Care for bereaved families

Supporting Transition to the Bereaved Community After the Death of a Child.

Series Editor's Foreword Robert A. Neimeyer Preface David W. Kissane & Francine Parnes List of Contributors Part 1: Overview of the Clinical Development of Bereavement Care for Families Chapter 1. Family Grief David W. Kissane Chapter 2. Conceptual Framework for Family Bereavement Care: Strengthening Resilience Froma Walsh Chapter 3. The Family with Chronic Physical Disorders: An Integrative Model John Rolland Chapter 4. The Family With Mental Illness Peter Steinglass and Tammy Schuler Chapter 5. Ethical Dimensions of Family Bereavement Care Tomer T. Levin and Marguerite Lederberg Part 2: Grief Therapy with Families - A Practical Approach to Care Delivery Chapter 6. Assessing Bereaved Families Talia I. Zaider Chapter 7. Therapist Techniques in Family Work David W. Kissane and Isabelle Dumont Chapter 8. Culture and Grief in Families David W. Kissane, Bridgette Boucher and Francesca Del Gaudio Chapter 9. An Account of Family Therapy in Bereavement: One Mother's Dying Legacy for her Family Su Jin Kim Part 3: Family Grief Therapy in Particular Circumstances Chapter 10. Family Therapy in the Context of Traumatic Losses Darcy Harris and Stephanie Rabenstein Chapter 11. Family Therapy Following Suicide Diana C. Sands and Julian L. North Chapter 12. Family Therapy for the Unresolved Grief of Ambiguous Loss Pauline Boss and Carla M. Dahl Chapter 13. Perinatal Loss: Unforeseen Tragedy With On-going Grief Trajectories Nicole Alston and Valerie R. Samuels Chapter 14. Family Bereavement Care after the Death of a Child Lori Wiener and Cynthia A. Gerhardt Chapter 15. Care of Families With Children Anticipating the Death of a Parent Anna C. Muriel Chapter 16. Family-Centered Approach to Helping Older Grieving People J. Shep Jeffreys Part 4: Future Directions Chapter 17. Families 'At Risk' of Complicated Bereavement Wendy Lichtenthal and Corinne Sweeney Chapter 18. The Family with Socioeconomic and Cultural Issues Sarah Gehlert, Teresa Moro and Lailea Noel Chapter 19. Future Development and Dissemination of Models of Family Bereavement Care David W. Kissane and Talia I. Zaider Index

Support groups are established psychosocial treatment modalties in which clients address issues resulting from particular problems or diagnoses. In the past decade, the support group format has been widely adopted by community health clinics for persons diagnosed with the acquired immunodeficiency syndrome (AIDS). As mainstream health systems assist more people with AlDS, initial expertise developed from the gay and lesbian health care response to the human immunodeficiency virus (HIR believed to be the cause of AlDS) provides valuable information for all health care practitioners. This discussion of a long-term (5-year) AIDS support group examines 6 content themes: marginity,making choices, coping with the emotional roller coaster, premature confrontation of life issues, living with a chronic illness versus dying with a terminal disease, and death and dying. The authors inform their observations through examining the support group literature for persons living with HIV and other chronic or terminal illnesses.

The objective of this review was to synthesize the experiences of health professionals who have experienced grief as a result of a pediatric patient dying. There has been some research into health professionals' grief experiences associated with the death of pediatric patients, but there has not been a review that synthesizes the findings of these experiences. Other related reviews have focused on prenatal, perinatal or adult deaths or the coping strategies employed by health professionals. This review highlights the complexities of experiences faced by pediatric health professionals. Qualitative studies involving pediatric health professionals working in any healthcare setting who had experienced grief from the death of a patient were considered for inclusion. Studies were conducted in any country, at any time and published in English. The search was conducted in PubMed, CINAHL, Embase, PsycINFO, Scopus and ProQuest Dissertations and Theses. The search was completed in January 2019. The review followed principles of meta-aggregation in line with the JBI approach. Methodological quality assessment was based on representation of participants' voices and congruence between research methodology and both research question and analysis of data. Meta-aggregation led to three synthesized findings from 12 qualitative studies that met the inclusion and methodological quality criteria. Studies predominantly included nurses working in a hospital, with sample sizes ranging from six to 25 participants. The synthesized findings were physical, behavioral, psychological or spiritual symptoms; compounding grief; and alleviating grief. Physical, behavioral, psychological, or spiritual symptoms highlighted the various characteristics of grief experiences by health professionals. Compounding grief was the largest synthesized finding and incorporated the various factors that contributed to a poorer experience of grief. Alleviating grief showed the limited identified factors that improved the experience of grief. Methodological quality led to synthesized findings receiving a ConQual rating of low or moderate. The synthesized findings from this review highlight the varied reported experiences of grief in health professionals. The methodological quality and reporting of studies, however, led to decreased confidence in the synthesized findings and recommendations arising from this review. Healthcare professionals should be aware of the potential for experiencing grief when a patient dies and the compounding and alleviating factors associated with this. Further research could expand participant and language limitations, and improve methodological quality and reporting.

This review did not find the evidence required to show whether participation in online support groups was beneficial for women with breast cancer, because identified trials were small and of low or very low quality. Large, rigorous trials with ethnically and economically diverse participants are needed to provide robust evidence regarding the psychosocial outcomes selected for this review.

Background: The mortuary plays an important, under-recognized role in end-of-life care. A 'Life-affirming strategy' was introduced in the mortuary of a university hospital to enhance respect for the deceased and next-of-kin (NOK). Design: NOK who collected bodies in the mortuary of a university hospital participated in a survey. The satisfaction scores, needs and expectations were compared with a similar survey from 2015. Results: The overall experience for NOK improved significantly compared with 2015. The greatest improvement was achieved in 'mortuary environment', 'attitude of mortuary staff' and 'body viewing arrangement in the mortuary'. The perceived need for additional psychosocial support was significantly reduced. Conclusions: Results demonstrate success of the life-affirming strategy in enhancing end-of-life care for bereaved families. The person-centered approach modernizes and professionalizes mortuary services, with a positive impact on the deceased, NOK, mortuary staff, hospital administration and wider community.

BackgroundBecause of the nature of rare diseases with affected individuals being widely geographically dispersed, finding an in-person/offline support group itself can be a challenge. Affected individuals therefore turn to social networking platforms such as Facebook for online support groups.ObjectiveWe aim to put into perspective the opportunities Facebook offers as a tool for pediatric rare disease support groups by investigating its use, advantages, and limitations including privacy concerns. We analyze group accessibility and usage, advantages specific to rare diseases, perceived privacy, and views on using Facebook for communication between health professionals and parents, pharmaceutical companies, and study recruitment.MethodsWe contacted 12 Facebook support groups for 12 respective rare diseases with pediatric onset and invited group members to participate in a cross-sectional online survey.ResultsOf 231 respondents, 87.0% (n=201) of respondents were female, 12.6% (n=29) were male, and 0.4% reported another sex (n=1). Respondents’ mean age was 41.56 years (SD 9.375); 91.3% (n=211) of respondents were parents (183 mothers, 27 fathers, 1 other sex); 59.7% (n=138) reported a self-initiated search for the Facebook group, 24.2% (n=56) received recommendations from their health professionals, and 12.6% (n=29) recommendations from someone else affected by the disease. On average, support group members visited Facebook at least once a day, visited and passively participated (read/liked posts) several times a week, and participated actively (commented/posted) once a month. As much as 79.2% (183/231) agreed that they would like to have health professionals as members of the respective Facebook group. Group members expressed more concern about privacy issues on Facebook in general than in their respective Facebook support groups, with concerns mostly related to Facebook itself and nongroup members.ConclusionsOur study confirmed that Facebook enhances support group accessibility for parents of children with rare diseases. Group participants perceive a reduction and elimination of distance, a common challenge in rare disease, and Facebook support groups create an environment of perceived privacy. The group’s privacy setting can be a critical factor for active support group participation. Sharing personal information and pictures on Facebook is very common among group participants, which shows the importance of discussing and protecting children’s privacy rights in this context.Trial RegistrationGerman Clinical Trials Register DRKS00016067; https://www.drks.de/drks_web/navigate.do?navigationId=trial.HTML&TRIAL_ID=DRKS00016067

People with post-stroke dysphagia often require informal care from family to facilitate safe swallowing, modify food/drink or administer tube-feeds. Previous survey studies have found dysphagia may increase family caregiver burden. However, the experiences of family members in this population have not been fully explored. To explore family members' experiences of living with a spouse with post-stroke dysphagia. This exploratory qualitative study used one-to-one semi-structured interviews to explore family members' experiences. They were asked open questions about previous eating routines, dysphagia onset, their role and future hopes. Interviews were audio-recorded, transcribed and analysed thematically with an inductive approach to determine key features of family members' experiences. Five spouses aged 70-93 years participated. Their relatives' strokes happened 3 months to 3 years before the interview. Five themes were identified: 'I do all of it'; making sense of dysphagia; emotional responses; reflecting on relationships; and redefining lifestyle. It is important to consider family members' perspectives as they often provide vital care to loved-ones with dysphagia. In relation to eating and drinking, maintaining elements of previous routines seems important to families. Healthcare professionals should consider these when making recommendations for rehabilitation. Family members have differing perspectives of the comparative impact of dysphagia; patient and family priorities should be explored for healthcare professionals to provide better-targeted support. What is already known on the subject Informal caregivers, often spouses, play a vital role in supporting the health and well-being of older people with health conditions. The presence of post-stroke dysphagia may present increased challenges for the informal caregiver. There are limited studies qualitatively exploring the experiences of informal caregivers in this population. What this paper adds to existing knowledge Current health and social care provision for this population leaves informal caregivers feeling they have been left to manage dysphagia alone. Informal caregivers demonstrate a breadth of knowledge about their spouse's dysphagia, problem-solving effective solutions. Informal caregivers have a range of interpretations of the nature and cause of dysphagia; leading to miscommunication with health professionals and complex emotional responses. What are the potential or actual clinical implications of this work? Healthcare professionals might consider ways in which to support dysphagic patients' families later in their care pathway, through scheduling reviews or running dysphagia patient and family groups. Health and social care professionals and policymakers should learn from informal caregivers' expertise to promote better health and quality-of-life outcomes for the patient and caregiver. Equal, open conversations between health and social care professionals and patients/families on their understanding of dysphagia may help informal caregivers to better voice their concerns and support mutual understanding. This has implications for adherence to recommendations, psychological well-being and patient safety.

Nowadays, social activities in the real world (e.g., meetings, discussions, parties) are more and more popular and important to human life. As the number of contacts increases, the implicit social graph becomes increasingly complex, leading to a high cost on social activity organization and activity group formation. In order to promote the interaction among people and improve the efficiency of social activity organization, we propose a mobile social activity support system called GroupMe, which facilitates the activity group initiation based on mobile sensing and social graph mining. In GroupMe, user activities are automatically sensed and logged in the social activity logging (ACL) repository. By analyzing the historical ACL data through a series of group mining (group extraction, group abstraction) algorithms, we obtain implicit logical contact groups. We then use the sensed contexts and the computed user affinity to her logical groups to suggest highly relevant groups in social activity initiation. The experimental results verify the effectiveness of the proposed approach.

The future of health professions education: Emerging trends in the United States.

BackgroundDementia is a cause of disability and dependency associated with high demands for health services and expected to have a significant impact on resources. Care policies worldwide increasingly rely on family caregivers to contribute to service delivery for older people, and the general direction of health care policy internationally is to provide care in the community, meaning most people will receive services there. Patient safety in primary care is therefore important for future care, but not yet investigated sufficiently when services are carried out in patients’ homes. In particular, we know little about how family carers experience patient safety of older people with dementia in the community.MethodsThis was an explorative study, with qualitative in-depth interviews of 23 family carers of older people with suspected or diagnosed dementia. Family carers participated after receiving information primarily through health professionals working in dementia care. A semi-structured topic guide was used in a flexible way to capture participants’ experiences. A four-step inductive analysis of the transcripts was informed by hermeneutic-phenomenological analysis.ResultsThe ways our participants sought to address risk and safety issues can be understood to constitute protective practices that aimed to prevent or reduce the risk of harm and/or alleviate damage from harm that occurs. The protective practices relate to four areas: physical harm, economic harm, emotional harm, and relational harm. The protective practices are interlinked, and family carers sometimes prioritize one over another, and as they form part of family practice, they are not always visible to service providers. As a result, the practices may complicate interactions with health professionals and even inadvertently conceal symptoms or care needs.ConclusionsWhen family caregivers prevent harm and meet needs, some needs may be concealed or invisible to health professionals. To recognize all needs and provide effective, safe and person-centered care, health professionals need to recognize these preventive practices and seek to build a solid partnership with family carers.

BackgroundPersons with disabilities have a higher risk for and poorer outcomes of type 2 diabetes. Primary health care providers face several challenges in providing primary diabetes care for them. This study was conducted to explore the challenges faced by primary health care providers in delivering primary diabetes services to persons with disabilities.MethodsWe performed a qualitative research study by conducting in-depth interviews among 13 primary health care providers including medical officers, staff nurses, community health workers and a physiotherapist. We adopted a descriptive qualitative research approach to data collection and analysis.ResultsPrimary health care providers often could only prescribe medications to persons with diabetes by proxy due to poor accessibility of the facilities. They felt that these patients also had poor compliance to treatment. They felt that the lack of standard guidelines for diet and exercise for persons with disabilities prevented them from giving them appropriate advice on the same and even if they did, persons with disabilities would find it very difficult to adopt dietary changes and physical activity as they were dependent on others for even their daily activities. They also felt that they couldn’t perform annual screening tests due to lack of accessibility to higher facilities. Some primary care providers did local innovations such as formation of peer support groups, utilization of resources of other programs to reach out to persons with disabilities and innovative physical activity techniques to care for persons with disabilities. They recommended that there is a need for specific guidelines for management of diabetes among persons with disabilities, treatment of chronic diseases among persons with disabilities must be incentivized and there must be intersectoral coordination between social welfare department and health department to achieve the goal of care for persons with disabilities.ConclusionsPrimary health care providers faced substantial challenges in providing primary diabetes care for persons with disabilities. There is a need for an effective public health policy to address these challenges.

In 2004, the American Academy of Pediatrics (AAP) Board of Directors formed the Task Force on Mental Health and charged it with developing strategies to improve the quality of child and adolescent mental health* services in primary care. The task force acknowledged early in its deliberations that enhancing the mental health care that pediatricians and other primary care clinicians† provide to children and adolescents will require systemic interventions at the national, state, and community levels to improve the financing of mental health care and access to mental health specialty resources. Systemic strategies toward achieving these improvements are the subject of other publications of the task force: “ Strategies for System Change in Children's Mental Health: A Chapter Action Kit ” (chapter action kit),1 “Improving Mental Health Services in Primary Care: Reducing Administrative and Financial Barriers to Access and Collaboration,”2 and “Enhancing Pediatric Mental Health Care: Strategies for Preparing a Community.”3 The task force also recognized that enhanced mental health practice will require competencies not currently achieved by many primary care clinicians; in the policy statement “The Future of Pediatrics: Mental Health Competencies for Pediatric Primary Care,”4 the task force collaborated with the AAP Committee on Psychosocial Aspects of Child and Family Health to outline these competencies and propose strategies for achieving them. This report offers strategies for preparing the primary care practice itself for provision of enhanced mental health care services. The task force proposes incrementally applying chronic care principles to the care of children with mental health and substance abuse problems as primary care clinicians apply them to the care of children with chronic medical conditions such as asthma. Most primary care clinicians will find that significant gaps exist between their current practice and the proposed ideal. The task force offers guidance in … Address correspondence to Jane Meschan Foy, MD, Department of Pediatrics, Wake Forest University School of Medicine, Medical Center Blvd, Winston-Salem, NC 27157. E-mail: jmfoy{at}wfubmc.edu

The effects of a support group on selected psychosocial outcomes of bereaved parents whose child died from cancer

To investigate the influence of support groups on the family of risk newborn infants and on neonatal unit workers. We used a qualitative approach, and as theoretical basis, family-centered care. The study was conducted in the neonatal unit of Hospital Prontolinda, in Pernambuco, Brazil. From January to June 2004, 25 meetings were held by the family support group. Data were collected through the observations of participants and through tape-recorded interviews with 13 mothers, six fathers, two grandmothers and 16 healthcare workers. The interviews were submitted to speech content analysis (thematic modality). The analysis revealed that the support group to the family of risk newborns provided parents and family members with information, emotional support and strengthening so that they could come to terms with the birth of their child and his/her admission to the neonatal unit, in addition to enabling parents to take care of the newborn infant. There was interpersonal growth in the interaction between parents, family members, and healthcare workers. The support group to the family of risk newborns uses an approach that is based on family-centered care. These principles allow restoring parental competence, helping healthcare workers to respect values and feelings of family members, and establishing a collaborative work between parents and healthcare workers in the neonatal unit.