Aging With Cerebral Palsy: A Photovoice Study Into Citizenship

Abstract

Background: Adults with cerebral palsy (CP) may experience an increasing impact of their disability on daily life and this may interfere with their citizenship. Citizenship is a layered construct. Next to formal and theoretical significations, and civil rights acts such as the UN Convention on the Rights for Persons with Disabilities (CRPD), the meaning of citizenship is formed by the person themselves. The present study aimed to gain insight into what citizenship means for adults with CP 40 years or older and what is needed to support and pursue their citizenship to improve person-centered rehabilitation which can facilitate this process.Methods: Adults with CP (>40 years) without intellectual disability were recruited from medical records of a large rehabilitation center to participate in a qualitative study using the photovoice method. Participants were asked to take photos of objects or life situations that constituted citizenship for them; these photos were then the prompts for the semi-structured interviews that were held face-to-face at their homes. Background and clinical characteristics were gathered using a short face-to-face questionnaire. Data were analyzed through inductive thematic analysis.Results: Nineteen adults participated [mean age (SD) 57.8 (9.4) years (range 44–79), six men]. From the analysis four themes emerged: (a) Meanings of citizenship; (b) Citizenship: Facilitator and barriers; (c) Paradoxes of support and participation; and (d) Future. Furthermore, next to the ability to participate in society without restrictions, sense of belonging was reported to be an important aspect of “meanings of citizenship.” The physiotherapist was perceived as an important health professional to maintain physical activity and deal with the impact of aging with CP on daily activities. Complex healthcare and support services regulations and aging affected citizenship negatively.Conclusion: Middle-aged and older adults with CP view citizenship as the ability to participate and belong in society. To optimize their citizenship the challenges and individual needs must be seen and supported by person-centered rehabilitation and support services. Simplification of complex healthcare and services regulations can further improve citizenship.

Exploring the Use of Photovoice in Understanding the Lived Experience of Neurological Conditions: A Scoping Review and Reflexive Thematic Analysis

“…This included issues faced, such as insufficiencies in healthcare and access to rehabilitation services, indicating a view that people with neurological conditions may be treated differently. In a number of papers, the complicated health system left people living with a neurological condition confused as to why care stopped suddenly and no more services were available (Gunton et al, 2021; LaDonna et al, 2015; Maratos et al, 2016; Roger et al, 2018; Tornbom et al, 2019; van Heijningen et al, 2021). Tornbom et al (2019) also found that many years after a stroke, participants still experienced improvements through persistent rehabilitation, and wished for more interactive rehabilitation training, including collaborative forms of rehabilitation being suggested in the long-term phase of stroke.…”

“…Obstacles and obstructions that posed threats to physical safety (e.g., narrow aisles, sidewalks in poor condition, lack of outdoor lighting, or lack of accessible entrances) also presented c hallenges . Without change around these issues, people living with neurological conditions could be hindered from living successfully due to the negative impact on their confidence and independence (Balakrishnan et al, 2017; Barclay-Goddard et al, 2012; Bishop et al, 2013; Evans et al, 2016; Genoe & Dupuis, 2013; Gunton et al, 2021; Maratos et al, 2016; Seetharaman et al, 2021; Tornbom et al, 2019; van Heijningen et al, 2021; Walker et al, 2020). By not addressing the social needs required for change, concerns around physical environmental barriers could likely prevent activities such as going to shops or restaurants and further isolate people living with neurological conditions from society, resulting in a person feeling ignored and not important enough for society to address such issues, and leaving a sense of disappointment with how people living with a neurological condition are being treated by society.…”

“…Relationships were important to people living with neurological conditions (Balakrishnan et al, 2017; Barclay-Goddard et al, 2012; Genoe & Dupuis, 2011, 2013, 2014; Hebblethwaite & Curley, 2015; van Heijningen et al, 2021). Support networks were savoured by being cherished and, although primarily reported to focus on significant others, the sense of connection and relationships also extended to appreciating relationships with pets.“To cuddle with pets is an excellent way to recover … cuddling with my cat has been lifesaving to me!…”

“…Physical environmental challenges were also illuminated and were presented in the photographs and accompanying narrative by documented obstructions and other obstacles that caused problems to the individual living with a neurological condition (Balakrishnan et al, 2017; Barclay-Goddard et al, 2012; Bishop et al, 2013; Evans et al, 2016; Genoe & Dupuis, 2013; Gunton et al, 2021; Maratos et al, 2016; Seetharaman et al, 2021; Tornbom et al, 2019; van Heijningen et al, 2021; Walker et al, 2020).…”

From ‘Us and Them’ to ‘Me and You’: Fostering Inclusion in Daily Care Practice in Terms of Equal Partnership

“…Cobigo and colleagues (2016) interviewed people with intellectual disabilities about their views on inclusion, which resulted in four items rated as highly relevant to all respondents: a) belonging to a group, (b) having interpersonal relationships, (c) being accepted as an individual, and (d) having reciprocal relationships. This corresponds to the themes that people with disabilities have identified as being key for involvement in society: belonging, being valued, accessibility, and having agency (Yeung, Passmore & Packer 2008;van Heijningen et al 2021). So, despite appealing descriptions and key elements, existing definitions and practices of inclusion are not (enough) based on the perspectives of the people concerned (Cobigo et al 2016;Hammell 2013;Fadyl, Teachman & Hamdani 2020).…”