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A grounded theory of parents’ attendance, participation and engagement in children’s developmental rehabilitation services: Part 2. The journey to child health and happiness

PHOENIX, Michelle
JACK, Susan M
ROSENBAUM, Peter L
MISSIUNA, Cheryl
January 2019

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Purpose: Parents’ attendance, participation and engagement are thought to be critical components of children’s rehabilitation services; however, these elements of therapy are typically under-investigated. The purpose of this study was to develop a substantive theory of parents’ attendance, participation and engagement in children’s rehabilitation services.

 

Methods: A constructivist grounded theory study was conducted. Data collection included interviews with parents (n = 20) and clinicians (n = 4), policies regarding discharge, and child-health records. Data was analyzed using constant comparison, coding and memoing. To promote credibility, authors engaged in reflexivity, peer debriefing, member checking, triangulation and recorded an audit trail.

 

Results and conclusions: The Phoenix Theory of Attendance, Participation and Engagement was developed. This theory is described metaphorically as a journey to child health and happiness that has six components including: parent’s feelings, skills, knowledge, logistics, values and beliefs and parent’s relationship with the professional. The child, parent, service provider, and organizational factors that impact engagement are described. Service providers, policy makers, organizational leaders and researchers can use this information to promote engagement in children’s developmental rehabilitation services.

Parental stress and support of parents of children with spina bifida in Uganda

BANNINK, Femke
IDRO, Richard
VAN HOVE, Geert
2016

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Background: Children with disabilities in Sub-Saharan Africa depend for a large part of their functioning on their parent or caregiver. This study explores parental stress and support of parents of children with spina bifida in Uganda.

 

Objectives: The study aimed to explore perceived stress and support of parents of children with spina bifida living in Uganda and the factors that influence them.

 

Methods: A total of 134 parents were interviewed. Focus group discussions were held with four parent support groups in four different regions within the country. The Vineland Adaptive Behaviour Scales, Daily Functioning Subscales and Parental Stress Index Short Form (PSI/SF) were administered to measure the child’s daily functioning level and parental stress levels.

 

Results: Parental stress was high in our study population with over half of the parents having a > 90% percentile score on the PSI/SF. Stress outcomes were related to the ability to walk (Spearman’s correlation coefficient [ρ] = −0.245), continence (ρ = −0.182), use of clean intermittent catheterisation (ρ = −0.181) and bowel management (ρ = −0.213), receiving rehabilitative care (ρ = −0.211), household income (ρ = −0.178), geographical region (ρ = −0.203) and having support from another parent in taking care of the child (ρ = −0.234). Linear regression showed parental stress was mostly explained by the child’s inability to walk (β = −0.248), practicing bowel management (β = −0.468) and having another adult to provide support in caring for the child (β = −0.228). Parents in northern Uganda had significantly higher scores compared to parents in other regions (Parental Distress, F = 5.467*; Parent–Child Dysfunctional Interaction, F = 8.815**; Difficult Child score, F = 10.489**).

 

Conclusion: Parents of children with spina bifida experience high levels of stress. To reduce this stress, rehabilitation services should focus on improving mobility. Advocacy to reduce stigmatisation and peer support networks also need to be strengthened and developed.

Experiences of patients and service providers with out-patient rehabilitation services in a rehabilitation centre in the Western Cape Province

KUMURENZI, Anne
GOLIATH, Charlyn
MJI, Gubela
MLENZANA, Nondwe
JOSEPH, Conran
STATHUM, Sue
RHODA, Anthea
2015

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Background: Rehabilitation is important for persons with disabilities as it contributes to their sense of autonomy, self-worth and social participation, and improves their quality of life. Improving the quality of rehabilitation services requires the dialogue of patients’ perceptions with those of service providers, in order to recommend informed reform.

 

Objective: The objective was to explore the experiences of persons with physical disabilities and service providers, regarding the multi-disciplinary rehabilitation services provided at a community-based out-patient rehabilitation centre.

 

Methods: A qualitative, exploratory study design was used to collect the data. A focus group was conducted with conveniently selected persons with physical disabilities. Three in-depth interviews were conducted with purposively selected key informants. All ethical considerations were adhered to during the implementation of the study.

 

Results: Patients and service providers had different experiences regarding accessibility to rehabilitation services, and similar experiences with patient education and intensity of rehabilitation. Although the patients experienced that the service providers had sufficient knowledge and skills to manage them, services providers expressed that they lacked certain skills.

 

Conclusions: The experiences expressed highlighted the need to improve rehabilitation services in terms of increasing the capacity of service providers and providing transport services for persons with disabilities.

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