Empowerment-Based Physical Activity Intervention for People with Advanced Dry Age-Related Macular Degeneration: Mixed-Methods Protocol.

Age-related macular degeneration (AMD) is the most common cause of incurable visual impairment and impacts daily life. These impacts include loss of social activities, decreased functional independence, and reduced physical activity. This protocol aims to describe a prospective, mixed-methodology for studying a population with AMD before, during, and after an empowerment-based physical activity intervention (EPI). A study framework was also developed for EPI. The intervention will include 20 older individuals (age 65+ years) with AMD recruited in Sweden. The intervention period is six months and comprises adapted physical activity and social activities in a group twice a week and individual health coaching on three occasions. The quantitative pre-test and three follow-ups include physical functional tests, an accelerometer that monitors physical activity continuously for one week, and questionnaires. Individual and focus-group interviews and ethnographic observations will explore the experience of living with AMD and what it means to participate in the EPI for individuals with AMD. The chosen methodology offers a structured way for researchers to explore the experiences and factors that may provide insights into the potential of creative supervised, adapted physical activity in groups, health coaching, and socialising that are significant to enable well-being among older individuals with AMD.

Ambivalence among staff regarding ageing with intellectual disabilities: Experiences and reflections.

This study explores the experiences and reflections of staff in intellectual disability (ID) services concerning ageing with ID. Qualitative interviews were conducted with 24 staff members in group homes and daily activity centres. The findings showed that the staff were uncertain about the signs of ageing in people with intellectual disabilities; they compared the life conditions of these people with conditions in older people without intellectual disabilities. Their emphasis on an active lifestyle was very strong. The staff members also mentioned uncertainty about how to facilitate assistive devices and whether 'ageing in place' was the best solution. The overall theme was manifested as ambivalence where notions of older people with intellectual disabilities seemed incompatible with notions of old age in general and could be explained by the theoretical concept of age coding. The findings of this study indicate the need to provide education about ageing to staff working in ID services.

Next of kin's perceptions of the meaning of participation in the care of older persons in nursing homes: a phenomenographic study.

BACKGROUND: Being involved in the care of a loved one is a desire of many next of kin. However, according to several studies of the perceptions of nursing home staff, the involvement of next of kin is not an obvious part of care. To be able to involve next of kin in care at nursing homes, the perceptions of what participation means are an important piece of knowledge. The aim of this study was therefore to describe variations in next of kin's perceptions of the meaning of participation in the care of older persons living in nursing homes. METHODS: Eighteen next of kin of older persons living in ten nursing homes in Sweden were recruited for interviews. The study design was based on a phenomenographic approach, focusing on the qualitatively different ways in which a person perceives, experiences or conceptualises a phenomenon or certain aspect of reality. RESULTS: Five categories emerged from analysis of the interviews, representing the next of kin's perceptions of the meaning of participation in the care of older persons in nursing homes: be present; communicate; monitor; do practical tasks; and to represent. The next of kin expressed meanings that belonged to more than one category, and the categories were interdependent. CONCLUSIONS: Our results indicate that there are several meanings of next of kin's perceptions of participation at nursing homes. Nursing home staff's knowledge of these perceptions is important to enable next of kin to participate according to their own preferences.

Conversations about Death and Dying with Older People: An Ethnographic Study in Nursing Homes.

Nursing homes are often places where older persons “come to die.” Despite this, death and dying are seldom articulated or talked about. The aim of this study was to explore assistant nurses’ experiences of conversations about death and dying with nursing home residents. This study is part of an implementation project through a knowledge-based educational intervention based on palliative care principles. An ethnographic study design was applied in seven nursing homes, where eight assistant nurses were interviewed and followed in their daily assignments through participant observations. The assistant nurses stated that they had the knowledge and tools to conduct such conversations, even though they lacked the time and felt that emotional strain could be a hinder for conversations about death and dying. The assistant nurses used the strategies of distracting, comforting, and disregarding either when they perceived that residents’ reflections on death and dying were part of their illness and disease or when there was a lack of alignment between the residents’ contemplations and the concept of dying well. They indicated that ambivalence and ambiguity toward conversations about death and dying should be taken into consideration in future implementations of knowledge-based palliative care that take place in nursing homes after this project is finalized.

Striking a Balance: A Qualitative Study of Next of Kin Participation in the Care of Older Persons in Nursing Homes in Sweden.

Most of the care in nursing homes is palliative in nature, as it is the oldest and the frailest people who live in nursing homes. The aim of this study was to explore next of kin's experiences of participating in the care of older persons at nursing homes. A qualitative design was used, based on semi-structured interviews with 40 next of kin, and analyzed using qualitative content analysis. An overarching theme emerged, a balancing act consisting of three categories: (1) visiting the nursing home; (2) building and maintaining relationships; and (3) gathering and conveying information. The next of kin have to balance their own responsibility for the older person's wellbeing by taking part in their care and their need to leave the responsibility to the staff due to critical health conditions. The next of kin wanted to participate in care meetings and conversations, not only in practical issues. The findings indicate the need to improve the next of kin's participation in the care as an equal partner. Increased knowledge about palliative care and decision-making of limiting life-prolonging treatment may lead to a higher quality of care.