scholarly journals Experiences of families involving a parent with progressive deafblindness

2022 ◽  
pp. 026461962110597
Author(s):  
Saskia Damen ◽  
Ilse van Zadelhoff ◽  
Corrie Tijsseling
Keyword(s):  
Peer Support ◽  
Usher Syndrome ◽  
Family Members ◽  
Well Being ◽  
Structured Interview ◽  
Photo Elicitation ◽  
Psychological Consequences ◽  
Entire Family ◽  
The Family ◽  
Open Coding

Usher syndrome is a progressive form of deafblindness, which can have significant psychological consequences. This study aimed to get insight in the perceived impact of Usher syndrome type 2 (USH2) on families with a parent affected by this syndrome, and in the experiences of these families with social, professional, and peer support. Participants were 10 parents with USH2 living in the Netherlands, 10 of their co-parents, and 10 of their children. The parents filled in questionnaires and participated in a semi-structured interview. A photo-elicitation interview and a semi-structured interview were administered to the children. Interviews were transcribed and systematically coded, using thematic and open coding. Parents rated the family’s quality of life in general as satisfactory. Both negative and positive consequences were described of USH2 for the family. Parents without USH2 and their children stated to provide support to the parent with USH2, which was often described as self-evident. Some parents without USH2, however, described their family tasks as a burden. Some parents also reported that psychological problems of the parent with USH2 affected the well-being of other family members. Several parents and some children expressed that the syndrome was hardly discussed within the family. Unfulfilled family support needs were mentioned, a lack of involvement of family members in the professional support, as well as a lack of professional and peer support for children and partners. This study revealed that USH2 in a parent has impact on the entire family. Family-centred approaches are recommended for professionals who support parents with Usher syndrome.

scholarly journals Social stigma in leprosy

2015 ◽  
Vol 5 (2) ◽  
pp. 6-10 ◽  
Author(s):  
S Marahatta ◽  
A Ghimire ◽  
N Jha ◽  
S M Pokhrel ◽  
S Rayamajhi ◽  
...  
Keyword(s):  
Community Education ◽  
Social Stigma ◽  
Family Members ◽  
Control Program ◽  
Well Being ◽  
Structured Interview ◽  
The Social ◽  
The Family ◽  
Male Patients ◽  
Leprosy Control

Leprosy, an infectious disease, is a highly stigmatized disease. It directly affects patients’ physical, psychological, social and economical well-being. To know the stigma faced by the patients in the family and community. The study was carried out at Netherlands Leprosy Relief, Biratnagar, Nepal. Verbal consent was taken from each patient. A total number of 34 patients who were diagnosed to have leprosy were interviewed. Data were collected using structured interview schedule that included questions seeking information about all aspects of objective. Although both men and women faced the social stigma of the disease, women suffered more rejection by the family members (50%), neighborhood (75%) and work places (62.5%) in comparison to male patients, who are affected maximum at work places (39%) and minimum in family (7.69%). Illiterate were avoided by family members (25%) and co-workers (75%) whereas literate were not. All unemployed patients were neglected in community whereas only 21.42% of employed were neglected. Leprosy is a highly stigmatized disease. Patients are neglected by their family and society. Therefore community education component of Leprosy Control Program needs to be strengthened.

scholarly journals Parental perspective: The role of prostheses and prosthetics services in adjusting to a child’s upper limb difference

2020 ◽  
pp. 1-7
Author(s):  
Tara Sims
Keyword(s):  
Coping Strategies ◽  
Peer Support ◽  
Upper Limb ◽  
Family Members ◽  
Parental Adjustment ◽  
Prosthetic Devices ◽  
The Family ◽  
The Impact

BACKGROUND: The impact of paediatric upper limb difference may extend beyond the child themselves to their parents and other family members. Previous research has found that feelings of shock, numbness and loss are common amongst parents and that peer support can be a buffer against stress. OBJECTIVE: The current study aimed to explore the experiences of parents of children with limb difference, and the role of services and prosthetic devices in these experiences. METHODS: Nine parents of children with limb difference participated in either a group (n= 2) or individual (n= 7) interview. RESULTS: Analysis of the interview transcripts revealed four themes – ‘grief and guilt’, ‘prosthesis as a tool for parental adjustment’, ‘support’ and ‘fun and humour’. CONCLUSIONS: Parents may employ coping strategies to help them adjust to their child’s limb difference, including use of a prosthesis, accessing support from statutory services and peers, and use of fun and humour within the family.

scholarly journals Psychological Consequences of the Delay in the Silent Mentor Programme During the COVID-19 Pandemic: Perspectives From Family Members of Silent Mentors

2021 ◽  
pp. 003022282110009
Author(s):  
Li Ping Wong ◽  
Sik Loo Tan ◽  
Haridah Alias ◽  
Thiam Eng Sia ◽  
Aik Saw
Keyword(s):  
Mental Health ◽  
Qualitative Interviews ◽  
Psychological Impact ◽  
Family Members ◽  
Well Being ◽  
The Body ◽  
Functional Health ◽  
Psychological Consequences ◽  
Negative Effect ◽  
Health And Well Being

The COVID-19 pandemic has put a hold on the Silent Mentor Programme (SMP); this pause has not only caused unprecedented challenges for the delivery of medical education but has forced changes in the programme ceremony sessions. We aimed to describe the psychological impact and experiences of family members of silent mentors during the COVID-19 pandemic using qualitative interviews. Many expressed feelings of remorse and unrest about the unprecedented delay of the SMP. The delay increased negative emotions particularly among some elderly family members; however, there was no prominent negative effect on their functional health and well-being. Several participants relayed the belief that the soul cannot rest until the body receives a proper burial while some worried about the deterioration of the physical condition of the mentors. In conclusion, findings provide insights into the importance of not overlooking the mental health implications of delaying the SMP in future outbreaks or crises.

Families Living with Mental Illness

2016 ◽  
Vol 4 (1) ◽  
Author(s):  
Aditi Rana
Keyword(s):  
Mental Illness ◽  
Mental Health Professionals ◽  
Mentally Ill ◽  
Family Members ◽  
Primary Caregivers ◽  
Well Being ◽  
Structured Interviews ◽  
Indian Context ◽  
The Family ◽  
Partner Research

Mental illness is a growing reality of our times. Usually in a typical Indian family, the parents act as the primary caregivers for the child suffering from mental disorder. For adult sufferers, it can also be siblings or offspring, and  at times even spouse or partner. Research on the experiences of families of mentally ill people has been minimal in the Indian context. This study aims to shift the focus from the mentally ill patients to the suffering of the caregivers and families of the patient keeping in mind the interconnected well being of the family in a collectivist culture. Following a qualitative approach, narratives have been taken from the family members of mentally ill (narratives of 8 families with mentally ill person) and also the mental health professionals (two) through semi structured interviews. The findings suggest that the family members suffer from a significant amount of stress accompanied by burden. Also, they feel secluded from the society and experience a lack of assistance to deal with the mentally ill member of the family.

scholarly journals Breaking the silence about illness and death: Potential effects of a pilot study of the family talk intervention when a parent with dependent children receives specialized palliative home care

2021 ◽  
pp. 1-7
Author(s):  
Megan Weber Falk ◽  
Rakel Eklund ◽  
Ulrika Kreicbergs ◽  
Anette Alvariza ◽  
Malin Lövgren
Keyword(s):  
Home Care ◽  
Family Relationships ◽  
Family Members ◽  
Family Coping ◽  
Open Communication ◽  
Entire Family ◽  
Palliative Home Care ◽  
Dependent Children ◽  
Palliative Care Setting ◽  
The Family

Abstract Objective The entire family is affected when a parent is severely ill. Parents often need and appreciate professional support when talking to children about illness and death. The family talk intervention (FTI) is family-centered and intends to promote communication about the illness and its consequences, support parenting to enhance family coping and help family members share experiences with each other to create a shared family history. This study aimed to explore potential effects of FTI in specialized palliative home care, as reported by parents. Method This pre-post test intervention pilot was conducted in specialized palliative home care. A convergent mixed-method design was used to analyze interview and questionnaire data. Twenty families with dependent children were recruited from two specialized palliative home care units in Stockholm, Sweden. Results Parents reported that family communication improved after participation in FTI as family members learned communication strategies that facilitated open sharing of thoughts and feelings. Increased open communication helped family members gain a better understanding of each other's perspectives. Parents reported that relationships with their partner and children had improved as they now shared several strategies for maintaining family relationships. Parents were also less worried following participation in FTI. The ill parents stated that they gained a sense of security and were less worried about the future. Significance of results This study adds to the evidence that FTI may be a useful intervention for families with dependent children and an ill parent in a palliative care setting. This trial is registered at ClinicalTrials.gov Identifier NCT03119545.

Cognitive Decline and the Changing Self in Relationship

2015 ◽  
pp. 61-75
Author(s):  
Darby Morhardt ◽  
Marcia Spira
Keyword(s):  
Alzheimer’S Disease ◽  
Alzheimer's Disease ◽  
Cognitive Decline ◽  
Family Member ◽  
Family Members ◽  
Well Being ◽  
Family Roles ◽  
The Family ◽  
Person With Dementia ◽  
The Impact

When a member of a family is diagnosed with Alzheimer's disease, the impact of the disease reverberates throughout the relationships within the family. This paper explores the challenges and strengths within one family as members manage and cope with Alzheimer's disease. The person with dementia and his family members are individually interviewed and each person explores the consequences of the disease on personal well-being as well as the relationships within the family. The family demonstrates how dementia in one family member demands flexibility in family roles as they navigate life through the challenges of living with dementia.

Impact on the family

2021 ◽  
pp. 111-125
Author(s):  
Veronica Dussel ◽  
Barbara Jones
Keyword(s):  
Social Care ◽  
Family Members ◽  
Well Being ◽  
Family Unit ◽  
Health And Social Care ◽  
The Family ◽  
Threatening Condition ◽  
Life Threatening ◽  
Limiting Condition ◽  
The Impact

In this chapter, we will focus on the importance of caring for the family of a child with a life-limiting condition (LLC) or life-threatening condition as a unit, each of the family members being integral to the well-being and care of the others. We recognize that the family unit itself is embedded within a wider context including the health and social care system, and more broadly within its society and culture. We discuss the concept of family, exploring the impact of having a child with an LLC, and how families adjust to this. We then expand on considerations about how to offer effective and timely support and help. We have included parents’ narratives with the aim of adding depth to the discussion, and in recognition of the truth of families’ own experiences.

Impact of family demands and family strengths and capabilities on family well-being and adaptation after critical injury

1998 ◽  
Vol 7 (5) ◽  
pp. 383-392 ◽  
Author(s):  
JS Leske ◽  
MK Jiricka
Keyword(s):  
Problem Solving ◽  
Family Members ◽  
Well Being ◽  
Family Strengths ◽  
Family Adaptation ◽  
Convenience Sample ◽  
The Family ◽  
Family Demands ◽  
Index Family ◽  
Critical Injury

BACKGROUND: Increases in demands on patients' family members that are not reduced by family strengths may contribute to decreases in family adaptation and complicate patients' recovery after trauma. The purpose of this study was to examine family demands (prior stressors and severity of patients' injuries) and family strengths and capabilities (hardiness, resources, coping, and problem-solving communication) associated with outcomes of family well-being and adaptation. METHODS: A multivariate, descriptive design based on the Resiliency Model of Family Stress was used. A convenience sample of family members (N = 51) of adult patients participated within the first 2 days of critical injury. Family demands were measured with the Family Inventory of Life Events and Changes and the Acute Physiology, Age, and Chronic Health Evaluation III. Family strengths were measured with the Family Hardiness Index, Family Inventory of Resources for Management, Family Crisis Oriented Personal Evaluation Scale, and Family Problem Solving Communication Index. Family adaptation outcomes were measured with the Family Well Being Index and Family Adaptation Scale. RESULTS: Increases in family demands were significantly related to decreases in family strengths and family adaptation. Family demands scores accounted for 40% of the variance in family well-being scores. The only significant family strength variable influencing family adaptation was problem-solving communication. CONCLUSIONS: Increases in family demands seem to be an important indicator of the amount of assistance a family may need. Interventions that help mobilize family strengths, such as problem-solving communication, may be effective in promoting the adaptation of families of critically injured patients.

scholarly journals Using Photo-Elicitation to Explore Families’ Experiences of Burn Camp

2018 ◽  
Vol 25 (1) ◽  
pp. 81-108 ◽  
Author(s):  
Laura Armstrong-James ◽  
Julia Cadogan ◽  
Heidi Williamson ◽  
Nichola Rumsey ◽  
Diana Harcourt
Keyword(s):  
Qualitative Study ◽  
Thematic Analysis ◽  
Family Members ◽  
Photo Elicitation ◽  
The Family ◽  
Carer Support

A qualitative study using photo-elicitation was conducted to investigate the experiences of family members attending a residential burn camp. Six families were provided with cameras and asked to take photographs of their time at camp. They were subsequently interviewed about their experiences of camp, using their photographs as prompts. Thematic analysis of interview transcripts identified three main themes: benefits for the family as a whole (new activities and experiences and lasting impacts), benefits for the child (having fun without feeling different), and benefits for the parent/carer (support from those who understand). This is the first study to specifically investigate the experience of the whole family at a burn camp and suggests that attendance may offer a number of benefits for parents/carers and children. Photo-elicitation was an effective method for encouraging participants to recall and discuss their time at camp, and should be considered in future burns research.

scholarly journals Photovoice in a Vietnamese Immigrant Family: Untold Partial Stories behind the Pictures

Genealogy ◽  
2020 ◽  
Vol 4 (3) ◽  
pp. 67 ◽  
Author(s):  
Ethan Tinh Trinh
Keyword(s):  
United States ◽  
Cultural Context ◽  
Past History ◽  
Family Members ◽  
Academic Research ◽  
The United States ◽  
Photo Elicitation ◽  
Immigrant Family ◽  
Immigrant Child ◽  
The Family

This paper, in the form of walking meditation, sitting, drinking, eating, and traveling among spaces and times, witnesses how the author as a Vietnamese immigrant child living in the United States (U.S.) traces untold stories of their family through family photos. Further, this paper attempts to find, understand and connect the relation between personal and political, between individual and collective, for a Vietnamese re-education camp detainee and his family, situated in political, historical, and cultural context. The use of photo elicitation comes from the desire that the reader can engage with the voices of the family members as they describe events in their past history. In addition, this paper refuses the forms of “category” and “fixed results” in writing up academic research. Rather, it will appear in the form of daily conversation, collected from multiple settings. Simply speaking, this paper is a form of storytelling that invites the readers to oscillate, communicate and think with the author’s family members on this historical journey.

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