Family Involvement In Rehabilitation Research Articles

Family-centred service in paediatric acquired brain injury rehabilitation: perspectives of children and adolescents and their families

Purpose Family-centred service is considered best practice in paediatric acquired brain injury (ABI) rehabilitation. However, there is no universal model to guide clinicians and services in implementing this approach with a lack of research evidence informed by the lived experience of families. This study explored experiences of family-centred service during rehabilitation from the perspectives of parents/caregivers, siblings, and children/adolescents with ABI. Materials and methods Semi-structured interviews were conducted with participants from eight families, and included 10 parents/caregivers, five siblings, and four children/adolescents with moderate to severe ABI. Interview transcripts and additional data were analysed using constructivist grounded theory methods. Results Two themes and five sub-themes were developed: (1) Working together as a team: Valuing clinicians’ expert knowledge; Doing rehabilitation together; and Sharing family knowledge; and (2) Navigating rehabilitation as a family: Recognising family needs; Juggling family life; and Making rehabilitation work for the family. Participants reflected on the centrality of the child/adolescent with ABI during rehabilitation, and the ways that family needs, life, and involvement in rehabilitation change over time. Conclusions These findings highlight the importance of clinicians actively seeking to understand families’ unique contexts, needs, and priorities during rehabilitation through two-way information sharing with families. Through developing a greater understanding of families’ unique contexts, clinicians can be better placed to tailor rehabilitation according to their unique circumstances and needs. Implications for rehabilitation Rehabilitation involves active collaboration between families and clinicians that is responsive to changing needs over time. Family involvement in rehabilitation is shaped by family life, and families have unique needs following paediatric acquired brain injury. It is important that clinicians strive to develop an understanding of families’ unique needs, values, preferences, and lives to determine how to best support and involve them in rehabilitation.

Virtual visiting in intensive care during the COVID-19 pandemic: a qualitative descriptive study with ICU clinicians and non-ICU family team liaison members

ObjectiveTo understand the experiences and perceived benefits of virtual visiting from the perspectives of intensive care unit (ICU)-experienced clinicians and non-ICU-experienced family liaison team members.DesignQualitative descriptive study.SettingAdult intensive care setting...

A systematic review of the qualitative literature on older individuals' experiences of care and well-being during physical rehabilitation for acquired brain injury.

AimsTo acquire an in‐depth understanding of how older individuals diagnosed with acquired brain injury (ABI) experience their well‐being and care when undergoing physical rehabilitation.DesignSystematic literature review.Data sourcesThe electronic databases of PubMed, CINAHL, APA PsycInfo, ASSIA and SCOPUS were searched from 2005 to 2020. Extensive reference checking was also conducted.Review methodsA systematic review was conducted following PRISMA guidelines, including predominantly qualitative studies. Studies’ quality was appraised using the critical apraisal skills programme (CASP) tool.ResultsSeventeen studies met the inclusion criteria. Following methods of thematic synthesis, four overarching interpretive themes were identified: (a) Rehabilitation processes and their impact on older individuals’ well‐being; (b) Identity and embodiment concerns of older individuals during rehabilitation; (c) Institutional factors affecting older individuals’ care and well‐being experiences; and (d) Older individuals’ participation in creative activities as part of rehabilitation.ConclusionOrganizational and structural care deficiencies as well as health disparities can adversely impact older individuals’ autonomous decision‐making and goal‐setting potentials. The discrepancy between older individuals’ expectations and the reality of returning home along with the illusionary wish to return to a perceived normality, can further negatively affect older individuals’ sense of well‐being. Constructive communication, emotional support, family involvement in rehabilitation and creating a stimulating, enriching social environment can humanize and facilitate older individuals’ adjustment to their new reality following ABI.ImpactThere is a lack of qualitative research on older individuals’ ABI rehabilitation experiences, especially traumatic brain injury incidents. Further study should consider patients’ concerns over their involvement in decision‐making and goal setting about their care. Overall, this review reveals the need to examine further the significance of humanizing care and the factors that affect older individuals’ sense of well‐being.

Family composition and living arrangements-Cross-sectional study on family involvement to self-managed rehabilitation of people with coronary artery disease.

AimTo describe the family composition and living arrangements of persons diagnosed with coronary artery disease and those relationships to family involvement in self‐managed rehabilitation.DesignA cross‐sectional study.MethodsData were collected with postal questionnaire from persons diagnosed with coronary artery disease (CAD) by using the Family Involvement in Rehabilitation (FIRE) scale. It measures family members' promotion of patients' rehabilitation and issues encumbering rehabilitation in family. Statistical methods were used to analyse the data.ResultsPatients' gender and having children in the family were predictors of issues encumbering rehabilitation in the family. But when examining living arrangements, patients who lived with a spouse or underage children had a better environment for recovery than those who lived alone or with adult children. More attention should be paid to targeting appropriate support for persons with coronary artery disease and their family members during the rehabilitation phase.

Family role in in-patient rehabilitation: the cases of England and Turkey

Purpose This article explores the differences between experiences of family role in in-patient rehabilitation in Turkey and England. Background The literature predominantly assumes family presence in rehabilitation as positive, because it draws upon Western cases, where care is delivered fully by professionals, and patients may feel isolated during hospital stays. Analyses of other contexts provide a more nuanced view. Method This qualitative research included in-depth interviews (Turkey: 42, England: 18) with people with disabilities (n = 39), their families (n = 8) and hospital staff (n = 13); hospital ethnography (Turkey), focus groups (England: 3 groups involving 4 doctors, 5 nurses, 6 therapists), and participant-observation (England: 5 families). Thematic analysis highlights experiences of family involvement across different contexts. Results Families are differently integrated in rehabilitation in England and Turkey. In England, where family presence is regulated and relatively limited, people with disabilities feel more isolated and see family as a major form of support. In Turkey, where family presence is unregulated and intense, they enjoy family as an agent of intra-hospital socialising, but find it disabling when it implies a loss of privacy and individuality. Conclusion Family involvement in rehabilitation should support social interaction but allow people with disabilities to remain independent. Implications for rehabilitation Family involvement in rehabilitation can be both enabling and disabling. Existing literature draws upon rehabilitation practices, where family presence is limited and perceived as positive. An analysis of cases, where families are integral to the health care system (e.g., Turkey), can provide a nuanced view of family integration, which can be both enabling and disabling. Rehabilitation processes and health professionals need to integrate families in ways that will enrich social interaction, but still allow people with disabilities to retain their independence.

Praćenje oporavka tokom rehabilitacije senzomotorne afazije - studija slučaja

Introduction: Rehabilitation of aphasia depends on the localization, severity and extent of brain damage, length and intensity of rehabilitation, patient age, motivation, family support and environment, material conditions and other factors. Aim: Aim of the paper was to determine the outcomes of speech-language rehabilitation of patient N.N. with sensory aphasia resulting from brain injury caused by a fall down the stairs. The methodology was based on follow up of theoutcomes of speech rehabilitation for more than four months. We used the Boston Aphasia Diagnostic Test (BDAE). Case reaport: During patient's rehabilitation, we relied mainly on partially preserved reading ability, which is not specific to this type of aphasia. The first assessment of speech and language skills is not fully credible due to the poor general condition of the patient, the blurring of consciousness and other circumstances that cause the rehabilitation to be interrupted. After improving the general condition, the patient was readmitted, and the speech therapist performed an assessment and the patient was found to have sensory aphasia, with specificities in the form of partially preserved reading ability, which was used during rehabilitation. The assessment was performed four times over a 4-month period. After the patient's re-arrival, a speech therapy was performed at the hospital for a month, and after discharge from the institution, treatment continued in the family, occasionally following the instructions of the speech therapist. At the beginning of rehabilitation in the BDAE speech subtest, the patient achieved minimal results, while at the end of rehabilitation he achieved significantly more successful results in all segments of auditory comprehension. Conclusion: Good assessment of language status, planning of rehabilitation, follow-up of course of rehabilitation, encouragement, patient motivation, and family involvement in rehabilitation lead to good results in rehabilitation of aphasia.

Family involvement in rehabilitation: Coronary artery disease-patients' perspectives.

To describe coronary artery disease patients' perceptions of family involvement in rehabilitation and the connection between background factors and family involvement. Coronary artery disease patients' hospital stays can be very concise. Family members can support rehabilitation, but many challenges can emerge. There is a need to nurture patients and family members in an individual way and to recognise their concerns. More accurate patient education should be available for patients and their family members. This study is a descriptive cross-sectional study. Data were collected from patients with coronary artery disease at least 6weeks after discharge from hospital (n=169) with a postal questionnaire. The Family Involvement in Rehabilitation (FIRE) scale measures family members' promotion of patients' rehabilitation and issues encumbering rehabilitation in family. The data have been analysed with statistical methods. Both parametric and nonparametric tests were used to evaluate group differences. Patients with coronary artery disease perceived that family promotes their rehabilitation significantly. Respondents also perceived challenges at home. Family relations before hospitalisation were related to all subareas of family promoting rehabilitation and one subarea of issues encumbering rehabilitation in family. Patients with symptoms at rest also had more encumbrance on their rehabilitation. Patients who had undergone coronary artery bypass surgery perceived more challenges than percutaneous coronary intervention (PCI) patients in many subareas of issues encumbering rehabilitation in family. Family relations prior to illness and the rigour of heart symptoms are significantly relevant to challenges that can occur between patient and their family members. Healthcare staff need to pay attention to coronary artery disease patients' individual situation, and patient education should be more family-centred. In the future, it would be noteworthy to collect more data from family members of patients with coronary artery disease and to find out their perceptions of family involvement.

Sensitive periods and language in cochlear implant users.

This study explores the hypothesis that the existence of a short sensitive period for lower-level speech perception/articulation skills, and a long one for higher-level language skills, may partly explain the language outcomes of children with cochlear implants (CIs). The participants were fourteen children fitted with a CI before their second birthday. Data about their language skills and the environmental conditions (e.g. Family Involvement in rehabilitation) were obtained over a period of three years. Age at implantation correlated exclusively with the ratio of errors of place of articulation, a phonological feature for which CIs provide insufficient information. The degree of Family Involvement was significantly correlated with the remaining language measures. We conclude that small plasticity reductions affecting lower-level skills may partly explain the difficulties of some CI users in developing language.

Benefits and challenges of providing transitional rehabilitation services to people with spinal cord injury from regional, rural and remote locations

To identify the factors influencing participation and outline the benefits and challenges of providing transitional rehabilitation for people with spinal cord injury (SCI) from rural and regional locations. Grounded Theory analysis of service records and policy documents. One transitional rehabilitation service for people with SCI. Service records of 40 individuals with SCI from non-metropolitan locations who participated in transitional rehabilitation and 29 individuals with SCI who declined transitional rehabilitation over a two-year period. Home-based transitional rehabilitation programs offered by a multidisciplinary team including physiotherapy, occupational therapy, nursing and social work. Participation was measured using the percentage of people from non-metropolitan locations who decline transitional rehabilitation. The benefits and challenges of transitional rehabilitation were identified using open, axial and selective coding of service records. People with SCI from non-metropolitan areas were underrepresented among transitional rehabilitation participants, with 69% of those declining transitional rehabilitation coming from regional or rural areas. The study identified five functions of transitional rehabilitation that presented both benefits and challenges of this model in assisting people from non-metropolitan locations. These included: (1) the identification, education, coordination and funding of local care providers; (2) family involvement in rehabilitation; (3) contact with social and community supports; (4) specialist support to problem-solve discharge needs; and (5) skill acquisition and transfer in a community environment. The transitional rehabilitation model offers many advantages over traditional hospital-based rehabilitation but still faces challenges in offering an equitable model for people with SCI from non-metropolitan locations.

People with arthritis and their families in rehabilitation, care and research

People with arthritis play major roles in treatment and research. This review summarises the current knowledge on tools for enhancing shared-decision making in arthritis care; individual and family involvement in rehabilitation; and the consumer's role in arthritis research. There are discrepancies in the use of appropriate arthritis treatment. To facilitate evidence-informed treatment choices, a number of decision aids have been developed. A recent systematic review concluded that decision aids could improve the shared-decision making process in a variety of diseases; but only one clinical trial was found on a musculoskeletal condition (back surgery). The evidence on family member participation in arthritis education programs is mixed, partly due to a lack of content specifically targeting family members in some studies. Finally, people with arthritis are playing important roles as collaborators in research. Early experience indicates a mutually beneficial relationship for both the individual and researchers. This review offers three recommendations: First, further clinical trials are needed to test the effectiveness of decision aids in arthritis management. Second, education programs involving strong social support training for family members may improve client outcomes. Third, we encourage further studies to examine the experiences and challenges of people living with arthritis when participating as research partners.

The views of patients with spinal cord injuries on their rehabilitation experience

Background and Purpose: Spinal rehabilitation programs seek toenhance the residual functional abilities of people who have an acquired disabling impairment because of SCI. Very little has been published on how patients experience rehabilitation, and what the implication of their experience is on rehabilitation outcomes. The aim of this pilot study was to explore the views of patients with SCI regarding their experience of rehabilitation while in hospital.Materials and Methods: A qualitative exploratory study using semi-structured interviews was employed. Twelve patients constituted the sample of convenience. Qualitative techniques were used to analyze the data.Results: The study revealed a variety of psycho-emotional issues related to the patients’ experience of rehabilitation. Positive issues included being treated humanly, being told the truth abouttheir condition early on, family involvement in rehabilitation and being allowed to contribute to decision making regarding their rehabilitation. Negative issues were mainly their lack of insight into their health condition.Conclusion: The study highlighted important psycho-emotional issues related to the patients’ experience of rehabilitation. Rehabilitation personnel must consider these issues when working with patients with spinal cord injury, to ensure effective rehabilitation outcomes.

Outcome measurement in stroke rehabilitation research.

The use of outcome measures in stroke rehabilitation research is examined in a sample of 50 representative articles. Research studies are found not adequately to reflect the aims of stroke rehabilitation expressed by leading practitioners in the field. In particular, evaluations of rehabilitation programmes tend to use physical and self-care measures to the exclusion of broader aims. Recent advances in health measurement are reviewed, and it is recommended that researchers in this area make greater use of measures of subjective evaluations of health status, family involvement in rehabilitation, patient satisfaction, and quality of life.