton MG: Age-specific global epidemiology of hydrocephalus: Systematic review, metanalysis and global birth surveillance. PLoS One 2018,13(10):e0204926. https://doi.org/10.1371/journal.pone.0204926
Hua AY, Wells JL, Brown CL, Levenson RW: Emotional and Cognitive Empathy in Caregivers of Persons with Neurodegenerative Disease: Relationships with Caregiver Mental Health. Clin Psychol Sci 2021, 9(3):449–466.https://doi.org/10.1177/2167702620974368
Chronister J, Chan F: A stress process model of caregiving for individuals with traumatic brain injury. Rehabilitation Psychology 2006, 51:190–201.https://doi.org/10.1037/0090-5550.51.3.190
Ackerman LL, Fulkerson DH, Jea A, Smith JL: Parent/guardian knowledge regarding implanted shunt type, setting, and symptoms of malfunction/infection. J Neurosurg Pediatr 2018, 21(4):359–366. https://doi.org/10.3171/2017.9.Peds17253
Del-Pino-Casado R, Priego-Cubero E, Lopez-Martinez C, Orgeta V: Subjective caregiver burden and anxiety in informal caregivers: A systematic review and meta-analysis. PLoS One 2021,16(3):e0247143. https://doi.org/10.1371/journal.pone.0247143
Greitz D: Radiological assessment of hydrocephalus: new theories and implications for therapy. Neurosurg Rev 2004, 27(3):145–167. https://doi.org/10.1007/s10143-004-0326-9
Kraemer MR, Sandoval-Garcia C, Bragg T, Iskandar BJ: Shunt-dependent hydrocephalus: management style among members of the American Society of Pediatric Neurosurgeons. J Neurosurg Pediatr 2017, 20(3):216–224. https://doi.org/10.3171/2017.2.Peds16265
Marlin E, Golomb J, Wisoff J: Shunt malfunction and perioperative complications with non-programmable shunt valves in patients with normal pressure hydrocephalus in a series of 195 consecutive patients. Cerebrospinal Fluid Research 2009, 6(1):S44.https://doi.org/10.1186/1743-8454-6-S1-S44
Committee on Family Caregiving for Older A, Board on Health Care S, Health, Medicine D, National Academies of Sciences E, Medicine. In: Families Caring for an Aging America. edn. Edited by Schulz R, Eden J. Washington (DC): National Academies Press (US); 2016.
Sherwood G, Nickel B: Integrating Quality and Safety Competencies to Improve Outcomes: Application in Infusion Therapy Practice. J Infus Nurs 2017, 40(2):116–122.https://doi.org/10.1097/NAN.0000000000000210
Smith J, Cheater F, Bekker H: Parents' experiences of living with a child with hydrocephalus: a cross-sectional interview-based study. Health Expect 2015, 18(5):1709–1720.https://doi.org/10.1111/hex.12164
Blum K, Sherman DW: Understanding the experience of caregivers: a focus on transitions. Semin Oncol Nurs 2010, 26(4):243–258. https://doi.org/10.1016/j.soncn.2010.08.005
Ntsayagae EI, Poggenpoel M, Myburgh C: Experiences of family caregivers of persons living with mental illness: A meta-synthesis. Curationis 2019, 42(1):e1-e9.https://doi.org/10.4102/curationis.v42i1.1900
About Hydrocephalus [https://
Caus PA, Hamamoto Filho PT, Avila MAG: Caregivers' evaluation of an educational material targeted to children with hydrocephalus. Childs Nerv Syst 2021, 37(1):81–89.https://doi.org/10.1007/s00381-020-04682-8
Institute of Medicine Committee on Improving Quality in Long-Term C. In: Improving the Quality of Long-Term Care. edn. Edited by Wunderlich GS, Kohler PO. Washington (DC): National Academies Press (US); 2001.

No competing interests reported.

Download PDF

Editorial decision: Major revision
27 Jun, 2022
Editor assigned by journal
24 Jun, 2022
Editor invited by journal
22 Jun, 2022
Submission checks completed at journal
22 Jun, 2022
First submitted to journal
13 Jun, 2022

You are reading this latest preprint version

Experiences of family caregivers of patients with post-traumatic hydrocephalus from hospital to home: a qualitative study

Status:

Version 1

Abstract

Background

Methods

Results

Conclusions

Background

Methods

Result

Complex Emotional Reactions

Helpless to patients’ new diagnosis

Uncertain reaction to patient’ s prognosis

Discontinuity between caregivers and professionals

Inadequate Confidence In Caregiving

Feeling insufficiency in caregiving

Struggling to live a normal life

Unmet Needs

Understanding hydrocephalus and shunt

Recognizing common symptoms and shunt malfunction

Developing professional organization

Financial difficulty

Psychological support

Discussion

Strengths And Limitations

Conclusion

Abbreviations

Declarations

References

Additional Declarations

Status:

Version 1