RESUMO
STUDY DESIGN: This was a qualitative study using grounded theory method. OBJECTIVES: To explain the process of family-centered empowerment in a population of individuals with SCI living in Iran. SETTING: Brain and SCI Research Center, Social Welfare Center, and SCI Association of Tehran; Iran. METHODS: Participants were 19 persons with traumatic SCI, 13 family member caregivers, and 11 health care providers selected through purposeful sampling. Data were collected using face-to-face, semi-structured interviews, which were continued until data saturation. The interview data were methodically collected and analyzed using Strauss and Corbin's (1998) recommended method for grounded theory. Constant comparative analysis was simultaneously conducted through reviews of the interview statements, observations of behavior, interviewer field notes, and interviewer memos. The analysis was managed in MAXQDA software version 10. RESULTS: The process of family-centered empowerment following SCI included five categories: (1) disruption in the existential integrity of the individual; (2) constructive life recovery; (3) inhibitors of family-centered empowerment; (4) facilitators of family-centered empowerment, and (5) back on track. Constructive life recovery was selected as the core variable using the grounded theory method. This core variable identified the strategies most frequently used by the participants to cope with the challenges of SCI-related impairment, disability, and overall life management. CONCLUSIONS: Family-centered empowerment process in individuals with SCI living in Iran emerged from the data. The model includes early disruptions in the bio-psycho-social and vocational lives of individuals with SCI and their families, strategies for recovery post injury, inhibitors and facilitators of family-centered empowerment, the gradual return to work and daily activities, and the expected social roles for individuals with SCI.
Assuntos
Empoderamento , Família/psicologia , Traumatismos da Medula Espinal/psicologia , Atividades Cotidianas , Adulto , Cuidadores , Feminino , Teoria Fundamentada , Humanos , Irã (Geográfico) , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa , Retorno ao Trabalho , Traumatismos da Medula Espinal/enfermagem , Traumatismos da Medula Espinal/reabilitação , Adulto JovemRESUMO
Background: Caregiver burden (CB) is a consequence of providing care to people with spinal cord injury (SCI). However, there is a lack of clarity about the influence of secondary conditions of care recipients on family caregivers. Secondary conditions refer to the physical and psychological complications that can occur after SCI and lead to increased hospitalization and reduced functionality, quality of life, and social participation. Objective: To assess the impact of physical and psychological secondary conditions of people with SCI on the perceived burden of family caregivers. Methods: A multicenter, cross-sectional study of 56 dyads of family caregivers and individuals with SCI in two urban spinal units in Italy and Ireland. Care recipients completed a toolset consisting of demographic information and assessments of functional, physical, and psychological health. Caregivers completed a multidimensional measure of CB. Bivariate data analysis was used. Results: No significant differences between centers were identified. CB was found to be related to physical secondary conditions and functional independence but not to mental health of care recipients. Bladder dysfunction and urinary tract infections influenced all dimensions of CB, whereas pressure injuries influenced only the time-dependent dimension. Level and completeness of injury and duration of caregiving increased CB. Conclusion: Findings indicate the value of a reduction in secondary conditions not just for individuals with SCI but also for their family caregivers. To reduce the individual and family burden of secondary conditions, a two-pronged, multidimensional approach, focusing on self-management for care recipients and psychoeducational support for caregivers, is required.
Assuntos
Cuidadores/psicologia , Efeitos Psicossociais da Doença , Traumatismos da Medula Espinal/enfermagem , Estresse Psicológico , Adulto , Idoso , Correlação de Dados , Estudos Transversais , Feminino , Humanos , Irlanda , Itália , Masculino , Pessoa de Meia-Idade , Qualidade de Vida , Inquéritos e QuestionáriosRESUMO
INTRODUCTION: Few studies have investigated how caregivers manage stressors associated with their child's spinal cord injury (SCI) and how these patterns relate to their child's coping and adjustment. The current study explored empirically derived coping profiles among caregivers of youth with SCI and the relation of these patterns to parent and youth psychosocial outcomes. METHOD: This was a cross-sectional survey of 318 children (ages 1 to 18) and a primary caregiver. Participants completed measures assessing demographics, coping, quality of life (QOL), anxiety, and depression. We utilized hierarchical and nonhierarchical cluster analyses to identify unique coping patterns and one-way analysis of variance with control variables to assess relations between parental coping and psychosocial well-being. RESULTS: The analyses produced 3 parent coping clusters, which included avoidant (n = 47), constructive (n = 119), and adjusted/low (n = 152). ANCOVAs revealed that parents in the avoidant cluster, who utilized disengagement and blaming strategies, had significantly worse mental health symptoms compared to the constructive and adjusted low coping clusters. Specifically, avoidant coping was significantly related to increased symptoms of caregiver depression (p < .001) and anxiety (p < .001) as well as children's self-report of anxiety (p = .002), depression (p < .005) and emotional QOL (p < .001). DISCUSSION: These findings highlight the importance of fostering constructive and positive coping for both the children who face chronic illness and their caregivers. (PsycINFO Database Record (c) 2019 APA, all rights reserved).
Assuntos
Adaptação Psicológica , Cuidadores/psicologia , Traumatismos da Medula Espinal/psicologia , Adolescente , Análise de Variância , Criança , Pré-Escolar , Análise por Conglomerados , Efeitos Psicossociais da Doença , Estudos Transversais , Feminino , Humanos , Lactente , Masculino , Relações Pais-Filho , Pais/psicologia , Pediatria/métodos , Traumatismos da Medula Espinal/enfermagem , Estresse Psicológico/complicações , Estresse Psicológico/psicologia , Inquéritos e QuestionáriosRESUMO
AIMS AND OBJECTIVES: To study the effect of quantitative assessment-based nursing intervention on the bowel function and life quality of patients with neurogenic bowel dysfunction after spinal cord injury. BACKGROUND: Neurogenic bowel dysfunction after spinal cord injury was clinically manifested by abdominal distension, intractable constipation, prolonged defecation and faecal incontinence, which seriously affected the normal life of patients. Traditional ways of nursing for these patients focused on basic care, but lacked sufficient recognition of disease severity and individual needs. DESIGN: One hundred and eighty-four patients with neurogenic bowel dysfunction after spinal cord injury were randomly allocated into observation group (n = 92) and control group (n = 92). METHODS: The patients in the control group were given regular nursing, and the patients in the observation group were given quantitative assessment-based nursing intervention. Recovery of bowel function, quality of life and satisfaction were compared between the two groups. RESULTS: Scores for bowel function including bloating, constipation, prolonged defecation, defecation drug dependence and faecal incontinence in the observation group were significantly lower than those in the control group (p < .05). The scores for the quality of life including physical function, general health, social functioning, role-motional, mental health in the observation group were significantly higher than those in the control group (p < .001). Finally, the satisfaction rate in the observation group was 95.56%, which was significantly higher than that in the control group (83.7%) (p < .01). CONCLUSION: We concluded that quantitative assessment-based nursing intervention contributed to recovery of bowel function and improvement of life quality and satisfaction. RELEVANCE TO CLINICAL PRACTICE: Our finding can increase the rational allocation of nurse-patient ratio and provide personalised nursing for severe patients to reduce complications and promote the rehabilitation of the disease. Our findings can also serve as a reference for other countries to develop the nurse practitioner role.
Assuntos
Incontinência Fecal/enfermagem , Intestino Neurogênico/enfermagem , Traumatismos da Medula Espinal/enfermagem , Adulto , Constipação Intestinal/etiologia , Defecação , Incontinência Fecal/etiologia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Intestino Neurogênico/etiologia , Satisfação do Paciente , Qualidade de Vida , Traumatismos da Medula Espinal/complicações , Traumatismos da Medula Espinal/reabilitação , Resultado do TratamentoRESUMO
OBJECTIVE: To investigate associations of objective caregiver burden, subjective caregiver burden and positive aspects of caregiving with self-reported health indicators in caregiving partners of persons with a severe physical disability (spinal cord injury). DESIGN: Cross-sectional, observational. SETTING: Community, Switzerland. PARTICIPANTS: Caregiving partners of persons with spinal cord injury (n=118, response rate 19.7%). OUTCOME MEASURES: General health, role limitations due to physical health, role limitations due to mental health, pain intensity, mental health and vitality were assessed using items from the 36-Item Short Form Health Survey (SF-36). Three items were used to assess the frequency of different types of sleep problems. RESULTS: Subjective caregiver burden was associated to all self-reported health indicators. A high subjective burden was linked to poorer general health (OR 6.5, 95% CI 2.0 to 21.5), more role limitations due to physical health (OR 4.2, 95% CI 1.4 to 12.8), more role limitations due to mental health (OR 3.6, 95 % CI 1.1 to 11.7), higher pain intensity (OR 4.0, 95% CI 1.4 to 11.5), poorer mental health (coefficient -17.9, 95% CI -24.5 to -11.2), lower vitality (coefficient -20.3, 95% CI -28.4 to -12.1), and more frequent sleep problems (OR 5.3, 95% CI 1.6 to 18.4). Partners who indicated positive aspects of caregiving further reported better mental health (coefficient 6.5, 95% CI 0.2 to 12.8). Objective burden was not related to any health indicator. CONCLUSIONS: Subjective burden and lack of positive aspects of caregiving were associated with poorer physical and mental health. Caregiver health may be promoted through the strengthening of psychological and psychosocial resources.
Assuntos
Cuidadores/psicologia , Efeitos Psicossociais da Doença , Pessoas com Deficiência , Qualidade de Vida , Traumatismos da Medula Espinal/enfermagem , Adaptação Psicológica , Adulto , Compreensão , Estudos Transversais , Feminino , Humanos , Modelos Logísticos , Masculino , Saúde Mental , Pessoa de Meia-Idade , Autorrelato , SuíçaRESUMO
BACKGROUND: Clients with a spinal cord injury (SCI) must learn to manage their disabilities and may never be able to resume their previous lifestyle. Therefore, receiving relevant information and support from care practitioners and institutions is essential for clients with long-term SCI. PURPOSE: This study investigated the long-term homecare needs of clients with SCIs. METHODS: A qualitative approach was used in this study. Data were collected from March to May 2013. Four SCI associations were selected using purposive sampling, and four focus group interviews were conducted in Northern, Central, Southern, and Eastern Taiwan. Each focus group was composed of 7-12 participants. In-depth interviews (1.5-2.5 hours) were conducted. A content analysis method was adopted for data analysis. RESULTS: Thirty-eight participants took part in the study. The long-term care needs of clients with SCI require the following dynamic processes for rebuilding their lives: physical care and complication prevention, life planning, social support, discovery of the value of existence, and sexual satisfaction. CONCLUSIONS/IMPLICATIONS FOR PRACTICE: The results reveal the long-term care needs of clients with SCI. Nurses are expected to provide client-centered care, emphasize prevention rather than treatment of complications, initiate life planning at the early stages of a client's rehabilitation, enhance a client's social support, encourage a client's search for companionship and search for the value of existence and a life purpose, and be attentive to the sexual concerns of people with physical disabilities.
Assuntos
Necessidades e Demandas de Serviços de Saúde , Serviços de Assistência Domiciliar , Traumatismos da Medula Espinal/enfermagem , Feminino , Grupos Focais , Humanos , Assistência de Longa Duração , Masculino , Pessoa de Meia-Idade , TaiwanRESUMO
PURPOSE: Spinal cord injury (SCI) is a catastrophe that causes disabilities and permanently changes people's lives. The people have to adapt to the loss of self-care ability and may need long-term rehabilitation. The recovery can be problematic, affecting physiological, psychological, and financial aspects of life. The purpose of this study was to explore the lived experiences of persons with SCI living in Taiwan. METHODS: In 2009, we conducted a qualitative study on 10 participants with SCI recruited from the Association of Spinal Cord Injury Persons in Taiwan. Open-ended interviews were conducted using a guide and tape recorder for subsequent transcription. A phenomenological method was used to collect data by interviews. RESULTS: The core experience of persons with SCI was "finding a way to cope," which was a process from despair to self-acceptance and composed of four categories: (a) shock and unpreparedness for the injury: the catastrophe of the injury itself and the underrecognition of physiological disabilities; (b) panic and fear: denying the injury and yearning for a miracle; (c) abyss of despair: imprinting of life, bearing the agony alone, and chaos of life; and (d) reflection on the meaning of life: adaptation to physical disabilities, self-acceptance, and growth. CONCLUSIONS: Our research was descriptive and focused on the structure of the lived experiences of persons with SCI. Many issues of inequality also revealed physical disabilities, such as difficulty looking professional, resulting in burden of stress and frustration. These results highlight persons with SCI should be classified as case management and integration of social welfare resources to facilitate care for persons with SCI after discharge.
Assuntos
Adaptação Psicológica , Pessoas com Deficiência/psicologia , Traumatismos da Medula Espinal/psicologia , Adulto , Feminino , Humanos , Masculino , Pesquisa Qualitativa , Resiliência Psicológica , Traumatismos da Medula Espinal/enfermagem , Traumatismos da Medula Espinal/reabilitação , TaiwanRESUMO
BACKGROUND: Individuals with spinal cord injury (SCI) often use a wheelchair for mobility due to paralysis. Powered exoskeletal-assisted walking (EAW) provides a modality for walking overground with crutches. Little is known about the EAW velocities and level of assistance (LOA) needed for these devices. OBJECTIVE: The primary aim was to evaluate EAW velocity, number of sessions, and LOA and the relationships among them. The secondary aims were to report on safety and the qualitative analysis of gait and posture during EAW in a hospital setting. METHODS: Twelve individuals with SCI ≥ 1.5 years who were wheelchair users participated. They wore a powered exoskeleton (ReWalk; ReWalk Robotics, Inc., Marlborough, MA) with Lofstrand crutches to complete 10-meter (10 MWT) and 6-minute (6MWT) walk tests. LOA was defined as modified independence (MI), supervision (S), minimal assistance (Min), and moderate assistance (Mod). Best effort EAW velocity, LOA, and observational gait analysis were recorded. RESULTS: Seven of 12 participants ambulated ≥ 0.40 m/s. Five participants walked with MI, 3 with S, 3 with Min, and 1 with Mod. Significant inverse relationships were noted between LOA and EAW velocity for both 6 MWT (Z value = 2.63, Rho = 0.79, P = .0086) and 10 MWT (Z value = 2.62, Rho = 0.79, P = .0088). There were 13 episodes of mild skin abrasions. MI and S groups ambulated with 2-point alternating crutch pattern, whereas the Min and Mod groups favored 3-point crutch gait. CONCLUSIONS: Seven of 12 individuals studied were able to ambulate at EAW velocities ≥ 0.40 m/s, which is a velocity that may be conducive to outdoor activity-related community ambulation. The ReWalk is a safe device for in-hospital ambulation.
Assuntos
Exoesqueleto Energizado , Traumatismos da Medula Espinal/reabilitação , Caminhada , Adolescente , Adulto , Idoso , Desenho de Equipamento , Exoesqueleto Energizado/efeitos adversos , Feminino , Marcha , Humanos , Masculino , Pessoa de Meia-Idade , Paraplegia/reabilitação , Postura , Segurança , Pele/lesões , Traumatismos da Medula Espinal/enfermagem , Adulto JovemRESUMO
Having a partner is a strong factor in adaptation to the new life situation with a spinal cord injury (SCI). Still, more knowledge in detail about the partner's influences according to the experiences of individuals with SCI could contribute to the understanding of the situation after an injury. The aim of this phenomenological-hermeneutic article is to achieve a deeper understanding of nine individuals' experiences the first 2 years after SCI. In rehabilitation after SCI, the partner supported the SCI individual's life spirit by not giving up and by still seeing possibilities in the future. The partner reinforced the SCI individual's commitment to life by sharing experiences; providing love, trust, and hope; and giving priority to the best things in life for the SCI individual. This implied cohabitation providing concrete help and an intimacy that helped to cope with problems and anxieties and allowed SCI individuals the ability to self-realize. This promoted feelings of profound gratitude but also dependency. Thus, the SCI individual benefitted from the partner's support mentally and physically, which enabled a life that would not otherwise be possible.
Assuntos
Cuidadores/psicologia , Hermenêutica , Assistência Domiciliar/psicologia , Traumatismos da Medula Espinal/enfermagem , Traumatismos da Medula Espinal/psicologia , Adaptação Psicológica , Adulto , Idoso , Efeitos Psicossociais da Doença , Feminino , Seguimentos , Humanos , Relações Interpessoais , Masculino , Casamento/psicologia , Pessoa de Meia-Idade , Motivação , Otimismo , Apoio Social , Traumatismos da Medula Espinal/reabilitaçãoRESUMO
It was aimed to measure the quality of life of adults with spinal cord injury and identify domains that affect the quality of life of these individuals. Epidemiological study, conducted in 2007-2008 in Health Basic Units of Campina Grande/PB. There were 47 participants. It was used a questionnaire composed by: sociodemographic variables, etiology of injury; validated instrument to measure quality of life containing four domains: Physical Health, Environmental, Social Relationships and Psychological with their respective facets. The data collected were processed using descriptive and statistical analysis. The domains with lowest scores were: Environmental (55.20 points), Physical health (58.59 points). The facets that compromise the domains: mobility (55.3%), work capacity (55.3%), Financial resources (80.9%), Opportunities for acquiring new information and skills (51%), Participation in and opportunities for recreation/leisure activities (68.1%) and Sexual activity (34%). Results express the dissatisfaction of participants with quality of life. Nurses should contribute to rehabilitation and social reinsertion of those people, respecting their limitations, emphasizing the remaining potential and capacity for self-care.
Assuntos
Qualidade de Vida , Traumatismos da Medula Espinal/psicologia , Adulto , Idoso , Brasil/epidemiologia , Integração Comunitária , Emoções , Feminino , Gastos em Saúde , Humanos , Relações Interpessoais , Masculino , Pessoa de Meia-Idade , Limitação da Mobilidade , Satisfação do Paciente , Retorno ao Trabalho , Autorrelato , Disfunções Sexuais Fisiológicas/etiologia , Disfunções Sexuais Fisiológicas/psicologia , Apoio Social , Traumatismos da Medula Espinal/complicações , Traumatismos da Medula Espinal/economia , Traumatismos da Medula Espinal/epidemiologia , Traumatismos da Medula Espinal/enfermagem , Traumatismos da Medula Espinal/reabilitação , Inquéritos e Questionários , Adulto JovemRESUMO
Objetivou-se medir a qualidade de vida de adultos com lesão medular e identificar os domínios que prejudicam a qualidade de vida desses sujeitos. Estudo epidemiológico, realizado no período 2007-2008, em Unidades Básicas de Saúde de Campina Grande/PB. Participaram 47 sujeitos. Utilizou-se questionário contendo variáveis sociodemográficas, etiologia da lesão; instrumento validado para medir qualidade de vida, contendo quatro domínios: Físico, Ambiental, Relações Sociais e Psicológico, com respectivas facetas. Os dados coletados foram processados por meio de análise descritiva e estatística. Domínios com menores escores: Ambiental (55,20 pontos); Físico (58,59 pontos). Facetas que mais comprometem os domínios: locomoção (55,3%), trabalho (55,3%), dinheiro (80,9%), informações (51%), lazer (68,1%); vida sexual (34%). Os resultados expressam a insatisfação dos investigados com a qualidade de vida. O enfermeiro deve contribuir para a reabilitação e reinclusão social da pessoa com lesão medular, respeitando suas limitações, enfatizando o potencial remanescente e a capacidade para autocuidado.
Se objetivó medir la calidad de vida de adultos con lesión medular e identificar los dominios que afectan la calidad de vida de estos sujetos. Estudio epidemiológico realizado entre 2007-2008 en Unidades Básicas de Salud, Campina Grande/PB. Participaron 47 sujetos. Se utilizó cuestionario conteniendo variables sociodemográficas, etiología de la lesión; instrumento validado para medir la calidad de vida conteniendo cuatro dominios: Físico, Medio Ambiental, Relaciones Sociales, Psicológicas, con respectivas facetas. Los datos recolectados fueron procesados por medio de análisis descriptivo y estadístico. Los dominios con puntuaciones más bajas: Medio Ambiente (55,20 puntos); Físico (58,59 puntos). Facetas que más comprometen los dominios: locomoción (55,3%), trabajo (55,3%), dinero (80,9%), información (51%), recreación (68,1%); vida sexual (34%). Los resultados expresan insatisfacción de los investigados con la calidad de vida. Enfermeros deben contribuir con rehabilitación, reinserción social de estas personas respetando sus limitaciones, haciendo énfasis al potencial restante y capacidad por el mismo cuidado.
It was aimed to measure the quality of life of adults with spinal cord injury and identify domains that affect the quality of life of these individuals. Epidemiological study, conducted in 2007-2008 in Health Basic Units of Campina Grande/PB. There were 47 participants. It was used a questionnaire composed by: sociodemographic variables, etiology of injury; validated instrument to measure quality of life containing four domains: Physical Health, Environmental, Social Relationships and Psychological with their respective facets. The data collected were processed using descriptive and statistical analysis. The domains with lowest scores were: Environmental (55.20 points), Physical health (58.59 points). The facets that compromise the domains: mobility (55.3%), work capacity (55.3%), Financial resources (80.9%), Opportunities for acquiring new information and skills (51%), Participation in and opportunities for recreation/leisure activities (68.1%) and Sexual activity (34%). Results express the dissatisfaction of participants with quality of life. Nurses should contribute to rehabilitation and social reinsertion of those people, respecting their limitations, emphasizing the remaining potential and capacity for self-care.
Assuntos
Adulto , Idoso , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Adulto Jovem , Qualidade de Vida , Traumatismos da Medula Espinal/psicologia , Brasil/epidemiologia , Integração Comunitária , Emoções , Gastos em Saúde , Relações Interpessoais , Limitação da Mobilidade , Satisfação do Paciente , Inquéritos e Questionários , Retorno ao Trabalho , Autorrelato , Disfunções Sexuais Fisiológicas/etiologia , Disfunções Sexuais Fisiológicas/psicologia , Apoio Social , Traumatismos da Medula Espinal/complicações , Traumatismos da Medula Espinal/economia , Traumatismos da Medula Espinal/epidemiologia , Traumatismos da Medula Espinal/enfermagem , Traumatismos da Medula Espinal/reabilitaçãoAssuntos
Traumatismos em Atletas/enfermagem , Doença Crônica/enfermagem , Cuidados Críticos , Quadriplegia/enfermagem , Traumatismos da Medula Espinal/enfermagem , Fatores Etários , Idoso , Traumatismos em Atletas/economia , Traumatismos em Atletas/mortalidade , Doença Crônica/economia , Doença Crônica/mortalidade , Análise Custo-Benefício , Cuidados Críticos/economia , Feminino , Alocação de Recursos para a Atenção à Saúde/economia , Humanos , Expectativa de Vida , Cuidados para Prolongar a Vida/economia , Masculino , Pessoa de Meia-Idade , Programas Nacionais de Saúde/economia , Quadriplegia/economia , Quadriplegia/mortalidade , Traumatismos da Medula Espinal/economia , Traumatismos da Medula Espinal/mortalidade , Taxa de Sobrevida , SuíçaRESUMO
STUDY DESIGN: Survey. OBJECTIVES: Describe and compare the organisation and delivery of rehabilitation services and systems of care for patients with spinal cord injury (SCI). SETTING: International. Nine spinal rehabilitation units that manage traumatic SCI and non-traumatic SCI (NTSCI) patients. METHODS: Survey based on clinical expertise and literature review. Completed between November 2010 and April 2011. RESULTS: All units reported public/government funding. Additional funding sources included compensation schemes, private insurance and self funding. Six units had formal attachment to an acute SCI unit. Five units (Italy, Ireland, India, Pakistan and Switzerland) provided a national service; two units (the Netherlands and USA) provided regional and two units (Australia and Canada) provided state/provincial services. The median number of SCI rehabilitation beds was 23 (interquartile range=16-30). All units admitted both traumatic SCI and NTSCI patients. The median proportion of patients admitted who had traumatic SCI was 45% (IQR 20-48%) and 40% (IQR 30-42%) had NTSCI. The rehabilitation team in all centres determined patient readiness for discharge. There was great variability between units in the availability of SCI speciality services, ancillary services and staff/patient ratios. CONCLUSION: There was a wide range of differences in the organisation, systems of care and services available for patients with SCI in rehabilitation units in different countries. Understanding these differences is important when comparing patient outcomes from different settings. A standardised collection of these system variables should be considered as part of future studies and could be included in the ISCoS data set project.
Assuntos
Centros de Reabilitação/organização & administração , Traumatismos da Medula Espinal/reabilitação , Benchmarking , Atenção à Saúde/estatística & dados numéricos , Grupos Diagnósticos Relacionados , Pesquisas sobre Atenção à Saúde , Hospitais , Humanos , Seguro Saúde/estatística & dados numéricos , Programas Nacionais de Saúde/estatística & dados numéricos , Enfermeiras e Enfermeiros/estatística & dados numéricos , Assistência ao Paciente/estatística & dados numéricos , Fisioterapeutas/estatística & dados numéricos , Melhoria de Qualidade , Reabilitação Vocacional/estatística & dados numéricos , Traumatismos da Medula Espinal/epidemiologia , Traumatismos da Medula Espinal/enfermagem , Resultado do Tratamento , Urodinâmica , Recursos HumanosRESUMO
STUDY DESIGN: Qualitative study involving individual semistructured in-depth interviews. OBJECTIVES: To evaluate peer support provided in general hospitals for people with spinal cord injuries (SCIs). SETTING: The South West of the United Kingdom. METHODS: Fourteen in-depth qualitative interviews were conducted with people with SCI and their close relatives, and with health-care professionals involved in their care. Transcribed interviews were coded inductively and analysed thematically. Themes were patterned around positive and less positive aspects of the experience of the peer support service. RESULTS: The psychological and emotional support provided by the peer support officer was highly valued by the participants. The peer support officer's direct experience of living with a spinal injury gave credibility to the practical advice, information and signposting provided; as well as to the empathy demonstrated by them during their involvement with people with SCI and their families. Health-care professionals appreciated their unique perspective and considered them as a valuable member of the multidisciplinary team. CONCLUSION: Peer support is valued by the people affected by SCI. There is a need to further investigate the key aspects of the service, including the optimal timing for introducing this peer support as well as more formal training of mentors.
Assuntos
Avaliação de Resultados em Cuidados de Saúde , Grupo Associado , Seguridade Social , Traumatismos da Medula Espinal/enfermagem , Traumatismos da Medula Espinal/psicologia , Adulto , Humanos , Entrevista Psicológica , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa , Autoeficácia , Reino UnidoRESUMO
A sectional study that had as its objectives to assess caregiver burden of for caregivers of individuals with Traumatic Spinal Cord Injury (TSCI) and its association with sociodemographic variables (age and sex), health status (self-reported illnesses) and caregiver characteristics (care time in years and daily hours of care). Data were collected by consultation of patient files and individual interviews at home using the instrument, Caregiver Burden Scale (CBScale). The results showed that most burden occurred in the domains: environment, disappointment and general strain. Presenting health problem (for all domains of the CBScale) and spending more hours per day in care (in the domain disappointment) represented the variables associated with burden. Studies of a more confirmatory nature than exploratory between the variables studied can be used to measure the burden obtained in this population of caregivers of individuals with TSCI.
Assuntos
Cuidadores , Efeitos Psicossociais da Doença , Traumatismos da Medula Espinal , Adaptação Psicológica , Adulto , Estudos Transversais , Feminino , Humanos , Masculino , Traumatismos da Medula Espinal/enfermagemRESUMO
OBJECTIVE: to analyze the impact and burden of care on the Health-Related Quality of Life (HRQOL) of caregivers of individuals with a spinal cord injury (SCI). METHOD: cross-sectional observational study carried out by reviewing medical records and applying questionnaires. The scale Short Form 36 (SF-36) was used to assess HRQOL and the Caregiver Burden Scale (CBScale) for care burden. Results were analyzed quantitatively. Most patients with SCIs were male, aged 35.4 years old on average, with a predominance of thoracic injuries followed by cervical injuries. Most caregivers were female aged 44.8 years old on average. RESULTS: tetraplegia and secondary complications stand out among the clinical characteristics that contributed to greater care burden and worse HRQOL. Association between care burden with HRQOL revealed that the greater the burden the worse the HRQOL. CONCLUSION: Preventing care burden through strategies that prepare patients for hospital discharge, integrating the support network, and enabling access to health care services are interventions that could minimize the effects arising from care burden and contribute to improving HRQOL.
Assuntos
Cuidadores , Efeitos Psicossociais da Doença , Qualidade de Vida , Traumatismos da Medula Espinal , Adulto , Estudos Transversais , Feminino , Humanos , Masculino , Traumatismos da Medula Espinal/enfermagem , Adulto JovemRESUMO
OBJECTIVE: to analyze the impact and burden of care on the Health-Related Quality of Life (HRQOL) of caregivers of individuals with a spinal cord injury (SCI). METHOD: cross-sectional observational study carried out by reviewing medical records and applying questionnaires. The scale Short Form 36 (SF-36) was used to assess HRQOL and the Caregiver Burden Scale (CBScale) for care burden. Results were analyzed quantitatively. Most patients with SCIs were male, aged 35.4 years old on average, with a predominance of thoracic injuries followed by cervical injuries. Most caregivers were female aged 44.8 years old on average. RESULTS: tetraplegia and secondary complications stand out among the clinical characteristics that contributed to greater care burden and worse HRQOL. Association between care burden with HRQOL revealed that the greater the burden the worse the HRQOL. CONCLUSION: Preventing care burden through strategies that prepare patients for hospital discharge, integrating the support network, and enabling access to health care services are interventions that could minimize the effects arising from care burden and contribute to improving HRQOL.
OBJETIVO: analisar a sobrecarga do cuidado e impacto na Qualidade de Vida Relacionada à Saúde (QVRS) dos cuidadores de indivíduos com lesão medular traumática (LMT). MÉTODO: este é um estudo observacional, de corte transversal, realizado por revisão de prontuários e aplicação de questionários. Foram utilizadas as escalas Short Form 36 (SF-36) para avaliar a QVRS, Caregiver Burden Scale (CBScale) para sobrecarga do cuidado, e os resultados foram analisados quantitativamente. A maioria dos indivíduos com LMT era do sexo masculino, com média de idade de 35,4 anos, com predomínio de lesão torácica, seguida de lesão cervical. A maioria dos cuidadores era do sexo feminino, com média de idade de 44,8 anos. RESULTADO: das características clínicas que contribuíram para maior sobrecarga do cuidado e pior QVRS destacaram-se indivíduos com tetraplegia e com complicações secundárias. Ao associar a sobrecarga do cuidado com a QVRS, obteve-se que quanto maior a sobrecarga pior a QVRS. CONCLUSÃO: prevenir a sobrecarga do cuidado por meio de estratégias de preparo para alta, integração da rede de apoio e acesso a serviços de saúde, poderia minimizar os efeitos da sobrecarga do cuidado e contribuir para melhor QVRS.
OBJETIVO: análisis del sobrecarga del cuidado e impacto en la Calidad de Vida Relacionada a la Salud (CVRS), de los cuidadores de individuos con lesión medular traumática (LME). MÉTODO: estudio observacional, de corte transversal, realizado por revisión de prontuarios y aplicación de cuestionarios. Fueron utilizadas las escalas de Short Form 36 (SF-36) para evaluar la CVRS, Caregiver Burden Scale (CBScale) para Sobrecarga del cuidado y los resultados fueron analizados cuantitativamente. La mayoría de los individuos con LM era del sexo masculino, con media de edad de 35,4 años, con predominio de lesión torácica seguida de lesión cervical. La mayoría de los cuidadores era del sexo femenino, con media de edad de 44,8 años. RESULTADO: de las características clínicas que aportaron para mayor sobrecarga del cuidado y peor CVRS se destacaron individuos cuadripléjicos y con complicaciones secundarias. Al asociar la sobrecarga del cuidado con la CVRS se logró que cuanto mayor la sobrecarga peor a CVRS. CONCLUSIÓN: precaver la sobrecarga del cuidado por medio de estrategias de adorno para alta, integración de la red de apoyo y acceso a servicios de salud, podrían minimizar los efectos de la sobrecarga del cuidado y aportar para una mejor CVRS.
Assuntos
Adulto , Feminino , Humanos , Masculino , Adulto Jovem , Cuidadores , Efeitos Psicossociais da Doença , Qualidade de Vida , Traumatismos da Medula Espinal , Estudos Transversais , Traumatismos da Medula Espinal/enfermagemRESUMO
AIM: To assess for differences in knowledge of pressure ulcer (PU) prevention and management among nurses working in two metropolitan spinal cord injury (SCI) units, and between nurses and rehabilitation registrars (doctors). BACKGROUND: There is anecdotal evidence of wide variation in PU management. An understanding of current knowledge is fundamental to evidence-based practice implementation. METHODS: This was a prospective survey, using a multiple choice question format developed with nurse wound specialists. A total of 10 questions assessed PU prevention and 10 assessed management. It was distributed to nurses working at the spinal units and rehabilitation registrars. The results from the groups were analysed for similarities and differences using one- and two-way analysis of variance (ANOVA) tests and tests for significance of specific linear combinations of group means. RESULTS: The response rate was 79% (19/24) and 71% (20/ 28) from the two SCI units, and 46% (13/28) from doctors. Doctors performed better than nurses on prevention questions (P<0.005) but worse on management (P<0.05). There was a significant difference in management knowledge (P<0.001) between nurses working in the two units but not in prevention knowledge (P<0.5) and interestingly years of experience did not correlate with performance (P<0.2 for prevention and P<0.5 for management questions). CONCLUSIONS: Rehabilitation registrars score better in prevention questions, but poorer in management questions, which reflects academic rather than experiential knowledge. There are also differences in management knowledge among nurses, based on work area rather than years of experience. Although knowledge does not necessarily reflect practice, this calls for better standardisation and implementation of wound management pathways.
Assuntos
Recursos Humanos de Enfermagem/educação , Úlcera por Pressão/enfermagem , Traumatismos da Medula Espinal/complicações , Gerenciamento Clínico , Educação Médica , Educação em Enfermagem , Feminino , Humanos , Masculino , Enfermeiras e Enfermeiros , Médicos , Úlcera por Pressão/etiologia , Úlcera por Pressão/prevenção & controle , Estudos Prospectivos , Especialização , Traumatismos da Medula Espinal/enfermagem , Inquéritos e QuestionáriosRESUMO
The purpose of this study was to compare the costs of providing specialty wound care to spinal cord injury/disorder (SCI/D) veterans by teleconsultation and traditional care. A retrospective design was used to conduct this descriptive, correlational study. A convenience sample of 76 SCI/D veterans (2 women, 74 men) met inclusion criteria from a possible 123 subjects. Variables were compared between groups using nonparametric methods (Wilcoxon rank sums and chi-square). There was no significant difference in inpatient admissions or inpatient bed days of care between the two groups. The teleconsultation group had more outpatient encounters (medians 12 vs. 4, p = .007; Wilcoxon statistic = 412.5) and longer inpatient stays (medians 81 vs. 19 days/admission, p = .05; Wilcoxon statistic = 227.0) compared to the traditional care group. There was no significant difference in inpatient cost between the two groups; however, the teleconsultation group had a significantly higher median cost per outpatient encounter ($440 vs. $141, p <.0001; Wilcoxon statistic = 469.0). Although this study only looked at costs directly associated with wound management, continued research exploring the use of teleconsultation in other areas of SCI/D specialty is needed to enhance its application.
Assuntos
Enfermagem em Reabilitação/métodos , Traumatismos da Medula Espinal/enfermagem , Traumatismos da Medula Espinal/reabilitação , Telemedicina/métodos , Veteranos , Idoso , Assistência Ambulatorial/economia , Assistência Ambulatorial/métodos , Feminino , Custos de Cuidados de Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Avaliação de Programas e Projetos de Saúde , Enfermagem em Reabilitação/economia , Estudos Retrospectivos , Traumatismos da Medula Espinal/economia , Telemedicina/economiaRESUMO
UNLABELLED: STUDYDESIGN: This study was designed as a cross-sectional one. A set of structured questionnaires was administered. OBJECTIVES: The purpose of the study was to explore the psychological response of the caregivers of people with spinal cord injury (SCI) and to assess the burden of caregiving for SCI persons living in the community in Fiji. SETTING: Fiji, South Pacific. METHODS: A total of 30 primary caregivers of persons with SCI. The Index of Psychological Well-Being (IPWB) was used to assess the psychological impact of care giving, and Caregiver Burden Inventory (CBI) was used to evaluate the burden associated with caregiving for persons with SCI. Barthel Index (BI) scale was used to measure the functional abilities of the care recipients. RESULTS: The majority of the participants (n=20) were women, who had an ethnic Fijian background (n=18) and were married (n=18), and were spouses (n=13). Mean BI of the persons with SCI was 7.1 (s.d.=5.23) on a 0-20 scale, with 90% (n=27) suffering from moderate-to-very severe disability (BI<15). The mean duration of caregiving was 6.1 years (s.d.=4.23). On average, the caregivers provided 6.1 h (s.d.=2.19) of caregiving per day. The experiences of caregiving adversely affected the caregiver psychological well-being. Participants demonstrated high levels of time-dependent and development burden. Caregiving was significantly related to the number of hours spent providing care (r (s)=0.35, P<0.05), and the older caregiver age (r (s)=0.46, P<0.01). CONCLUSION: Being a primary caregiver of a SCI person contributes to caregiver burden and psychological distress. The findings indicate that the contributions of these people should be recognized and interventions should be tailored not only toward the needs of the care recipients but also to the needs of the caregivers.