Posttraumatic Growth After Struggling With the Loss of a Parent in Young Adulthood.

This study aims to examine posttraumatic growth and its associations with parental bereavement among adolescents and young adults. Fifty-five young adults who had lost a parent to cancer at least 2 months earlier and were about to attend a support group at a palliative care service were recruited. Data was collected through questionnaires before support group participation, about 5-8 months after the loss and at a 6-month follow-up, about 14-18 months after the loss. The result shows that the young adults experienced posttraumatic growth, mostly in the domains Personal strength and Appreciation of life. Posttraumatic growth was associated with bereavement outcomes, especially life satisfaction, a feeling of meaning in future life and psychological health. The result is of value for health care professionals as it adds information about the importance of supporting constructive rumination to enhance the possibility to positive psychological change after a parent's death.

Higher Self-Esteem Associated With Less Symptoms of Anxiety and Depression Among Young Adults After the Loss of a Parent to Cancer-A Longitudinal Study.

Objective: The purpose of the study was to examine associations between self-esteem and symptoms of anxiety and depression among young adults who lost a parent to cancer. Methods: Older adolescents and young adults, aged 16 to 28 years, who had lost their parent to cancer and had accepted an invitation to join a support group, completed a questionnaire 5 to 8 months after the loss and a similar questionnaire about 10 months later (follow-up). Of a total of 77 young adults who participated in the study, 56 completed both questionnaires. Self-esteem was measured with the Rosenberg Self-Esteem Scale. Symptoms of anxiety and depression were measured with the Hospital Anxiety and Depression Scale. Univariate and multiple linear regression models were used to analyze the associations. Result: Self-esteem was significantly associated with symptoms of anxiety and depression at baseline and at follow-up. Conclusion: This study reveals that self-esteem is a valuable explanatory variable, and that it is associated with both symptoms of anxiety and depression in bereavement. This new knowledge could be used to guide future support to parentally bereaved young adults.

Poor Psychosocial Well-Being in the First Year-and-a-Half After Losing a Parent to Cancer - A Longitudinal Study Among Young Adults Participating in Support Groups.

The purpose of this study was to investigate variations in psychosocial well-being over time among young adults who participated in a support group after the death of a parent from cancer. Fifty-five young adults, aged 16-28 years, completed questionnaires that measured self-esteem, anxiety, depression, and life satisfaction at three time-points during the first year-and-one-half after the loss. Results indicated overall poor psychosocial well-being with few increases in psychological health over the study period, despite access to support and social networks. However, these resources may help to prevent major impairments in the participants' future lives.

Caregiver experience, health-related quality of life and life satisfaction among informal caregivers to patients with amyotrophic lateral sclerosis: A cross-sectional study.

AIMS AND OBJECTIVES: This study set out to describe caregiver experience, health-related quality of life and life satisfaction among informal caregivers to patients with amyotrophic lateral sclerosis and to explore factors associated with caregivers' health-related quality of life and life satisfaction. BACKGROUND: Knowledge about factors related to caregivers' health-related quality of life and life satisfaction is important for identification of those at risk for ill health and for development of support and care. DESIGN: A cross-sectional study. METHODS: Forty-nine informal caregivers and 49 patients were included. Standardised and study-specific questionnaires were used for data collection on caregiver experience (Caregiver Reaction Assessment), health-related quality of life (EuroQol Visual Analogue Scale, SF-36), life satisfaction (Life Satisfaction Checklist) and caregiver- and patient-related factors. Associations were explored by regression analyses. RESULTS: Both positive and negative caregiver experience were reported, and health-related quality of life and life satisfaction were below national reference values. Positive experience was associated with better and negative with worse mental health-related quality of life. Factors related to informal caregivers (sex, age, living conditions) and patients (anxiety and/or depression) were related to caregivers' health-related quality and life satisfaction. CONCLUSION: The results indicate the need to consider the individual caregiver's experience when planning services, care and support. It is important to adopt person-centred care, not only for patients but also for their informal caregivers, as factors related to both parties were associated with the informal caregivers' health-related quality of life and life satisfaction. RELEVANCE TO CLINICAL PRACTICE: Our study suggests that promoting positive experience and providing services and support to reduce negative aspects of caregiving might be important strategies for healthcare personnel to improve informal caregivers' health.

Bereavement stressors and psychosocial well-being of young adults following the loss of a parent - A cross-sectional survey.

PURPOSE: The knowledge about young adults who have lost a parent to cancer is limited, and to reach a broader understanding about this group, this study used the Dual Process Model of Coping with Bereavement (Stroebe and Schut, 1999) as a theoretical framework. The purpose of this study was to describe loss- and restoration-oriented bereavement stressors and psychosocial wellbeing of young adults following the loss of a parent to cancer. METHOD: This survey used baseline data from a longitudinal study. Young adults, aged 16-28 years, who lost a parent to cancer more than two months earlier and agreed to participate in support groups held at three palliative care services in Sweden, responded to a comprehensive theory-based study-specific questionnaire. RESULTS: Altogether, 77 young adults (64 women and 13 men) answered the questionnaire an average of five-to-eight months after the loss. Twenty percent (n = 15) had not been aware of their parent's impending death at all or only knew a few hours before the death, and 65% (n = 50) did not expect the death when it occurred. The young adults reported low self-esteem (n = 58, 76%), mild to severe anxiety (n = 55, 74%), mild to severe depression (n = 23, 31%) and low life satisfaction. CONCLUSION: Young adults reported overall poor psychosocial wellbeing following bereavement. The unexpectedness and unawareness of the parent's imminent death, i.e., loss-oriented bereavement stressors, might influence psychosocial wellbeing. Despite these reports, restoration-oriented stressors, such as support from family and friends, helped them to cope with the loss.

Supporting in an existential crisis: A mixed-methods evaluation of a training model in palliative care.

BACKGROUND: Palliative care staff often report that they lack the skills and confidence to provide support during an existential crisis. Consequently, there is a definite need for a training program in this area. OBJECTIVE: Our aim was to investigate whether a training model could give palliative care staff increased knowledge, awareness, and preparedness-all useful tools for providing support. METHODS: A mixed-methods research design was used. Data were collected in four hospital-based palliative homecare teams in the Stockholm area. In total, 34 staff participated, representing different palliative care team professions. Before and after the intervention, a questionnaire with a 9-point Likert-type scale was completed (n = 34). Qualitative focus group discussions were conducted a month after the intervention (25 participants). These were recorded, transcribed, and analyzed using qualitative content analysis with a manifest focus. RESULTS: In the quantitative part of our study, the participants showed significantly increased perceived knowledge, awareness, and preparedness in every aspect (p < 0.001 for all items). The focus group discussions revealed a process that made it possible to apply new knowledge and insight. The process began with theoretical knowledge and, through care-related reflection and self-reflection, the knowledge base gradually developed and provided useful skills and increased job satisfaction. SIGNIFICANCE OF RESULTS: The team-based "TrainingModel Sand/TER" can be performed without excessive effort and contribute to improved competence in providing support during an existential crisis. It is particularly useful for staff working in clinical palliative care.

Sickness absence following breast cancer surgery: a two-year follow-up cohort study.

RATIONALE AND AIM: Most women of working ages with limited breast cancer (BC) have returned to work within the first year after diagnosis. However, little is known about what is happening during this year regarding sickness absence and return to work. Also, the knowledge is very limited about the occurrence of part-time sickness absence after BC diagnosis. Therefore, the aim of this study was to describe occurrence, extent and length of SA during a two-year follow-up after BC surgery and to analyse the association between being SA and type of cancer treatment. METHODS: In this prospective cohort study, 497 women responded to questionnaires about different aspects of sickness absence at six occasions during two years after primary BC surgery (at baseline and after 4, 8, 12, 18 and 24 months). Treatment information was obtained from the National breast cancer register. Multinomial logistic regression was used to calculate odds ratios (OR) for likelihood of being sickness absent more than once. RESULTS: Two-thirds of the women were sickness absent at baseline; this proportion decreased, especially during the first eight months. At 24 months, 13% were sickness absent. Of all women, 27% never reported sickness absence and 14% were sickness absent at most of the six survey times. At eight months, many had shifted from full- to part-time sickness absence. Women with chemotherapy and/or advanced BC surgery had higher ORs for being sickness absent at most of the follow-ups. CONCLUSIONS: Most women returned to work within the first eight months after BC surgery and of those sickness absent after that, most had been part-time sickness absent. Thus, it is important to differentiate between part- and full-time sickness absence in future studies. Special attention should be paid to the impact of chemotherapy and type of surgery on the likelihood of being sickness absent.

Psychosocial Well-Being of Young People Who Participated in a Support Group Following the Loss of a Parent to Cancer.

Despite the evidence of unmet support needs among young people who have lost a parent to cancer, only a few support group initiatives have been reported. This observational prospective study explored the psychosocial well-being of young people who participated in support groups at a Swedish specialist palliative care setting. On three occasions, 29 participants, aged 16-28 years, answered questionnaires covering characteristics of the participants, circumstances of the losses, psychosocial well-being of the young people, and their own assessment of the support groups. The support groups attracted mostly young women who were often unprepared for the loss. The living arrangements differed between younger and older participants; however, the loss-related variables did not differ. Significant positive changes were found regarding a sense of meaning in their future life and life satisfaction. The helpfulness of the group was assessed as high/very high and the group brought a valuable fellowship with others in a similar situation. Universality and beneficial interactions were reported and strengthened psychosocial well-being developed over time. This change, according to the young people themselves, may be attributed to the group support. The findings are useful for planning interventions to support young people in bereavement in order to enhance their psychosocial well-being.

Life satisfaction of women of working age shortly after breast cancer surgery.

PURPOSE: To explore, among women of working age, satisfaction with life as a whole and with different life domains, and its associations with social and health variables, shortly after breast cancer surgery. METHODS: This cross-sectional study included 605 women, aged 20-63 years, who had had breast cancer surgery with no distant metastasis, pre-surgical chemotherapy, or previous breast cancer. Associations between LiSat-11 and demographic and social factors as well as health- and treatment-related variables were analysed by multivariable logistic regression. RESULTS: Compared with Swedish reference levels, the women were, after breast cancer surgery, less satisfied with life, particularly sexual life. Women working shortly after breast cancer surgery were more often satisfied with life in provision domains compared with the reference population. Although most included variables showed associations with satisfaction, after adjustment for all significantly associated variables, only six variables-having children, being in work, having emotional and informational social support, and having good physical and emotional functioning-were positively associated with satisfaction with life as a whole. The odds ratios for satisfaction were higher in most life domains if the woman had social support and good emotional and cognitive functioning. CONCLUSIONS: One month after breast cancer surgery, satisfaction with different life domains was associated primarily with social support and health-related functioning. However, this soon after surgery, treatment-related variables showed no significant associations with life satisfaction. These results are useful for planning interventions to enhance e.g. social support and emotional as well as cognitive functioning.

Can breast cancer register data on recommended adjuvant treatment be used as a proxy for actually given treatment?

PURPOSES: To study agreement between recommended adjuvant treatment after primary breast cancer (BC) surgery from the clinical based National Breast Cancer Register and initiated adjuvant treatment from medical records; factors associated with agreement; and reasons for discontinuation or change of planned treatment. METHOD: Included were 970 women who had undergone BC surgery, aged 20-63 years, living in Stockholm County, and literate in Swedish. EXCLUSION CRITERIA: Distant metastases, pre-surgical chemotherapy, and/or a previous BC diagnosis. Information on clinical tumor stage, surgical treatment, recommended adjuvant radiotherapy, chemotherapy, and endocrine therapy was obtained from the BC register. Type of initiated adjuvant treatments, if treatment plan was followed, and reasons for discontinuation were extracted from medical records. RESULTS: The register had high completeness and agreement was high, 94-96%, (κ 0.801-0.908) for all types of treatment. Disagreement regarding radiotherapy and chemotherapy was associated with having ≥1 lymph node metastases and more extended axillary surgery, and for radiotherapy also more extended breast surgery. There were no such associations with age, tumor size, or invasiveness. None of these factors were associated with disagreement regarding recommended versus initiated endocrine therapy. Endocrine therapy was most often discontinued (24%), mostly due to toxicity which was also the most common reason for discontinuation of chemotherapy. CONCLUSIONS: Swedish register data on recommended treatment has high validity in women aged 24-63 years, with limited BC, and demonstrates utility as a proxy for initiated treatment in this group. This is of interest since extracting data from medical records is resource demanding.

Parents' Stress and Coping Related to Children's Use of a Cochlear Implant: A Qualitative Study.

The aim was to increase understanding of parents' experiences of having a child with a cochlear implant (CI) and to explore how these related to children's use of CI. Twelve parents of children, full-time users or limited users of CIs, participated in the study. Qualitative content analysis showed that the parents of children who used their CI differed from the parents with limited users in how they handled stressors. Support from health care professionals was seen as insufficient. Parents need to get involved in dynamic processes in which health care resources promote parental coping.

Changes in importance of work and vocational satisfaction during the 2 years after breast cancer surgery and factors associated with this.

PURPOSE: The purpose of this study is to investigate how women, during the 2 years following breast cancer surgery, rate importance of work and vocational satisfaction, and baseline factors associated with rating over time. METHODS: A prospective cohort study of 692 women aged 20-63 included about 4 weeks after a first breast cancer surgery. Register data on treatment and data from six repeated questionnaires during a 2-year follow-up (at baseline, 4, 8, 12, 18, 24 months) were used in two-way mixed repeated analysis of variance and mixed repeated measures analysis of covariance. RESULTS: The women rated importance of work (m = 3.74; sd 0.88) (maximum 5) and vocational satisfaction (m = 4.30; sd 1.38) (maximum 6) high during the 2 years. Women with planned chemotherapy rated lower vocational satisfaction and especially so at 4 months after inclusion (F 1, 498 = 8.20; p = 0.004). Higher age, better physical, and mental/social work ability at baseline influenced rating of vocational satisfaction. Supportive colleagues was an important covariate that significantly affected ratings of importance of work as well as vocational satisfaction, i.e., women with better support rated on average higher on these outcomes. The effect of chemotherapy disappeared after including the abovementioned baseline covariates. CONCLUSIONS: Women diagnosed with breast cancer in the following 2 years rate importance of work and vocational satisfaction high, which are associated to lower work ability and social support. IMPLICATIONS FOR CANCER SURVIVORS: Work is a very important aspect in life also after a cancer diagnosis, which has to be acknowledged when discussing treatment and rehabilitation plans with women with breast cancer. Furthermore, workplace support needs to be assessed as this is an influential factor.

Sense of coherence, social networks, and mental health among children with a cochlear implant.

OBJECTIVE: The aim of this study was to explore the personal and social resources of children with a cochlear implant from a child's perspective. METHOD: This descriptive cross-sectional study included 19 children with cochlear implants, aged 9-12 years. Data was collected, using the children's sense of coherence (CSOC) scale, the Network map, and the strengths and difficulties questionnaire (SDQ). The data was analyzed using descriptive and correlation statistics. RESULTS: Most children had a strong sense of coherence. School life was an important arena for their social network. The mental health was comparable to normal hearing children. Still, some of the children with implants had low SOC and poor mental health. High SOC and closeness of the social network, especially in school, were associated with good mental health. CONCLUSION: This study shows that Swedish school-aged children with cochlear implants as a group have access to personal and social resources as strong sense of coherence and social networks. Still, there are individual children with psychosocial problems who need support and treatment.

Patient-centered handovers between hospital and primary health care: an assessment of medical records.

BACKGROUND: Handovers between hospital and primary healthcare possess a risk for patient care. It has been suggested that the exchange of a comprehensive medical record containing both medical and patient-centered aspects of information can support high quality handovers. OBJECTIVE: The objective of this study was to explore patient handovers between primary and secondary care by assessing the levels of patient-centeredness of medical records used for communication between care settings and by assessing continuity of patient care. METHODS: Quantitative content analysis was used to analyze the 76 medical records of 22 Swedish patients with chronic diseases and/or polypharmacy. RESULTS: The levels of patient-centeredness documented in handover records were assessed as poor, especially in regards to informing patients and achieving a shared understanding/agreement about their treatment plans. The follow up of patients' medical and care needs were remotely related to the discharge information sent from the hospital to the primary care providers, or to the hospital provider's request for patient follow-up in primary healthcare. CONCLUSION: The lack of patient-centered documentation either indicates poor patient-centeredness in the encounters or low priority given by the providers on documenting such information. Based on this small study, discharge information sent to primary healthcare cannot be considered as a means of securing continuity of patient care. Healthcare providers need to be aware that neither their discharge notes nor their referrals will guarantee continuity of patient care.

Health care professionals' perspectives of the experiences of family caregivers during in-patient cancer care.

Being a family member of a patient who is being treated in an acute care setting for cancer often involves a number of challenges. Our study describes Norwegian cancer care health professionals' perceptions of family members who served as family caregivers (FCs) and their need for support during the in-hospital cancer treatment of their ill family member. Focus group discussions were conducted with a multidisciplinary team of 24 experienced social workers, physicians, and nurses who were closely involved in the patients' in-hospital cancer treatment and care. Drawing on qualitative hermeneutic analysis, four main themes describe health professionals' perceptions of FCs during the patient's in-hospital cancer care: an asset and additional burden, infinitely strong and struggling with helplessness, being an outsider in the center of care, and being in different temporalities. We conclude that it is a challenge for health care professionals to support the family and create room for FC's needs in acute cancer care. System changes are needed in health care, so that the patient/FC dyad is viewed as a unit of care in a dual process of caregiving, which would enable FCs to be given space and inclusion in care, with their own needs simultaneously considered alongside those of the patient.

Improving patient discharge and reducing hospital readmissions by using Intervention Mapping.

BACKGROUND: There is a growing impetus to reorganize the hospital discharge process to reduce avoidable readmissions and costs. The aim of this study was to provide insight into hospital discharge problems and underlying causes, and to give an overview of solutions that guide providers and policy-makers in improving hospital discharge. METHODS: The Intervention Mapping framework was used. First, a problem analysis studying the scale, causes, and consequences of ineffective hospital discharge was carried out. The analysis was based on primary data from 26 focus group interviews and 321 individual interviews with patients and relatives, and involved hospital and community care providers. Second, improvements in terms of intervention outcomes, performance objectives and change objectives were specified. Third, 220 experts were consulted and a systematic review of effective discharge interventions was carried out to select theory-based methods and practical strategies required to achieve change and better performance. RESULTS: Ineffective discharge is related to factors at the level of the individual care provider, the patient, the relationship between providers, and the organisational and technical support for care providers. Providers can reduce hospital readmission rates and adverse events by focusing on high-quality discharge information, well-coordinated care, and direct and timely communication with their counterpart colleagues. Patients, or their carers, should participate in the discharge process and be well aware of their health status and treatment. Assessment by hospital care providers whether discharge information is accurate and understood by patients and their community counterparts, are important examples of overcoming identified barriers to effective discharge. Discharge templates, medication reconciliation, a liaison nurse or pharmacist, regular site visits and teach-back are identified as effective and promising strategies to achieve the desired behavioural and environmental change. CONCLUSIONS: This study provides a comprehensive guiding framework for providers and policy-makers to improve patient handover from hospital to primary care.

Family members' experiences of the impact of the LCP in a palliative care unit and a geriatric ward in Sweden.

BACKGROUND: The Liverpool Care Pathway for the Dying Patient (LCP) was developed to transfer palliative care standards for the last hours or days of life, including family support, from hospice to other care settings. AIM: This study sought to explore family members' experiences of end-of-life care in a palliative care unit and in a general geriatric ward in Sweden before and after implementation of the LCP. METHODS: Experiences were evaluated in relation to the goals of the LCP. Family members of patients deceased before and after implementation answered a questionnaire 3-6 months after the death. Comparisons between the samples were assessed by non-parametric tests. RESULTS: There were significant differences concerning dialogue about existential issues that arise and about emotions and practical issues faced in bereavement. Significant improvements after the implementation of the LCP were reported in experiences regarding physicians' ability to listen to family members' concerns. CONCLUSION: The results suggest that using a structure such as that provided by the LCP may improve communication between physicians and the families of dying patients.

Living close to a person with cancer: a review of the international literature and implications for social work practice.

To help family caregivers (FCs), social workers need to understand the complexity of FC's experiences and challenges. For this systematic review, several relevant, multidisciplinary electronic databases were searched. Of 1,643 titles identified, 108 articles met the inclusion criteria and are included in this review. Various experiences, symptoms, and burden related to caregiving responsibilities are described and discussed. The understanding evolving from this study about the FC's own health risk, caregiver burden, and experiences over time can enhance a social worker's awareness of an FC's challenging situation and the potential impact this has on the FC's ability to provide care to the patient.

Family caregivers of cancer patients: perceived burden and symptoms during the early phases of cancer treatment.

This study investigated levels of symptoms, caregiver burden, and changes over time in 278 family caregivers (FC) of cancer patients. FCs experienced high levels of depressive symptoms and sleep disturbance, low levels of fatigue, and low to moderate levels of caregiver burden, yet these symptoms remained relatively stable over time. Being female and not being employed were factors associated with an increased risk of symptoms and caregiver burden. The understanding evolving from this study can enhance social- and health care professionals' awareness of FCs' challenging situation and the potential impact this has on the FCs' ability to provide care to the patient.