School of Rural and Northern Health, Laurentian University Ramsey Lake Road Sudbury, Ontario, Canada P3E 2C6; ECHO (Evaluating Children's Health Outcomes) Research Centre and Laurentian University Ramsey Lake Road Sudbury, Ontario, Canada P3E 2C6. Electronic address: email@example.com.
Community-based participatory research (CBPR) is a promising approach used with increasing prevalence in health research with underserviced Indigenous communities in rural and remote locations. This case comparison used CBPR principles to examine the characteristics of two collaborative research projects in Canada. Both projects reflected CBPR principles in unique ways with particular differences related to community access and proximity of collaborating partners. CBPR principles are often used and recommended for partnerships involving remote underserviced communities, however many of these principles were easier to follow for the collaboration with a relatively well serviced community in close proximity to researchers, and more challenging to follow for a remote underserviced community. The proximity paradox is an apparent contradiction in the increasing application of CBPR principles for use in distal partnerships with remote Indigenous communities when many of these same principles are nearly impossible to follow. CBPR principles are much easier to apply in proximal partnerships because they afford an environment where collaborative relationships can be developed and sustained.
Quality of life (QoL) is a ubiquitous yet poorly defined concept; the precise determinants of QoL are rarely identified. We used pilot data from the GapS Questionnaire to investigate the most important determinants of QoL in children with chronic somatic illness.
We enrolled 92 participants including 60 parents and 32 of their children. The sample comprised rheumatology, diabetes, epilepsy, gastroenterology, cystic fibrosis, and day unit patients. Trained interviewers administered the GapS Questionnaire to parents, and to children if = 10 years. We determined the relative importance of different items for QoL.
Child participants had a mean age of 14.7 years. Children identified "having good friendships", "being happy most days", and "getting along with parents" as most important. Parents ranked most highly "being allowed to do all the things you like doing", "getting told you have done a good job at something", and "being physically able to do everything you enjoy doing".
Physical health items were not as important as social and psychological determinants of QoL in our pilot sample.
Hospitalized children continue to experience inadequate pain management. Children in the rural hospital setting may be at risk due to unique challenges experienced by Registered Nurses (RNs) in this context.
To understand the experience of pain care from RNs who work in rural hospitals with inpatient pediatric patients.
Qualitative description that used semi-structured interviews to explore RNs' inpatient pediatric pain care experiences.
RNs who: 1) worked directly with pediatric in-patients; 2) spoke English; 3) and who worked in rural Northern Ontario. Hospital sites were selected based on population density, from one province in Canada. To reduce heterogeneity, only sites with dedicated pediatric beds were eligible (n?=?9).
This qualitative descriptive study used semi-structured interviews over Skype and telephone. Data were analyzed using inductive content analysis.
Ten participants were recruited from seven sites. Five main categories were identified, with one category that influenced all other categories. Rural RNs needed to practice as generalists as they care for many types of patients. Resource challenges included a lack of specialist expertise and educational opportunities. Pediatric pain was not perceived as a priority within their organizations. Most participants perceived there were no explicit standards for pain care. Moving forward the adoption of built in assessments in electronic documentation was suggested as a solution to standard pain care.
Opportunity exists to improve pediatric pain management, however, without a systematic approach that considers the rural context, pain care for children will continue to be based on individual's beliefs and knowledge.
Since the advent of combination antiretroviral therapy, in developed countries HIV increasingly is perceived as a long-term illness. Individuals may experience health-related consequences of HIV and its associated treatments, a concept that may be termed disability. To date, a comprehensive framework for understanding the health-related consequences experienced by people living with HIV has not been developed. The purpose of this research was to develop a conceptual framework of disability from the perspective of adults living with HIV.
We conducted four focus groups and 15 face-to-face interviews with 38 adults living with HIV. We asked participants to describe their health-related challenges, their physical, social and psychological areas of life affected, and impact on their overall health. We analyzed data using grounded theory techniques. We also conducted two validity check focus groups with seven returning participants.
Disability was conceptualized by participants as multi-dimensional and episodic characterized by unpredictable periods of wellness and illness. The Episodic Disability Framework consisted of three main components: a) dimensions of disability that included symptoms and impairments, difficulties carrying out day-to-day activities, challenges to social inclusion, and uncertainty that may fluctuate on a daily basis and over the course of living with HIV, b) contextual factors that included extrinsic factors (social support and stigma) and intrinsic factors (living strategies and personal attributes) that may exacerbate or alleviate disability, and c) triggers that initiate momentous or major episodes of disability such as receiving an HIV diagnosis, starting or changing medications, experiencing a serious illness, and suffering a loss of others.
The Episodic Disability Framework considers the variable nature of disability, acknowledges uncertainty as a key component, describes contextual factors that influence experiences of disability, and considers life events that may initiate a major or momentous episode. This framework presents a new way to conceptualize disability based on the experience of living with HIV.
To describe the health and health-related quality of life (HR-QoL) outcomes of youths and young adults with spina bifida.
One global rating of self-rated health and 2 generic measures of HR-QoL were administered to a group of youths and young adults with spina bifida. HR-QoL was measured using the Health Utilities Index Mark 3 (HUI3) and the Assessment of Quality of Life version 1 (AQoL).
Data was obtained from 40 youth (mean age 16.0 years) and 13 young adults (mean age 26.6 years). Most youth rated their overall health as either excellent or very good (65%) compared with fewer adults (23%) (P = .007). The mean HR-QoL scores for youths versus adults were 0.57 versus 0.36 (P = .03) for the HUI(3) and 0.37 versus 0.25 for the AQoL (P = .09). HUI(3) and AQoL scores were correlated with level of anatomic lesion (rho = 0.64 and rho = 0.42, respectively).
The HR-QoL of youths and young adults with spina bifida was low on measures that are aggregated using societal values (the HUI3 and AQoL). This is in contrast to their single global self-ratings of health, which were more favorable. These findings underscore the distinction between ratings of HR-QoL based on societal values versus the personal lived experiences of adults with childhood-onset disability.
The Aboriginal Children's Health and Well-Being Measure (ACHWM) was developed to enable Aboriginal health leaders to gather information on the health of children at a local community level. This paper aims to describe the typical health profiles of First Nation children living on traditional territory as a reference to assist in the interpretation of ACHWM scores.
Three First Nations in Ontario, Canada, gathered health data from children using the ACHWM administered on Android tablets between 2013 and 2015. The survey data were previously analyzed to inform local health planning. These survey data were pooled to describe the distribution of ACHWM summary and quadrant scores from a larger sample and inform interpretation of ACHWM scores.
ACHWM data from 196 participants (aged 7.6 to 21.7 yr) across 3 communities were included in the pooled sample. ACHWM summary scores ranged from 39.8 to 98.7 with a mean of 74.1 (95% confidence interval [CI] 72.5-75.7) and a maximum of 100. Strengths were reported in the spiritual (mean 78.7, 95% CI 76.7-80.8), physical (mean 77.1, 95% CI 75.1-79.0) and emotional (mean 74.4, 95% CI 72.5-76.3) quadrants. The greatest opportunity for improvement was in the mental (cognition) quadrant (mean 61.6, 95% CI 56.9-63.4).
This paper presents initial estimates for child health scores based on self-report from a large sample of First Nations children living on reserve. These results establish benchmarks to aid interpretation of the ACHWM scores in these and other communities and contexts in the future.
It is important to measure the quality of life (QoL) of boys with haemophilia, because the diagnosis has a significant impact on their lives and this impact fluctuates over time. A disease-specific measure of QoL is required because the aspects of life that are affected by haemophilia may differ from those assessed by generic QoL measures. This paper describes the final phase of development of a disease-specific measure of QoL for boys with haemophilia: the Canadian Haemophilia Outcomes-Kids Life Assessment Tool (CHO-KLAT).
A 79-item version of the CHO-KLAT was administered to 52 children. A detailed item analysis was conducted to shorten the CHO-KLAT. The reliability of the revised version was assessed using intraclass correlation coefficients. Validity was assessed by comparing it to the PedsQL and the HaemoQoL.
The item analysis resulted in the retention of 35 strongly performing items (CHO-KLAT(35)). These items were aggregated into the CHO-KLAT(35) summary score. Repeated measures reliability of the CHO-KLAT(35) was 0.74 for children and 0.83 for parents, and the child-parent concordance was 0.75. The validity of the CHO-KLAT(35) was confirmed by a correlation of 0.78 with the Haemo-QoL and of 0.59 with the PedsQL.
The CHO-KLAT(35) is a reliable and valid measure of QoL for boys with haemophilia.
Infants and children hospitalized with complex conditions often face sudden and dramatic reduction in supervision and monitoring after discharge. A telehome care program was designed to improve the transition home for these children by integrating visiting home care services with outreach from pediatric nurses located in the hospital via videoconferencing. Children were recruited into a trial of telehome care for up to 6 weeks following discharge. Parental preference for this service was measured prior to and following participation. There were 10 enrollments in the pilot stage and 57 during the trial. These children had serious chronic conditions with comorbidity. The majority had a cardiac, respiratory, or otolaryngolic primary diagnosis. More than half of the respondents (59%) indicated strong preferences for telehome care prior to participation. The satisfaction for care delivered at home was no different from care in the hospital. There was no difference in satisfaction or preference observed by sociodemographic factors, diagnosis, or clinical circumstance. Parents with children who have significant health care needs have a strong preference for and satisfaction with telehome care. Additional evidence on costs and benefits may be important for promoting further development of this type of service.
The purpose of this study was to identify concepts of health and well-being important to Aboriginal children and youth. These concepts were necessary for the development of a culturally appropriate measure of health.
We completed 4 community consultation sessions, 4 advisory committee meetings, and 6 full-day focus groups within the Wikwemikong Unceded Indian Reserve. The focus groups engaged Aboriginal children and youth via relevant cultural teachings, a photography exercise combined with a community bicycling tour, and detailed discussions of health and well-being using photovoice. The process was guided by a conceptual model: the Medicine Wheel. The participants placed their photos on a wall mural and identified their most important concepts. These concepts were synthesized through expert consensus into items and reviewed by the broader community.
The participants ranged in age from 8.2 to 17.7 years (mean age=12.3). Through innovative methods, children and youth identified 206 concepts representing the 4 quadrants of the Medicine Wheel: emotional, spiritual, physical and mental. These concepts were refocused, in collaboration with the community, to create a new 60-item measure of health and well-being that was primarily positive in focus.
This study demonstrates the success of implementing a unique process of photovoice in combination with bicycling and informed by an Aboriginal framework. The results confirm the distinct conceptualization of health and well-being in this population and underscore the necessity for a culturally appropriate measure. This study also produced a first draft of the Aboriginal Children's Health and Well-being Measure (ACHWM).
Aboriginal children in Canada experience significant disparities in health in comparison to their mainstream peers. As Aboriginal communities and agencies strive to improve health, it is important to measure the impact of new programs and services. Since many Aboriginal children live in rural and remote communities, it is important that communities have access to measurement tools that are relevant and feasible to implement in these contexts. The Aboriginal Children's Health and Well-being Measure (ACHWM) was developed to meet the need for a culturally relevant measure of health and wellbeing for Aboriginal children (ages 8-18 years) in Canada. It was developed within one First Nation community: the Wiikwemkoong Unceded Territory. The intention from inception was to ensure the feasibility and relevance of the ACHWM to other Aboriginal communities. The purpose of this article is to describe the relevance of the ACHWM beyond Wiikwemkoong.
This article presents the results of a community-based and collaborative research study that was jointly led by an academic researcher and a First Nations Health leader. The research began with the 58-question version of the ACHWM developed in Wiikwemkoong. The ACHWM was then submitted to a well-established process of community review in four new communities (in sequence): Weechi-it-te-win Family Services, M'Chigeeng First Nation, Whitefish River First Nation, and the Ottawa Inuit Children's Centre (OICC). The review process included an initial review by local experts, followed by a detailed review with children and caregivers through a detailed cognitive debriefing process. Each community/agency identified changes necessary to ensure appropriate fit in their community. The results from all communities were then aggregated and analysed to determine the similarities and differences.
This research was conducted in 2014 and 2015 at four sites. Interviews with 23 children and 21 caregivers were completed. Key lessons were learned in all communities that enabled the team to improve the ACHWM in subtle but important ways. A total of 12 questions were revised, and four new questions were added during the process. This produced a 62-question version of the ACHWM, which was endorsed by all communities.
The ACHWM has been improved through a detailed review process in four additional communities/agencies and resulted in a stable 62-question version of the survey. This process has demonstrated the relevance of the ACHWM to a variety of Aboriginal communities. This survey provides Aboriginal communities with a culturally appropriate tool to assess and track their children's health outcomes, enabling them to gather new evidence of child health needs and the effectiveness of programs in the future.