Search results

Informal caregivers’ views on the division of responsibilities between themselves and professionals

This scoping review focuses on the views of informal caregivers regarding the division of care responsibilities between citizens, governments and professionals and the question of to what extent professionals take these views into account during collaboration with them. In Europe, the normative discourse on informal care has changed. Retreating governments and decreasing residential care increase the need to enhance the collaborationbetween informal caregivers and professionals. Professionals are assumedto adequately address the needs and wishes of informal caregivers, but little is known about informal caregivers’ views on the division of care responsibilities. We performed a scoping review and searched for relevant studies published between 2000 and September 1, 2016 in seven databases. Thirteen papers were included, all published in Western countries. Most included papers described research with a qualitative research design. Based on the opinion of informal caregivers, we conclude that professionals do not seem to explicitly take into account the views of informal caregivers about the division of responsibilities during their collaboration with them. Roles of the informal caregivers and professionals are not always discussed and the division of responsibilities sometimes seems unclear. Acknowledging the role and expertise of informalcaregivers seems to facilitate good collaboration, as well as attitudes such as professionals being open and honest, proactive and compassionate. Inflexible structures and services hinder good collaboration. Asking informal caregivers what their opinion is about the division of responsibilities could improve clarity about the care that is given by both informal caregivers and professionals and could improve their collaboration. Educational programs in social work, health and allied health professions should put more emphasis on this specific characteristic of collaboration.

Supporting and hindering environments for participation of adolescents diagnosed with autism spectrum disorder

The influence of a person’s environment and its modifying potential on participation is well recognized for most childhood disabilities, but scarcely studied for adolescents with autism spectrum disorder (ASD). A scoping review was conducted, the aim of which was to map the existing literature about supporting and hindering environments for the participation of adolescents with ASD. Sources of scientific evidence were searched for in four databases. Inclusion criteria were the perspectives of adolescents between 12 and 21, families, peers, or significant others; ecologic validity; and a clear connection between environment and participation. The publication dates ranged from 2001 to 2014 and partly up to 2018. The International Classification of Functioning, Disability and Health (ICF) served as the guiding framework for inclusion/exclusion during the selection process. Thematic analysis was performed by five independent reviewers. Results were additionally validated by stakeholders. This scoping review identified 5528 articles, and finally included 31 studies. Two main themes were found: “providing security” indicates how the environment, and specifically the parental, physical, and informational environments, have a securing or intimidating effect. The second theme, “helping to connect”, indicates which environments support or hinder social relationships or social activities, and hence participation. An additional third main theme, “tension in participation”, relates to ambiguities that seem essential to understand participation or isolation of adolescents with ASD. Results show that participation is a value-laden concept. This research widens the field of dealing with adolescents with ASD, as it directs attention towards the responsibility of the environment regarding participation.

The quality of geriatric rehabilitation from the patients’ perspective: a scoping review

Backgroundthe efficacy and outcomes of geriatric rehabilitation (GR) have previously been investigated. However, a systematic synthesis of the aspects that are important to patients regarding the quality of GR does not exist.Objectivethe aim of this scoping review was to systematically synthesise the patients’ perspective on the quality of GR.Methodswe followed the Scoping Review framework and gathered literature including a qualitative study design from multiple databases. The inclusion criteria were: a qualitative study design; a geriatric population; that patients had participated in a geriatric rehabilitation programme and that geriatric rehabilitation was assessed by the patient. The results sections of the included studies were analysed using a thematic analysis approach.Resultstwenty articles were included in this review. The main themes identified were: (i) the need for information about the rehabilitation process, (ii) the need for telling one’s story, (iii) the need for support (physical, psychological, social and how to cope with limitations), (iv) the need for shared decision-making and autonomy, (v) the need for a stimulating rehabilitation environment and (vi) the need for rehabilitation at home.Conclusionin this study, we identified the aspects that determine the quality of rehabilitation from the patient’s perspective, which may lead to a more holistic perspective on the quality of GR.

Healthcare practices and interventions in Europe towards families of older patients with cardiovascular disease

Background: In Europe, cardiovascular disease is one of the predominant causes of mortality and morbidity among older people over 65 years. The occurrence of cardiovascular disease can have a negative impact on the quality of life of older patients and their families and family health overall. Assuming that illness is a family affair shaped by culture and health care systems, we explored European health care practices and interventions toward families of older patients with cardiovascular disease and heart failure.Aims: This paper aimed to determine the extent, range, and variety of practices and interventions in Europe directed to families of older patients and to identify knowledge gaps.Materials & Methods: A scoping review was conducted including studies published in Medline, CINHAL, or Cochrane library between 2009 and mid-2020.Results: A total of 22 articles from 17 studies were included, showing diverse practices and interventions. The interventions targeted the family as a unit (six studies), dyads (five studies), patients alone, but assessed family members’ reactions (five studies) or the family member primarily, but assessed the reaction of the patient (one study). Target outcomes were family caregiver burden; health-related QoL; and perceived control in patients; and family functioning and changes in health behavior or knowledge in both, family members and patients. Most studies did not include an integral view of the family as the unit of care but rather had a disease-centered approach.Discussion: This scoping review provides insight into a variety of healthcarepractices towards families of older patients with cardiovascular disease in Europe. Clarifying underlying assumptions to involve families is needed. More studies with family-focused approaches as integral models could lead to practices that improve families’ well-being. Exploring integral models for their acceptance in health care and family systems appears pertinent to develop European policy to support and add to family health.

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Definitions, key themes and aspects of ‘ageing in place’

The purpose is to give an overview of the extent, range and nature of existing definitions of the concept ‘ageing in place’. Providing such an overview may be helpful, for policy makers, researchers, communities and service providers, to make sense of the versatility and uses of the concept, and allow the improvement and increase the success of efforts to contribute to the quality of life of older people. The overview was created using Arksey and O’Malley’s scoping review methodology. Out of 3,692 retrieved articles, 34 met the inclusion criteria. These studies concentrate on the following five key themes concerning ‘ageing in place’: ‘ageing in place’ in relation to place, to social networks, to support, to technology and to personal characteristics. Each of these key themes consists of other aspects, like physical place and attachment to place for the keyword place. This study concludes that the concept ‘ageing in place’ is broad and can be viewed from different (i.e. five) key themes. A more thorough understanding of ‘ageing in place’ provides knowledge about the existing key themes and aspects. These findings might provide practical support for professionals and governments when they develop their policies about ‘ageing in place’ integrally and to develop fit policies.