Prevalence of and factors associated with expressed and unmet service needs reported by persons with spinal cord injury living in the community

Trezzini, Bruno; Brach, Mirjam; Post, Marcel W M; Gemperli, Armin

doi:10.1038/s41393-019-0243-y

Cited by 19 publications

(19 citation statements)

References 23 publications

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“…Female respondents reported higher needs in all domains and barriers to enjoying life compared with male respondents. This is contrary to the findings of Trezzini et al (2019), where expressed needs were not associated with gender in individuals with SCI despite female participants in their study reporting higher unmet needs for recreation and peer support. Our findings could be a reflection of the demands and expectations placed on women in our environment.…”

Section: Discussioncontrasting

confidence: 99%

Expectations of individuals with neurological conditions from rehabilitation: A mixed-method study of needs

Olaleye

Zaki

Hamzat

2021

South African Journal of Physiotherapy

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Background Knowledge of the specific expectations of patients with neurological conditions (NCs) from rehabilitation helps in setting attainable goals. Such expectations may vary from situation to situation. There are no studies investigating rehabilitation expectations amongst individuals with NCs in Nigeria. Objectives The aim of our study was to explore the rehabilitation expectations of individuals with NCs. Method This convergent mixed-methods study comprised a cross-sectional survey of 105 individuals with NCs and two sessions of Focus Group Discussions (FGDS) amongst eight individuals with NCs. The modified Needs Assessment Questionnaire was used to assess rehabilitation needs as a proxy for rehabilitation expectations, whilst disability was assessed using the World Health Organization Disability Assessment Schedule 2.0. Quantitative data were summarised using descriptive statistics and analysed using inferential statistics at p < 0.05. Thematic analysis was conducted on the qualitative data. Results Sixty-one (58.1%) stroke survivors, 33 (31.4%) individuals with spinal cord injury (SCI) and 11 (10.5%) with traumatic brain injury (TBI) aged 46.48 ± 15.91 were surveyed. The need for social/recreational activity was the most expressed need (100%) amongst the participants. Mobility was reported as an important need constituting a barrier to enjoying life by 93 (88.6%) participants. Individuals with SCI expressed the greatest needs compared with the other two groups. Needs were significantly correlated with severity of disability ( p < 0.05). Four overarching themes (physical health, financial, healthcare services/rehabilitation and emotional/social) representing major areas of needs emerged from the FGD data. Conclusion Individuals with NCs in Nigeria have specified expectations of rehabilitation. Disability was a major driver of these expectations, irrespective of NC subtype. Clinical implications Rehabilitation programmes for individuals with NCs should target expressed needs or expectations of each patient cohort and minimise disabilities associated with these conditions.

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Section: Discussioncontrasting

confidence: 99%

Expectations of individuals with neurological conditions from rehabilitation: A mixed-method study of needs

Olaleye

Zaki

Hamzat

2021

South African Journal of Physiotherapy

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“…Linking caregivers to resources would help them find the appropriate support when it was most needed. In this regard, the introduction of case management programs could also help; in a recent study in Switzerland nearly half of the respondents reported that their need for case management was at best partially fulfilled [ 37 ].…”

Section: Discussionmentioning

confidence: 99%

The challenges characterizing the lived experience of caregiving. A qualitative study in the field of spinal cord injury

et al. 2021

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Study design Qualitative exploratory study. Objectives To explore the lived experience of SCI caregivers, with a focus on the challenges of their role. Setting Caregivers of people with SCI living in the community in Switzerland. Methods Data were collected through semi-structured interviews. Thematic analysis was performed. Results The sample included 22 participants (16 women, 15 life partners) with a mean age of 61 years who had been caregivers for an average of 18 years. Caregiving in SCI seemed to be characterized by two phases. The first phase was relatively short and was central to becoming a caregiver; it was marked by challenges related to adjusting to the role of caregiver (e.g., dealing with shock, feeling unprepared). The second phase is lifelong and is characterized by a number of recurrent challenges related to balancing caregiving and personal life (e.g., having to prioritize caregiving over personal wishes, negotiating tasks and workload). Challenges related to lacking appropriate housing, facing financial uncertainty and dealing with bureaucracy were noted during both phases. Caregivers had to deal with these challenges to stay in step with life changes and newly emerging needs. Conclusions Informal caregivers have a major role in supporting people with SCI. But their needs are not static. Any strategy to empower them has to adapt to an evolving role characterized by multiple tasks and challenges. A functional relationship between caregivers and care recipients is based on the recognition of their individualities and the different phases of adaptation, which is also an enriching process.

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“…This nding is surprising, as it was previously reported that individuals with incomplete lesions expressed dissatisfaction with the quality of primary care services in terms of the ful lment of SCI-speci c care needs [11]. However, differences in the need for SCI-speci c care and for a broader range of services between persons with incomplete and complete lesions might explain their choice of rst contact [38]. An additional aspect may be the local availability of specialized care and the travel distance to SCI centres.…”

Section: Interpretation and Comparison With Existing Literaturementioning

confidence: 92%

First Contact of Care for Persons With Spinal Cord Injury: A General Practitioner or a Spinal Cord Injury Specialist?

Touhami

Brach

Essig

et al. 2021

Preprint

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Background. Inter-professional collaboration between general practitioners (GPs) and spinal cord injury (SCI) specialists is needed to improve the health outcomes of persons with SCI. The objective of this study is to understand the differences in long-term care provision by GPs and SCI-specialists, by examining (1) the first contact of care for SCI health problems, (2) the morbidity profile and use of health-care services in relation to first contact, and (3) the factors associated with the choice of first contact.Methods. In this cross-sectional study based on data derived from the Swiss Spinal Cord Injury Cohort Study Community Survey 2017, the main outcome measure was the reported first contact for SCI-specific care. This information was analysed using the chi-square test and logistic regression analysis of groups based on patient characteristics, use of health-care services and secondary health conditions assessed using the Spinal Cord Injury Secondary Conditions Scale (SCI-SCS). Results. Out of 1294 respondents, 1095 reported their first contact for SCI-specific care; 56% indicated SCI-specialists and 44% specified GPs. The mean ± standard deviation of the total SCI-SCS was significantly lower in persons who initially consulted GPs (13.1±7.7) than SCI-specialists (14.6±7.3). On average, participants who first contacted a GP reported higher number of GP consultations (5.1±5.2 vs. 3.9±7.2), planned visits to ambulatory clinics (3.7±7.3 vs. 3.6±6.7) and hospital admissions (GP, 1.9±1.7 vs. 1.5±1.3), but lower number of hospital days (22.8±43.2 vs. 31.0±42.8). The likelihood to contact a GP first was significantly higher in persons ≥75 years old (OR= 4.78, 95%-CI= 1.99–11.50), Italian speakers (OR= 5.11, 95%-CI= 2.47–10.54), had incomplete lesions (OR 2.51, 95%-CI 1.78–3.54) or diabetes mellitus (OR= 1.81, 95%-CI= 1.03–3.18), but lower for those situated closer to SCI centers (OR= 0.69, 95%-CI= 0.51–0.93) or experiencing bowel dysfunction (OR= 0.71, 95%-CI= 0.52–0.98).Conclusion. The choice of first contact for SCI-specific care may be partly explained by the complementary roles of GPs and SCI specialists, but the reasons for variation are still unclear. Developing a transparent shared-care model between GPs and SCI specialists, with defined roles and responsibilities, may improve the management of secondary health conditions.

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Prevalence of and factors associated with expressed and unmet service needs reported by persons with spinal cord injury living in the community

Cited by 19 publications

References 23 publications

Expectations of individuals with neurological conditions from rehabilitation: A mixed-method study of needs

Expectations of individuals with neurological conditions from rehabilitation: A mixed-method study of needs

The challenges characterizing the lived experience of caregiving. A qualitative study in the field of spinal cord injury

First Contact of Care for Persons With Spinal Cord Injury: A General Practitioner or a Spinal Cord Injury Specialist?

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