Parenting with a physical disability: A scoping review of assessment methods.

INTRODUCTION: Daily childcare can be challenging for parents with a physical disability who have young children. Occupational therapists are valuable facilitators to family participation. However, occupational therapists have reported significant gaps in knowledge when documenting the parenting role of parents with a physical disability in occupational therapy practice. This study explored and described the parenting assessment methods used with parents with a physical disability in the scientific literature. METHODS: A scoping review was conducted, and search results were reviewed by two separate reviewers. The search strategy was applied to five databases (Embase, CINAHL, MEDLINE, HaPI, PsycInfo). Numerical and thematic analyses were conducted. RESULTS: Four thousand one hundred fifty articles were screened, and 73 relevant scientific articles were included. Seventy-six assessment methods were identified, including 20 assessment instruments with few reported population-specific psychometric studies. Most assessments were conducted via interviews (n = 45), followed by questionnaires (n = 27), and only six were performance based. Parenting practices and experience were the two dimensions most assessed, with little attention given to parenting responsibility. Mothers with multiple sclerosis, spinal cord injury, rheumatoid arthritis, and cerebral palsy were the most assessed. CONCLUSION: Further research is needed to develop specific, multidimensional, and validated parenting assessments for all parents with a physical disability, including performance-based assessments. Formal assessments should be conducted by professionals, including occupational therapists, who have the necessary training.

Powerful or Powerless? Children's, Parents', and Occupational Therapists' Perceptions of Powered Mobility.

Aim: In Québec, Canada, the prevalence of children using powered mobility (PM) is not reflective of evidence supporting its use and for achieving developmental milestones. The aim of this study was to explore the perceptions of four key stakeholder groups in a metropolitan area regarding daily use, barriers, facilitators, and clinical practice associated with use of PM. Methods: Using convenience sampling, semi-structured qualitative interviews were conducted with children (n = 6), parents (n = 2), rehabilitation center occupational therapists (OTs; n = 4), and special needs school-based OTs (n = 6). Drawings were used as a supplemental data collection strategy with children. Interviews were audio recorded and transcribed verbatim to conduct thematic analysis. Results: Three overarching themes were identified: (1) "A sense of liberty, except…", highlighting environmental obstacles reducing social participation; (2) "A necessity, for better or for worse," covering benefits and drawbacks of PM; and (3) "First choice versus last resort," raising clinical differences related to provision, assessment, and training. Conclusions: Stakeholders' perceptions illustrated benefits of PM, yet use is contingent on the physical, institutional, and societal environments, leading stakeholders to feel both powerful and powerless as users, parents, or clinicians.

Babycare Assistance Needs of Parents With Physical Disabilities: An Observational Study.

The assistance needs of parents with physical disabilities have been widely underexamined. This qualitative observational study described the assistance needs of parents with physical disabilities during the performance of in-home babycare activities. Thirty-one parents were assessed by trained occupational therapists using the Activities of Daily Living (ADL) Profile adapted for use with parents, an ecological performance-based assessment that considers executive functioning. Descriptive statistics of participants' demographics and parents' independence scores in babycare activities were calculated, and a qualitative content analysis of parents' assistance needs was performed using video recordings. At least one-fourth of parents experienced difficulties in all babycare activities, either affecting activity performance or requiring verbal or physical assistance. Assistance needs were also observed in all activity-related operations of the ADL Profile. It is necessary to develop specialized clinical services to address assistance needs and promote safe and easy parenting in parents with physical disabilities.

Exploration of pediatric manual wheelchair confidence among children, parents, and occupational therapists: a qualitative study.

PURPOSE: Manual wheelchair (MWC) confidence is a predictor of adult life-space mobility and social participation. To date, scientific literature specific to pediatric MWC confidence is scarce which prevents in-depth understanding. The objective of this study was to explore the perceptions of pediatric MWC users (PMWU), parents, and occupational therapists regarding pediatric MWC confidence. METHODS: Five focus groups were conducted with PMWUs (n = 12) and occupational therapists (n = 9), and semi-structured interviews were conducted with parents of PMWUs (n = 2). Inductive thematic analysis was performed following verbatim transcription of audio recorded material. RESULTS: Three overarching themes were identified across PMWUs, parents, and occupational therapists: (1) "MWC confidence is not a clinical priority" depicted the construct's varying level of clinical priority and perceived abstractness; (2) "MWC confidence is both a child and parent consideration" revealed nuances between the PMWU's MWC confidence and the parents' perception of the PMWU's MWC confidence; and (3) "Opportunities to develop MWC confidence are context-specific" contrasted afforded and unafforded opportunities to experience independent MWC mobility. CONCLUSIONS: Pediatric MWC confidence is an important aspect of wheelchair use that is shaped by a multitude of factors in PMWU's lives. This new area of pediatric study provides support for the need to measure this important construct.IMPLICATIONS FOR REHABILITATIONThis study is the first to explore children's, parents', and occupational therapists' perceptions of pediatric MWC confidence.Pediatric MWC confidence impacts MWC use in a multifaceted fashion.Future studies should consider the development and validation of a self-report measure to assess pediatric MWC confidence.

Managing challenging behaviours in adults with traumatic brain injury: A scoping review of technology-based interventions.

Challenging behaviours are one of the most serious sequelae after a traumatic brain injury (TBI). These chronic behaviours must be managed to reduce the associated burden for caregivers, and people with TBI. Though technology-based interventions have shown potential for managing challenging behaviours, no review has synthesised evidence of technology aided behaviour management in the TBI population. The objective of this scoping review was to explore what technology-based interventions are being used to manage challenging behaviours in people with TBI. Two independent reviewers analysed 3505 studies conducted between 2000 and 2023. Studies were selected from five databases using search strategies developed in collaboration with a university librarian. Sixteen studies were selected. Most studies used biofeedback and mobile applications, primarily targeting emotional dysregulation. These technologies were tested in a variety of settings. Two interventions involved both people with TBI and their family caregivers. This review found that technology-based interventions have the potential to support behavioural management, though research and technology development is at an early stage. Future research is needed to further develop technology-based interventions that target diverse challenging behaviours, and to document their effectiveness and acceptability for use by people with TBI and their families.

"What Services?": Stakeholders' Perceived Unmet Support Needs for Parents With Neurological Disorders.

Background. Knowledge about the needs of parents with neurological disorders who take care of young children is limited. Purpose. The overall aim of this qualitative study was to explore the perceived unmet parent needs, current supports, and potential solutions to optimize supports of parents with neurological disorders in early childhood in a Canadian setting. Method. Focus groups and individual interviews with parents (n = 8), spouses (n = 5), rehabilitation clinicians (n = 8), community partners (n = 7), and researchers (n = 7) were conducted with a total of 35 participants recruited using convenience sampling. Inductive iterative thematic analysis was performed. Findings. The participants identified the need for society to officially recognize parenting with disabilities, adjust public policies, increase the scope of public programs, consider child development and family well-being, and have barrier-free communities. Conclusion. Providing customized solutions that will adequately fill perceived service gaps is of utmost importance to address these families' needs.

Parenting with a physical disability and cognitive impairments: a scoping review of the needs expressed by parents.

PURPOSE: Parents, whose daily activities are limited by a disability, account for 6.2% of the American population with minor children. Considering the prevailing knowledge gaps concerning parents with a physical disability and cognitive impairments, there is an urgency to instigate an investigation of their unmet needs. In this study, we will examine the scope of literature relating to the specific needs of parents with a physical disability and cognitive impairments in early child rearing occupations. METHODS: A scoping review of peer-reviewed literature was conducted by two independent raters in four databases (CINAHL, EMBASE, Medline, PsycINFO). Data were extracted and analyzed numerically and thematically using the International Classification of Functioning, Disability and Health (ICF). RESULTS: Twenty-nine studies were included for review representing the needs of 113 parents. Emerging needs related to 15 ICF categories and three corresponding themes: parents' (1) needs when engaging with their young children, (2) personal needs in and outside the home, and (3) needs navigating the health system. CONCLUSIONS: The unmet needs of parents with a physical disability and cognitive impairments legitimize the development of clinical services for this population. Future research should focus on developing assessments and interventions specific to parental needs in child rearing occupations.IMPLICATIONS FOR REHABILITATIONAdults with a physical disability and cognitive impairments who parent young children have unmet needs with regards to engaging in child rearing, meeting their personal needs, and navigating the health system.Studies reporting on the impact of impairments on parenting mostly focus on elucidating physical impairments and less so cognitive impairments.Developing a more comprehensive understanding of parental needs will inform further development of targeted assessments and interventions for parents with a physical disability and cognitive impairments.

Implementation of a sexuality interview guide in stroke rehabilitation: a feasibility study.

BACKGROUND: Although people who sustain a stroke can experience sexual difficulties, few address them during rehabilitation. OBJECTIVES: Explore the feasibility of implementing a Sexuality Interview Guide (SIG) in stroke rehabilitation and describe the factors perceived as influencing its implementation. MATERIALS AND METHODS: Using a mixed research design, the SIG was implemented for four months in a rehabilitation hospital. The frequency with which clinicians addressed sexuality and their level of comfort pre-post implementation was measured. Perceived factors influencing implementation were determined through individual interviews and focus groups with five stroke clients, 15 clinicians and a coordinator. A paired-specimen Wilcoxon test was used to explore differences in pre- post-level of comfort. Qualitative data was analyzed by two independent evaluators using thematic analysis. RESULTS: The SIG was used 28 times and clinicians' level of comfort in addressing sexuality improved significantly (p = 0.001). The factors perceived as influencing implementation were: the acceptability of the SIG, the individual characteristics, the context of the rehabilitation hospital and the implementation process. CONCLUSION: This study showed that the SIG can be used in stroke rehabilitation and that, with sufficient financial and human resources, and training for clinicians, it would be feasible to implement it in usual care.Implications for rehabilitationThe Sexuality Interview Guide (SIG) can be used in stroke rehabilitation and helps clinicians to target stroke clients who want to include sexuality in their rehabilitation.The best time to approach sexuality using the SIG, according to all participants, was in outpatient rehabilitation.For inpatient clients, it was more appropriate to use the SIG as they approach a weekend home trial or rehabilitation discharge.Training for clinicians working in post-stroke sexual rehabilitation, administrative policies and procedures and access to a sexual health specialist for consultation or referral purpose, would be important facilitators in integrating sexuality into clinical practices.

The potential impact of intelligent power wheelchair use on social participation: perspectives of users, caregivers and clinicians.

PURPOSE: To explore power wheelchair users', caregivers' and clinicians' perspectives regarding the potential impact of intelligent power wheelchair use on social participation. METHODS: Semi-structured interviews were conducted with power wheelchair users (n = 12), caregivers (n = 4) and clinicians (n = 12). An illustrative video was used to facilitate discussion. The transcribed interviews were analyzed using thematic analysis. RESULTS: Three main themes were identified based on the experiences of the power wheelchair users, caregivers and clinicians: (1) increased social participation opportunities, (2) changing how social participation is experienced and (3) decreased risk of accidents during social participation. CONCLUSION: Findings from this study suggest that an intelligent power wheelchair would enhance social participation in a variety of important ways, thereby providing support for continued design and development of this assistive technology. IMPLICATIONS FOR REHABILITATION: An intelligent power wheelchair has the potential to: Increase social participation opportunities by overcoming challenges associated with navigating through crowds and small spaces. Change how social participation is experienced through "normalizing" social interactions and decreasing the effort required to drive a power wheelchair. Decrease the risk of accidents during social participation by reducing the need for dangerous compensatory strategies and minimizing the impact of the physical environment.

Exploring powered wheelchair users and their caregivers' perspectives on potential intelligent power wheelchair use: a qualitative study.

Power wheelchairs (PWCs) can have a positive impact on user well-being, self-esteem, pain, activity and participation. Newly developed intelligent power wheelchairs (IPWs), allowing autonomous or collaboratively-controlled navigation, could enhance mobility of individuals not able to use, or having difficulty using, standard PWCs. The objective of this study was to explore the perspectives of PWC users (PWUs) and their caregivers regarding if and how IPWs could impact on current challenges faced by PWUs, as well as inform current development of IPWs. A qualitative exploratory study using individual interviews was conducted with PWUs (n = 12) and caregivers (n = 4). A semi-structured interview guide and video were used to facilitate informed discussion regarding IPWs. Thematic analysis revealed three main themes: (1) "challenging situations that may be overcome by an IPW" described how the IPW features of obstacle avoidance, path following, and target following could alleviate PWUs' identified mobility difficulties; (2) "cautious optimism concerning IPW use revealed participants" addresses concerns regarding using an IPW as well as technological suggestions; (3) "defining the potential IPW user" revealed characteristics of PWUs that would benefit from IPW use. Findings indicate how IPW use may help overcome PWC difficulties and confirm the importance of user input in the ongoing development of IPWs.