Patient perspectives on navigating the field of traumatic brain injury rehabilitation: a qualitative thematic analysis

Purpose: This study aimed to provide an understanding of the lived experience of rehabilitation in adults with traumatic brain injury (TBI) from hospital discharge up to four years post-injury.

Materials and methods: We used a qualitative explorative design with semi-structured in-depth interviews. Twenty participants with TBI were included from a level I Trauma Center in Denmark at 1–4 years post-injury. Qualitative thematic analysis was applied for data analysis.

Results: Three main themes emerged during analysis: A new life, Family involvement, and Rehabilitation impediments. These themes and their sub-themes described the patient perspective of TBI and rehabilitation post hospitalization. Participants reassessed their values and found a new life after TBI. Family caregivers negotiated rehabilitation services and helped the participant to overcome barriers to rehabilitation. Although participants were entitled to TBI rehabilitation, they had to fight for the services they were entitled to.

Conclusion: Individuals with TBI found ways of coping after injury and created a meaningful life. Barriers to TBI rehabilitation were overcome with help from family caregivers rather than health care professionals. Future studies need to find ways to ease the burden on family caregivers and pave the way for more accessible rehabilitation in this vulnerable group of patients.

• Implications for rehabilitation

• TBI rehabilitation might benefit from:

• ??Increased transparency in rehabilitation options

• ??More systematic follow-up programs

• ??Age-appropriate rehabilitation facilities

• ??Inclusion of patient and family in the planning of long-term rehabilitation

     

Meeting the mental health needs of people with multiple sclerosis: a qualitative study of patients and professionals

Purpose: To explore perspectives and experiences of people with multiple sclerosis (MS) and health care professionals of mental health support for MS in the UK.

Method: 24 people with MS, 13 practice nurses, 12 general practitioners (GPs) and 9?MS specialist nurses were recruited through community groups and primary care practices across North West England. Semi-structured interviews were conducted, and data analyzed thematically using constant comparative analysis within and across the data sets. The theoretical framework of candidacy was used to interrogate data.

Results: Four themes were identified: candidates for care, management choices, defining roles, and permeability and responsiveness.

Discussion: Candidacy for care, and symptom management, depended on the framing of symptoms through a social or medical model of depression. Normalizing symptoms could prevent help-seeking by patients. Reported referral behavior varied by professional group, based on perceived remit, competency and training needs. GPs were perceived by patients and other professionals as central for management of mental health needs in MS, but may not perceive this role themselves, suggesting a need for increased knowledge, training, and improved access to specialist care.

• Implications for Rehabilitation

• Anxiety and depression are common in people with MS.

• Management of mental health needs in people with MS relies on complex decisions made by both people with MS and health care professionals.

• General practitioners may play a key role in the ongoing management of mental health needs of people with MS.

     

Perspectives of individuals with sub-acute spinal cord injury after personalized adapted locomotor training

Purpose: Locomotor training after incomplete spinal cord injury can improve walking function, and cardiovascular and muscle health. Participants’ perspectives about locomotor training, however, have not been extensively studied. This study describes the experiences of individuals with sub-acute incomplete spinal cord injury who completed personalized adapted locomotor training; a locomotor-focused rehabilitation tailored to individual goals. Specifically, we examined how participation in this training impacted their lives and what challenges they encountered.

Materials and methods: Following inpatient rehabilitation, seven participants completed 74–197?h of personalized adapted locomotor training. Using conventional content analysis, themes were identified from post-training interviews. Trustworthiness was enhanced through analysis trials, verbatim quotes, and triangulation.

Results: Three themes emerged: motives for participating, perceived benefits, and perceived challenges. Beliefs that higher intensity leads to quicker recovery of prior function motivated participation. Physical and psychological health improvements, favorable training structure, and empowerment to self-manage their rehabilitation were perceived benefits. Neglect of other commitments, acquiring extra services to participate (e.g. accessible transportation), limited transferability to daily walking, and a rigid training structure were perceived challenges. Program recommendations were formed from the perceived challenges.

Conclusions: Personalized adapted locomotor training was positively regarded by participants. Addressing the perceived challenges may improve the training experience.

• Implications for Rehabilitation

• Personalized adapted locomotor training (PALT) is a high-intensity locomotor therapy tailored to an individual’s goals.

• The experiences of individuals with iSCI highlight the impact of PALT on physical and psychological well-being.

• PALT has the potential to improve physical functioning and facilitate transitions from inpatient rehabilitation to community living.

• Findings suggest the need for adaptation of PALT to suit the unique needs of each individual.

     

Practice guidelines for program evaluation in community-based rehabilitation

Purpose: This paper proposes practice guidelines to evaluate community-based rehabilitation (CBR) programs.

Method: These were developed through a rigorous three-phase research process including a literature review on good practices in CBR program evaluation, a field study during which a South Africa CBR program was evaluated, and a Delphi study to generate consensus among a highly credible panel of CBR experts from a wide range of backgrounds and geographical areas.

Results: The 10 guidelines developed are summarized into a practice model highlighting key features of sound CBR program evaluation. They strongly indicate that sound CBR evaluations are those that give a voice and as much control as possible to the most affected groups, embrace the challenge of diversity, and foster use of evaluation processes and findings through a rigorous, collaborative and empowering approach.

Conclusions: The practice guidelines should facilitate CBR evaluation decisions in respect to facilitating an evaluation process, using frameworks and designing methods.

• Implications for rehabilitation

• Ten practice guidelines provide guidance to facilitate sound community-based rehabilitation (CBR) program evaluation decisions. Key indications of good practice include:

• ??being as participatory and empowering as possible;

• ??ensuring that all, including the most affected, have a real opportunity to share their thoughts;

• ??highly considering mixed methods and participatory tools;

• ??adapting to fit evaluation context, local culture and language(s);

• ??defining evaluation questions and reporting findings using shared CBR language when possible, which the framework offered may facilitate.

     

Experiences with and perceptions of an adaptive hiking program

Purpose: Outdoor activities in natural settings have been found to be beneficial for overall health and well-being. However, people with disabilities may have different experiences accessing outdoor activities in natural settings. This research explored the experiences of users, volunteers, and staff, and perspectives of non-users about an adapted hiking program that uses a specialized mobility device called a TrailRider. The research had three objectives:

1.?Describe the experiences of users, volunteers, and staff;

2.?Identify perceived barriers to or limitations of participating for users, volunteers, staff, and non-users; and

3.?Explore the impact of participation for users, volunteers, and staff.

Method: This ethnographic study used a combination of observations and in-depth interviews as a means of data collection.

Results: Researchers accompanied 38 participants on five hikes and conducted semi-structured interviews with 20 participants. Analysis identified three themes: “Let the Good Times Roll” described how TrailRider users and volunteers enjoyed the opportunity to explore the great outdoors. “An Uphill Battle” acknowledged perceived physical and psychological barriers to participation. “Clearing the Path” addressed potential areas for program improvement.

Conclusions: This study emphasized how volunteers and users appreciated the outdoor and social opportunities the program afforded. The study identified a number of potential improvements that could be implemented to improve access to the program.

• Implications for Rehabilitation

• Outdoor recreation programs create positive experiences, as well as unique social opportunities for users and volunteers.

• Identifying and considering physical and psychological barriers would improve wilderness access for individuals with disabilities.

• Despite the fact that outdoor recreation programs, like the adaptive hiking program, are in place, deficient marketing and promotion limit users and volunteers from taking part.

     

A thematic framework of illness narratives produced by stroke patients

Abstract

Purpose: The present study aims at elucidating the impact of stroke on psychosocial functioning of stroke survivors. Methods: Data were investigated using interpretative thematic analysis of illness stories produced by 29 patients. Results: Eight themes emerged from the data: Medical Information; Interpersonal Changes; Cognitive, Physical and Emotional Functioning; Strategies of Coping; Social Support; and Information Irrelevant to the Question. The most frequent organization of the themes followed the course of medical intervention and rehabilitation. Narrations of individual patients varied in terms of the presence of particular themes, the amount of information on each topic and organization. Conclusions: The results suggest that the analysis of non-guided illness narratives can be effectively used to identify the thematic areas important to individual stroke patients. The thematic content analysis of stroke stories can allow health professionals to better understand the patient’s state of knowledge related to illness as well as his or her socio-psychological functioning which may be useful in the course of planning further assessment and rehabilitation of patients with stroke.

• Implications for Rehabilitation

• Experience of illness and life changes following stroke should be recognized as central to the provision of targeted rehabilitation.

• To understand the subjective perspective a content analysis of the content narrative is recommended.

• Our study highlights seven general thematic categories that may be regarded as key.

• The categories may be useful for clinicians to help individuals to clarify their main concerns following a stroke.

     

Multi-stakeholder perspectives on information communication technology training for older adults: implications for teaching and learning

Abstract

Objectives: The objective of this research was to identify and conceptualize barriers and strategies for effective implementation of information communication technology (ICT) training for older adults.

Methods: A grounded theory approach was used to collect and analyze qualitative data from 61 participants in three stakeholder groups: older-adult ICT trainees, care providers and ICT trainers.

Results: Care providers expressed older adults’ reluctance, lack of affinity, fears and socio-contextual attributes as barriers to overcome with ICT training. ICT trainers highlighted motivation, trainer–trainee relationship, patience, self-reliance and mutual value as strategic themes. ICT trainees elucidated occupational accomplishment, challenges and a sense of competence as themes from their experience with training.

Discussion: While digital literacy and skill building have traditionally been the key focus of ageing-centred ICT training, a deeper approach to address internal (personal) and external (socio-contextual) barriers, as conceptualized in the study finding, is vital in yielding successful outcomes.

• Implications for rehabilitation

• Information communication technology (ICT) is a vital resource for older adults to age-in-place and for health professionals in delivery of tele-rehabilitation.

• Family members and care providers realize the scope of ICT for ageing-in-place but raise doubts on the inherent motivation and abilities of older adults to adopt ICT.

• On the other hand, older adults who engage in one-on-one ICT training value their new-found sense of accomplishment and competence in using the Internet and social media.

• Graduate students who provided the training greatly appreciate their own learning experience, and stress the need for mutual trust, patience and simplicity in teaching ICT.

• A major precursor to imparting digital literacy and skills in older adults who lack ICT exposure is to help them overcome deep-seated attitudinal and socio-contextual barriers through a one-on-one approach.

     

Parental and practitioner perspectives on raising an adolescent with a disability: a focus group study

Abstract

Purpose: To examine the challenges faced by parents of teenagers with a disability to determine the need for a tailored parenting program for this population. Method: Focus groups were conducted with six parents and nine practitioners with experience supporting parents of teenagers with a disability. Results: An inductive thematic analysis revealed close agreement between parents and practitioners and eight understandable and relevant themes. The results indicated that parents have difficulty planning and facilitating transitions for their adolescent children, managing behavioural problems due to these problems being unique to this developmental period and because some of the parenting strategies that were useful when their children were younger were no longer applicable. High levels of stress and feelings of grief were also described. Conclusions: These results suggest that parents of adolescents with a developmental disability could benefit from a parenting program and that an existing evidence-based parenting program should be modified. Implications for program design for this population are discussed.

• Implications for Rehabilitation

• Parents have difficulty supporting their teenagers’ behaviour.

• Some parenting strategies that were useful for young children are no longer applicable.

• Parents may benefit from a parenting program tailored for teenagers.

     

Educational content related to postcolonialism and indigenous health inequities recommended for all rehabilitation students in Canada: a qualitative study

Abstract

Background: Postcolonial analysis can help rehabilitation providers understand how colonization and racialization create and sustain health inequities faced by indigenous peoples. However, there is little guidance in the literature regarding inclusion of postcolonialism within rehabilitation educational curricula. Therefore, this study explored perspectives regarding educational content related to postcolonialism and indigenous health that rehabilitation students in Canada should learn to increase health equity.

Methods: This qualitative study involved in-depth, semi-structured interviews with 19 individuals with insight into postcolonialism and health in Canada. Data were analyzed collaboratively to identify, code, and translate themes according to a structured six-phase method.

Results: Four themes emerged regarding educational content for rehabilitation students: (1) the historic trauma of colonization and its ongoing impacts on rehabilitation for indigenous peoples; (2) disproportionate health burden and inequitable access to health services; (3) how rehabilitation is related to Indigenous ways of knowing; and (4) why rehabilitation is well-positioned to address health inequities with Indigenous Peoples.

Conclusion: Results call for reflection on assumptions underpinning the rehabilitation professions that may unintentionally reinforce health inequities. A postcolonial lens can help rehabilitation educators promote culturally safe services for people whose ill health and disability are linked to the effects of colonization.

• Implications for Rehabilitation

• Given the powerful, ongoing effects of colonization and racialization on health and disability, recommendation #24 from the Truth and Reconciliation Commission of Canada calls for the education of health professionals related to Indigenous history, rights, and anti-racism. However, there is little curricula on these areas in the education of rehabilitation professional students or in continuing education programs for practicing clinicians.

• This is the first study to investigate expert perspectives on content related to postcolonialism and indigenous-settler inequities that should be included in the education of rehabilitation students in Canada.

• According to the participants in this study, rehabilitation educators in Canada should consider incorporating the following four themes into curricula to better address Indigenous-settler inequities in the context of rehabilitation: (1) the historic trauma of colonization and its ongoing impacts on rehabilitation for Indigenous Peoples in Canada; (2) disproportionate health burden and inequitable access to health services; (3) how rehabilitation is related to Indigenous ways of knowing; and (4) why rehabilitation is well-positioned to rise to the challenge of addressing health inequities with Indigenous Peoples in Canada.

• Postcolonialism is useful for rehabilitation providers because it is an approach that redirects the focus of problems from Indigenous People to the systems of oppression (specifically colonization and racialization) that cause ill health and disability.

     

Exploring strategies used to deliver physical activity experiences to Veterans with a physical disability

Abstract

Purpose: Physical activity is an important method of rehabilitation used to promote positive physical and psychosocial outcomes among military personnel, including Veterans, with a physical disability. However, minimal research has explored physical activity program implementation strategies, particularly how these strategies may foster positive rehabilitation outcomes, and quality participation experiences among Veterans post-injury. The purpose of the current study is to document strategies used to deliver physical activity programs to Veterans with a physical disability.

Research methods: Semi-structured interviews were conducted with program staff from three Veteran physical activity programs, and program documentation was collected. Data were analyzed using a thematic analysis.

Results: Four themes were identified representing strategies used for delivering physical activity programming: (1) foster social connections; (2) challenge participants; (3) tailor programs and outcomes to match participant needs; and (4) include knowledgeable coaches/instructors.

Conclusions: The study provides researchers and practitioners (e.g., rehabilitation professionals, program facilitators, coaches) with evidence of strategies for delivering physical activity programming for Veterans post-injury, thus assisting with future program development and evaluation. The findings also provide preliminary insight regarding the potential relationships between physical activity programming and elements of quality participation.

• Implications for Rehabilitation

• Physical activity is a popular method of rehabilitation for military personnel post-injury.

• Findings highlight four strategies used to deliver physical activity experiences to Veterans with a physical disability.

• Strategies highlighted provide insight as to how rehabilitation specialists can promote quality experiences for Veterans with a physical disability during physical activity programming.

     

Involving family members in physiotherapy for older people transitioning from hospital to the community: a qualitative analysis

Abstract

Purpose: To generate an understanding of the opinions of key people associated with a program for older people transitioning from hospital back to the community and explore their thoughts around training family members to help provide physiotherapy. Method: A qualitative study using focus groups and semi-structured interviews was conducted. Participants included patients admitted to a transitional care program, their family members, physiotherapists working in transitional care and members of a consumer group from the health service where the transitional care program was based. Data were transcribed verbatim and a thematic analysis was conducted. Results: Four patients, four family members, four consumer group members and eight physiotherapists participated in this study. Three themes emerged: family members providing physiotherapy may improve outcomes for patients; training family members to provide physiotherapy should include key elements and be individualised; and involving family members in physiotherapy may impact positively and negatively on people and relationships. Conclusions: Older people transitioning from hospital to the community are at risk of functional decline and may receive very little physiotherapy. Training family members to assist with physiotherapy was perceived as a way to improve patient outcomes and relationships between patients and their family, although there were concerns raised about caregiver stress. Evaluation of the feasibility and effectiveness of this approach is warranted.

• Implications for Rehabilitation

• Older people transitioning from hospital to the community are at risk of functional decline and often receive very little physiotherapy.

• Training family members to assist with simple physiotherapy programs may increase the amount of physiotherapy patients transitioning from hospital to the community can receive and improve functional outcomes for patients.

• Stakeholders perceive that individualising a program to patient and family member needs is important.

• Involving family members in physiotherapy may not increase caregiver stress and may improve relationship dynamics between patients and family members.

     

Veterans transitioning from isolation to integration: a look at veteran/service dog partnerships

Abstract

Background: This study explored the dynamics of veteran/service dog partnerships by gathering the perspectives of veterans with a history of post-traumatic stress disorder and/or traumatic brain injury.

Methods: Exploratory qualitative methods (focus groups and individual interviews) were used to investigate veteran/service dog relationships related to community involvement, family and friend relationships, self-care, work, and leisure. Nine male veterans, Paws, and Stripes program graduates participated. Data were audio recorded and transcribed by two research team members who used qualitative analytic software to manage and code the data. The full research team discussed themes and reached consensus on the themes that emerged from analysis.

Results: Five themes emerged about the perceived benefit of veteran/service dog relationship: Secluded but Seeking Society (moving from isolation to reconnection); Opening Opportunities (navigating daily life); Bridging the Gap (facilitating social opportunities); and Reclaiming Life (transforming sense of worth and purpose). An overarching theme, Calming Catalyst, connected the other four themes.

Conclusions: Veterans in this study reported that their goal was to reclaim and develop key aspects of their lives and they perceived service dogs as a support in their transition from isolation to reintegration. This study found that service dogs supported the veterans to meet their goal.

• Implications for rehabilitation

• There are a significant number of veterans with post-traumatic stress disorder and/or traumatic brain injury who are facing life challenges including self-care, securing work, participating in leisure activities, and integrating into the community.

• Service dogs are an emerging intervention used to assist veterans with reintegration into civilian life.

• There is a need for professionals to be aware of potential benefits of service dog/veteran partnerships.

• Based on our findings, veterans could benefit from being paired with a service dog to facilitate their successful return to community life.

     

Training rehabilitation teams in sexual health care: A description and evaluation of a multidisciplinary intervention

Background: Sexual health problems are more prevalent among people with a chronic illness or physical disability than among the general population. Although sexual health care in the rehabilitation setting in the Netherlands is a growing field of interest, integrating sexual health in the overall care for rehabilitation patients has proven to be a challenge.

Methods: This article describes a training designed for rehabilitation professionals working in operational multidisciplinary teams. The main objective of this training is to help create a professional environment in which sexual health problems can be discussed, if possible prevented and when needed treated. A pretest–posttest design was used to measure the impact of this educational program given to six teams in the Netherlands.

Results: The results demonstrated that the staff’s knowledge, comfort levels and approach levels significantly increased. Team members were more active concerning sexual health and patient care.

Conclusion: These findings clearly indicate that rehabilitation workers can benefit from a custom fit design team training on sexual health care. Strategically working with the modus operandi of a multidisciplinary team, such as task definition, determining pro- and reactive roles and formal agreements, appears to be of importance in integrating sexual health in the overall care for patients.

• Implications for Rehabilitation

• Sexuality and intimacy are important aspects of quality of life and difficult to integrate in rehabilitation treatment.

• A multidisciplinary Team Training Sexual Health Care (TTSHC) has been developed with core themes: talking about sex, using a biopsychosocial approach, identifying and understanding sexual health issues, applying the existing expertise of the MDT for sexual health care.

• After the TTSHC all the participants of the MDTs show significantly more active behavior concerning sexual health and patient care.

• Defining roles and responsibilities in the MDT is important for integrating sexual health care in rehabilitation treatment.

     

Post-acute care referral and inpatient rehabilitation admission criteria for persons with brain injury across two Canadian provinces

Purpose: Investigate health care providers’ perceptions of referral and admission criteria to brain injury inpatient rehabilitation in two Canadian provinces.

Methods: Health care providers (n?=?345) from brain injury programs (13 acute care and 16 rehabilitation facilities) participated in a cross-sectional web-based survey. The participants rated the likelihood of patients (traumatic brain injury and cerebral hypoxia) to be referred/admitted to rehabilitation and the influence of 19 additional factors (e.g., tracheostomy). The participants reported the perceived usefulness of referral/admission policies and assessment tools used.

Results: Ninety-one percent acute care and 98% rehabilitation participants reported the person with traumatic brain injury would likely or very likely be referred/admitted to rehabilitation compared to respectively 43% and 53% for the patient with hypoxia. Two additional factors significantly decreased the likelihood of referral/admission: older age and the combined presence of minimal learning ability, memory impairment and physical aggression. Some significant inter-provincial variations in the perceived referral/admission procedure were observed. Most participants reported policies were helpful. Similar assessment tools were used in acute care and rehabilitation.

Conclusions: Health care providers appear to consider various factors when making decisions regarding referral and admission to rehabilitation. Variations in the perceived likelihood of referral/admission suggest a need for standardized referral/admission practices.

• Implications for Rehabilitation

• Various patient characteristics influence clinicians’ decisions when selecting appropriate candidates for inpatient rehabilitation.

• In this study, acute care clinicians were less likely to refer patients that their rehabilitation counter parts would likely have admitted and a patient with hypoxic brain injury was less likely to be referred or admitted in rehabilitation than a patient with a traumatic brain injury.

• Such discrepancies suggest that policy-makers, managers and clinicians should work together to develop and implement more standardized referral practices and more specific admission criteria in order to ensure equitable access to brain injury rehabilitation services.

     

Service,training and outreach – the EARS Inc. Model for a self sustainable hearing program in action

Abstract

Purpose: EARS Inc. is a faith based not-for-profit organization established in 1998. As an organization, it has consistently maintained a goal to provide both short-term and long-term projects in low and middle income countries. One specific project undertaken by EARS Inc involved developing a hearing health program in the Dominican Republic. Methods: This article is a review of the challenges and successes encountered on the road to establishing improved access and affordability of hearing aid technology for the hearing impaired in Domincan Republic. Results: Despite the challenges, after 12 years of local programming, the hearing health services in the Dominican Republic were successfully implemented. The development of these services included the simultaneous development of a training program, earmould laboratory, hearing aid repair services as well as calibration services and sales of batteries and accessories. Conclusions: As demonstrated in this review, it is possible to develop sustainable and comprehensive diagnostic and rehabilitation hearing services in a developing country. It is clear that training, equipping and empowering local staffs are instrumental to the success of the program.

• Implications for Rehabilitation

• A good hearing aid fitting is more than supplying technology. Patient education and the clinician fitting the hearing aid are important.

• Access to follow-up services including battery supplies, hearing aid adjustments and hearing aid repairs is essential for a hearing aid fitting program in low and middle income countries to be sustainable.

• Check the WHO guidelines for hearing aid provision in developing countries when planning a program.

• When working in a country, co-ordinate with local professionals involved in hearing health where available.

     

“The complaining women”: health professionals’ perceptions on patients with fibromyalgia in Spain

Purpose: The aim of this study is twofold: (1) to explore health service providers’ perceptions regarding fibromyalgia patients in Spain and (2) to analyze possible consequences of these perceptions in terms of how health service providers construct the disease and treat their patients.

Design: Qualitative study.

Subjects/Patients: Twelve health service providers (eight men, four women) involved in the care of fibromyalgia patients. Providers were from different disciplines and included general practitioners, rheumatologists, occupational doctors, psychologists, psychiatrists, physiotherapists and behavioral specialists from Spain.

Method: We performed individual semistructured interviews, which were recorded and transcribed to conduct a qualitative content analysis supported by Atlas.ti-7.

Results: We identified three categories from the interviews: (1) the fibromyalgia patient prototype: the complaining woman, (2) fibromyalgia is considered a women’s health issue, but male patients are a privileged minority, and (3) health professionals’ attitudes toward fibromyalgia patients: are they really suffering or pretending?

Conclusion: The uncertainty surrounding fibromyalgia together with the fact that those affected are primarily women, seem to influence professional practice in terms of lack of recognition of Fibromyalgia as a severe disease. Increased training of all health professionals is essential to improving the support and attention given to patients suffering from fibromyalgia.

• Implications for rehabilitation

• Fibromyalgia

• ??In order to improve fibromyalgia patients´ attention, health providers should learn how to assist patients without prejudices.

• ??Training programs for health providers should include sensitization about the severity of fibromyalgia.

• ??Health providers should be aware of the existence of stereotypes about women suffering from fibromyalgia.

• ??Fibromyalgia protocols should give skills to health providers to avoid offering a gender-biased attention to patients.