When 'Being There' Is Disallowed: Disruptions to Knowing and Caring During COVID-19 Visitor Restrictions.

This qualitative study explored the accounts of five health professionals working in hospitals in Hamilton, Ontario, Canada who provided end-of-life care during the COVID-19 pandemic. The study goal was to understand how palliative care providers experienced and responded to the significant change in family presence when visitors were restricted to slow the spread of the virus. Identified was the loss and disruption of important forms of knowing including observational and embodied knowing. Family members' knowledge of how their person was faring was curtailed, as was providers' capacities to know families personally. Family members' less obvious needs did not come forward as readily in the absence of informal encounters with providers. Constraints on knowing and embodied actions often meant phone and video meetings failed to provide meaningful connection. Providers adapted their practice in a range of ways, including by offering verbal and visual images of the person in the setting, paying attention differently, and conveying to family members their knowledge of patients as individuals. The changes and challenges health providers remarked on and the ways they adapted and extended themselves reveal in a new way how the regular presence of family in the care setting shapes the quality of end-of-life care.

Problem Solving Therapy for Home-Hospice Caregivers: A Pilot Study.

This pilot study examined the effects of Brief Problem-Solving Therapy on caregiver quality of life, depression, and problem-solving in family caregivers of hospice patients. Thirty-seven family caregivers to home-based hospice patients (mean age 62.8 [SD = 12.32]) were randomized to the study group (PST-Hospice), for a 45 minute per week/5 week intervention or comparison group of usual care plus caregiver education (UC + CE). The severity of depressive symptoms, caregiver quality of life and problem-solving functioning were assessed at baseline and follow-up. At post-test, the PST-Hospice condition had significantly higher scores on caregiver quality of life compared to UC + CE. On the Social Problem Solving Inventory-Revised Short Form (SPSI-R) measure, PST-Hospice scores clinically improved as compared to UC + CE on Positive Problem Orientation and Rational Problem-Solving subscales. In addition, this pilot study found that brief problem-solving treatment delivered by a hospice social worker appears to be an acceptable and feasible tool for routine use in the home-hospice setting.

A Practitioner's Guide to End-of-Life Intimacy: Suggestions for Conceptualization and Intervention in Palliative Care.

Sexuality and intimacy, including contact, tenderness, and love, are important at every life stage. Intimate expression is especially vital at the end of life, when relationships with loved ones are time limited. Unfortunately, care providers often ignore the potential need for sexual expression, especially at the end of life. In this article, we consider current research on sexuality and end-of-life care and situate these two fields in an ecological framework. We explore how end-of-life sexuality and intimacy can be supported by practitioners in multiple nested contexts and provide suggestions for theoretically-driven interventions. We also provide reflexive considerations for practitioners.

Navigating the Liminal Space: Trauma, Transition, and Connection in Bereaved Carers' Experiences of Specialist Palliative Care in Western Sydney.

Caregiving at the end-of-life has been associated with a range of physical, spiritual, social, and psychological outcomes, and influenced by encounters with providers of specialist palliative care. The purpose of this qualitative study was to explore experiences of bereaved carers of people with a life-limiting illness, in the context of care provided through a Western Sydney supportive and palliative care service. Thirteen bereaved caregivers participated in semi-structured, in-depth interviews. Transcripts were analyzed using a thematic approach, informed by thematic networks. Four domains appeared to mediate carer experiences: confrontations with trauma, suffering, and death; navigating transitions and boundaries and the caregiving role as liminal space; encountering connection in formal care contexts; and negotiating system issues. This study is one of the first to explore caregiver experiences within a low socioeconomic population in Western Sydney and provides a nuanced understanding of factors which may shape experiences of palliative care. Findings suggest that ongoing attention to the cultivation of skilful practitioners is warranted; able to companion caregivers in a manner attuned to the potential for trauma in the context of expected death. Additionally, findings call for investment in specialist sites of care alongside greater attention to public health approaches to palliative care.

Striving for balance between caring and restraint: young adults' experiences with parental multiple sclerosis.

AIMS AND OBJECTIVES: To explore and describe how young adults between 18-25 years of age experienced growing up with a parent with multiple sclerosis and how these experiences continue to influence their daily lives. BACKGROUND: Chronic parental illness is occurring in about 10% of families worldwide, but little is known about how the children experience growing up with a parent with multiple sclerosis during their childhood and into young adulthood. DESIGN: We chose a qualitative design using a phenomenological approach based on Giorgi. METHODS: Exploratory and open-ended interviews with 14 young adults were conducted. RESULTS: The essence of the phenomenon of having a parent with multiple sclerosis was synthesized into 'Striving for balance between caring and restraint' from two themes 'caring' and 'restraint' and eight subthemes. Participants' experiences of caring for parents with multiple sclerosis continued influencing their other close relationships, in which they tended to assume responsibility while concealing some of their feelings and desires. Most participants showed restraint among parents with and without multiple sclerosis, friends and partners. CONCLUSION: It seems that one of the greatest challenges of having a parent with multiple sclerosis is achieving a balance between caring for others and asserting one's own desires. RELEVANCE TO CLINICAL PRACTICE: Healthcare professionals can support the family by encouraging family members to participate in consultations and to assist the parents in providing information about multiple sclerosis and its symptoms to the children. Parents might need assistance in applying for help with domestic chores or referrals to support groups for their children or other family members.

Transnational Caregiving for My Father: An Opportunity and a Blessing.

Transnational caregiving can be daunting, yet it often brings out the strengths of the caregiver that he or she may not have been aware of. Thus, it is a wonderful opportunity to know oneself and use those strengths to become better in other areas of life. Transnational caregiving is also a blessing, in that one can still continue to provide care for a loved one by surmounting the barriers of geographical distance. To transform what often is a challenging situation into a blessing, a fresh eye is needed to seek different ways of fulfilling the needs of the loved one by focusing on one thing: How can the caregiver, in his or her individual capacity, make a difference in the quality of life of the family member? This article, while relating personal experience in caring for a parent, traverses these issues.

Examining the Experiences of Fathers of Children with a Life-Limiting Illness.

Families who have a child diagnosed with a life-limiting illness (LLI) face substantial challenges resulting from the complexity and devastating impact of the condition and potential closeness of death. The experiences of fathers of a child with LLI have been understudied; therefore, this study explored the stresses, experiences, and strategies of these fathers, including their perceptions about support needs. Based on grounded theory, in-depth semi-structured interviews were conducted with 18 fathers of children with LLI. Six fathers had experienced the death of their child. The overarching themes were stresses, means of coping, and perceived needs for support. Generally, fathers in this study struggled relative to discursive and internalized notions of fathers as providers and protectors for their children, combined with an inability to ease their child's vulnerability to LLI. Participants were engaged in the care of their child with LLI, but several felt marginalized by health care providers in care planning and staff/family communication. Some fathers recognized and valued their support network while others had few supports. Some described personal growth and desired to help other fathers. Practice implications and recommendations include renewed application of family-centered care, overcoming presumptions about fathers' roles, and recognizing the impact of LLI beyond physical health.

Identities in Transition: Women Caregivers in Bereavement.

Population aging and longevity due to medical advances over the past few decades have meant that the approximately 44 million caregivers in the United States and eight million caregivers in Canada must provide more intensive levels of care and for longer periods of time. Consequently, caregivers are often profoundly affected by their caregiving role in emotional, psychological, physical, and financial ways. Thirty years of research on this population have helped to create a caregiver profile and identify the significant challenges for caregivers. One area explored to a much lesser extent is the postcaregiving period, when the caregiver transitions into a period of bereavement. This period can be particularly challenging for caregivers given the commitment inherent in the caregiving process. Research has shown that the emotional reactions of caregivers as well as practical challenges do not end with the death of the care recipient. In fact, complex realities, tensions, and responses continue well after the death into the postcaregiving period. This study of bereaved women caregivers explored their lived experiences in the postcaregiving phase. One central theme emerged and suggested that the experience of caregiving had an effect on the caregivers' identities, which then influenced their bereavement processes and experiences.

"Live It to Understand It": The Experiences of Mothers of Children With Autism Spectrum Disorder.

Mothers of children with an autism spectrum disorder (ASD) variably experience challenges in their caregiving role. This ethnographic study examined the caregiving experiences of mothers of a young person with ASD (aged ≤25 years). Semistructured interviews were conducted with 85 mothers across three Canadian regions. A follow-up subsample of 10 mothers took part in participant observation sessions in the home and/or other environments within the community. Analysis yielded themes that depicted the following: redefining child and family aspirations, forging a shifted identity, and the need to "live it" to understand mothering a young person with ASD. Supports and services were perceived to be required but often insufficient to meet the needs. Findings identify a range of challenges, lessons learned, and a reconfigured sense of mothering. An emerging model of mothering a child with ASD is presented. Implications for practice, policy, and research are offered.

Informal caregivers of patients with disorders of consciousness: experience of ambiguous loss.

PRIMARY OBJECTIVE: This study aimed at better understanding of the complex psychological process underlying the demanding situation of taking care of a relative with disorder of consciousness (DOCs). RESEARCH DESIGN: This is a qualitative study based on the grounded theory constant comparative method. METHODS AND PROCEDURES: Narratives of informal caregivers were collected through in-depth interviews with a psychologist. A three-step coding scheme was applied: coding of narratives to label the specific contents; organization of codes into sub-categories and categories; and theoretical coding to describe the relation between categories. MAIN OUTCOMES AND RESULTS: Twenty informal caregivers participated in one in-depth interview between December 2011 and May 2012. Four major themes emerged: Another person with past in common; Losing and finding myself; Old and new ways of being in relationship; and Dealing with concerns. These themes represent caregivers' efforts to deal with the situation in which their relative is at the same time present and absent. The core salient feature emerging from all these themes is the experience of ambiguous loss. CONCLUSIONS: Features of ambiguous loss that emerged in this study could guide clinicians' interventions to support adjustment of caregivers of patients with DOCs.

What do relatives experience when supporting someone in early psychosis?

OBJECTIVES: In the United Kingdom (UK), the government has set out priorities to support relatives and carers. Despite this, many relatives of people experiencing psychosis continue to feel unsupported by mental health services. This may be due to lack of funding, high caseloads for mental health professionals, or due to a lack of understanding of what relatives experience as a result of their family member's psychosis. This research aimed to explore relatives' experiences of supporting a relative in early psychosis. DESIGN: Thematic analysis was used to conduct an in-depth study of relatives' experiences of supporting a family member in early psychosis. METHODS: Eligible individuals were recruited via local National Health Service Early Intervention Teams and other carer support agencies. Four focus groups were conducted, each with a range of five to seven participants. RESULTS: Four key themes 'reflecting relatives' understanding and management of psychosis were identified: 'Psychosis from the relatives' perspective'; 'Relatives' fight with the mental health 'system'; 'Is anybody listening? Does anyone understand?'; and 'Relatives' coping'. Clinical implications of these themes are discussed. CONCLUSIONS: This study has clear implications for improvement in how relatives are supported in the United Kingdom, such as; clearer guidance for staff about confidentiality, treating relatives as partners in care and providing better quality information for relatives. PRACTITIONER POINTS: Continue to improve the Care Plan Approach process to include relatives as partners in care. Information available about psychosis needs to be clear and, where possible, clarify the processes and protocols by which services operate and how to access appropriate help. Move away from simplistic rules about confidentiality and formalise procedures to allow relatives and carers access to the information they need, without impeding service users' rights. For example, providing additional training for professionals such as Rethink's 'Carers and Confidentiality' online resource (http://www.carersandconfidentiality.org.uk/). Improved support, supervision and training are needed for staff to deal with relatives' distress and the impact of psychosis. Relatives' experiences of services is more positive in specialist Early Interventions Services for psychosis, than in other health service teams.

Team-based volunteerism with the seriously ill: a qualitative analysis from 10 volunteers' perspectives.

Volunteers offer means through which social workers may extend their ability to support individuals with serious illnesses near the end of life. This study explored the experience of volunteers on teams organized initially as a grassroots movement in response to stigmatized and often socially isolated people with HIV/AIDS dying in the community. Volunteer care teams later expanded to individuals with other serious illnesses. This model spread as a means of meeting the growing need for practical support for seriously ill homebound individuals. Yet, little has been reported in the scientific literature about the interworkings of these teams and their optimal level of functioning. Qualitative inquiry, in the form of semi-structured interviews, explored perspectives of 10 volunteers with experience in volunteer team caring and identified the social processes that shaped their work. The volunteers discussed balance between positive life meaning gained from volunteer work, lessons learned, and negative aspects of a volunteer team approach to caring for the seriously ill in the community. Further investigation is warranted to validate the volunteer care team approach as a cost-effective tool to help seriously ill individuals and caregivers.

Problem-Focused Coping: Skipped-Generation Caregivers Affected by HIV/AIDS in Vietnam.

In this article, we examine skipped-generation caregivers who foster their grandchildren orphaned by HIV/AIDS in Vietnam. We investigated the challenges facing this population and the ways in which grandparents handled their trials on behalf of their families. Specifically, how did caregivers make sense of their roles, and how did these meanings inform their coping strategies? We conducted in-depth qualitative interviews with 21 older caregivers and 7 key informants and selected 5 caregivers from the sample to complete participant observations. The participants understood coping as problem-focused coping; for example, by considering a set of caregiving-related activities that included providing childcare, making money, borrowing money, cooking, and doing other daily chores. The voices of older caregivers must be a vital component to influence and inform service organizations and HIV sectors working in Vietnam. Based on a deeper understanding of the caregiving process, we outline implications for service development within the area of HIV caregiving.

The process of adult day service use.

The objective of this study was to examine why and how families and older adults utilize adult day services. The current study included three months of participant observation in one rural and one suburban adult day service program in an upper-Midwestern region of the United States as well as semi-structured interviews with 14 family members of clients and 12 staff members from these programs. Several key constructs emerged that organized the multiple sources of qualitative data including programmatic philosophy, positioning, and environment of ADS; clients' and family members' reasons for use; the process of ADS use by families and clients; and pathways to family/client psychosocial and client functional outcomes. A number of inter-related themes emerged within each construct. The constructs identified and their potential associations among each other were used to expand upon and refine prior conceptualizations of ADS to frame future clinical and research efforts.