Understanding the experience of moving a loved one to a long-term care facility:family members' perspectives

This project was designed to develop an understanding of family members' experiences of moving a loved one to a long-term care facility and to identify ways in which facilities might help ease this process. Twenty-one semi-structured interviews were conducted with family members who had recently moved a relative into one of three long-term care facilities in Southern Ontario, Canada. Several factors appeared to contribute to the overall experience of the move to long-term care and either served to impede or facilitate a positive transition for families. These factors included: the experience during the waiting process, preparation for the move, ease of the actual move, control over decisions, communication throughout the process, support from others, and family and resident perceptions and attitudes towards the move. Easing the difficult aspects of moving a loved one to a long-term care setting can be facilitated with better preparation and support from facilities and community services.     

An Ecological Understanding of Caregiver Experiences in Palliative Care

Palliative care is specialized health care to improve quality of life for patients with serious illness and their families through prevention and relief of suffering. A Palliative Care Institute was held in western Washington to capture community voices about diverse needs, strengths, and opportunities for improvement of palliative care. Researchers employed qualitative methods to obtain thematic data, provide real-time analysis, and engage in a multivoting technique to reflect stakeholder interest in individual themes and prioritize larger group interests. Bronfenbrenner’s ecological systems framework was used to explore caregiver experiences. Within the microsystem, caregivers reported difficulties in interactions with medical providers as a key challenge. Within the mesosysytem, interactions between patients and medical providers and the impact on caregivers were explored. Within the exosystem, caregivers reported lack of control over the schedules of personal care staff. Macrosystem influences included impact of local culture on the development of palliative care services. Chronosystem influences include de-medicalization of childbirth and its impact on perceptions of palliative care. Implications include the need for social workers to be proactive in fostering trust and effective communication between care providers and caregivers, and the demand for health care provider training in communication with patients and families.     

Staff-Family Relations and Institutional Care Policies

As institutional care providers increasingly recognize the importance of the family, the quality of staff-family relations has become a concern. This study investigated the relationship between selected facility care policies and staff-family relationships. Data secured from staff members and family members in rural nursing homes revealed a relationship between the family role that the care policy prescribed and the degree of staff-family integration. The study concluded that care policies viewing family members as clients will have positive consequences for staff and families and ultimately the residents.     

Comparing Families and Staff in Nursing Homes and Assisted Living: Implications for Social Work Practice

Nursing homes and residential care/assisted living settings provide care to 2.4 million individuals. Few studies compare the experience of, and relationships between, family and staff in these settings, despite ongoing family involvement and evidence that relationships are problematic. Data from 488 families and 397 staff members in 24 settings examined family involvement and family and staff burden, depressive symptoms, and perceptions; and staff absenteeism and turnover. There were few differences across setting types. Although conflict rarely occurred, there was room for improvement in family–staff relations; this area, and preparing family for their caregiving roles, are appropriate targets for social work intervention.     

Family perspectives on the hospice experience in adult family homes

Growing numbers of terminally ill older adults receive hospice services in adult family homes (AFHs); however, little is known about the provision and receipt of end-of-life care in such environments. This article reports findings from a qualitative exploration of family members' perspectives of the hospice experience in AFHs. Analysis of data obtained during interviews of 15 residents' family members exposed significant challenges associated with transition to an AFH, highlighted the importance of AFH and hospice staff in family members' assessment of overall quality of care, and emphasized the critical nature of communication in AFH settings.     

Professional Perspectives on Decision Making about the Long-term Care of Older People

With the increasing pressure on social and health care resources,professionals have to be more explicit in their decision makingregarding the long-term care of older people. This groundedtheory study used 19 focus groups and nine semi-structured interviews(99 staff in total) to explore professional perspectives onthis decision making. Focus group participants and intervieweescomprised care managers, social workers, consultant geriatricians,general medical practitioners, community nurses, home care managers,occupational therapists and hospital discharge support staff.The emerging themes spanned context, clients, families and services.Decisions were often prompted by a crisis, hindering professionalsseeking to make a measured assessment. Fear of burglary andassault, and the willingness and availability of family to helpwere major factors in decisions about living at home. Serviceavailability in terms of public funding for community care,the availability of home care workers and workload pressureson primary care services influenced decision ‘thresholds’regarding admission to institutional care. Assessment toolsdesigned to assist decision making about the long-term careof older people need to take into account the critical aspectsof individual fears and motivation, family support and the availabilityof publicly funded services as well as functional and medicalneeds.     

Implementation of a Community-Based Approach to Dementia Care in England: Understanding the Experiences of Staff

ABSTRACT

Given the increasing numbers of people living with dementia, it is imperative that new, practical solutions are found to the issues faced by this group of people and their families. This article draws on findings from a qualitative study that explored the implementation of a community-based project to support people living with dementia in one local area in England. This approach has different names; in the United Kingdom it is Shared Lives or adult placement, which would be most comparable to family care in Europe and adult foster care in the United States. Interviews were conducted with 14 staff connected to the Shared Lives project. Interview data were coded using the normalization process theory constructs of coherence, cognitive participation, and collective action. Supportive program factors identified were a dedicated staff member and resources, and the availability of specialist knowledge and skills. Detriments to program success included lack of understanding about the service, perceptions it was a poor fit with existing practice, and wider organizational issues that negatively affected normalization of the intervention. Suggestions for future research go beyond staff opinions, stressing the importance of using a wider range of stakeholders and incorporating measurement of outcomes for people using the service.     

Calling the Question of “Possible Dying” Among Nursing Home Residents

Abstract

Glaser and Strauss reported decades ago that in order for a person to be treated as dying, he/she must be defined as dying. Defining nursing home residents as “dying” can be complicated because most residents are in advanced old age with multiple chronic conditions. Using a social construction theoretical framework, this study looks at the step before the declaration of dying, that is, the consideration of the possibility of dying. This qualitative study is a secondary analysis of prospective data collected during 16 months of fieldwork on behalf of 45 nursing home residents whose health was considered declining. The purpose of this paper is to build understanding about the social construction of “possible dying” by reporting triggers that can call the question of possible dying and stimulate a discussion about the nursing home resident's status, prognosis, care options, and preferences. These triggers include: Health status decline; noncompliance with diet or medications; available medical interventions not being well suited for the residents; and family consideration of an out-of-town trip. The paper also reports barriers (family, staff, and disease process) and facilitators to calling the question of possible dying, including families having a sense of treatments they would like to avoid and having the opportunity to talk through options. Findings are discussed in light of basic assumptions of social construction. Implications for social workers include helping residents, families, and staff anticipate and address the possibility of dying, and to reflect these discussion in care plans, as well as the need to be available to help residents and family members with psychosocial issues related to living and dying in the nursing home setting, including the profound issues that can be provoked or exacerbated by resident health status decline and possible dying.     

Calling the question of "possible dying" among nursing home residents: triggers, barriers, and facilitators

Glaser and Strauss reported decades ago that in order for a person to be treated as dying, he/she must be defined as dying. Defining nursing home residents as "dying" can be complicated because most residents are in advanced old age with multiple chronic conditions. Using a social construction theoretical framework, this study looks at the step before the declaration of dying, that is, the consideration of the possibility of dying. This qualitative study is a secondary analysis of prospective data collected during 16 months of fieldwork on behalf of 45 nursing home residents whose health was considered declining. The purpose of this paper is to build understanding about the social construction of "possible dying" by reporting triggers that can call the question of possible dying and stimulate a discussion about the nursing home resident's status, prognosis, care options, and preferences. These triggers include: Health status decline; noncompliance with diet or medications; available medical interventions not being well suited for the residents; and family consideration of an out-of-town trip. The paper also reports barriers (family, staff, and disease process) and facilitators to calling the question of possible dying, including families having a sense of treatments they would like to avoid and having the opportunity to talk through options. Findings are discussed in light of basic assumptions of social construction. Implications for social workers include helping residents, families, and staff anticipate and address the possibility of dying, and to reflect these discussion in care plans, as well as the need to be available to help residents and family members with psychosocial issues related to living and dying in the nursing home setting, including the profound issues that can be provoked or exacerbated by resident health status decline and possible dying.     

Patterns of practice: An exploratory factor analysis of child and family social worker skills

There is relatively little research on the communication skills that social workers use in direct practice with families. This study explores patterns of practice skill found in child and family social work home visits. The study analysed 127 practice interactions in family homes, coding for seven dimensions of worker skill using a coding framework drawn from motivational interviewing. Exploratory factor analysis was employed to establish patterns of skill within the data and to group key dimensions of skill. The findings make two contributions. First, three fundamental dimensions of good practice emerged, which we characterize as care and engagement, good authority, and support for behaviour change. Second, in exploring the relationship between “care” and “control” elements of social work, skilled social workers were able to combine good authority and empathic engagement, whereas those who were less skilled in use of authority were also less good at engagement. This contributes to debates about care and control in social work. The usefulness of these dimensions for conceptualizing practice in child and family social work is discussed and directions for further research are suggested.     

Vital Conversations with Family in the Nursing Home: Preparation for End-Stage Dementia Care

Family members of persons with advanced dementia may be asked to make complex treatment decisions without having adequate knowledge regarding the risks and benefits. This 6-month, prospective, randomized trial tested the effect of an intervention consisting of a face-to-face, structured conversation about end-of-life care options with family members of nursing home residents with advanced dementia. A comparison group received only social contact via telephone. Structured conversations between a palliative care team and intervention group family members included goals of care and how best to achieve those goals, and provision of psychosocial support. Psychosocial support was also provided via telephone at three 2-month intervals. Family members participated in three telephone interviews: baseline, 3, and 6 months. Specific advance directives for persons with dementia were extracted from medical records. Results showed that intervention families had higher satisfaction with care than comparison families at the 6-month time point, and they were more likely to have decided on medical options listed in residents' advance directives (Do Not Resuscitate, Intubate, Hospitalize) over time. Study findings reinforce the need for increased education and support for families around issues of end-of-life care decisions for advanced dementia.     

Foster children: a longitudinal study of placements and family relationships

Foster children's family relationships have been one of the themes in a longitudinal study, starting with a disadvantaged group of children, 0–4 years of age when taken into care and placed in a children's home in Sweden. Seven rounds of data collection were carried out; the last two when the children were young adults. This article is about those 20 children in the study group who, in addition to temporary residential care at an early age, have experiences from foster care, either for the remainder of their childhood or before or after a period of reunion. Placement history is put in relation to family relationships, i.e. relationships to birth family and foster family. The categorisation in secure and insecure relationships or attachment patterns is based on interviews with the young adults, with a retrospect of previous relationships. The connection between placement history and family relationship is not obvious in this high-risk group. However, inclusive attitudes from the foster family towards the child's family promote continuity and a sense of security, also in periods of reunion or re-placement, and facilitate foster children's hard work in coming to terms with their family background and finding their own way.     

Everybody needs good neighbours: an evaluation of an intensive project for families facing eviction

This paper presents details of a largely qualitative evaluation of an intensive multi‐method Project, with a residential component, which aims to help families facing eviction to overcome their housing‐related difficulties. The families served by the Project had a host of other problems related to parenting, with child care and protection issues, addictions and mental health difficulties figuring prominently. Just over half the referrals came from the local authority housing services, with nearly all the remainder coming from the social work department. The majority of families made good progress, but in some cases it proved harder to have an impact on parenting than on tenancy‐related matters. Nevertheless, the Project was deemed to have helped some families stay together or be reunited, resulting in substantial financial savings for social work services. Crucial ingredients were good management, stable staff, shared ‘ownership’ by other agencies, a repertoire of challenging methods, and a holistic approach.     

Admission to Nursing Homes in Taiwan

The population of Taiwan is facing a radical ageing process. A proportion of the growing number of people aged 65 and over is expected to need nursing home care. This research concerns the family context of decision‐making in the process of admission to a nursing home in Taiwan. Employing survey data from interviews with elderly people in nursing homes (235 interviews) and their carers/key families (265 interviews), the factors affecting their views about admission were explored. Bivariate analysis and a logistic regression model were also used to examine perceptions of alternatives to nursing home care among family members with elderly relatives in nursing homes. Most elderly people in Taiwan are cared for in their own homes by their families but, in some circumstances, entry to a nursing home seemed inevitable. This research found that the decisions were taken mainly within a family context. The adult children of the elderly people, carers/key families’ preferences and the availability of carers influenced the decision. Apart from the important need factors of elders, families’ views about alternatives to nursing homes were significantly influenced by their preferences. This study has important implications for long‐term care in Taiwan. It is hoped that this will be needs‐led, both by elderly people and their families.     

Supporting families living with parental substance misuse: the M‐PACT (Moving Parents and Children Together) programme

The Moving Parents and Children Together (M‐PACT) programme is one of the growing number of interventions tailored to meet the multiple and complex needs of children and families affected by parental substance misuse. This paper pulls together the qualitative findings from 13 evaluated M‐PACT programmes in England. Sixty‐four families attended an M‐PACT programme, including 82 children and 75 adults. Qualitative data were collected from 37 children, 36 adults and over 30 group facilitators. Six themes are discussed: engaging with M‐PACT, shared experiences, understanding addiction, changes in communication, healthier and united families, and ending M‐PACT. The majority of families benefitted in a range of ways from the programme: meeting others who were experiencing similar problems, greater understanding about addiction and its impact on children and families improving communication within the family. In many families there was more openness and honesty, stronger relationships and more time as families, and a reduction in arguments and conflict. The key findings are discussed in terms of the potential for interventions of this kind to reduce family‐related harm from parental substance misuse.     

Helping families where parents misuse drugs or alcohol? A mixed methods comparative evaluation of an intensive family preservation service

Option 2 is an intensive family preservation service for families with serious child protection concerns related to parental misuse of drugs or alcohol. A previous evaluation indicated that it reduced the number of children entering care and, as a result, produced cost savings; however, little data were gathered from families. This study involved interviews with 15 families (46 children) who had received the service, and a comparison group of 12 families (28 children) referred but not provided the service due to no workers being available. Outcomes and experiences were compared, on average, 5.6 years following referral. Findings included a significant reduction in children entering care, and improvements in relation to substance misuse, parental well‐being and family cohesion. There was no difference in emotional and behavioural welfare of children. Qualitative accounts were very positive about the impact of the service, identifying effective engagement of parents and key elements of good practice in supporting families to change. The findings provide additional support for suggesting that high quality, intensive interventions with families affected by parental substance misuse can be effective. Key lessons for current attempts to deal with the increase in children entering care and the English government's ‘troubled families’ initiative are considered.     

Environmental hazards and the health status of women and children in a riverine community in Nigeria: Nikrowa in Edo State

Nikrowa is a riverine village located in Ovia North-East Local Government Area of Edo State. This paper examines the relationship between the environment and the health status of women and children in the village. Data used in this essay were obtained mainly in focus groups from a study of women and health service utilization in Nikrowa. Women in Nikrowa farm, fish, collect water and firewood, and process and prepare food. They also bear many children. Their hard physical labor causes them to suffer continuous body aches and pains. Environment-related illnesses such as malaria, measles, dysentery, and diarrhea are prevalent among children. The geographical isolation of Nikrowa limits access to modern health care facilities, so traditional therapies are used to treat prevailing illnesses. It is suggested that women have access to fertilizers in order to improve soil fertility and agricultural yields. Fuelwood and adequate and safe water supplies should be made readily available to women. Moreover, access roads to rural areas should be improved to facilitate transport to modern health care facilities, and rural primary health care facilities should be helped to provide efficient services by providing trained staff and ensuring regular supplies of drugs.     

A Study Exploring Risk Management Issues Among Volunteers in an Oncology Support Program

ABSTRACT. Risk management and challenges of volunteer roles in an oncology support program in Montreal, Canada, were explored using a phenomenological approach involving 65 service volunteers. Fourteen focus groups were held representing oncology services in the hospital and the wellness center. Self-reported questions were administered to assess the risks perceived by the volunteers. Findings revealed 4 major themes: comfort level, daily frustrations, risk and environmental issues, and suggestions. Suggestions included: better communication with staff, a safer health-related environment, and improved role-specific training to mitigate the risks. Additionally, for each group, 1 specific change was implemented during a 6-month period. Health care professionals should focus on job-training issues to address safety, comfort level, and role capacity. Future research should investigate an enhanced training curriculum with strategies to address concerns about risk management. Volunteers who are better equipped to perform their roles will be able to offer a higher quality of service to patients and families.     

Go to the Hospital or Stay at Home? A Qualitative Study of Expected Hospital Decision Making Among Older African Americans With Advanced Heart Failure

To address the need for more information concerning hospital decision making, we conducted in-depth interviews among African Americans with heart failure and their family caregivers (n?=?11 dyads). Using a case scenario, we asked participants about their anticipated hospitalization decisions. Most patients indicated that they would seek care to avoid further deterioration or death from their worsening condition. Many family caregivers anticipated having an active influence on hospitalization decisions. Findings suggest that social workers should encourage the development of adequate home-based services, recognize diverse communication styles, and use this information to facilitate medical decision making by these patients and their caregivers.