Coello-Villalón María, Díaz-López Cristina I, López-Muñoz Purificación, Romay-Barrero Helena, Pacheco-da-Costa Soraya, Plasencia-Robledo María, Longo Egmar, Palomo-Carrión Rocío
Department of Nursing, Physiotherapy and Occupational Therapy, Faculty of Physiotherapy and Nursing, Universidad de Castilla-La Mancha, Toledo, Spain.
Research Group of Pediatric and Neurologic Physiotherapy, IMPROVELAB, Toledo, Spain.
Health Expect. 2025 Jun;28(3):e70278. doi: 10.1111/hex.70278.
Spinal muscular atrophy type 1 (SMA1) is a neuromuscular disorder that severely limits movement and autonomy in young children. Early powered mobility has proved to be a valuable intervention to promote participation, social engagement and emotional well-being. To understand the potential impact of powered mobility, it is critical to explore children and families' experiences with participatory methodologies, such as the photovoice method.
To explore families' perceptions of powered mobility for participation in children with SMA Type 1, with a focus on emotional well-being, social engagement and accessibility.
A qualitative descriptive study using the photovoice methodology was implemented, in which families documented their perceptions and experiences through photographs and reflective narratives over a period of 4 weeks. Children were encouraged to use a power mobility device in different activities in natural environments, after a training intervention of 12 weeks with power mobility. Families were asked to capture their experiences through photos and participate in different interviews to report their perceptions. Data was collected through photos documentation and during interviews.
This study was conducted in natural environments, home and community, in Spain. The participants were six children with SMA1 (aged 13-28 months) and their families.
Three major themes emerged: (1) Emotional and Social Engagement: Families reported that powered mobility enhanced children's confidence, emotional expression and ability to interact with family members and peers. (2) Barriers to Accessibility: Families encountered challenges such as limited home space, restricted public accessibility and the need for individualised adaptations. (3) Collaboration as a Key Factor: Parents emphasised the importance of collaboration with professionals in facilitating meaningful use of powered mobility.
The findings align with previous research demonstrating the benefits of powered mobility in promoting independence, social interaction and participation. However, this study also highlights persistent environmental barriers that continue to limit full social inclusion. Addressing these challenges is crucial to maximising mobility-related gains.
This study highlights the importance of addressing accessibility barriers and promoting interdisciplinary collaboration to maximise the benefits of powered mobility for children with SMA1. Incorporating participatory methodologies such as photovoice provides a powerful means for families to voice their experiences and advocate for inclusive mobility solutions.
Families were actively involved in multiple stages of the study, including its design, data collection and interpretation and dissemination of the results. Using the photovoice method, parents documented their children's experiences with powered mobility through photographs and comments, highlighting both benefits and challenges. Their input was crucial in identifying real-life barriers and needs, ensuring that the study reflected the authentic experiences of families navigating powered mobility. Additionally, they provided valuable insights during interviews, contributing to a deeper understanding of the emotional, social and practical impacts of the intervention. Their perspectives helped to shape the analysis and reinforce the importance of personalised mobility solutions.
1型脊髓性肌萎缩症（SMA1）是一种神经肌肉疾病，严重限制幼儿的运动能力和自主性。早期动力移动已被证明是促进参与、社会融入和情感幸福的一项有价值的干预措施。为了解动力移动的潜在影响，探索儿童及其家庭使用参与式方法（如摄影声音法）的经历至关重要。
探讨家庭对1型SMA患儿使用动力移动以促进参与的看法，重点关注情感幸福、社会融入和可达性。
采用摄影声音法进行了一项定性描述性研究，在此研究中，家庭在4周的时间内通过照片和反思性叙述记录他们的看法和经历。在经过12周的动力移动训练干预后，鼓励儿童在自然环境中的不同活动中使用动力移动设备。要求家庭通过照片捕捉他们的经历，并参与不同的访谈以报告他们的看法。通过照片记录和访谈收集数据。
本研究在西班牙的自然环境、家庭和社区中进行。参与者为6名患有SMA1的儿童（年龄在13 - 28个月之间）及其家庭。
出现了三个主要主题：（1）情感与社会融入：家庭报告称动力移动增强了儿童的自信心、情感表达以及与家庭成员和同龄人互动的能力。（2）可达性障碍：家庭遇到了诸如家庭空间有限、公共可达性受限以及需要个性化适配等挑战。（3）合作是关键因素：家长强调与专业人员合作对于促进动力移动的有意义使用的重要性。
研究结果与先前的研究一致，表明动力移动在促进独立性、社会互动和参与方面具有益处。然而，本研究也凸显了持续存在的环境障碍，这些障碍继续限制着全面的社会包容。应对这些挑战对于最大化与移动相关的收益至关重要。
本研究强调了解决可达性障碍和促进跨学科合作对于最大化动力移动对SMA1患儿益处的重要性。纳入摄影声音法等参与式方法为家庭提供了一个有力途径，使其能够表达自身经历并倡导包容性移动解决方案。
家庭积极参与了研究的多个阶段，包括研究设计、数据收集、结果解读与传播。通过摄影声音法，家长通过照片和评论记录了孩子使用动力移动的经历，突出了益处和挑战。他们的投入对于识别现实生活中的障碍和需求至关重要，确保研究反映了家庭在使用动力移动过程中的真实经历。此外，他们在访谈中提供了宝贵的见解，有助于更深入地理解干预措施在情感上、社会上和实际方面的影响。他们的观点有助于形成分析结果，并强化了个性化移动解决方案的重要性。
