Artikel van Judith Huis in het Veld, docent onderzoeker van de Hogeschool Inholland verschenen in Research in Gerontological Nursing ABSTRACT The current article discusses how and by whom family caregivers want to be supported in selfmanagement when managing changes in behavior and mood of relatives with dementia and whether family caregivers consider eHealth a useful tool for self-management support. Four asynchronous online focus groups were held with 32 family caregivers of individuals with dementia. Transcripts of the online focus groups were analyzed using qualitative thematic analysis. Family caregivers need support from professionals or peers in the form of (a) information about dementia and its symptoms, (b) tips and advice on managing changes in behavior and mood, (c) opportunities to discuss experiences and feelings, and (d) appreciation and acknowledgement of caregiving. The opinions of family caregivers about self-management support through eHealth were also reported. Findings suggest a personal approach is essential to self-management support for family caregivers managing changes in behavior and mood of relatives with dementia. In addition, self-management support can be provided to some extent through eHealth, but this medium cannot replace personal contacts entirely.
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Parental involvement is a crucial force in children’s development, learning and success at school and in life [1]. Participation, defined by the World Health Organization as ‘a person’s involvement in life situations’ [2] for children means involvement in everyday activities, such as recreational, leisure, school and household activities [3]. Several authors use the term social participation emphasising the importance of engagement in social situations [4, 5]. Children’s participation in daily life is vital for healthy development, social and physical competencies, social-emotional well-being, sense of meaning and purpose in life [6]. Through participation in different social contexts, children gather the knowledge and skills needed to interact, play, work, and live with other people [4, 7, 8]. Unfortunately, research shows that children with a physical disability are at risk of lower participation in everyday activities [9]; they participate less frequently in almost all activities compared with children without physical disabilities [10, 11], have fewer friends and often feel socially isolated [12-14]. Parents, in particular, positively influence the participation of their children with a physical disability at school, at home and in the community [15]. They undertake many actions to improve their child’s participation in daily life [15, 16]. However, little information is available about what parents of children with a physical disability do to enable their child’s participation, what they come across and what kind of needs they have. The overall aim of this thesis was to investigate parents’ actions, challenges, and needs while enhancing the participation of their school-aged child with a physical disability. In order to achieve this aim, two steps have been made. In the first step, the literature has been examined to explore the topic of this thesis (actions, challenges and needs) and to clarify definitions for the concepts of participation and social participation. Second, for the purposes of giving breadth and depth of understanding of the topic of this thesis a mixed methods approach using three different empirical research methods [17-19], was applied to gather information from parents regarding their actions, challenges and needs.
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The research presented examines how pervasive technology can support intra-family communication, supporting existing practices and complimenting them by addressing communication needs currently unmet by current communication media like mobile phones, social networking systems, and so forth. Specifically the investigation focused on busy families, understood here to be families with two working parents and at least one child sharing the same roof. The class of technologies the authors consider are awareness systems, defined as communication systems that support individuals to maintain, with low effort, a peripheral awareness of each other's activities and whereabouts. This research combined a variety of research methods including interviews, web surveys, experience sampling, and field testing of functional prototypes of mobile awareness systems. It also involved the development of several applications, which were either seen as research tools in support of the methods applied or as prototypes of awareness systems that embody some of the envisioned characteristics of this emerging class of technologies. The contribution of this research is along two main dimensions. First in identifying intra-family communication needs that drive the adoption of awareness systems and second in providing directions for the design of such systems.
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Families with a child with profound intellectual and multiple disabilities (PIMD) have to manage the child’s pervasive support needs. To ensure that families are able to manage these needs, they should be properly supported. However, knowledge about the specific support needs of these families is sparse and fragmented, nor is it known if and which needs are age-specific. To learn more about these families’ support needs, 20 parents of a child with PIMD aged 3–26 years were interviewed about their family’s support needs through interviews with open-ended questions. Interview transcripts were qualitatively analysed to identify support needs in five domains (child with PIMD, family, environment, services, and system). Various (age-specific) support needs were identified. The findings of this study can help health professionals and policy makers to improve the support of families with a child with PIMD by attuning the support to these families’ specific needs.
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Family nursing conversations (FNC) are planned conversations between a care recipient, one or more family members, and a nurse. FNC, in the Netherlands, are intended to strengthen family functioning and family communication, improve collaboration between family and professional caregivers, and prevent overburden of family caregivers. This study aims to explore families’ experiences with FNC, and their perspectives on the benefits of FNC.Methods: A total of 26 participants (9 care recipients, 17 family members) from 11 families participated in a FNC and this qualitative study. Seven home health care nurses trained in FNC conducted these conversations as part of their daily practice. Four to six weeks after the FNC, care recipients and family members were interviewed about their experiences, and the perceived effects or benefits of the FNC. Interviews were semi-structured, face-to-face, and individual. Data collection continued until saturation had been reached. A grounded theory approach was used to analyze the data.Results: Participants experienced FNC as structured and open communication about the care situation. During the FNC, participants felt that they gained a clear overview of the care situation and that relationships among the FNC-participants improved. Participants reported that FNC decreased family members’ burden, and resulted in care that was more tailored to the care recipient’s needs.Conclusions: From the results of this study a model is proposed for families’ experiences with and perceived benefits of FNC. In a subsequent study, this model will be tested in a quantitative cost effectiveness study with a larger sample.
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Background: Caregiving by family members of elderly with chronic conditions is currently intensifying in the context of an aging population and health care reform in the Netherlands. It is essential that nurses have attention for supporting roles of family caregivers of older patients and address family caregiving aspects on behalf of the continuity of care. This study aims to explore what aspects of family caregiving were addressed during planned discussions between nurses, patients and family caregivers in the hospital.Methods: Qualitative descriptive research was conducted using non-participant observation and audio-recordings of planned discussions between nurses, older patients and their family caregivers as they took place in the hospital.Through purposive sampling eligible patients (≥ 65 years) with one or more chronic conditions were included. These patients were admitted to the hospital for diagnostics or due to consequences of their chronic illness.Retrospective chart review was done to obtain patient characteristics. Data were collected in November/December 2013 and April/May 2014 in four hospitals. Qualitative content analysis was performed using the inductive approachin order to gain insight into addressed aspects of family caregiving.Results: A total of 62 patients (mean age (SD) 76 years (7.2), 52% male) were included in the study, resulting in 146 planned discussions (62 admission and discharge discussions and 22 family meetings). Three themes were identifiedregarding addressed aspects of family caregiving. Two themes referred to aspects addressing the patients’ social network, and included ‘social network structure’ and ‘social network support’. One theme referred to aspectsaddressing coordination of care issues involving family caregiving, referred to as ‘coordination of care’.Conclusions: During discussions nurses mostly addressed practical information on the patients’ social network structure. When specific family caregiving support was addressed, information was limited and nurses did not seem toexplore the nature of the family support. Patients discharge and after care needs were addressed occasionally as aspects of coordination of care. Current nursing policies could be evaluated on nursing and family oriented theories.Implications for education could include mirroring study findings with nurses in a group discussion to enhance their awareness on family caregiving aspects.
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This scoping review provides an overview of the impact of growing up with a chronically ill family member on young adults (18-25 years old), and their specific needs. Young adults represent an important life stage involving a transition to adulthood, during which individuals' family situations can affect their future. We searched relevant studies following the guideline of Arskey and O'Mailley's methodological framework and the PRISMA statement guidelines for scoping reviews in PubMed, PsychInfo and reference lists to identify articles for inclusion. Studies from 2005 to 2020 were included in this review. Of the 12 studies, six qualitative studies, five quantitative studies and one mixed method study were included. Eight studies discussed the impact, including consequences at a physical and mental level, at their personal development and future perspectives, but also positive effects, such as being capable of organizing their lives. Four studies discussed the needs of young adult carers, including emotional needs, support needs with regard to stimulating autonomy (arising from internal conflicts) and developing their own identity, and the concerned attitude of involved professionals. An unambiguous definition of the target group and further well-designed research are needed to improve clarity about the role of support, so that future professionals can adequately address the needs and wishes of young adults who grow up with an ill family member.
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Roughly half of all men in prison are fathers of minor children. Despite the high prevalence of fatherhood in prisons, little is known about imprisoned fathers’ needs regarding fatherhood and family relationships. In prisons for men, limited attention is given to men’s roles as fathers and the difficulties they and their families encounter. Prison policies generally prioritise safety, security, and good order rather than promoting men’s identities as fathers and supporting families experiencing paternal imprisonment.
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Purpose Building services technologies such as home automation systems and remote monitoring are increasingly used to support people in their own homes. In order for these technologies to be fully appreciated by the endusers (mainly older care recipients, informal carers and care professionals), user needs should be understood1,2. In other words, supply and demand should match. Steele et al.3 state that there is a shortage of studies exploring perceptions of older users towards technology and the acceptance or rejection thereof. This paper presents an overview of user needs in relation to ambient assisted living (AAL) projects, which aim to support ageing-in-place in The Netherlands. Method A literature survey was made of Dutch AAL projects, focusing on user needs. A total of 7 projects concerned with older persons, with and without dementia, were included in the overview. Results & Discussion By and large technology is considered to be a great support in enabling people to age-in-place. Technology is, therefore, accepted and even embraced by many of the end-users and their relatives. Technology used for safety, security, and emergency response is most valued. Involvement of end-users improves the successful implementation of ambient technology. This is also true for family involvement in the case of persons with dementia. Privacy is mainly a concern for care professionals. This group is also key to successful implementation, as they need to be able to work with the technology and provide information to the end-users. Ambient technologies should be designed in an unobtrusive way, in keeping with indoor design, and be usable by persons with sensory of physical impairments. In general, user needs, particularly the needs of informal carers and care professionals, are an understudied topic. These latter two groups play an important role in implementation and acceptance among care recipients. They should, therefore, deserve more attention from the research community.
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Social needs are important basic human needs; when not satisfied, loneliness and social isolation can occur and subsequently sickness or even premature death. For older people social needs can be more difficult to satisfy because of the loss of resources such as health and mobility. Interventions for older people to satisfy social needs are often not evaluated and when evaluated are not proven successful. Technological interventions can be successful, but the relationship between technology and social wellbeing is complex and more research in this area is needed. The aim of this research is to uncover design opportunities for technological interventions to fulfil social needs of older people. Context-mapping sessions are a way to gain more insight into the social needs of older people and to involve them in the design of interventions to fulfil social needs. Participants of the context-mapping sessions were older people and social workers working with older people. Four sessions with a total of 20 participants were held to generate ideas for interventions to satisfy social needs. The results are transcripts from the discussion parts of the context-mapping sessions and collages the participants created. The transcripts were independently analysed and inductive codes were attached to quotations in the transcripts that are relevant to the research question and subsequently thematic analysis took place. Collages made by the participants were independently analysed by the researchers and after discussion consensus was reached about important themes. The following three main themes emerged: ‘connectedness’, ‘independence’ and ‘meaningfulness’. Technology was not identified as a separate theme, but was addressed in relation to the above mentioned themes. Staying active in a meaningful way, for example by engaging in volunteer work, may fulfil the three needs of being connected, independent and meaningful. In addition, interventions can also focus on the need to be and remain independent and to deal with becoming more dependent. The older people in our study have an ambivalent attitude towards technology, which needs to be taken into account when designing an intervention. We conclude this paper by making recommendations for possible technological interventions to fulfil social needs.
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