Reflections of patients and therapists on a multidisciplinary rehabilitation programme for persons with brachial plexus injuries

Contains fulltext : 203605.pdf (publisher's version ) (Open Access

Delineating the concept of self-management in chronic conditions: a concept analysis.

ObjectivesSelf-management is a concept frequently used within healthcare but lacks consensus. It is the aim of this study to clarify the concept.DesignConcept analysis according to Walker and Avant, comprises eight steps: select concept, determine purpose, identify uses, determine defining attributes, identify model case, identify additional cases, identify antecedents and consequences and define empirical referents. Sources used: PubMed, Scopus and Web of Science.resultsTen attributes delineating the concept have been identified and organised into three groups. Group (a): person-oriented attributes: the person must (1) actively take part in the care process, (2) take responsibility for the care process and (3) have a positive way of coping with adversity. Group (b): person-environment-oriented attributes: (4) the person must be informed about the condition, disease and treatment and self-management, (5) should be individualised, which entails expressing needs, values and priorities, (6) requires openness to ensure a reciprocal partnership with healthcare providers and (7) demands openness to social support. Finally, Group (c): summarising attributes: self-management (8) is a lifetime task, (9) assumes personal skills and (10) encompasses the medical, role and emotional management.ConclusionsThe findings of this study recognise the complexity of the concept, but also show the need for further investigation to make the concept more measurable. Clarity about the concept will enhance understanding and facilitate implementation in self-management programmes for chronic conditions

Living with myotonic dystrophy; what can be learned from couples? a qualitative study

Contains fulltext : 96062.pdf (publisher's version ) (Open Access)BACKGROUND: Myotonic dystrophy type 1 (MD1) is one of the most prevalent neuromuscular diseases, yet very little is known about how MD1 affects the lives of couples and how they themselves manage individually and together. To better match health care to their problems, concerns and needs, it is important to understand their perspective of living with this hereditary, systemic disease. METHODS: A qualitative study was carried out with a purposive sample of five middle-aged couples, including three men and two women with MD1 and their partners. Fifteen in-depth interviews with persons with MD1, with their partners and with both of them as a couple took place in the homes of the couples in two cities and three villages in the Netherlands in 2009. Results : People with MD1 associate this progressive, neuromuscular condition with decreasing abilities, describing physical, cognitive and psychosocial barriers to everyday activities and social participation. Partners highlighted the increasing care giving burden, giving directions and using reminders to compensate for the lack of initiative and avoidant behaviour due to MD1. Couples portrayed the dilemmas and frustrations of renegotiating roles and responsibilities; stressing the importance of achieving a balance between individual and shared activities. All participants experienced a lack of understanding from relatives, friends, and society, including health care, leading to withdrawal and isolation. Health care was perceived as fragmentary, with specialists focusing on specific aspects of the disease rather than seeking to understand the implications of the systemic disorder on daily life. CONCLUSIONS: Learning from these couples has resulted in recommendations that challenge the tendency to treat MD1 as a condition with primarily physical impairments. It is vital to listen to couples, to elicit the impact of MD1, as a multisystem disorder that influences every aspect of their life together. Couple management, supporting the self-management skills of both partners is proposed as a way of reducing the mismatch between health services and health needs

Stroke survivors' experiences of rehabilitation:a systematic review of qualitative studies

Introduction: The aim was to obtain the best available knowledge on stroke survivors' experiences of rehabilitation. The increase in demands for accountability in health care and acknowledgement of the importance of client participation in health decisions calls for systematic ways of integrating this perspective. Methods and materials: A systematic review of qualitative studies was performed. A literature search in MEDLINE, CINAHL, PsycINFO, and EMBASE was conducted. Suitability for inclusion was based on selected criteria: published qualitative studies written in English from 1990 to 2008 on stroke survivors' experiences of rehabilitation in a clinical setting. Data analysis entailed extracting, editing, grouping, and abstracting findings. Results: Twelve studies were included. One theme, "Power and Empowerment" and six subcategories were identified: 1) Coping with a new situation, 2) Informational needs, 3) Physical and non-physical needs, 4) Being personally valued and treated with respect, 5) Collaboration with health care professionals and 6) Assuming responsibility and seizing control. Discussion: The synthesis showed that stroke survivors' experiences of rehabilitation reflected individual and relational aspects of power and empowerment. The capacity to assume power and empowerment was a dynamic rather than a progressive issue, and enabling empowerment was a matter of weighing contrasting issues against each other, e. g. the right to decide versus the right not to decide

Exploring the collaboration between formal and informal care from the professional perspective: a thematic analysis

In Dutch policy and at the societal level, informal caregivers are ideally seen as essential team members when creating, together with professionals, co-ordinated support plans for the persons for whom they care. However, collaboration between professionals and informal caregivers is not always effective. This can be explained by the observation that caregivers and professionals have diverse backgrounds and frames of reference regarding providing care. This thematic synthesis sought to examine and understand how professionals experience collaboration with informal caregivers to strengthen the care triad. PubMed, Medline, PsycINFO, Embase, Cochrane/Central and CINAHL were searched systematically until May 2015, using specific key words and inclusion criteria. Twenty-two articles were used for thematic synthesis. Seven themes revealed different reflections by professionals illustrating the complex, multi-faceted and dynamic interface of professionals and informal care. Working in collaboration with informal caregivers requires professionals to adopt a different way of functioning. Specific attention should be paid to the informal caregiver, where the focus now is mainly on the client for whom they care. This is difficult to attain due to different restrictions experienced by professionals on policy and individual levels. Specific guidelines and training for the professionals are necessary in the light of the current policy changes in the Netherlands, where an increased emphasis is placed on informal care structures