Finnish Association of People with Physical Disabilities

ABSTRACTBackgroundFamily carers of people with intellectual and developmental disabilities are at increased risk of stress and often face barriers to accessing appropriate supports. Peer support can enhance the effects of well‐being interventions, yet research is limited regarding family carers' experiences within peer support roles.MethodSemi‐structured interviews were conducted with 10 peer mentors (four adult siblings, six parent carers) paid to support other family carers undertaking an online mindfulness intervention. Interviews were recorded and transcribed. The data were analysed using Framework Analysis.ResultsPeer mentors discussed their motivations, the importance of shared experiences within the mentoring relationships, increased confidence and self‐belief, and learning and growing throughout the mentoring role.ConclusionPeer mentors spoke positively, discussing benefits within their personal lives and future employment opportunities. Further research is needed regarding the experiences of mentors who withdrew from the role, as well as fathers, brothers and people from ethnic minority communities.

To examine what direct and indirect societal costs are associated with decreased visual acuity (VA). Nationally representative sample of 8028 Finnish adults aged 30 years or older with survey data and clinical examination including VA assessment was evaluated. These data were linked with multiple national registers to capture health care services utilization during 1999-2013. All direct and indirect costs were calculated using prevalence-based bottom-up approach and adjusted for age, sex, and comorbidities with generalized linear models. The results in 2019 cost level are presented according to VA groups at baseline per person, and with population estimates. Total direct health care costs ranged from 1996 €/year/person for those with VA ≥1.0 to 3277 €/year/person for those with weak (0.32-0.5) VA. The increase in direct costs was notable even before the onset of visual impairment. Indirect costs showed monotonously increasing trend with decreasing VA. At the population level, the additional annual direct costs associated with decreased VA were estimated at 1.9 billion €. Only 2% or less of the additional costs are due to increased direct eye-related secondary health care usage. Estimated additional annual national indirect costs were 1.2 billion €. In addition to those with visual impairment or blindness, health care need, and societal costs are elevated even among those with adequate VA. We conclude, that focusing on prevention of VA decrease would not only help sustain the patients' quality of life but could also reduce the future societal costs.

Objective The purpose of this study was to explore the outcome measures used in upper extremity rehabilitation and research in spinal cord injury and to investigate their psychometry. Design Scoping review. Data sources PubMed, the Cochrane library, PEDro, Medline (Ovid). Eligibility criteria for selecting studies The search process and study selection was carried out as follows: Firstly, a systematic search was carried out for articles on upper extremity rehabilitation after SCI. Performance or observational outcome measures which were designed for a clinical setting were collected from selected studies. Secondly, eligible outcome measures were linked to the ICF. The ICF-linked outcome measures were further screened for inclusion according to how comprehensively they covered ICF categories. Finally, a search of the selected outcome measures was performed to investigate their psychometry. Results A total of four outcome measures and nine psychometric studies were selected for the scoping review; six studies addressed GRASSP, one addressed AuSpinal, one addressed SHFT and one addressed TRI-HFT. Of the 13 COSMIN measurement properties, studies of GRASSP covered seven, AuSpinal covered five and both SHFT and TRI-HFT covered three properties. Conclusions The psychometric properties of GRASSP were most extensively studied showing eligible reliability and validity. Although there are still some measurement properties to be explored, GRASSP can be recommended for use in the evaluation of upper extremity mobility in the SCI rehabilitation and research. More research is needed on the psychometrics of other outcome measures in people with spinal cord injuries before the outcome measures can be unconditionally recommended.

Abstract Background A spinal cord injury (SCI) has multiple effects on the persons’ life, and can lead to impairments in activities, social participation, and environmental factors. Rehabilitation is important for regaining functioning and new skills. The aim of the study wasto determine the factors that people with SCI perceived as promoting and facilitating their rehabilitation, and what they found to be challenges and possible barriers. Methods This study was part of a larger, mixed method Finnish Spinal Cord Injury study (FinSCI). The current study had a qualitative approach and used a deductive-inductive content analysis. The deductive approach was guided by a theory of six phases of a rehabilitation process by Autti-Rämö, followed by an inductive analysis to describe in-depth the perceptions of persons with SCI in each phase of the rehabilitation process. We collected the data by interviews from 45 persons representing participants from FinSCI study and used a structured interview guide. Results We found 28 facilitators and 19 barriers in the rehabilitation process. The majority of the facilitators and barriers were related to the phase of rehabilitation planning. There were more barriers than facilitators at the beginning of the rehabilitation process in applying for and accessing treatment or rehabilitation, and during the implementation of rehabilitation. As for the facilitators that progressed the rehabilitation process, some of them included: successful or realized, planned treatments, rehabilitation events, clear goals, multidisciplinary teamwork, support, and monitoring various changing situations, and rehabilitating one’s own capability and activity. The barriers were: delays, challenges and deficiencies in the planning and implementation of their treatment or rehabilitation, the lack of different rehabilitation professionals’ skills and resources, and different patients’ personal factors, which made the progress of the rehabilitation process cumbersome. Conclusions We identified that communication and interaction were common denominators for the facilitators and barriers. Good communication and interaction among rehabilitation professionals and rehabilitees promoted the occurrence and repetition of facilitating factors during different phases of the rehabilitation process. Good care and good rehabilitation practice for people with SCI were the result of multidisciplinary teamwork, in which a person with SCI was an active member.

This article provides a reflection upon empowerment through spirituality. It presents the way in which the updating process of a spiritual guidebook was taken forward in Finland. The original guidebook, which was meant to be used in hospitals by healthcare professionals and chaplains, was published in 1996. At one point, it became evident that the original guidebook no longer correlated with the changing realities of Finnish society. At the time that the guidebook was originally published, Finnish society was rather homogenous and Christianity dominated the discourse. Nowadays, society has become more pluralistic and the discourse has become more enriched. The Nordic healthcare system increasingly includes people from diverse religious groups. The project to update the guidebook, which ran from 2014 to 2020, aimed to give social and healthcare professionals working in a variety of settings an easy way to update their knowledge on providing spiritual care. The primary objective of the project was to renew and update the guidebook to better match the contemporary spiritual landscape of Finland. The project had several stages. In the first phase, master’s degree students conducted thesis research to produce new information and evidence for the process. In the second phase, data from the two theses were synthesized and analyzed, and the results were used to update the guidebook. The revised guidebook was ready to go to press in March 2020. In this article, we provide insights into the project, and reflect on our own understanding of the role of spirituality in our society and in healthcare based on the work of one of the master’s theses. The master’s thesis discovers relationships between disabled individuals and their assistants, and suggests changes to the guidebook through widening the horizon of spirituality in the caring relationship.

BackgroundSkeletal dysplasias are rare disorders often leading to severe short stature. This study aimed to gain new comprehensive information about functioning and equality in people affected by skeletal dysplasia compared to matched controls without skeletal dysplasia.MethodsFunctioning was assessed by questionnaire, which was formed by operationalizing International Classification of Functioning, Disability and Health (ICF) core set’s categories into the items according to the ICF linking rules, using primarily Patient Reported Outcomes Measurement Information System PROMIS® - items.ResultsAltogether 80 subjects with skeletal dysplasia and 55 age-, gender- and place of residence -matched controls participated. People with skeletal dysplasia experienced more pain (p < 0.001) and the pain interfered more their daily lives (p = 0.037) compared to the controls. They had more problems related to musculoskeletal functions and exercise tolerance, difficulties in mobility, used more assistive products and technology and were more affected by climate and seasonal changes (p < 0.001). They met challenges in self-care, acquisition of goods and services and household tasks (p < 0.001) and in participating in close social relationships, leisure time activities (p < 0.001) and associations and organizational services (p = 0.007). They felt less satisfied with remunerative work (p = 0.003), felt more inequality (p = 0.008), met more negative attitudes of others (p < 0.001) and felt having less support given by family and friends (p = 0.022). They used more social and health services and experienced more dissatisfaction with those.ConclusionsOur study indicates that skeletal dysplasias restrict functioning extensively and significantly affect daily living. By building accessible environment and improving equal services, functioning could be improved.

The use of facilities such as disability pension, psychiatric care, health care and services for people with intellectual disabilities and borderline intellectual functioning (BIF) were compared with the general population and two other study groups comprising people with mild intellectual disabilities (MIDs) and learning problems (LPs). The population-based sample (N=416,973), 'Finland-in-Miniature', was gathered in 1962 and followed until 1998. For the purpose of the present study, three groups were formed: BIF (n=416), MID (n=312) and LP (n=284). The use of services was examined with the help of national registers. As compared with the general population, people with BIF had been granted disability pension 2.7 times more often and had been patients in psychiatric care 3.4 times more often. They had also systematically used more services than people with LP. People with BIF are at risk of inability to work and facing severe mental health problems. They also seem to have more severe psychiatric problems than people with MID and LP. There is, therefore, a crucial need for increasing the awareness in society of BIF. Although this study's follow-up data were collected about 20years ago, it is still relevant because people with BIF are a neglected group and still face growing demands in school and work life with no marked changes in services.