Quality of life in the care home: a qualitative study of the perspectives of residents with multiple sclerosis

PURPOSE: Care home residents with multiple sclerosis (MS) are more physically dependent than the average residents. However, little is known about their quality of life (QoL). We investigated the experiences of residents with MS using qualitative research methods and developed a conceptual model of QoL. METHODS: Twenty-one people with MS (age range 43-80 years) residing in a range of care homes were interviewed. The interviews were transcribed verbatim and analyzed using the constant comparative method. RESULTS: Four core model domains identified were as follows: (i) What the care home means to the residents, (ii) Self, (iii) Environment and (iv) Relationships. Some residents reported that care homes can relieve the burden on family, address specific environmental issues regarding safety and act as a form of social support. However, some reported isolation and difficulties adjusting to life in the care home. Having access to rehabilitation strengthened the feelings of independence within the care home. CONCLUSIONS: QoL is a broad, multidimensional construct for residents with MS. QoL measures for residents with MS should incorporate broad domains, including environmental factors. The conceptual model highlighted several areas for improving QoL of residents with MS, including more involvement of family members, encouraging independence by providing access to rehabilitation and providing support in the transition process

Quality-of-life measures for use within care homes:A systematic review of their measurement properties

Objective: the aims of this review were (i) to identify quality-of-life (QoL) measures which have had their measurement properties validated in people residing in care homes or nursing homes, and to critically compare and summarise these instruments and (ii) to make recommendations for measurement instruments. Methods: bibliographic databases PsycINFO, PubMed, Cochrane, CINAHL and Embase were searched for articles evaluating measurement properties of QoL instruments in people residing in care homes. Methodological quality of studies was assessed using the consensus-based standards for the selection of health measurement instruments checklist. Measurement properties of instruments were appraised using a systematic checklist. Results: the search strategy resulted in 3252 unique citations, of which 15 articles were included in this review. These articles assessed 13 instruments, 8 of which were dementia or Alzheimer specific instruments. The QUALIDEM, a dementia-specific observational instrument, had the widest array of information available on its measurement properties, which were mostly satisfactory. Most measurement instruments lacked information on hypotheses testing and content validity. Information on responsiveness and measurement error was not available for any instrument. Conclusions: for people with dementia living in care homes, the QUALIDEM is recommended for measuring QoL. For residents without dementia, we recommend Kane et al.'s Psychosocial Quality of Life Domains questionnaire. Studies of higher methodological quality, assessing a wider range of measurement properties are needed to allow a more fully informed choice of QoL instrument

Complex interplay between intrinsic and extrinsic drivers of long-term survival trends in southern elephant seals

BACKGROUND: Determining the relative contribution of intrinsic and extrinsic factors to fluctuations in population size, trends and demographic composition is analytically complex. It is often only possible to examine the combined effects of these factors through measurements made over long periods, spanning an array of population densities or levels of food availability. Using age-structured mark-recapture models and datasets spanning five decades (1950–1999), and two periods of differing relative population density, we estimated age-specific probabilities of survival and examined the combined effects of population density and environmental conditions on juvenile survival of southern elephant seals at Macquarie Island. RESULTS: First-year survival decreased with density during the period of highest population size, and survival increased during years when the Southern Oscillation Index (SOI) anomaly (deviation from a 50-year mean) during the mother's previous foraging trip to sea was positive (i.e., El Niño). However, when environmental stochasticity and density were considered together, the effect of density on first-year survival effectively disappeared. Ignoring density effects also leads to models placing too much emphasis on the environmental conditions prevailing during the naïve pup's first year at sea. CONCLUSION: Our analyses revealed that both the state of the environment and population density combine to modify juvenile survival, but that the degree to which these processes contributed to the variation observed was interactive and complex. This underlines the importance of evaluating the relative contribution of both the intrinsic and extrinsic factors that regulate animal populations because false conclusions regarding the importance of population regulation may be reached if they are examined in isolation

Child sexual abuse and social identity loss: a qualitative analysis of survivors' public accounts

Emerging evidence suggests that social identities are an important determinant of adaptation following traumatic life experiences. In this paper we analyse accounts of people who experienced child sexual abuse. Using publicly available talk of people who waived their right to anonymity following successful conviction of perpetrators, we conducted a thematic analysis focusing on trauma related changes in their social identities. Analysis of these accounts highlighted two themes. The first highlights the acquisition in these accounts of unwanted and damaging identity labels. The second presents child sexual abuse as a key destructive force in terms of important identity work during childhood. Discussion of this analysis centres on the pathological consequences of social identity change. Both the loss of valued identities and the acquisition of aberrant and isolating identities are experienced and constructed as devastating by those affected by child sexual abuse. This has important implications, not only for those impacted by child sexual abuse, but for how abuse is discussed in society, and how it is approached by policy makers, educators and individuals working with survivors and their families

Sexual violence and traumatic identity change: evidence of collective post-traumatic growth

Recent research indicates that social identities play a crucial role in the connection between adversity, post-traumatic stress, and overall psychological well-being. Understanding of how trauma influences collective dimensions of the self, positively or negatively, is limited. This study focuses on analysing publicly accessible narratives of four women who chose to waive their anonymity after the conviction of the men who had attacked and sexually assaulted them in Ireland. Thematic analysis highlighted two themes that signal (i) collective dimensions to this personal trauma, (ii) attempts to reconstruct social identities in the aftermath of trauma. Women presented their experiences as having the potential to amplify positive connections with others despite the wider embedded sociocultural understanding of sexual assault. These changes were associated with redefinition of social identities. Discussion highlights the potential for personal and intimate trauma to result in positive social identity change; a phenomenon that we label collective post-traumatic growth

Finishing the euchromatic sequence of the human genome

The sequence of the human genome encodes the genetic instructions for human physiology, as well as rich information about human evolution. In 2001, the International Human Genome Sequencing Consortium reported a draft sequence of the euchromatic portion of the human genome. Since then, the international collaboration has worked to convert this draft into a genome sequence with high accuracy and nearly complete coverage. Here, we report the result of this finishing process. The current genome sequence (Build 35) contains 2.85 billion nucleotides interrupted by only 341 gaps. It covers ∼99% of the euchromatic genome and is accurate to an error rate of ∼1 event per 100,000 bases. Many of the remaining euchromatic gaps are associated with segmental duplications and will require focused work with new methods. The near-complete sequence, the first for a vertebrate, greatly improves the precision of biological analyses of the human genome including studies of gene number, birth and death. Notably, the human enome seems to encode only 20,000-25,000 protein-coding genes. The genome sequence reported here should serve as a firm foundation for biomedical research in the decades ahead

Living well in care homes: A systematic review of qualitative studies

BACKGROUND: research in care home settings is often negatively focused, portraying life as sterile and devoid of meaningful experiences. Care homes have the potential to influence people's lives socially, physically and psychologically. It is important to understand what factors contribute to this. OBJECTIVE: to conduct a systematic qualitative review of care home life and provide practical recommendations to enhance residents' quality of life. METHODS: the following databases were searched: PsycINFO, Medline, Web of Science, EMBASE, Allied and Complementary Medicine Database and Cumulative Index to Nursing and Allied Health Literature. References from appropriate journals and individual articles were checked. Papers that fitted our selection criteria were selected. Two independent reviewers assessed methodological study quality. Thematic analysis and meta-ethnographic methods were adapted to synthesise findings. RESULTS: thirty-one studies were identified. People in care homes voiced concerns about lack of autonomy and difficulty in forming appropriate relationships with others. Four key themes were identified: (i) acceptance and adaptation, (ii) connectedness with others, (iii) a homelike environment, (iv) caring practices. CONCLUSION: positive experiences in care homes can occur and are important for residents' quality of life. The review supports literature highlighting the need for relationship-centred approaches to care and emphasises the importance of understanding the resident's attitude towards living in care homes

‘Sins of their fathers’: Social groups parental incarceration and positive psychological outcomes across time in the US and UK

Paternal incarceration (PI) is recognised as a severely stigmatising event that undermines social connections leaving affected children isolated and vulnerable. However, few studies have explored social group membership as a potential mediator of positive outcomes. This paper analysed data from two national contexts, Scotland and the United States, to examine the potential for social group membership in childhood to mediate the association between PI and child behavioural and emotional outcomes. Study 1 reported on cross-sectional data from the Growing Up in Scotland dataset of children aged 12 years. Study 2 used longitudinal data from the Fragile Families cohort study (USA) of children aged 9 years and then 15 years. Children and parents completed measures of PI, children's group membership, as well as positive functioning. In Study 1, a mediated indirect effect of PI on prosocial behaviour via children's group membership was observed. In Study 2, children's reported social group membership mediated the effect of PI on positive adolescent functioning longitudinally. Whilst experiences of PI at age 9 were linked with lower group membership at age 15, group membership was associated with higher levels of positive adolescent functioning. This has implications for the support families receive when a parent is incarcerated to avoid children serving sentences for ‘the sins of their fathers’.</p