Consulting parents bereaved by childhood cancer: A qualitative study to improve bereavement services
Parents; Bereavement; Communication; Interviews; Referral and Consultation; Qualitative Studies; Empathy; Human; Thematic Analysis; Childhood Neoplasms; Patient Care; Psychosocial Factors
Twelve Australian parents bereaved by childhood cancer were interviewed
Loxton I; Oxlad M; Perry A
Death Studies
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1080/07481187.2022.2142325" target="_blank" rel="noreferrer noopener">10.1080/07481187.2022.2142325</a>
Grief Journey: Perception and Response Based on Cultural Beliefs in Thai Women Experiencing Perinatal Death
Female; Anxiety; Grief; Adult; Health Personnel; Quality of Health Care; Adolescence; Self Concept; Medical Records; Emotions; Interviews; Purposive Sample; Qualitative Studies; Culture; Fear; Descriptive Research; Human; Hope; Reflection; Content Analysis; Field Notes; Evaluation; Hospitals Community; Women; Health Knowledge; Perinatal Death; Psychosocial Factors; Cultural Competence; Cultural Sensitivity; Forgiveness; Self-Talk; Social Norms; Thailand
Studying perinatal death needs to involve cultural beliefs influencing women's perceptions and responses to illuminate their grief journey following the loss of their baby. There is an urgent need to provide a deep understanding in this area that will be useful in meeting the unmet needs of women experiencing perinatal death. This qualitative study explored the grief journey set among cultural beliefs of Thai women experiencing perinatal death. Twenty-five participants who experienced perinatal death between six months and two years before participating in the study were recruited by purposive sampling through the medical history records of four community hospitals in a province of Thailand. Data were collected by in-depth interviews from September 2020 to March 2021 until data saturation. Content analysis was applied to analyze the data. Findings revealed four themes: 1) bewildering in the dark (wondering what is wrong, anxiety and fear about the anticipated loss, flickering hope); 2) grief response (the world suddenly shuts down, overwhelming sorrow); 3) self-reflection (by talking to self, talking to others); and 4) self-healing (compliance with cultural beliefs, the forgiveness of self and others). In conclusion, healthcare providers should be equipped with essential knowledge for addressing issues holistically based on cultural sensitivity that will be useful in enhancing the utmost ability of women in moving through their grief.
Nedruetai P; Puangpaka K; Bih-Ching S
Pacific Rim International Journal of Nursing Research
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/" target="_blank" rel="noreferrer noopener"></a>
Using mobile phones, WhatsApp and phone interviews to explore how children's hospice nurses manage long-term relationships with parents: a feasibility pilot
Child; Humans; Pilot Projects; Covid-19; Parents; Cell Phone; data collection; interviews; methodology; research; research methods
BACKGROUND: Mobile phones are familiar to most nurses, but the applications available for voice recording and transfer of audio files in research may not be. AIM: To provide an overview of a pilot study which trialled the use of mobile phones, WhatsApp and phone interviews as a safe and reliable means of collecting data. DISCUSSION: A pilot study was designed to test the use of: mobile phones as a safe and reliable way to record audio diaries as research data; WhatsApp to transmit the audio files; and phone interviews to explore them. Undertaking the pilot demonstrated that the tools proposed for collecting data were useable and acceptable to the target population and that the researcher's guidance for doing so was satisfactory. CONCLUSION: New technologies enable innovation but trialling them for useability is important. Confidentiality and consent need to be carefully managed when using WhatsApp to ensure a study is compliant with data protection regulations. IMPLICATIONS FOR PRACTICE: Collection of research data digitally and remotely has become increasingly mainstream and relied on during the COVID 19 pandemic. The methods discussed in this article provide solutions for timely data collection that are particularly useful when the researcher is geographically distant from participants. The 'in the moment' reflective nature of the audio diaries could also be applicable to non-research settings - for example, as a method of assisting ongoing professional development and/or collection of reflective accounts.
Jane BM; Anstey S; Davies J; Dunn C; Jones A
Nursing Research
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.7748/nr.2022.e1849" target="_blank" rel="noreferrer noopener">10.7748/nr.2022.e1849</a>
Maternal Grief: A Qualitative Investigation of Mothers' Responses to the Death of a Child From Cancer
Adaptation; Attitude to Death; Bereavement; Childhood Neoplasms – Mortality; Complicated Grief; Coping; Female; Grief; Interviews; Mothers – Psychosocial Factors; Phenomenological Research; Psychological; Qualitative Studies; Self Concept; Social Environment
This study explored bereaved mothers' responses to the death of a child from cancer, with a focus on identifying adaptive and complicated grief reactions. To understand the unique meaning of their loss, in-depth interviews were conducted with 13 mothers at two time points. Interpretative phenomenological analysis—guided by meaning-making theories of loss—revealed five master categories: the perceptions of the child's life with cancer and death from the disease, changed self-identity, coping style, developing an ongoing relationship to the deceased child, and the postdeath social environment. Each of these master categories and associated subthemes provided insights into the characteristics of the bereaved mothers' adaptive and complicated grief responses to their loss. Given all the mothers evidenced multiple forms or types of these responses over time, they could not be categorized as adaptive or complicated grievers. However, the varying proportions of each of these responses highlighted differences in overall bereavement adaptation.
Gerrish NJ; Bailey S
Omega
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/0030222818762190" target="_blank" rel="noreferrer noopener">10.1177/0030222818762190</a>
Maternal Grief: A Qualitative Investigation of Mothers' Responses to the Death of a Child From Cancer
Female; Adaptation; Psychological; Attitude to Death; Bereavement; Self Concept; Social Environment; Interviews; Human; Phenomenological Research; Qualitative Studies; Coping; Grief; Complicated Grief; Childhood Neoplasms – Mortality; Mothers – Psychosocial Factors
This study explored bereaved mothers' responses to the death of a child from cancer, with a focus on identifying adaptive and complicated grief reactions. To understand the unique meaning of their loss, in-depth interviews were conducted with 13 mothers at two time points. Interpretative phenomenological analysis—guided by meaning-making theories of loss—revealed five master categories: the perceptions of the child's life with cancer and death from the disease, changed self-identity, coping style, developing an ongoing relationship to the deceased child, and the postdeath social environment. Each of these master categories and associated subthemes provided insights into the characteristics of the bereaved mothers' adaptive and complicated grief responses to their loss. Given all the mothers evidenced multiple forms or types of these responses over time, they could not be categorized as adaptive or complicated grievers. However, the varying proportions of each of these responses highlighted differences in overall bereavement adaptation.
Gerrish N J; Bailey S
Omega: Journal of Death & Dying
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/0030222818762190" target="_blank" rel="noreferrer noopener">10.1177/0030222818762190</a>
Nurses' Perceptions of the Palliative Care Needs of Neonates With Multiple Congenital Anomalies
Abnormalities; Age Factors; Consent (Research); Content Analysis; Data Analysis Software; Descriptive Statistics; Educational Status; Feedback; Female; Health Services Needs and Demand – In Infancy and Childhood; Human; Infant; Intensive Care Units; Interviews; Male; Multiple; Neonatal; Neonatal Intensive Care Nursing; Newborn; Nurse Attitudes – Evaluation; Palliative Care; Quality of Life; Questionnaires; Semi-Structured Interview; Thematic Analysis; Time Factors
This study was conducted to determine neonatal intensive care unit (NICU) nurses' opinions about the palliative care needs of neonates with multiple congenital anomalies. The study sample consisted of the 20 nurses who agreed to participate in the study and worked in the NICU between November and December 2017. A one-to-one interview method was utilized using a semistructured interview form. Written consent was obtained from participants and reconfirmed verbally prior to data collection. In the study, most of the nurses stated that the therapeutic medical treatment should not be started for dying neonates with multiple congenital anomalies. It was also found that nurses did not have enough palliative care knowledge for neonates. The palliative care needs of the neonates with multiple congenital anomalies in NICUs were found to be pain management, infection care, enhancing quality of life by avoiding unnecessary medical practices, skin care, the care of the baby in the ventilator, timely application of the treatment of neonates, and supporting family.
Şener Taplak A; Gürol A; Polat S
Journal of Hospice and Palliative Nursing
2020
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<a href="http://doi.org/10.1097/NJH.0000000000000628" target="_blank" rel="noreferrer noopener">10.1097/NJH.0000000000000628</a>
Trauma to Transformation: the lived experience of bereaved parents of children with chronic life-threatening illnesses in Singapore
Asia; Attitude to Death; Bereavement – Singapore; Chinese; Critical Illness – Singapore; Ethnic Groups; Grounded Theory; Human; India – Ethnology; Interviews; Life Experiences – Evaluation – Singapore; Palliative Care – Singapore; Parent-Child Relations – Singapore; Parents – Psychosocial Factors – Singapore; Pediatric Care – Singapore; Posttraumatic Growth; Psychological – Prevention and Control – Singapore; Psychological Well-Being; Psychosocial; Qualitative Studies; Rituals and Ceremonies; Singapore; Single Parent – Psychosocial Factors; Spouses – Psychosocial Factors; Support
Background: In 2016, over 6.6 million children died globally, and 245 children died in Singapore. Chronic illnesses are prevalent causes of child mortality around the world. Despite growing research that examines the lived experience of parents bereaved by their child's chronic life-threatening illness, there is no such study within the Asian context. Methods: To bridge this knowledge gap, meaning-oriented, strength-focused interviews were conducted with 25 parental units (i.e. 6 couples, 13 lone mothers, 4 lone fathers, and 2 primary parental figures) who lost their child to chronic life-threatening illness in Singapore (N = 31), including those of Chinese (n = 17), Malay (n = 10) and Indian ethnicities (n = 4), between August 2017 and April 2018. Results: Data analysis adhering to the grounded theory approach revealed 7 themes and 25 sub-themes that were organized into a Trauma-to-Transformation Model of Parental Bereavement. This model shows the major milestones in participants' lived experience of their child's chronic life-threatening illness and death, starting from the diagnosis of their child's chronic life-threatening illness and the subsequent emotional turmoil (Theme 1), the mourning of their child's death and the losses which accompanied the death (Theme 3) and participants' experience of posttraumatic growth through reflection of their journey of caregiving and child loss (Theme 5). The model further describes the deliberate behaviors or 'rituals' that helped participants to regain power over their lives (Theme 2), sustain an intimate bond with their child beyond death (Theme 4), and transcend their loss by deriving positive outcomes from their experience (Theme 6). Finally, the model denotes that the lived experiences and well-being of participants were embedded within the health-and-social-care ecosystem, and in turn impacted by it (Theme 7). Conclusion: These themes and their corresponding sub-themes are discussed, with recommendations for enhancing culturally sensitive support services for grieving Asian parents around the globe.
Dutta O; Tan-Ho G; Choo P Y; Low X C; Chong P H; Ng C; Ganapathy S; Ho A H Y
BMC Palliative Care
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1186/s12904-020-00555-8" target="_blank" rel="noreferrer noopener">10.1186/s12904-020-00555-8</a>
African American and Latino bereaved parent health outcomes after receiving perinatal palliative care: A comparative mixed methods case study
Adult; Anticipatory Grieving; Anxiety; Bereavement; Blacks -- Psychosocial Factors; Comparative Studies; Depression; Descriptive Statistics; Female; Fetal Abnormalities -- Diagnosis; Funding Source; Health Status; Hispanics -- Psychosocial Factors; Human; Interviews; Male; Multimethod Studies; Palliative Care; Parental Attitudes; Patient Satisfaction; Perinatal Care; Perinatal Death -- Psychosocial Factors; Psychological Well-Being; Qualitative Studies; Quantitative Studies; Questionnaires; Scales; Self Report; Summated Rating Scaling; Surveys; Treatment Outcomes
Death of one's infant is devastating to parents, negatively impacting couple relationships and their own health. The impact of a prenatally diagnosed life-limiting fetal condition (LLFC) on parents of minority status is unclear. This comparative mixed methods case study examined the person characteristics, quality of perinatal palliative care (PPC) received and parent health outcomes. Bereaved couples, 11 mothers and 3 fathers of minority or mixed races (11 African American and Latino, 1 White Latino and 2 White parents) completed the survey; 7 were interviewed. Parents rated their general health close to good , physical health close to normal but mental health lower than the population norm. Clinical caseness (abnormal levels) of anxiety were reported in 50% of parents whereas depression scores were normal. The experience of fetal diagnosis and infant death had a negative impact on the health of 40% of participants however, parents could not identify what specifically caused their health problems. Most were satisfied with their PPC but some shared that original providers were not supportive of pregnancy continuation. After the baby's death, 71% reported closer / stronger couple relationships. Two contrasting cases are presented. Once parents found PPC, their baby was treated as a person, they spent time with their baby after birth, and found ways to make meaning through continuing bonds. Despite high overall satisfaction with PPC, bereaved parents were deeply impacted by their infant's death. Mixed methods case study design illuminated the complicated journeys of parents continuing their pregnancy with a LLFC. • The impact of race and ethnicity on response to perinatal loss is not well known. • Perinatal death can have long-lasting, negative effect on the parents' health. • Perinatal palliative care exists for fetal life-limiting conditions. • The majority of parents reported worsening or new health problems after the loss. • Parents found that perinatal palliative care greatly improved their experience.
Côté-Arsenault D; Denney-Koelsch E M; McCoy T P; Kavanaugh K
Applied Nursing Research
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.apnr.2019.151200" target="_blank" rel="noreferrer noopener">10.1016/j.apnr.2019.151200</a>
The clinical practice guideline palliative care for children and other strategies to enhance shared decision-making in pediatric palliative care; pediatricians' critical reflections
Children; Clinical practice guideline; Interviews; Palliative care; Qualitative; Shared decision-making
BACKGROUND: Because of practice variation and new developments in palliative pediatric care, the Dutch Association of Pediatrics decided to develop the clinical practice guideline (CPG) palliative care for children. With this guideline, the association also wanted to precipitate an attitude shift towards shared decision-making (SDM) and therefore integrated SDM in the CPG Palliative care for children. The aim was to gain insight if integrating SDM in CPGs can potentially encourage pediatricians to practice SDM. Its objectives were to explore pediatricians' attitudes and thoughts regarding (1) recommendations on SDM in CPGs in general and the guideline Palliative care for children specifically; (2) other SDM enhancing strategies or tools linked to CPGs. METHODS: Semi-structured face-to-face interviews. Pediatricians (15) were recruited through purposive sampling in three university-based pediatric centers in the Netherlands. The interviews were audio-recorded and transcribed verbatim, coded by at least two authors and analyzed with NVivo. RESULTS: Some pediatricians considered SDM a skill or attitude that cannot be addressed by clinical practice guidelines. According to others, however, clinical practice guidelines could enhance SDM. In case of the guideline Palliative care for children, the recommendations needed to focus more on how to practice SDM, and offer more detailed recommendations, preferring a recommendation stating multiple options. Most interviewed pediatricians felt that patient decisions aids were beneficial to patients, and could ensure that all topics relevant to the patient are covered, even topics the pediatrician might not consider him or herself, or deems less important. Regardless of the perceived benefit, some pediatricians preferred providing the information themselves instead of using a patient decision aid. CONCLUSIONS: For clinical practice guidelines to potentially enhance SDM, guideline developers should avoid blanket recommendations in the case of preference sensitive choices, and SDM should not be limited to recommendations on non-treatment decisions. Furthermore, preference sensitive recommendations are preferably linked with patient decision aids.
Dreesens D; Veul L; Westermann J; Wijnands N; Kremer L; van der Weijden T; Verhagen E
BMC Pediatrics
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1186/s12887-019-1849-0" target="_blank" rel="noreferrer noopener">10.1186/s12887-019-1849-0</a>
The Long-Term Care Experiences and Care Needs of Parents Caring for Children With Adrenoleukodystrophy
Needs Assessment; Descriptive Research; Hospice Care; Human; Interviews; Helplessness Learned; Guilt; Psychosocial Aspects of Illness; Qualitative Studies; Parental Attitudes; Individualized Medicine; Long Term Care; Peroxisomal Disorders -- Psychosocial Factors
Background: Children suffering from adrenoleukodystrophy (ALD) requires life-long care. Little is known about the care needs of parents of ALD children at different stages of their disease. Purpose: The purpose of this study was to understand the long-term care experiences and care needs of parents caring for their ALD children. Methods: A descriptive qualitative study with 7 in-depth interviews was conducted with parents. Results: The results of these care experiences were distinguished into three phases: "pathogenesis to diagnosis", "rapid deterioration of physiological functions", and "bedridden until the death". The long-term care experiences revealed five themes, including "chaos and helplessness to seek medical attention then being forced to accept", "self-accusation and guilt", "strengthening parents' toughness", "seizing the moment and facing the future", and "accompanying children through life without pain". Within the three phases, the care needs comprised the three themes of "integrating resources and providing immediate care", "obtaining information and support regarding ALD rapidly", and "establishing individualized long-term care". Conclusion/Implication for Practice: This study revealed the long-term care experiences and care needs of the parents of ALD children. Providing individualized care, nursing instruction, and telephone consultation as well as connecting case managers with the hospice-care team will help facilitate and meet the care needs of these parents.
Jui-Chun F; Wei-Wen W U; Miao-Ju C; Shu-Yuan L; Su-Fen C
Journal of Nursing
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.6224/JN.201902_66(1).05" target="_blank" rel="noreferrer noopener"> 10.6224/JN.201902_66(1).05</a>
Care of the Bereaved Mother
Quality of Health Care; Human; Interviews; Nurse-Patient Relations; Parental Attitudes; Support Psychosocial; Mothers -- Psychosocial Factors; Bereavement -- Evaluation; Grief -- Evaluation; Neonatal Intensive Care Nursing -- Education; Nursing Role; Patient Centered Care; Perinatal Death -- Psychosocial Factors; Support Groups
Purpose: Caring for the bereaved mother can be a challenging undertaking for healthcare professionals who unless have suffered a similar loss, can find it difficult to relate with bereaved parents. The purpose of this DNP project is to research grief and bereavement to better understand the parental bereavement experience and to develop an education lesson for MBU nurses caring for bereaved patients. It is essential to provide nurses with insight into the bereavement experience of parents who have suffered the loss of a child, so they can provide support that validates the parents' grief and helps facilitate spiritual, emotional, or cultural rituals. Appropriate interventions can improve quality of care and promote healing. Method: The project was implemented in collaboration with the NICU nursery, the NICU nursing staff, and the parents' bereavement support group coordinator. The goal was to research the bereavement experience of the parents, but more specifically the mother, through evidencebased research, interviews with NICU nurses of their interaction with bereaved parents, review of the existing bereavement protocol in the hospital, and observing a parents' bereavement support group to hear firsthand accounts of parents' experiences and perceptions of their nursing care by healthcare professionals. This gathered data was then structured into an education lesson for the nurses of the MBU. Findings: The education lesson was positively reviewed by the stakeholders. Their feedback stated the information was relevant and brought awareness and insight for nurses caring for these vulnerable patients during a difficult time. The coordinator of the parents' bereavement support group suggested the lesson would be beneficial for newly hired nurses during orientation. Clinical Relevance: Through education, nurses gain knowledge and an understanding of what their role is in the bereavement process of the mother who has suffered an unexpected perinatal loss. Learning to foster a caring and trusting relationship with patients creates a safe environment and forms a partnership with patients, which thus results in appropriate interventions that meet the specific needs of the mother. This also facilitates the development of an individualized plan of care that provides support, comfort and guidance through the bereavement process. Guiding parents through the bereavement process is an essential component of care that contributes to normal progression through the stages of grief and promotes wellbeing.
Rocio GI
Care Of The Bereaved Mother
2018
Early integrated palliative approach for idiopathic pulmonary fibrosis: A narrative study of bereaved caregivers' experiences
Hospital Mortality; Bereavement; Human; Communication; Anxiety; Stress Psychological; Palliative Care; Canada; Attitude to Death; Emotions; Adult Children; Life Change Events; Interviews; Interpersonal Relations; Memory; Collaboration; Narratives; Home Health Care; Purposive Sample; Support Psychosocial; Life Experiences; Patient Care Plans; Quality of Life; Content Analysis; Thematic Analysis; Advance Care Planning; Patient Attitudes; Accountability; Caregiver Attitudes; Health Facilities -- Canada; Idiopathic Pulmonary Fibrosis -- Prognosis; Idiopathic Pulmonary Fibrosis -- Therapy -- Canada; Pulmonologists; Spouses
Background: Idiopathic pulmonary fibrosis has an uncertain and rapid trajectory after diagnosis. Palliative care is rarely utilized, although both patients and caregivers experience a distressingly high symptom burden. Most patients die in hospital. Aim: The purpose of this study was to explore bereaved caregivers' experiences and perceptions of an early integrated palliative approach implemented at a Multidisciplinary Interstitial Lung Disease Clinic. Design: A narrative approach was used, with thematic and content analysis of open-ended interviews. Setting/participants: The clinic is located in a large western Canadian city. Caregivers of deceased patients were recruited through purposive sampling. The eight participants were either spouses or adult children. Results: Five major themes were identified: Having a Terminal Disease; Planning Goals and Wishes for Care; Living Life and Creating Memories; Feeling Strain and Responsibility; and Nearing the End. Caregivers had little understanding of prognosis prior to advance care planning conversations at the clinic. Advance care planning conversations enabled caregivers to know and support patients' goals and wishes. Caregivers described feeling informed, prepared, and supported when death was near. They expressed neither distress nor anxiety related to patients' symptoms or strain of relationships. Conclusion: Collaboration and close communication among caregivers, respirologists, and home care enabled effective symptom management and out of hospital deaths. Patients and caregivers had opportunities to enjoy events, create memories, determine preferences, and make plans. Further research on an early integrated palliative approach in Idiopathic Pulmonary Fibrosis is warranted related to quality of life, experience with death and dying, and caregiver bereavement.
Pooler C; Richman-Eisenstat J; Kalluri M
Palliative Medicine
2018
<a href="http://doi.org/10.1177/0269216318789025" target="_blank" rel="noreferrer noopener">10.1177/0269216318789025</a>
Managing Ambiguity: Nurses Caring for the Mother of a Stillborn Baby
Human; Grief; Interviews; Grounded Theory; Perinatal Death; Audiorecording; Constant Comparative Method; Life Experiences -- Evaluation; Obstetric Nursing
Purpose: The aim of this study was to describe and conceptualize the experiences and processes involved when labor and delivery nurses provide care to women experiencing a stillbirth. Background: The care of a woman experiencing a stillbirth is an important topic that requires attention, however, there is a paucity of literature on the specifics of a nurse's experience as she or he cares for a grieving mother. These experiences may shed light on gaps in care that may exist as well as gaps in the resources, education and support needed to appropriately prepare nurses for providing care to a mother at such a difficult and vulnerable time. Stillbirth is increasingly referred to in the literature as a traumatic death, unexpected and unplanned, resulting in post-traumatic stress responses. Understanding what the bedside nurse does, thinks, and feels during these moments of traumatic bereavement will contribute to a greater understanding of the nurse's experience of providing care to a patient. Method: This study used a grounded theory approach. Data were collected via in-depth interviews with 20 labor and delivery nurses. Each interview session was recorded, transcribed verbatim, and analyzed using the constant comparative method of analysis. Results: Based on the inductive method of grounded theory and a thorough comparative analysis of the data, the theory Managing Ambiguity emerged as the basic social process of how nurses struggle to care for a mother whose baby was stillborn. This theoretical underpinning summed up the substance of what was occurring when nurses cared from a mother experiencing a stillbirth and was characterized in three different categories by labor and delivery nurses as Experiencing a spectrum of emotions, Managing the ambiguous patient, and Managing institutional ambiguity. These factors contributed to the overall ambiguity the nurse had to manage when providing care for the patient whose baby was stillborn and became the three main categories of the overall theory. Conclusions: This theory of Managing Ambiguity provided a perspective on the experiences, behaviors, and social processes involved in caring for a woman delivering a stillborn baby. This theory also provided insights into how the interactions between the nurse and herself, the nurse and the patient, and the nurse and her environment impacted the process and the meaning of the event. The importance of this study is the resulting understanding of factors that impede and enhance the process of providing care to a mother whose baby was stillborn. Feelings of uncertainty, ambiguity, and discomfort must be addressed at the nursing education and nursing leadership levels.
Nurse NJ
Managing Ambiguity: Nurses Caring For The Mother Of A Stillborn Baby
2018
Comparison of mothers and grandmothers physical and mental health and functioning within 6 months after child NICU/PICU death
Attitude to Death; Bereavement; Blacks; Checklists; Chi Square Test; Cross Sectional Studies; Depression; Employment Status; Grandparents Psychosocial Factors; Grief; Health Status; Hispanics; Human; Intensive Care Units; Interviews; Mental Health; Mothers Psychosocial Factors; Neonatal; Paired T-Tests; Pediatric; Physical Fitness; Post-Traumatic; Psychological Tests; Psychosocial; Stress Disorders; Support
Losing a child is devastating for parents and grandparents. Family and friends generally focus on comforting and supporting the bereaved parents, unintentionally ignoring the bereaved grandparents. Grandmothers and grandfathers often struggle with wanting to help their adult children (deceased child’s parents) without usurping the parents’ responsibilities and decisions regarding the deceased child. Research on mothers’ and grandmothers’ health at about the same time after the same child’s death in the neonatal or pediatric intensive care unit is lacking. The aim of this study was to compare mothers and grandmothers on physical health, mental health, and functioning in the first 1–6 months after the same child’s death in a neonatal or pediatric intensive care unit.
Youngblut JM; Brooten D
Italian Journal of Pediatrics
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here.
<a href="http://doi.org/10.1186/s13052-018-0531-8" target="_blank" rel="noreferrer noopener">10.1186/s13052-018-0531-8</a>
Grief and coping of parents whose child has a constant life-threatening disability, hypoplastic left heart syndrome with reference to the Dual-Process Model
This paper reports on a study that examined the grief and coping of 29 parents whose child has hypoplastic left heart syndrome using the Dual Process Model. The study employed a secondary thematic analysis of interviews at key times of treatment and recovery for the child. After the diagnosis, parents experienced intense loss (LO), but focused upon restoration-orientated tasks (RO) to support their child. Over time, most parents employed a healthy oscillation between LO coping and RO coping, with waves of grief and with some grieving suppressed. There are some specific grief and coping and gender patterns employed by parents
Cantwell-Bartl A
Death Studies
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1080/07481187.2017.1407380" target="_blank" rel="noreferrer noopener">10.1080/07481187.2017.1407380</a>
Final transitions: family caregiving at the end of life
Female; Humans; Male; United States; Terminal Care; Aged; Middle Aged; Stress; 80 and over; Non-U.S. Gov't; Research Support; Caregivers/psychology; Interviews; Psychological/etiology
BACKGROUND: This study aimed to understand how caregivers make the transition to end-stage caregiving and to illuminate its unique aspects using a stress process model. METHODS: Qualitative in-depth interviews were conducted with 74 caregivers of a family member who had been receiving hospice care for at least 2 weeks. Interviews were tape recorded, transcribed, and coded for emergent themes using constant comparative analysis. RESULTS: End-stage caregiving was characterized in the sample as (1) comprehension of terminality (the interrelationship of information, physical and cognitive decline, and personality change and role losses), (2) near-acute care, (3) executive functions, and (4) final decision making. The comprehension of terminality emerged from three interrelated experiences: receiving and assimilating concrete information about the illness, observing the progression of the disease, and observing the personality change and role loss. The primary stressors (unique end-stage caregiving tasks) were providing near-acute care, assuming an executive function, and beginning and final decision making. The secondary stressors were family role conflict, work conflict, and financial strain. Resources, such as intrinsic and extrinsic religious and faith practices and social support, were identified. Negative outcomes included intense emotional responses, and positive outcomes included heightened development of meaning making. CONCLUSION: The findings suggest that palliative care professionals have important opportunities to provide information and support to family caregivers during the final stages of the patient's terminal illness.
2005
Waldrop DP; Kramer BJ; Skretny JA; Milch RA; Finn W
Journal Of Palliative Medicine
2005
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1089/jpm.2005.8.623" target="_blank" rel="noreferrer">10.1089/jpm.2005.8.623</a>
Parents' reactions to participating in interviews about end-of-life decision making
Child; Female; Humans; Male; United States; Terminally Ill; Adult; Interviews; decision making; ICU Decision Making; Parents/psychology; child mortality
BACKGROUND: Although in-depth interviewing is well suited to studying the sensitive topic of end-of-life decision making, no reports have been published assessing the effects on parents of participating in interviews regarding end-of-life decision making for critically ill children. OBJECTIVE: To examine the reactions of pediatric intensive care unit (PICU) patients' parents to interviews on end-of-life decision making for their child. METHODS: We conducted semistructured interviews on end-of-life decision making with PICU patients' parents from two tertiary care PICUs. We approached 117 parents of 102 patients. Seventy-four parents (63%) of 69 patients participated. RESULTS: Forty-three parents (61%) described the interview as "a good experience," 20 (29%) as "a neutral experience," and 1 (1%) as "a bad experience." The parent who judged the interview negatively stated that, "It bothers me a little bit because my son is [out] there having difficulties and I'm in here and not out there." Fifty-four of 59 parents (92%) said they would participate in another similar interview. Most parents (92%) felt the medical community should continue research on end-of-life decision making. Themes identified from the responses included: emotional reaction to the interviews; exposure to end-of-life decision-making issues; impact on parents' views; and impact on future end-of-life decision making. Parents' comments suggested that many perceived the interviews as beneficial. CONCLUSIONS: This study demonstrates the willingness of many parents of critically ill children to participate in study interviews regarding end-of-life decision making, a topic that most parents felt was important and warranted more research.
2006
Michelson KN; Koogler TK; Skipton K; Sullivan C; Frader JE
Journal Of Palliative Medicine
2006
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Journal Article
<a href="http://doi.org/10.1089/jpm.2006.9.1329" target="_blank" rel="noreferrer">10.1089/jpm.2006.9.1329</a>
Tell me about it: drawing as a communication tool for children with cancer
PedPal Lit; Non-U.S. Gov't Stress; (b) explore and compare the coping measures they use to manage these stressors; AdolescentArt Therapy Attitude to Health Child Child; and (c) examine the use of drawing to enhance communication. Participants included 22 children ages 7 to 18 years; Hospitalized/psychology; Communication; Comparative Study; Emotions; Female; Great Britain; Humans; Interviews; Male Neoplasms/nursing/psychology; Nurse-Patient Relations; Oncologic Nursing/methods; Qualitative Research; Research Support; Psychological/nursing United States%X As health-related research on children shifts from seeking information about children to seeking information directly from them; regardless of their ethnicity and other cultural comp onents; respond to the childhood cancer experience in a similar manner. The use of drawing enhanced communication through direct visual expression and/or through verbal expression via the "campfire effect."
2005
Rollins JA
Journal Of Pediatric Oncology Nursing
2005
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Journal Article
<a href="http://doi.org/10.1177/1043454205277103" target="_blank" rel="noreferrer">10.1177/1043454205277103</a>
Building a new world: habits and practices of healing following the death of a child
Child; Female; Humans; Male; Adult; Parent-Child Relations; Attitude to Death; Ceremonial Behavior; Family Relations; Qualitative Research; Spirituality; Burial; Preschool; Adaptation; Psychological; bereavement; Interviews; infant; SSHRC CURA; Habits
The goal of this interpretive phenomenological study is to describe and understand significant habits and practices developed by families bereaved from the sudden and unexpected loss of their children. Data were primarily collected through the interviewing of 15 family members in seven families. At least four interviews were conducted with each family. Family members were interviewed both together and separately. The analysis of the data illuminated the development of significant and meaningful family practices. These practices acknowledged the death of the children, integrated their loss into the everyday lives of these families, allowed for continuing connection, and were of utter importance as they contributed to family healing.
2006
Gudmundsdottir M; Chesla CA
Journal Of Family Nursing
2006
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Journal Article
<a href="http://doi.org/10.1177/1074840706287275" target="_blank" rel="noreferrer">10.1177/1074840706287275</a>
Consultation with children in hospital: children, parents' and nurses' perspectives
Child; Humans; England; Parent-Child Relations; Questionnaires; Communication; Hospitals; Comprehension; Nursing Staff; Pediatric; Interviews; PedPal Lit; Parents/psychology; decision making; Attitude of Health Personnel; Patient Participation; Nurse-Patient Relations; Nurse's Role; Hospital/psychology; Hospitalized/psychology
AIMS AND OBJECTIVES: To explore children's, parents' and nurses' views on participation in care in the healthcare setting. BACKGROUND: Children have a right to be consulted and involved in their care. DESIGN: The grounded theory method was used and data were collected through in-depth interviews, questionnaires and observation. Sample consisted of 11 children, 10 parents and 12 nurses from four paediatric wards in two hospitals in England. RESULTS: Parents felt that children should be involved in the decision-making process thereby enhancing and promoting children's self-esteem and positive self-regard, which would consequently enhance their overall welfare. Likewise, children expressed the need for consultation and information so that they could understand their illness; be involved in their care, and prepare themselves for procedures. However, children's own opinions and views were underused and they had varying experiences of being consulted about their care and treatment. Nurses appeared to hold varying and discrepant views on the involvement of children in decisions and for some nurses, the child's involvement seemed to be dependent on the child's cognitive maturity and being defined as a rational subject. CONCLUSION: Health professionals' communication behaviour may reflect recognition of children's cognitive abilities rather than their competence to understand. The fact that children's nurses appeared to make decisions about involving children in decision making in the absence of a reliable framework was a significant finding and highlights a real problem in the current climate. RELEVANCE TO CLINICAL PRACTICE: Nurses faced with workforce pressures may encounter considerable challenges to facilitating children's involvement in decisions about their care. Hence it is imperative that nurses' examine the basis of their decisions and use more explicit criteria for determining children's involvement.
2006
Coyne I
Journal Of Clinical Nursing
2006
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Journal Article
Talking with terminally ill patients and their caregivers about death, dying, and bereavement: is it stressful? Is it helpful?
Female; Humans; Male; United States; Terminal Care; Adult; Prospective Studies; Aged; Middle Aged; Attitude to Death; Communication; Death; Speech; Stress; adolescent; 80 and over; Empirical Approach; Non-U.S. Gov't; Research Support; bereavement; Caregivers/psychology; Death and Euthanasia; Interviews; Psychological/etiology/psychology; Terminally Ill/psychology
BACKGROUND: Discussing end-of-life issues with terminally ill patients is often considered distressing and harmful. This study was conducted to assess whether interviewing terminally ill patients and their caregivers about death, dying, and bereavement is stressful and/or helpful. METHODS: Patients from 6 sites in the United States who were estimated to have 6 months or less to live were interviewed in person and reinterviewed 2 to 6 months later. Their caregivers were interviewed separately. At the end of the interviews, patients and caregivers were asked how stressful and how helpful the interview had been. Of 1131 eligible patients, 988 (87.4%) were interviewed, and of 915 eligible caregivers, 893 (97.6%) were interviewed. RESULTS: At the end of the first interview, 1.9% of the patients reported having experienced a great deal of stress, 7.1% some stress, and 88.7% little or no stress from the interview. Among the caregivers, 1.5% reported a great deal of stress, 8.4% some stress, and 89.7% little or no stress. Slightly more stress was reported to have been caused by the reinterview. Overall, 16.9% of the patients reported the initial interview as very helpful, 29.6% as somewhat helpful, and 49.6% as offering little or no help. Among the caregivers, 19.1% reported the initial interview as very helpful, 34.3% as somewhat helpful, and 44.9% as offering little or no help. The reported helpfulness of the second interview was slightly less. Patients experiencing pain (odds ratio [OR], 1.26; 95% confidence interval [CI], 1.02-1.56), more personal meaning in dying (OR, 3.05; 95% CI, 2.02-4.59), and less ease with talking about the end of life (OR, 1.32; 95% CI, 1.09-1.60) were significantly more likely to report stress. Patients who were from an ethnic minority (OR, 1.85; 95% CI, 1.31-2.63), anxious about the end of their life (OR, 1.39; 95% CI 1.16-1.67), more spiritual (OR, 1.30; 95% CI, 1.06-1.61), and serene (OR, 1.25; 95% CI, 1.08-1.45) were significantly more likely to report the interview helpful. There was no relationship between stress and helpfulness. CONCLUSIONS: Terminally ill patients and their caregivers can discuss death, dying, and bereavement in a structured interview with minimal stress and report that the interview was helpful. Institutional review boards should not preemptively restrict surveys with terminally ill patients without reliable evidence that they will be stressful or otherwise harmful.
2004
Emanuel EJ; Fairclough DL; Wolfe P; Emanuel LL
Archives Of Internal Medicine
2004
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Journal Article
<a href="http://doi.org/10.1001/archinte.164.18.1999" target="_blank" rel="noreferrer">10.1001/archinte.164.18.1999</a>
A population-based nationwide study of parents' perceptions of a questionnaire on their child's death due to cancer.
Child; Female; Humans; Male; Data Collection; Questionnaires; Attitude to Death; Pilot Projects; Attitude; Longitudinal Studies; Sweden; Research; Ethics; Empirical Approach; bereavement; Death and Euthanasia; Interviews; Parents/psychology; Biomedical and Behavioral Research
A proposed nationwide postal questionnaire to Swedish parents who had lost a child due to cancer between 1992 and 1997 was denied approval by the local ethics committee. However, a pilot study to assess the harm and benefit of the questionnaire was approved. 95% of parents found the pilot study valuable; thus, we were allowed to proceed with the main study, which consisted of 129 questions about the child's care and death and five about the parents' perceptions of the study. 423 (99%) parents found the investigation valuable, 285 (68%) were positively affected, and 123 (28%) were negatively affected (10 [2%] of whom, very much). Although the numerical data cannot be directly translated to ethical conclusions, they can provide guidance for future ethical decisions.
2004
Kreicbergs U; Valdimarsdottir U; Steineck G; Henter JI
Lancet
2004
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Journal Article
<a href="http://doi.org/10.1016/S0140-6736(04)16939-0" target="_blank" rel="noreferrer">10.1016/S0140-6736(04)16939-0</a>
A typology of fatigue in children with cancer
Child; Female; Humans; Male; Adult; British Columbia; Hospitals; Alberta; Pediatric; adolescent; Preschool; Non-U.S. Gov't; Research Support; Adaptation; Psychological; Interviews; Fatigue/classification/complications/nursing/psychology; Neoplasms/complications/nursing
Fatigue in adults with cancer has received considerable attention as a troublesome symptom that requires nursing intervention. Fatigue in children with cancer, however, has received considerably less focus. The first phase of the present study used qualitative methods to generate a detailed description of fatigue in children with cancer. Thirteen children (ages 5 to 15) and 12 parents from the oncology service in two regional children's hospitals participated in the initial interviews; a validation sample comprised another 7 children and 6 parents from a third site. Transcribed interviews were subjected to grounded theory analysis. Energy, as an overriding phenomenon, was a core concept in the descriptions of fatigue. Findings suggest that children with cancer may experience three subjectively distinct types of fatigue that represent different levels of energy: typical tiredness, treatment fatigue, and shutdown fatigue. Children managed their dwindling energy and minimized further energy loss through strategies of replenishing, conserving, and preserving. Children's use of these strategies was influenced by temperament, lifestyle, environmental factors, and treatment modalities. Knowledge of the specific types of fatigue in children can offer direction for optimal intervention and for further research.
2002
Davies B; Whitsett SF; Bruce A; McCarthy P
Journal Of Pediatric Oncology Nursing
2002
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Journal Article
<a href="http://doi.org/10.1053/jpon.2002.30012" target="_blank" rel="noreferrer">10.1053/jpon.2002.30012</a>
Taking a narrative approach to grief research: Finding meaning in stories
Child; Grief; Death; Qualitative Research; Role; Research; Time; Interviews; narrative; Meaning; emotion
This article explores the concepts of narrative as story, of storytelling, and of the narrative approach to qualitative research. Within this, I will also examine the social nature of narrative and the implications of this for research. I will look at the process of conducting a narrative study and the implications for participation in such a project and for the researcher investigating a phenomenon through this frame. In particular, the need to create stories to make order of disorder and find meaning in the meaningless is particularly relevant to the study of grief. In looking at the process of conducting a narrative study, questions about what can be analyzed and how it might be presented, some strengths and limitations of the narrative approach, and ethical questions also are considered.
2002
Gilbert KR
Death Studies
2002
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Journal Article
<a href="http://doi.org/10.1080/07481180211274" target="_blank" rel="noreferrer">10.1080/07481180211274</a>
Predictors of psychosocial distress after suicide, SIDS and accidents
Child; Grief; Family; Parents; Questionnaires; Death; Syndrome; bereavement; Interviews; infant; Health; Sudden Infant Death; grief reaction; infant death; mourning; SIDS
This article compares the outcome and predictors of psychosocial distress of parents bereaved by young suicides, sudden infant death syndrome (SIDS), and child accidents. One objective is to explore whether suicide bereavement is more difficult for those left behind than other forms of bereavement. Data have been collected from 140 families, consisting of 232 parents, by the use of the Impact of Event Scale, the General Health Questionnaires, and the Inventory of Traumatic Grief. Qualitative aspects of bereavement are assessed by in-depth interviews with family members from 40 families. The results show that the similarities between the samples on outcome and predictors are more striking that the differences, which is explained by the common traumatic aspect of unexpected and violent deaths. One and a half years post-loss, 57-78% of the survivors scored above the cut-off levels for traumatic grief reactions. Although no significant differences are found between survivors of suicide and accidents, both groups evidence significantly greater subjective distress than the survivors of SIDS. Self-isolation is by far the best predictor of psychosocial distress in all three samples. Rather than focusing on the exceptional position of suicide survivors, it seems important to call attention to sudden and traumatic death in general as a factor to be associated with post-traumatic reactions and complicated mourning.
2003
Dyregrov K; Nordanger D; Dyregrov A
Death Studies
2003
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Journal Article
<a href="http://doi.org/10.1080/07481180302892" target="_blank" rel="noreferrer">10.1080/07481180302892</a>
Family beliefs regarding the nutritional care of a terminally ill relative: a qualitative study
Female; Humans; Male; Palliative Care; Adult; Canada; Middle Aged; Nutritional Support; Practice; adolescent; Non-U.S. Gov't; Research Support; Interviews; Terminally Ill/psychology; Attitudes; Family/psychology; Health Knowledge; Neoplasms/psychology/therapy; History; 18th Century
OBJECTIVE: To develop a conceptual model of family caregiver beliefs and behavior related to nutritional care of the terminally ill by examining the perspectives of family members, patients, and health care providers. DESIGN: Qualitative study using in-depth, open-ended, face to face interviews, participant observation, and content analysis. PARTICIPANTS: A total of 47 participants from 4 groups: hospitalized palliative patients with cancer (n = 13), family members of hospitalized palliative patients with cancer (n = 13), health care providers on a palliative care unit (n = 11), and bereaved family members who had previously experienced the death of a relative on a palliative care unit. OUTCOME MEASURES: Participant views on nutritional care in the terminal phases of illness. RESULTS: There is marked variability in the ways family members respond to a dying cachectic anorexic relative. The overarching theme of "doing what's best" captures this variability and integrates the major categories into the key analytic model emerging from this study. CONCLUSION: We have developed a conceptual model of family beliefs regarding the nutritional care of a hospitalized terminally ill relative. The model has implications for education, practice, and research regarding nutritional care in the palliative care setting.
2003
McClement SE; Degner LF; Harlos MS
Journal Of Palliative Medicine
2003
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Journal Article
<a href="http://doi.org/10.1089/109662103322515248" target="_blank" rel="noreferrer">10.1089/109662103322515248</a>
Issues in end-of-life care: patient, caregiver, and clinician perceptions
Female; Humans; Male; Cohort Studies; Adult; Attitude of Health Personnel; Interpersonal Relations; Aged; Middle Aged; Attitude to Death; Physicians; Qualitative Research; Quality of Health Care; Cost of Illness; Washington; 80 and over; Non-U.S. Gov't; Research Support; Caregivers/psychology; Interviews; Family/psychology; Palliative Care/psychology; Terminal Care/psychology; Patients/psychology
CONTEXT: Review of published research indicates the need to better incorporate patient and caregiver perceptions when providing end-of-life (EOL) care. Although considerable research regarding patient and caregiver experience of EOL has been done, little research has studied patients, caregivers, and clinicians as a connected system. OBJECTIVE: To study the perceptions of patients, caregivers, and physicians who are already connected with one another in an EOL care experience. DESIGN: Qualitative study consisting of in-depth, open-ended, face-to-face interviews and content analysis. SETTING: Community family practice residency programs in rural and urban settings in the Affiliated Family Practice Residency Network of the Department of Family Medicine, University of Washington School of Medicine. PARTICIPANTS: Forty-two patients and 39 caregivers facing EOL were interviewed either alone or together after referral by their physicians. Additionally, results of previously published findings from interviews with 39 family practice faculty were included. OUTCOME MEASURES: Perceptions of participants on EOL issues. RESULTS: Participants identified four primary issues related to their experience of EOL care: awareness of impending death, management/coping with daily living while attempting to maintain the management regimen, relationship fluctuations, and the personal experiences associated with facing EOL. Participants expected their physicians to be competent and to provide a caring relationship. CONCLUSIONS: Awareness of these crucial patient and caregiver EOL issues and expectations and how they differ from clinician perspectives can assist clinicians to appropriately explore and address patient/caregiver concerns and thereby provide better quality EOL care.
2003
Farber SJ; Egnew TR; Herman-Bertsch JL; Taylor TR; Guldin GE
Journal Of Palliative Medicine
2003
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Journal Article
<a href="http://doi.org/10.1089/10966210360510082" target="_blank" rel="noreferrer">10.1089/10966210360510082</a>
A grief ignored: Narratives of pregnancy loss from a male perspective
Male; Grief; Pregnancy; Attitude; Nurses; Fathers; Role; Research; Self-Help Groups; bereavement; Interviews; narrative; Anger; Paper; Support; Meaning; emotion; male grief; pregnancy loss
This paper, utilising a narrative approach, aims to describe the experiences of men whose partner had experienced pregnancy loss, based on data from Northern Ireland. The methodology was based upon observation within pregnancy loss self-help groups and in-depth interviews with 14 men who attended the groups. The study also included interviews with 32 midwives and nurses, with the intention of examining attitudes within the medical context towards bereaved fathers. The impact of pregnancy loss on male partners has been largely overlooked in academic research. When a baby dies before birth the loss can be devastating for fathers yet, very often, the world that surrounds them tends to discount their loss, and emotional support and cultural rituals that are normally available to other bereaved individuals are often absent for this group of men. Previous research has shown that men are expected to be emotionally strong in order to support their partner. The present study will show that the perception that men have only a supportive role in pregnancy loss is unjustified, as it ignores the actual life-world experiences of the men, and the meanings they attach to their loss, in what may be a very personal emotional tragedy for them where they have limited support available. The study uncovered several recurring themes including self-blame; loss of identity; and the need to appear strong and hide feelings of grief and anger. There is consideration of the need for hospital staff and the wider community to acknowledge the male partner's grief as being a valid response to the bereavement suffered.
2004
McCreight BS
Sociology Of Health & Illness
2004
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Journal Article
<a href="http://doi.org/10.1111/j.1467-9566.2004.00393.x" target="_blank" rel="noreferrer">10.1111/j.1467-9566.2004.00393.x</a>
Self-reconstruction and biographical revisioning: survival following cancer in childhood or adolescence.
Child; Adult; Questionnaires; Australia; Interviews; Adolescent Transitions; Human; Adolescence; Psychological Theory; Narratives; Childhood Neoplasms -- Psychosocial Factors; Cancer Patients -- Psychosocial Factors; Cancer Survivors -- Psychosocial Factors; Phenomenological Research; Psychosocial Aspects of Illness; Qualitative Studies
2003
Drew S
Health: An Interdisciplinary Journal For The Social Study Of Health, Illness & Medicine
2003
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Journal Article
A measure of the quality of dying and death. Initial validation using after-death interviews with family members
Female; Male; Terminal Care; Cohort Studies; Aged; Personal Satisfaction; quality of life; Non-U.S. Gov't; retrospective studies; Human; Attitude to Death; Death; Support; Middle Age; Family; Interviews; Questionnaires/standards
A reliable and valid measure of the quality of the dying experience would help clinicians and researchers improve care for dying patients. To describe the validity of an instrument assessing the quality of dying and death using the perspective of family members after death and to identify clinical correlates of a high quality death, a retrospective cohort study evaluated the 31-item Quality of Dying and Death (QODD) questionnaire. The questionnaire was administered to family members of patients who died in Missoula county Montana in 1996 and 1997. The interview included questions assessing symptoms, patient preferences, and satisfaction with care. Measurement validity was examined for item and total scores and reliability analyses for the QODD total score were assessed. Construct validity was assessed using measures of concepts hypothesized to be associated with the quality of dying and death. There were 935 deaths, of which 252 (27.0%) family interviews were represented. Non-enrolled decedents were not significantly different from enrolled decedents on age, sex, cause of death, or location of death. We excluded sudden deaths (n = 45) and decedents under age 18 (n = 2), leaving 205 after-death interviews. A total QODD score, on a scale from 0 to 100 with higher scores indicating better quality, ranged from 26.0 to 99.6, with a mean of 67.4 and Cronbach's alpha of 0.89. The total QODD score was not associated with patient age, sex, education, marital status, or income. As hypothesized, higher QODD scores were significantly associated with death at home (P < 0.01), death in the location the patient desired (P < 0.01), lower symptom burden (P < 0.001), and better ratings of symptom treatment (P< 0.01). Although the total score was not associated with the presence of an advance directive, higher scores were associated with communication about treatment preferences (P < 0.01), compliance with treatment preferences (P < 0.001), and family satisfaction regarding communication with the health care team (P < 0.01). Availability of a health care team member at night or on weekends was also associated with a higher QODD score (P < 0.001). The QODD total score demonstrated good cross-sectional validity. Clinicians caring for dying patients should focus on improving communication with the patient and family and improving symptom assessment and treatment. Health care teams should focus on continuity of care, including having a team member familiar with the patient available for calls at nights and on weekends. Future work will assess the potential role of the QODD in improving the quality of the dying experience.
2002
Curtis JR; Patrick DL; Engelberg RA; Norris K; Asp C; Byock I
Journal Of Pain And Symptom Management
2002
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Journal Article
Research & commentary: parents' experience of inflammatory bowel disease
Child; Female; Male; Adult; Focus Groups; Interviews; ICU Decision Making; Support; psychosocial; Purposive Sample; Qualitative Studies; Family Coping; Inflammatory Bowel Diseases--Psychosocial Factors; Parental Attitudes
http://search.ebscohost.com/login.aspx?direct=true&db=c8h&AN=2003063190&site=ehost-live
Dampier S
Paediatric Nursing
2002
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Journal Article
Husbands and wives as caregivers: antecedents of depression and burden
Humans; Mental Health; Sex Factors; Depression; Regression Analysis; P.H.S.; Research Support; U.S. Gov't; Interviews; Alzheimer Disease/psychology; Marriage; Home Nursing/psychology
Contrasting predictors of depression among 101 men and 214 women providing care to spouses suffering from Alzheimer's Disease indicated that the sole predictor for husbands was ill health, whereas for wives less emotional investment was also predictive. While there were no significant predictors for burden among husbands, for wives, burden was associated with poorer health, less emotional investment, greater spouse impairment, and provision of more assistance with tasks.
1989
Pruchno RA; Resch NL
The Gerontologist
1989
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Journal Article
<a href="http://doi.org/10.1093/geront/29.2.159" target="_blank" rel="noreferrer">10.1093/geront/29.2.159</a>
Parent and health care provider communication and decision making in the intensive care nursery
Humans; infant; United States; Intensive Care Units; Attitude to Health; Parents; Professional-Family Relations; Communication; Neonatal; Interviews; decision making; Newborn; ICU Decision Making; social support; Best Practices (Davies); Life Support Care/psychology
This study investigated parents' and health care providers' perspectives of their communicative interactions when a seriously ill infant is treated in an intensive care nursery. Both parents and health care providers stressed the importance of keeping parents informed of their child's condition. Concerns regarding the provision of medical information to parents in an understandable manner, the lack of time health care providers have to spend interacting with parents, and the possibility that parents' emotional involvement interferes with their understanding of the child's condition were raised. Implications for pediatric health care providers relative to their interactions with parents of young chronically ill children are raised.
1989
Abel-Boone H; Dokecki PR; Smith MS
Children's Health Care
1989
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Journal Article
<a href="http://doi.org/10.1207/s15326888chc1803_2" target="_blank" rel="noreferrer">10.1207/s15326888chc1803_2</a>
Decisions about life-sustaining treatment. Impact of physicians' behaviors on the family
Humans; Consensus; Withholding Treatment; Communication; Life Support Care; Physician's Role; Nurse's Role; Professional-Patient Relations; Disclosure; Empirical Approach; P.H.S.; Professional Patient Relationship; Research Support; U.S. Gov't; Death and Euthanasia; Interviews; decision making; Family/psychology; Practice Guidelines
BACKGROUND: Despite the growing availability of advance directives, most patients in the intensive care unit lack written directives, and, therefore, consultation with families about treatment decisions remains the rule. In the context of decision making about withdrawing life-sustaining treatments, we investigated which physician and nurse behaviors families find supportive and which behaviors increase the family's burden. METHODS: We conducted intensive 1- to 2-hour-long individual interviews using a semistructured interview protocol with 32 family members of patients without advance directives whose deaths followed a stay in the intensive care unit and withdrawal of treatment. We analyzed more than 700 pages of verbatim interview data using content analysis techniques and achieved more than 90% interrater agreement on data codes. RESULTS: Themes emerged as families identified selected physician and nursing behaviors as helpful: encouraging advanced planning, timely communication, clarification of families' roles, facilitating family consensus, and accommodating family's grief. Behaviors that made families feel excluded or increased their burden included postponing discussions about treatment withdrawal, delaying withdrawal once scheduled, placing the full burden of decision making on one person, withdrawing from the family, and defining death as a failure. CONCLUSIONS: Study findings provide an increased understanding of the unmet needs of families and serve to guide physicians and nurses in reducing actions that increase families' burdens as they participate in treatment withdrawal decisions.
1995
Tilden VP; Tolle SW; Garland MJ; Nelson CA
Archives Of Internal Medicine
1995
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Journal Article
<a href="http://doi.org/10.1001/archinte.1995.00430060097012" target="_blank" rel="noreferrer">10.1001/archinte.1995.00430060097012</a>
Qualitative analysis: What it is and how to begin
Qualitative Research; Research; Interviews; knowledge
One of the most paralyzing moments in conducting qualitative research is beginning analysis, when researchers much first look at their data in order to see what they should look for in their data. Although temporally and conceptually overlapping processes, data analysis should be distinguished from interpretation Practical suggestions for beginning analysis include getting a sense of the whole, extracting the facts, identifying key topics or major storylines and dimensionalizing their information content, and using frameworks to reduce data.
1995
Sandelowski M
Research In Nursing & Health
1995
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Journal Article
<a href="http://doi.org/10.1002/nur.4770180411" target="_blank" rel="noreferrer">10.1002/nur.4770180411</a>
The multiple meanings of long-term gastrostomy in children with severe disability
Child; Humans; United States; Canada; Attitude to Health; Attitude of Health Personnel; Time Factors; Caregivers/psychology; Interviews; Mothers/psychology; Nutritional Failure; Gastrostomy/nursing/psychology; Nurses/psychology
Although the physiological implications of long-term gastrostomy for children with severe disability are well documented in the nursing literature, little is known about the psychosocial effect of this technological intervention. This study documents and interprets the perspective of expert nurses and parents to reveal conflictual social processes associated with gastrostomy decision-making and the intense moral dilemma that these processes create. The findings suggest that gastrostomy denotes multiple meanings for parents and health care providers, and that an appreciation for these meanings can have a significant positive impact on nursing care for these children and their families.
1997
Thorne SE; Radford MJ; McCormick J
Journal Of Pediatric Nursing
1997
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1016/s0882-5963(97)80029-2" target="_blank" rel="noreferrer">10.1016/s0882-5963(97)80029-2</a>
Judging the effectiveness of analgesia for children and adolescents during vaso-occlusive events of sickle cell disease
Child; Female; Humans; Male; Analgesics; Anemia; adolescent; P.H.S.; Research Support; U.S. Gov't; Interviews; Pain/physiopathology; Opioid/therapeutic use; Analgesia/standards; Nalbuphine/therapeutic use; Sickle Cell/complications; Vascular Diseases/etiology/physiopathology/therapy
The effectiveness of analgesia during sickle cell crisis was examined in this descriptive, exploratory study. Pain scores (using the African-American Oucher and the Adolescent Pediatric Pain Tool) and analgesics administered were examined during a 2-hour observation/interview in the hospital while children/adolescents with sickle cell disease (SCD) experienced a vaso-occlusive episode (VOE). A convenience sample of twenty-one 6- to 16-year olds with SCD was included. Evidence indicated that 15 of the 21 children in the sample were in moderate to severe pain during their interviews, indicating that the analgesics did not effectively control their pain. Most participants (17) had received nalbuphine as the primary analgesic by intravenous infusion drip and/or patient-controlled analgesia pump. Many reasons were identified for the inadequate analgesia. The results suggested that the pain of SCD is very complex, requiring continuous adjustment of comfort measures, especially analgesics. More research is needed to examine pain control in children with SCD.
2000
Beyer JE
Journal Of Pain And Symptom Management
2000
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1016/s0885-3924(99)00134-7" target="_blank" rel="noreferrer">10.1016/s0885-3924(99)00134-7</a>
Pain variations during cancer treatment in children: a descriptive survey
Child; Female; Humans; Male; Pain Measurement; Family; Prevalence; adolescent; Preschool; Non-U.S. Gov't; Research Support; Interviews; infant; Neoplasms/physiopathology/psychology/therapy; Pain/epidemiology/physiopathology/therapy
Structural interviews were conducted with 66 children and their families to investigate how the experience of pain varied during cancer treatment. At diagnosis, 49% experienced cancer-related pain. Intense pain was more common at the beginning of treatment when it was often believed that pain treatment could be better. Procedure- and treatment-related pain were the major problems initially. Procedural pain gradually decreased, but treatment-related pain was constant and dominating. For some procedures pain was rated highest initially, lower during the second period, and higher again during the final part of treatment. Pain intensity measurement was seldom performed, and parents increasingly considered themselves better judges of their child's pain than professionals. Increased knowledge about pain and pain treatment in children with cancer, where most pain is iatrogenic, will help us to meet the needs and demands of children and parents, and to reduce pain to a minimum.
2000
Ljungman G; Gordh T; Sorensen S; Kreuger A
Pediatric Hematology And Oncology
2000
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1080/088800100276389" target="_blank" rel="noreferrer">10.1080/088800100276389</a>
Meaning in caregiving and its contribution to caregiver well-being.
Child; Female; Humans; Male; Home Nursing; Adult; Education; Emotions; Aged; Middle Aged; Disabled Persons; Longitudinal Studies; Time Factors; Frail Elderly; Research; Income; Regression Analysis; 80 and over; P.H.S.; Research Support; U.S. Gov't; Caregivers/psychology; Interviews; Comparative Study; Spouses
This multivariate study examined the relationship between meaning in caregiving--positive beliefs about the caregiving situation and the self as caregiver--and the psychological well-being of 131 informal caregivers to community-residing frail elders. Measures of well-being included depression, self-esteem, mastery, role captivity, and loss of self. Meaning in caregiving explained a significant portion of the differences in depression and self-esteem scores even after demographic and stressor variables had been controlled. Meaning was not related to mastery, role captivity, or loss of self. The conceptual parameters of meaning in caregiving are discussed, as are directions for future research.
1997
Noonan AE; Tennstedt SL
Gerontologist
1997
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1093/geront/37.6.785" target="_blank" rel="noreferrer">10.1093/geront/37.6.785</a>
Focus group interview with parents of children with medically complex needs: an intimate look at their perceptions and feelings.
Female; Humans; Male; Health Services Needs and Demand; Longitudinal Studies; Florida; Respite Care; Family Health; Counseling; Self-Help Groups; Interviews; Parents/psychology; Home Nursing/psychology; Patient Care Planning/standards
The purpose of this paper was to identify the needs of parents of children with medically complex needs from their own perception. In order to provide in-depth information, the focus group interview technique was used. Several strong recurrent themes were identified. The most persistent need was for a general organization or framework with which the care providers could operate. Along these same lines, the fragmentation of training, needs and services was consistently stated. A general lack of information in terms of home care and how to plan for the future was identified. Support groups were universally lauded for the invaluable services provided to the care parents.
1991
Diehl SF; Moffitt KA; Wade SM
Children's Health Care
1991
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1207/s15326888chc2003_6" target="_blank" rel="noreferrer">10.1207/s15326888chc2003_6</a>