Exploring fathers' experiences of caring for a child with complex care needs through ethnography and arts-based methodologies.

BACKGROUND: Although the number of children living with complex care needs (CCN) is increasing worldwide, there is limited data on the experience of fathers caring for children with CCN. This paper reports on findings specific to fathers' experiences of caring for their child with CCN and highlights recommendations provided for parents of children with CCN, service providers, and policymakers. The findings emerged from a larger study designed to examine how Canadian families of children with CCN participate in society. METHODS: We used the qualitative research approach of ethnography and arts-based methodologies (ecomaps and photovoice) as well as purposive and snowball sampling techniques. Four parents were engaged as advisors and twenty-nine fathers participated in interviews (all were married or in a relationship; age range of 28 to 55 years). In line with an ethnographic approach, data analysis involved several iterative steps including comparing data from the first, second, and third set of interviews and refining themes. RESULTS: One overarching theme, striving to be there for the child with CCN, was identified. Five supporting themes further exemplified how fathers strived to be there for their child: 1) contributing to the parental team through various roles; 2) building accessibility through adaptation; 3) engaging in activities with the child; 4) expressing admiration and pride in their children; and 5) meaning making. Recommendations for parents included making and nurturing connections and asking for help while recommendations for healthcare and social service providers included communicating authentically with families and listening to parents. Fathers also indicated that leadership and funding for programs of families of children with CCN should be priorities for policymakers. CONCLUSIONS: In addition to documenting fathers' active involvement in their child's care and development, our findings provide new insights into how fathers make participation in everyday life accessible and inclusive for their children. Study findings also point to 1) priority areas for policymakers (e.g., accessible physical environments); 2) factors that are critical for fostering collaborative care teams with fathers; and 3) the need for complex care teams in the adult health care system. Implications for those providing psychosocial support for these families are noted as well as knowledge gaps worthy of future exploration such as the role of diversity or intersectionality in fathering children with CCN.

Exploring physical activity and sedentary behaviour: perspectives of individuals with osteoarthritis and knee arthroplasty.

Purpose: To explore the understanding of physical activity and sedentary behaviour, including barriers and health influences in people with osteoarthritis and knee arthroplasty.Methods: Eight participants with knee osteoarthritis and 14 participants with total knee arthroplasty were recruited to five focus groups. Interpretive description was used with thematic analysis of data.Results: Three primary themes arose: (1) continuum of activity; (2) barriers to increasing physical activity and barriers to reducing sedentary behavior, and (3) knowledge gap. While participants were generally familiar with the concepts of physical activity and sedentary behaviour, they were not aware of health risks associated with high levels of sedentary time and did not consider substituting standing and light walking for activities typically done in sitting. Participants reported that extrinsic barriers (e.g., related to social and cultural contexts or the physical environment) influenced sedentary behaviour more than intrinsic factors.Conclusions: Patients would benefit from clinicians providing education about risks associated with sedentary behaviour and strategies to reduce and/or break up sitting time. Future research should continue to explore personal as well as societal, environmental, political, and economic influences on sedentary behaviour and physical activity to promote behaviour change.Implications for rehabilitationPeople with osteoarthritis and total knee arthroplasty are not aware of health risks associated with high levels of sedentary behaviour.This cohort tends to think about increasing moderate-to-vigorous physical activity levels (versus increasing light activity) when asked to consider ways to reduce sedentary behaviour.Social and environmental factors strongly influence sedentary behaviour. Clinicians need to be aware of the pervasive nature of sedentary behaviour and provide knowledge and strategies to change peoples' sitting habits.Addressing intrinsic factors (e.g., related to comorbidities, ageing, and personal preferences) with education and the use of existing behaviour change techniques may enable increased physical activity levels.

The importance of assistive technology in the productivity pursuits of young adults with disabilities.

BACKGROUND: Young adults with disabilities often use assistive technology (AT) to address personal needs, engage in communities and pursue educational and vocational goals. Little is known about their personal experiences and challenges of accessing and using AT for productivity-related activities. OBJECTIVE: This study aimed to learn from young adults about their experiences and use of AT in supporting their productivity. METHODS: Using a qualitative approach, 20 young adult AT users engaged in semi-structured interviews and a photovoice process. Data were analysed inductively. RESULTS: Three primary themes were identified: I Have to Figure it out Myself, With the Right AT, and Relational Aspects of AT Use. Although participants were experienced AT users, they were often left alone to figure out their emerging needs. They relied on AT to participate in productivity pursuits however stigma around AT use in unsupportive work environments were new concerns. CONCLUSIONS: Young adults with disabilities draw on their experiences of AT use but may need to develop advocacy skills to ensure their needs are met in productivity-related environments. Employers and supervisors should recognize AT as essential to young adult's engagement with productivity-related activities and have an important role in developing inclusive work environments.

The embodied spaces of children with complex care needs: Effects on the social realities and power negotiations of families.

This paper presents research findings that advance knowledge around the power and agency families with children with complex care needs (CCN). Our conceptual framework uses concepts from geography towards situating the experiences and social realities of family carers within the 'embodied space of care'. The data originate from a longitudinal qualitative study of Canadian families with children with CCN. Findings reveal that interactions and decision-making processes relating to health and everyday life were complex and socially interconnected, and emphasize the need for provisions for family-based decision-making and enhanced social inclusion of families and the importance of the renegotiation of power.

Intense parenting: a qualitative study detailing the experiences of parenting children with complex care needs.

BACKGROUND: Increased numbers of children with chronic illnesses and/or disabilities who have complex care needs are living at home. Along with the transfer of care to the home setting, parents assume the primary responsibility of their child's complex care needs. Accordingly, it becomes even more important to understand the evolving roles and challenges faced by parents of children with complex care needs in order to better support them. The aim of this paper is to present research findings that add to our understanding of the roles parents assume in parenting their children with complex care needs. METHODS: To arrive at a detailed and accurate understanding of families' perspectives and experiences, the qualitative research design of ethnography was used. In total, 68 parents from 40 families were recruited. Data collection strategies included ethnographic methods of interviewing and photovoice. Several levels of analysis generated a sociocultural theme with subthemes representing how parents experienced raising children with complex care needs within the context of their life situations. RESULTS: Intense parenting as the overarching theme refers to the extra efforts parents had to commit to in raising their children with complex care needs. Parenting was described as labour-intensive, requiring a readiness to provide care at any time. This left parents with minimal time for addressing any needs and tasks not associated with caring for their child. The main theme is supported by four sub-themes: 1) the good parent; 2) more than a nurse; 3) there's just not enough; 4) it takes a toll on the health of parents. CONCLUSIONS: Overall, parents of children with complex care needs take on more roles as well as work more intensely at these roles than parents of healthy children. This, in turn, has led to the need for additional supports and resources for parents. However, to date, parents of children with complex care needs are still lacking adequate services and supports necessary to help them in their role of intense parenting. The findings sensitize professionals to the issues confronted by parents caring for children with complex care needs. Implications for further research and clinical practice are discussed.

Barriers to wheelchair use in the winter.

OBJECTIVES: To test the hypothesis that challenges to community participation posed by winter weather are greater for individuals who use scooters, manual and power wheelchairs (wheeled mobility devices [WMDs]) than for the general ambulatory population, and to determine what WMD users identify as the most salient environmental barriers to community participation during the winter. DESIGN: Cross-sectional survey organized around 5 environmental domains: technological, natural, physical, social/attitudinal, and policy. SETTING: Urban community in Canada. PARTICIPANTS: Convenience sample of WMD users or their proxy (N=99). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Not applicable. RESULTS: Forty-two percent identified reduced outing frequency in winter months, associated with increased age (χ(3)=6.4, P=.04), lack of access to family/friends for transportation (χ(2)=8.1, P=.04), and primary type of WMD used in the winter (scooter χ(2)=8.8, P=.003). Most reported tires/casters becoming stuck in the snow (95%) or slipping on the ice (91%), difficulty ascending inclines/ramps (92%), and cold hands while using controls or pushing rims (85%); fewer identified frozen wheelchair/scooter batteries, seat cushions/backrests, or electronics. Sidewalks/roads were reported to be problematic by 99%. Eighty percent reported needing additional help in the winter. Limited community access in winter led to a sense of loneliness/isolation, and fear/anxiety related to safety. Respondents identified policies that limited participation during winter. CONCLUSIONS: People who use WMDs decrease their community participation in cold weather because of multiple environmental barriers. Clinicians, researchers, and policymakers can take a multidimensional approach to mitigate these barriers in order to enhance community participation by WMD users in winter.

Assistive technology provision within the Navajo Nation: user and provider perceptions.

In this study we explored the factors that affect assistive technology (AT) provision within the Navajo Nation using a qualitative approach to inquiry. Focus groups were held in which AT users discussed their awareness of AT and their need for, use of, and satisfaction with AT devices and services. Twenty-eight individuals who used wheelchairs, orthotics or prosthetics, hearing aids, communication aids, vision aids, and other AT participated in one of seven focus groups. Seven AT providers discussed the facilitators and barriers that affect AT provision. The findings revealed six themes common to both stakeholder groups and two additional themes for AT users. The central theme for AT users centered on (not) feeling understood; the central theme for AT providers revolved around the processes, activities, and roles the providers engaged in at times for different clients. Activities to increase awareness and to promote successful AT provision and satisfaction with AT devices were proposed.

Advancing the use of theory in occupational therapy: a collaborative process.

BACKGROUND: Theory is important to the growth and evolution of occupational therapy. However, use of theory remains challenging for many therapists. PURPOSE: The aim was to develop a process that occupational therapists could apply to advance theory in practice. METHOD: Based on a review of the literature and using a qualitative instrumental case study design, 18 student occupational therapists and eight fieldwork educators completed online modules on the theory advancement concepts generated from the literature, wrote journals, and/or participated in online discussions during fieldwork. Following fieldwork, educators were interviewed and students participated in focus groups exploring their experiences. Directed content analysis was used to analyze the data. FINDINGS: Based on the data collected, we developed the Theory Advancement Process (TAP). The TAP is composed of four primary contexts, a climate of collaborative relationships with four key elements, and four essential processes. IMPLICATIONS: The TAP presents a collaborative process for students, faculty, and therapists to work together to advance the use of theory in practice.

The role of assistive technology in self-perceived participation.

The aim of this study was to develop an understanding of how assistive technology (AT) contributes to self-perceived participation for individuals with spinal cord injuries and to propose a revised definition of AT in light of the findings. A grounded theory study of 19 adults with spinal cord injuries was conducted. Participants engaged in individual in-depth interviews and took photographs of the role of AT in their own environments. Analysis consisted of an inductive process of constant comparison. Participants attended a follow-up focus group intended to verify and contribute to the credibility of the findings. The primary theme identified was AT as a means to participation. Three categories served to identify the decision-making processes that individuals underwent to select AT that would promote positive participation experiences: inclusion versus autonomy and accomplishment, availability and cost and contexts of use. A new definition of AT was proposed; this definition identifies AT as a means to enable occupation, emphasizes the relevance of the environment and highlights the importance placed on self-perceived participation. AT recommendations must be based on a thorough understanding of the role that AT plays in the lives of clients. Future research will further develop and validate the definition proposed in this study.

Experiences with using a pushrim-activated power-assisted wheelchair for community-based occupations: a qualitative exploration.

BACKGROUND: Occupational therapists strive to engage individuals in occupation and enhance community access through wheelchair prescription. Previous research with pushrim-activated, power-assisted wheelchairs identifies a reduction in the physical demands of manual wheelchair propulsion but limited evidence exists regarding user evaluation in context. PURPOSE: This study explored the experience of using a power-assisted wheelchair in the community. METHODS: Eight individuals who used both a power and manual device participated in focus groups after trialing a power-assist wheelchair for three weeks. Data were analyzed using a qualitative description approach. FINDINGS: Three themes emerged from our analysis: relative advantages and disadvantages; environmental factors that affect accessibility; and evaluation of mobility device. IMPLICATIONS: Participants perceived the power-assist as improving performance and accessibility compared with the manual wheelchair, increasing the potential scope of occupations and environments, but not replacing their power mobility device. Sufficient time for adjustment of both user and device was important.

The winter walkability project: occupational therapists' role in promoting citizen engagement.

BACKGROUND: Walkability is one feature of a person-friendly community that citizen engagement can influence. PURPOSE: Describe a winter walkability project and how an occupational therapist supported citizen engagement and participation in local policy decision making. METHODS: Seven stakeholder representatives undertook a participatory research project to address winter walkability. Through focus groups and walking logs, 10 citizens provided feedback on barriers to winter walking and a new sidewalk snow-clearing method. Analysis ascertained factors contributing to winter sidewalk walkability and factors promoting citizen engagement. FINDINGS: Results identified reasons for and barriers to walking, perceived reasons for sidewalk conditions, and perceived effectiveness of the snow-clearing intervention. Citizens recommended against using the new snow-clearing method. Factors promoting citizen engagement included individual actions producing nominal results, individual and community-level interest, and development as citizen-experts. IMPLICATIONS This project provides one example of how occupational therapists can take a sociopolitical role and facilitate citizen and occupational engagement.