Bibliotek

Sök aktuell litteratur inom anhörigområdet

Sökresultat

Din sökning på resulterade i 7659 träffar

Experience of caregiving: Relatives of people experiencing a first episode of psychosis

Tennakoon L, Fannon D, Doku V, O'Ceallaigh S, Soni W, Santamaria M, et al. (2000)

Investigated the dimensions of caregiving and morbidity in caregivers of people with first-episode psychosis. Caregivers (aged 16–68 yrs) of 40 people with first-episode psychosis (aged 18–39 yrs) were interviewed at home about their experience of caregiving, coping strategies, and distress. Results found that caregivers used emotional and practical strategies to cope with participants' negative symptoms and difficult behaviors and experienced more worry about these problems. They increased supervision when the participants displayed difficult behaviors. 12% of caregivers were suffering from psychiatric comorbidity as defined by the General Heath Questionnaire (D. P. Goldberg and V. F. Hillier, 1979). Those living with the participant had more frequent visits to their general practitioner. It is concluded that at first-episode psychosis caregivers are already having to cope with a wide range of problems and are developing coping strategies. Caregivers worried most about difficult behaviors and negative symptoms in participants. (PsycINFO Database Record (c) 2012 APA, all rights reserved)

Experience of siblings of children treated for cancer

Nolbris, M., Enskar, K., & Hellstrom, A-L. (2007)

Abstract
The aim was to obtain an understanding of the experience in everyday life of being a sibling when a brother or sister is receiving treatment for a cancer disease or has completed treatment. In order to illuminate the experience of the siblings themselves a phenomenological-hermeneutic method was used. Ten siblings were asked, in the form of a broad-based, open question, to tell about their experience of being the sibling of a brother or sister in this situation. There was an awareness of sibling-ship as a special relation since the brother or sister had got cancer. This feeling was very strong and close, and when needed the sibling admitted a protective and advocacy role. The siblings felt difficulties to always be loyal with the brother or sister needs and demands from other interests. They lived a new life and periods of ups and down following the condition of the brother or sister. Everyday life varied from joy to a life filled with worries and anxiety. Siblings experienced feelings of an existential nature, such as quality of life and death.

Experiences and nursing support of relatives of persons with severe mental illness [Elektronisk resurs].

Weimand, B. M. (2012)

Aim: The overall aim of this thesis was to illuminate experiences of relatives of persons with severe mental illness, and their need for support from formal care. Furthermore, to illuminate nursing support of relatives of persons with severe mental illness.
Methods: A mixed methods design was used. In study I, data was collected with a questionnaire responded by 226 relatives and analysed with statistics. In study II, data was gathered with interviews with a strategic sample of 18 relatives, analysed with phenomenography. Study III gathered data from 216 relatives using open-ended questions in the questionnaire (I), analysed with qualitative content analysis. In study IV, data was collected by means of focus-group interviews with 4 groups of nurses, working in mental healthcare and analysed with phenomenography.
Main findings: The relatives experienced that their lives were intertwined with the life of their severely mentally ill next of kin. The relatives experienced burden and a poor health, and there were associations between burden and health (I). The relatives had to balance between multiple concerns and make choices on behalf of others and themselves, constantly struggling between opposing feelings and between reflections (II). Relatives' encounters with mental health personnel were mainly negative, although some had positive experiences. They strived for involvement in mental healthcare for the sake of their severely mentally ill next of kin, and wanted inclusion and support for their own sake, but mostly felt left alone with straining but inescapable responsibilities (III). The nurses conceived that their responsibility was first and foremost the patient and to develop an alliance with him or her. The nurses often felt they had to exclude relatives, but were sometimes able to support them (IV).
Conclusions: Relatives' lives are intertwined with the life of their severely mentally ill next of kin. Relatives' overall demanding life situation means that the mental health services must involve relatives for the sake of the severely mentally ill person but also include them for their own sake. They need practical and emotional support. Guidelines must be designed to address relatives' needs, and support must be adapted to the individual relative.

Experiences at the time of diagnosis of parents who have a child with a bone dysplasia resulting in short stature

Hill, V., Sahhar, M., Aitken, M. A., Savarirayan, R., & Metcalfe, S. (2003)

Many studies have shown that, for families who are given the diagnosis of a disability, satisfaction with disclosure is an important element. Information given and the attitudes of the disclosing health professionals during this critical period have a significant effect on the coping and adaptation of the family. While most studies dealt with conditions involving intellectual disability or cancer, this study was conducted to explore parents' experience of being told that their child had a condition, such as a bone dysplasia, that would result in significant short stature. Semistructured interviews were conducted with 11 families who had children diagnosed with a bone dysplasia, specifically, achondroplasia (n = 9) and pseudoachondroplasia (n = 2). Families were recruited through the Bone Dysplasia Clinic at the Royal Children's Hospital, Victoria, Australia and via contact with the Short Statured People's Association of Victoria. Parents were asked about how they were told of their child's diagnosis, how they would have preferred to have been told, and what would have made the experience less distressing for them. Transcripts of the interviews were analyzed, and major themes were identified relating to the parents' experiences. Our data suggest that the manner in which the diagnosis is conveyed to the parents plays a significant role in their adjustment and acceptance. Provision of written information relating to the condition, possible medical complications, positive outlook for their child's future, and how to find social services and supports were some of the most significant issues for the parents. The multidisciplinary approach of the Bone Dysplasia Clinic was important to parents in the continued management of the families.

Experiences at the time of diagnosis of parents who have a child with a bone dysplasia resulting in short stature

Hill, V., Sahhar, M., Aitken, M. A., Savarirayan, R., & Metcalfe, S. (2003)

Many studies have shown that, for families who are given the diagnosis of a disability, satisfaction with disclosure is an important element. Information given and the attitudes of the disclosing health professionals during this critical period have a significant effect on the coping and adaptation of the family. While most studies dealt with conditions involving intellectual disability or cancer, this study was conducted to explore parents' experience of being told that their child had a condition, such as a bone dysplasia, that would result in significant short stature. Semistructured interviews were conducted with 11 families who had children diagnosed with a bone dysplasia, specifically, achondroplasia (n = 9) and pseudoachondroplasia (n = 2). Families were recruited through the Bone Dysplasia Clinic at the Royal Children's Hospital, Victoria, Australia and via contact with the Short Statured People's Association of Victoria. Parents were asked about how they were told of their child's diagnosis, how they would have preferred to have been told, and what would have made the experience less distressing for them. Transcripts of the interviews were analyzed, and major themes were identified relating to the parents' experiences. Our data suggest that the manner in which the diagnosis is conveyed to the parents plays a significant role in their adjustment and acceptance. Provision of written information relating to the condition, possible medical complications, positive outlook for their child's future, and how to find social services and supports were some of the most significant issues for the parents. The multidisciplinary approach of the Bone Dysplasia Clinic was important to parents in the continued management of the families.

Experiences in a group of grown up children of mentally ill patients

Knutsson-Medin, L., Edlund, B. & Ramklint, M. (2007)

children of psychiatric patients;mental health services;offspring at risk;parental mental illness;qualitative methods;resilience
Children of mentally ill parents have increased rates of psychopathology and reduced adaptive functioning. However, there are very few studies examining the subjective experiences of those children and their opinions concerning their previous contact with psychiatric services. This study followed up a group of children of former psychiatric inpatients by sending them a questionnaire asking about their experiences. Thirty-six individuals responded. Answers were analysed qualitatively by using manifest content analysis. Participants reported negative experiences and lack of information and support from psychiatric care. They had wanted more explanations and more support for themselves. Quantitative data are used to establish the significance of the results.

Experiences in a group of grown-up children of mentally ill parents

Knutsson-Medin L, Edlund B, Ramklint M. (2007)

Children of mentally ill parents have increased rates of psychopathology and reduced adaptive functioning. However, there are very few studies examining the subjective experiences of those children and their opinions concerning their previous contact with psychiatric services. This study followed up a group of children of former psychiatric inpatients by sending them a questionnaire asking about their experiences. Thirty-six individuals responded. Answers were analysed qualitatively by using manifest content analysis. Participants reported negative experiences and lack of information and support from psychiatric care. They had wanted more explanations and more support for themselves. Quantitative data are used to establish the significance of the results.

Experiences of long-term home care as an informal caregiver to a spouse: gendered meanings in everyday life for female carers

Eriksson H, Sandberg J, Hellström I. (2013)

AIMS AND OBJECTIVES: In this article, we explore the gender aspects of long-term caregiving from the perspective of women providing home care for a spouse suffering from dementia.
BACKGROUND: One of the most common circumstances in which a woman gradually steps into a long-term caregiver role at home involves caring for a spouse suffering from dementia. Little attention has been paid to examining the experiences and motivations of such caregivers from a feminist perspective.
METHODS: Twelve women, all of whom were informal caregivers to a partner suffering from dementia, were interviewed on the following themes: the home, their partner's disease, everyday life, their relationship and autonomy. The results of these interviews were analysed in relation to gender identity and social power structures using a feminist perspective.
RESULTS: The findings of this study show that the informants frequently reflected on their caregiving activities in terms of both general and heteronormative expectations. The results suggest that the process of heteropolarisation in these cases can be an understood as a consequence of both the spouse's illness and the resulting caring duties. Also, the results suggest that the act of caring leads to introspections concerning perceived 'shortcomings' as a caregiver. Finally, the results indicate that it is important to recognise when the need for support in day-to-day caring is downplayed.
CONCLUSIONS: Women view their caregiving role and responsibilities as paramount; their other duties, including caring for themselves, are deemed less important. We stress that the intense commitment and responsibilities that women experience in their day-to-day caring must be acknowledged and that it is important for healthcare professionals to find mechanisms for providing choices for female caregivers without neglecting their moral concerns.
IMPLICATIONS FOR PRACTICE: Female carers face difficulties in always living up to gendered standards and this need to be considered when evaluating policies and practices for family carers

Experiences of loss and chronic sorrow in persons with severe chronic illness

Ahlström, Gerd (2007)

Aims and objectives.  The aims of the present study were to describe losses narrated by persons afflicted with severe chronic physical illness and to identify the concomitant occurrence of chronic sorrow.

Background.  Reactions connected with repeated losses are referred to in the literature as chronic sorrow, which has recently been described in conjunction with chronic illness.

Design.  A qualitative study with an abductive approach of analysis, including both inductive and deductive interpretations.

Method.  The study is based on 30 persons of working age with average disease duration of 18 years. The average age was 51 years. All of the persons had personal assistance for at least three months because of considerable need for help in daily life due to physical disability. Each person was interviewed twice. There was also an independent assessment of the deductive results concerning chronic sorrow.

Experiences of parents with a son or daughter suffering from Schizophrenia

Ferriter M, Huband N. (2003)

Parents of 22 patients diagnosed with schizophrenia, and receiving care in a secure forensic setting, were interviewed to elicit their views on the causes of the disorder, the emotional burden and the helpfulness of others when seeking support. Pathological parenting theories of causation were rated the least important, and biological and life-event models the most. Stress, loss and fear were the most commonly reported reactions. Violence, withdrawal and verbal aggression were most often identified as behaviours causing difficulty. Many participants felt guilt, usually in the absence of being blamed. Family members and self-help groups were recalled as being of most help, and professional staff were considered to be of least help. Parenting a son or daughter with schizophrenia frequently causes considerable emotional distress, often with perception of unhelpful responses from professional staff. Parents often blame themselves for the disorder, even when not blamed by others. Guilt does not appear to arise from belief in a pathological parenting model of schizophrenia. Factors contributing to self-blame in this group are discussed, together with suggestions for appropriate therapeutic intervention.

Experiences with using information and communication technology to build a multi-municipal support network for informal carers

Torp S., Bing-Jonsson P., Hanson E. (2013)

This multi-municipal intervention study explored whether informal carers of frail older people and disabled children living at home made use of information and communication technology (ICT) to gain knowledge about caring and to form informal support networks, thereby improving their health. Seventy-nine informal carers accessed web-based information about caring and an e-based discussion forum via their personal computers. They were able to maintain contact with each other using a web camera and via normal group meetings. After the first 12 months, 17 informal carers participated in focus group interviews and completed a short questionnaire. Four staff members were also interviewed. Participant carers who had prior experiences with a similar ICT-based support network reported greater satisfaction and more extensive use of the network than did participants with no such prior experience. It seems that infrequent usage of the service may be explained by too few other carers to identify with and inappropriate recruitment procedures. Nevertheless, carers of disabled children reported that the intervention had resulted in improved services across the participant municipalities. To achieve optimal effects of an ICT-based support network due attention must be given to recruitment processes and social environment building for which care practitioners require training and support.

Explorascope: Stimulation of language and communicative skills of multiple handicapped children through an interactive, adaptive educational toy

Hummels C, van der Helm A, Hengeveld B, Luxen R, Voort R, van Balkom H, et al. (2007)

Very young non- or hardly-speaking children with severe disabilities need active guidance to stimulate interaction with their environment in order to develop their communicative and linguistic skills. Augmentative and alternative communication (AAC) systems can help this process, provided that they are tuned to this specific user group. LinguaBytes is a research programme, which aims at developing an interactive and adaptive educational toy that stimulates the language and communicative skills of multiple-handicapped children with a developmental age of 1-4 years. In this article we show which guidelines we consider essential for developing this tool. We have developed several concepts based on these guidelines, of which we elucidate Explorascope (E-scope). E-scope consists of a tangible toy-like interface that is adaptable to an individual child with respect to his or her cognitive, linguistic, emotional and perceptual-motor skills. A first user test shows that E-scope is promising and useful for this user group.

Exploring access to care among older people in the last phase of life using the behavioural model of health services use: a qualitative study from the perspective of the next of kin of older persons who had died in a nursing home.

Condelius A, Andersson M. (2015)

BACKGROUND: There is little investigation into what care older people access
during the last phase of their life and what factors enable access to care in
this group. Illuminating this from the perspective of the next of kin may provide
valuable insights into how the health and social care system operates with
reference to providing care for this vulnerable group. The behavioural model of
health services use has a wide field of application but has not been tested
conceptually regarding access to care from the perspective of the next of kin.
The aim of this study was to explore the care accessed by older people during the
last phase of their life from the perspective of the next of kin and to
conceptually test the behavioural model of health services use.
METHODS: The data collection took place in 2011 by means of qualitative
interviews with 14 next of kin of older people who had died in a nursing home.
The interviews were analysed using directed content analysis. The behavioural
model of health services use was used in deriving the initial coding scheme,
including the categories: utilization of health services, consumer satisfaction
and characteristics of the population at risk.
RESULTS: Utilization of health services in the last phase of life was described
in five subcategories named after the type of care accessed i.e. admission to a
nursing home, primary healthcare, hospital care, dental care and informal care.
The needs were illuminated in the subcategories: general deterioration, medical
conditions and acute illness and deterioration when death approaches. Factors
that enabled access to care were described in three subcategories: the
organisation of care, next of kin and the older person. These factors could also
constitute barriers to accessing care. Next of kin's satisfaction with care was
illuminated in the subcategories: satisfaction, dissatisfaction and factors
influencing satisfaction. One new category was constructed inductively: the
situation of the next of kin.
CONCLUSIONS: A bed in a nursing home was often accessed during what the next of
kin regarded as the last phase of life. The needs among older people in the last
phase of life can be regarded as complex and worsening over time. Most enabling
factors lied within the organisation of care but the next of kin enabled access
to care and contributed significantly to care quality. More research is needed
regarding ageism and stigmatic attitudes among professionals and informal
caregivers acting as a barrier to accessing care for older people in the last
phase of their life. The behavioural model of health services use was extended
with a new category showing that the situation of the next of kin must be taken
into consideration when investigating access to care from their perspective. It
may also be appropriate to include informal care as part of the concept of access
when investigating access to care among older people in the last phase of their
life. The results may not be transferable to older people who have not gained
access to a bed in a nursing home or to countries where the healthcare system

Exploring Comprehensibility and Manageability in Palliative Home Care: An Interview Study of Dying Cancer Patients' Informal Carers

Milberg, A. and P. Strang (2004)

The presence of an informal carer is often a prerequisite for successful palliative home care, and the staffs ability to support informal carers' coping in such situations is important. Recent research has revealed that it is possible to achieve positive psychological states in palliative care despite the burdening situation. As there is a lack of theory-based coping studies, the aim of this study was to describe, within the context of palliative home care, two concepts in Antonovsky's theory of Sense of Coherence: comprehensibility (a perception that the challenge is understood) and manageability (a perception that the resources to cope are available). Tape-recorded semi-structured interviews with 19 informal carers during ongoing palliative home care were transcribed and analysed with a qualitative hermeneutic approach. Elements that facilitated comprehensibility included open information, symbolic information, basic life assumptions and previous knowledge. These were important for creating a congruent inner reality (as opposed to chaos). Resources contributing to manageability dealt with power, support, competence and accessibility, which on a more abstract level resulted in a feeling of togetherness (as opposed to isolation). The findings are discussed in relation to the complexity of communication between staff and carers within palliative care. (PsycINFO Database Record (c) 2007 APA ) (journal abstract)

Exploring Comprehensibility and Manageability in Palliative Home Care: An Interview Study of Dying Cancer Patients' Informal Carers

Milberg, A. and P. Strang (2004)

The presence of an informal carer is often a prerequisite for successful palliative home care, and the staffs ability to support informal carers' coping in such situations is important. Recent research has revealed that it is possible to achieve positive psychological states in palliative care despite the burdening situation. As there is a lack of theory-based coping studies, the aim of this study was to describe, within the context of palliative home care, two concepts in Antonovsky's theory of Sense of Coherence: comprehensibility (a perception that the challenge is understood) and manageability (a perception that the resources to cope are available). Tape-recorded semi-structured interviews with 19 informal carers during ongoing palliative home care were transcribed and analysed with a qualitative hermeneutic approach. Elements that facilitated comprehensibility included open information, symbolic information, basic life assumptions and previous knowledge. These were important for creating a congruent inner reality (as opposed to chaos). Resources contributing to manageability dealt with power, support, competence and accessibility, which on a more abstract level resulted in a feeling of togetherness (as opposed to isolation). The findings are discussed in relation to the complexity of communication between staff and carers within palliative care. (PsycINFO Database Record (c) 2007 APA ) (journal abstract)

Senast uppdaterad 2021-01-25 av EmelieS, ansvarig utgivare Lennart Magnusson