Background
Emphasis on parental engagement strategies within occupational therapy and physiotherapy early intervention (EI) programmes for infants at high risk of cerebral palsy (CP) has increased. ...This reflects consensus that increasing parent participation enhances treatment efficacy, potentially improving infant and parent outcomes. However, evaluation of parental engagement in EI is complex. Despite the growing application of parental engagement strategies, aligned with family‐centred care practice, theoretical evaluation is currently lacking within the literature. This realist synthesis aimed to identify component theories underlying EI strategies to support parental engagement and to use empirical findings to evaluate how these work in practice.
Methods
Realist synthesis: Databases Medline, Embase, Amed, CINAHL and PsychInfo were searched (from February 1985 ‐ February 2020); further articles were sourced from reference lists. A data extraction form was used, and a Critical Appraisal Skills Programme tool was used to assess study rigour.
Results
Twenty‐six articles were included. Quality of relationships, parent education and intervention co‐design were the key themes related to parental engagement strategies. Findings indicate that constructive parent reasoning mechanisms of trust, belief, sense of control, perceived feasibility of home programme delivery and ultimately motivation are linked to the underlying intervention resources afforded by specific strategies (e.g., coaching pedagogy). These responses are precursors to engagement outcomes that include increased parental self‐efficacy and adherence. Importantly, parental self‐efficacy can initiate a process of change leading to improved parental confidence and anxiety.
Conclusions
Sensitively designed programme strategies, centred on relational quality between parent, infant and therapist, are fundamental for effective parent connection, involvement and investment within EI for infants with CP.
There is a lack of functional performance measures for children and young people with haemophilia (CYPwH) with associated control data from typically developing boys (TDB). The literature advocates ...development of a core set of outcome measures for different chronic conditions. As medical treatment improves, CYPwH are experiencing better outcomes; therefore, more challenging measures are required to monitor physical performance. Such testing is not performed routinely, due to practical and safety concerns.
Evaluate the feasibility, safety and acceptability of select outcome measures as part of a study protocol testing CYPwH; including myometry, 10 metre incremental shuttle walk test (10-m ISWT), iSTEP (an incremental step test, with data from TDB), and 1 week of accelerometry-wear at home.
Sixty-six boys aged 6-15 years with mild, moderate or severe haemophilia A or B (including inhibitors) attending routine clinics at Great Ormond Street Hospital were approached to participate. Descriptive statistics and content analysis were used to assess outcomes of feasibility, safety and acceptability, which included recruitment/retention rates, protocol completion within routine appointment timeframes, performance testing without serious adverse events/reactions (SAE/SARs), and acceptability to CYPwH of high-level performance measures.
Outcomes were met: 43 boys completed testing at clinic review (Jan-Nov 2018) within a 10-month timeframe, retention was 95% at completion of protocol and no SAE/SARs were reported throughout testing.
Feasibility, safety and acceptability of the study protocol have been established in this population. Both high-level performance tests, iSTEP and 10-m ISWT, were an acceptable addition to boys' routine clinic appointments and could be safe, acceptable choices of outcome measure as part of a core set of tests for CYPwH. Further investigation of the psychometric properties for the iSTEP is now justified, in order for it to be used as a standardised, validated, reliable outcome measure in clinical or research settings.
Retrospectively registered on September 3, 2019, on ClinicalTrials.gov (ID: NCT04076306 ).
Parent and therapist engagement and partnership are critical in early intervention physiotherapy and occupational therapy for infants with cerebral palsy to improve outcomes. The main aim of this ...study was to understand how parents perceive their engagement experience in early intervention over time.PURPOSEParent and therapist engagement and partnership are critical in early intervention physiotherapy and occupational therapy for infants with cerebral palsy to improve outcomes. The main aim of this study was to understand how parents perceive their engagement experience in early intervention over time.Grounded theory methodology was used. Twenty parents of diverse backgrounds participated in 22 interviews (including some repeated longitudinally) to reflect on their engagement experience within the context of early intervention community services provided in the UK NHS.METHODSGrounded theory methodology was used. Twenty parents of diverse backgrounds participated in 22 interviews (including some repeated longitudinally) to reflect on their engagement experience within the context of early intervention community services provided in the UK NHS.The findings highlight how parents' perspectives of their engagement in EI change according to critical circumstances, including their preceding neonatal trauma, the at-risk CP label, firmer diagnosis of CP and their child's response to intervention. We theorise that this disrupted transition experience to parenthood becomes part of parental framing (or sense-making) of their engagement in EI. Overlapping frames of uncertainty, pursuit and transformation capture and explain nuances in parents' engagement patterns within EI over time.RESULTSThe findings highlight how parents' perspectives of their engagement in EI change according to critical circumstances, including their preceding neonatal trauma, the at-risk CP label, firmer diagnosis of CP and their child's response to intervention. We theorise that this disrupted transition experience to parenthood becomes part of parental framing (or sense-making) of their engagement in EI. Overlapping frames of uncertainty, pursuit and transformation capture and explain nuances in parents' engagement patterns within EI over time.This theorising has implications for early intervention therapists in how they engage in the lives of families and partner with parents to support healthier parental transition, wellbeing and subsequent improved infant outcomes.CONCLUSIONThis theorising has implications for early intervention therapists in how they engage in the lives of families and partner with parents to support healthier parental transition, wellbeing and subsequent improved infant outcomes.
Empowering parents to deliver evidenced-based interventions improves outcomes for children with or infants at risk of cerebral palsy (CP), by integrating repetition and contextual learning into daily ...routines. We aimed to identify the barriers and facilitators to parent-delivered interventions and suggest practice improvements guided by behaviour change models.
Eight electronic databases were searched to identify studies presenting parent and therapist perspectives on parent-delivered interventions in CP. Included studies were critically appraised using validated checklists. Barriers and facilitators to parent-delivered interventions were identified and categorised into subcomponents of The Capability Opportunity and Motivation Model of Behaviour (COM-B), the Theoretical Domains Framework (TDF) and the Behaviour Change Wheel to formulate appropriate practice recommendations.
Thirty-four studies were identified which mainly used qualitative or randomised control trial designs. Barriers to parent-delivery included insufficient parental knowledge, lack of confidence and time. Facilitators included staff continuity, empowering parents, efficient resource utilisation and flexible delivery. Practice recommendations emphasise realistic goal setting, tailored parental education and enhancing the coaching skills of therapists.
Fostering parent-delivered interventions requires addressing knowledge gaps, skill and capacity of parents and therapists. Therapists forming strong alliances with parents and setting collaborative realistic goals are key to successful parent-delivered interventions.
BackgroundEarly intervention occupational and physiotherapy aims to capitalise upon innate infant neuroplasticity to ameliorate the functional impact of early brain lesions causing cerebral palsy. ...Contemporary early intervention has encouraged increased parental engagement. However, parents’ perspectives on their engagement in early intervention are lacking. The‘Optimise EI Study’ research project explores parental perspectives of engagement and aims to inform early intervention approaches. One category of data will be presented relating to parental perceptions of the neuroplasticity discourse and its impact on their engagement and self-concept.MethodsQualitative grounded theory methodology informs the data collection and analysis. Twenty parents participated in 28 in-depth interviews, lasting 1-3 hours.ResultsParents transition from framing their engagement through uncertainty into a more focused ‘pursuit’ frame following the shock of an early predictive diagnosis of cerebral palsy. At this time, parents invest themselves intensively in early intervention while feeling a sense of accountability pressure. In particular, parental interaction with the neuroplasticity evidence discourse becomes formative in their transition and engagement. Neuroplasticity provides significant hope and motivation for parents, which drives an intensive pursuit to improve their child’s outcomes through their engagement in EI. However, parents also expressed feeling pressure, ‘like a sand timer, you feel time is running out’. This phenomenon creates tension for parents where their intensive engagement in ‘doing’ more early intervention physical therapy can begin to influence their well-being and shapes their parental identity development.ConclusionThe tension parents experience between hope in early intervention neuroplasticity evidence discourse against the sense of time pressure and intensive investment of themselves in ‘doing’, can negatively influence their parental identity development and well-being. Greater professional awareness of this phenomenon is required to offer holistic support to parents while avoiding additional pressure and stress
BackgroundThe adoption of video calls during the pandemic is seen as an innovation opportunity in early intervention occupational and physiotherapy delivery for infants with cerebral palsy. The aim ...of this work is to explore parent and therapist perspectives of communication and learning in early intervention via video calls, and co-produce knowledge for guidance of telehealth service delivery.MethodsData were taken from the larger ‘Optimise EI’ study. Data collection commenced prior to the pandemic. The flexibility of grounded theory methods enabled the exploration of parent and therapist engagement via video calls as it occurred naturalistically. Data are drawn from interviews (n=30) and focus groups (n=2) involving 14 parents and 15 therapists, and including two video cases, where multimodal interaction analysis was also undertaken.ResultsParents reported increased engagement challenges relating to communication and learning due to interaction complexities via video calls. Video calls removed certain communication modes meaning that other modes were amplified to compensate. For example, parents were required to perform supplementary commentary while enacting therapeutic play with their child for the observing therapist. Visual information on video calls is critical for effective communication and learning because accurate interpretation is needed to undertake embodied actions. The simultaneous responsibility on parents to direct the camera while conducting the therapeutic activities created a particular challenge for visual interpretation. Camera positioning required constant parent awareness and decision making to accommodate the therapist’s visual perspective to ensure ongoing shared understanding of events.Traditional therapist-parent roles were disrupted by video calls. Positively, parents were more actively involved. Yet, parents reflected that the higher logistical requirements, in enhanced performative roles as ‘Actor-Directors’, detracted from their learning.ConclusionThis research outlines the challenges that parents and therapists face to collaborative learning via video calls, which needs further consideration to optimise the potential of this format.
BackgroundThere is increasing recognition of the potential use of digital health technology to support delivery and effectiveness of care within the NHS. Use of gaming technology in rehabilitation is ...gaining popularity across the world. In collaboration with University College London Partners (UCLP), the physiotherapy department procured two ‘MIRA Rehab’ units (video exercise gaming technology) to improve children and young people (CYP) engagement, activity and participation.AimTo demonstrate the facilitators and barriers to adoption of MIRA across the physiotherapy department.MethodsThe process of adoption of MIRA involved: awareness raising, group and individual teaching sessions, problem solving with the company representative, working with different stakeholders within and outside the Trust such as Information Communication Technologies (ICT), Information Governance (IG), the company representatives and UCLP. Further feedback on usability of MIRA was gathered from the Young People Forum, parents, CYP, staff, and physiotherapists from other organisations.ResultsThe facilitators for adoption of MIRA were: positive feedback from YPF, parent and CYP following short-term use of MIRA; involvement across the multidisciplinary team; close collaboration for skill transfer from the company representative and ongoing problem solving; dedicated staff time to promote adoption, integration and implementation in collaboration with UCLP and the Trust’s ICT. The barriers were: systemic issues in integrating an external technology within the Trust’s ICT/IG framework; technical issues with the MIRA product; environmental issues such as accessibility and space; staff attitude, time constraints and the type of clinical caseload.ConclusionIntroducing technology into a real-world setting is a challenge. It requires collaborative working with internal and external stakeholders within the existing infrastructure. Further consideration is required as to whether video exercise gaming technology addresses a real clinical need in an acute clinical setting.
BackgroundSelective dorsal rhizotomy (SDR) is an irreversible neurosurgical procedure used to reduce spasticity with the aim of improving sensorimotor function for children with cerebral palsy (CP). ...Despite the growth in quantitative outcome data to evaluate SDR and develop eligibility criteria, little research has explored the complexity of parental decision-making experiences that surround the surgery and required rehabilitation.AimsTo understand families’ experiences, expectations and what influences decision-making around the SDR operation and post-operative physiotherapy rehabilitation requirements.MethodQualitative methods using in-depth, semi-structured interviews were used. Eighteen parents (11 mothers and 7 fathers) whose child had SDR and completed two-year post-operative rehabilitation participated. Interviews focused on pre-conceived expectations around SDR outcomes, decision making, the procedure and rehabilitation process. Interviews lasted between 1–2 hours. Data were analysed using thematic analysis.ResultsThe burden of responsibility lies heavily with parents when making decisions around the SDR process. The decision-making focuses around having to balance the facts with their own emotions, which is influenced by their aspirations for their child and ‘wanting no regrets’. Parents identified specific gaps that would have aided their decision-making, including: lack of balanced information in a timely and accessible manor to make a fully informed choice; limited support from local teams; lack of psychological support in managing hopes and expectations; and level of preparedness in dealing with pre and post-operative eventualities. On reflection, parents felt the need to recalibrate the reality versus the media ‘miracle cure’ portrayal of the intervention.ConclusionAlthough all parents reported they had no regrets on their decision for their child having SDR, many felt a mismatch between their expectations and the outcomes of the surgery. Further work needs to be done to support parents and professionals making decisions on behalf of the child by providing well-balanced accessible information.
BackgroundUnder representation of fathers in child health research is a well-established issue. This limits our understanding of fathers’ unique perspectives of roles they perform within the family ...relating to their child’s development. As a group of clinical academic nurses and allied health professionals within ORCHID (Centre for Outcomes and Experience Research in Children’s Health, Illness and Disability), we identified this challenge in our research. Therefore, we present co-designed recommendations for involving fathers in child health research, using our experience and collaboratively generated solutions.MethodAn online participatory workshop involving six active researchers was undertaken to produce collaborative solutions to prioritised problems.ResultsThree problems were prioritised for solution-focused idea generation:Fathers feel less knowledgeable and confident about their child’s health status, so they perceive their involvement is less valuable relative to their partners’Traditional paternal roles, including fathers’ working arrangements, affect their availability for involvementFathers feel less comfortable discussing emotive topics surrounding their child’s healthMultiple solutions were generatedThose with highest consensus focused on:Framing research information to be inclusive of fathersUsing advertising and recruitment strategies that specifically target fathersCo-production of research with fathers; cost in time and training for fathers with lived experience to support recruitment and data collectionCreating a campaign to champion fathers’ involvement in researchFlexible recruitment and data collection methods that meet fathers’ preferences and needs, using public and patient involvement adviceEnsuring alternative data collection options are offered, which account for the challenge some fathers may have in discussing emotive topics e.g.,writing responses, use of asynchronous anonymised messaging boards, focus groups or 1-1 interviews and using preferred locationsConclusionThis rapid co-design project has drawn upon clinical academics’ experience to generate recommendations for researchers seeking to involve fathers. This will enable a more inclusive approach for this group.
To explore experiences, expectations, and involvement of children and young people (CYP) in decision-making for selective dorsal rhizotomy (SDR) surgery, post-operative physiotherapy treatment and ...outcomes.AIMSTo explore experiences, expectations, and involvement of children and young people (CYP) in decision-making for selective dorsal rhizotomy (SDR) surgery, post-operative physiotherapy treatment and outcomes.A qualitative study design using one to one interviews. Five CYP (2 girls and 3 boys) participated, and interviews lasted between 45 min and 2 h. Data were analyzed using thematic analysis.METHODSA qualitative study design using one to one interviews. Five CYP (2 girls and 3 boys) participated, and interviews lasted between 45 min and 2 h. Data were analyzed using thematic analysis.Children and young people are reliant on their parents to make decisions and inform them of the SDR process. Experiences of living with cerebral palsy and its management are centered on their routine social, psychological, and physiological challenges. Individual characteristics and attributes of CYP have an impact on how they cope with the rehabilitation burden and adjust to their changing levels of function and participation.RESULTSChildren and young people are reliant on their parents to make decisions and inform them of the SDR process. Experiences of living with cerebral palsy and its management are centered on their routine social, psychological, and physiological challenges. Individual characteristics and attributes of CYP have an impact on how they cope with the rehabilitation burden and adjust to their changing levels of function and participation.Although CYP reported that SDR offers them a greater 'freedom to choose' in how they participate in daily life, further consideration is required to meet their psychosocial needs, particularly in preparing for SDR and adjusting afterwards.CONCLUSIONSAlthough CYP reported that SDR offers them a greater 'freedom to choose' in how they participate in daily life, further consideration is required to meet their psychosocial needs, particularly in preparing for SDR and adjusting afterwards.
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