Informal Caregivers of the Chronically Ill and Their Social Support: A Pilot Study

Wilson, Paul; Moore, Stephen T.; Rubin, Msw Dana S.; Bartels, Msw Pamela K.

doi:10.1300/j083v15n01_14

Cited by 21 publications

(13 citation statements)

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“…However, caregivers were significantly less satisfied with their social support than controls and had decreased activities with friends, fewer vacations, and lower church attendance. Data from the present study supports previous work that found higher levels of social support related to better mood [8,13], and adds to the literature by suggesting the relation partially mediates role strains and well-being.…”

Section: Discussionsupporting

confidence: 88%

“…For example, patients with a rheumatic disease listed pain or weakness, fatigue, and lack of interest as the top *Address correspondence to this author at the IUPUI, Department of Psychology, 402 North Blackford Street, LD 124, Indianapolis, Indiana, USA; three problems experienced in their sexual relation [6]. Caregivers also sacrifice activities that bring them personal and social fulfillment, such as vacations or hobbies [7], or contacts with friends and family [8].Individuals with higher demand loads from their care recipients experience more strain than those with lower caregiving demands. For example, Northouse, Templin, and Mood [9] found that illness severity in breast cancer patients had a direct effect on predicting role adjustment in husbands.…”

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confidence: 99%

“…For example, in caregivers, social support moderates the effects between the patients' level of cognitive dysfunction after a traumatic brain injury and the caregivers' satisfaction with life [17]. Additionally, social support, through the mediating influence of social participation, has been related to higher levels of wellbeing and life satisfaction in informal caregivers of the elderly [8]. Furthermore, Chang and colleagues [13] have reported that in those caring for Alzheimer's and other dementia patients, occupying more roles was related to less social support, which was related to more depression and less satisfaction.…”

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confidence: 99%

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Role Strains and Mood in Husbands of Women with Fibromyalgia Syndrome: A Test of the Stress Process Model

Bigatti¹,

Lydon²,

Brothers³

2008

TOFAMSJ

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Spouses of patients experience role strains as a result of informal caregiving, which has been associated with mood in numerous research studies. However, most research is on female caregivers, and little is known about the experience of male spouses, or of the caregiving provided to fibromyalgia patients. The Stress Process Model was used to examine mediators and moderators of the relation between role strain and mood among 135 husbands of women with fibromyalgia. Results indicated that the more activities of daily living and instrumental activities of daily living performed by the husband, the greater the role strain. Role strain was associated with worse mood. A test of the Stress Process Model supported a partial mediation model, where social support and emotion-focused coping partially mediated the relation between role strain and mood. No evidence was found for a moderation model or for problem-focused coping as a mediator. Our research suggests significant impairment and caregiving needs among this patient population, which in turn relates to the mood of the husband who is also an informal caregiver. Our findings also support the Stress Process Model in explaining the complexity of caregiving effects. The results of the study suggest avenues for intervention for individuals strained by their partners' illness.Spouses of chronically ill individuals have poorer mental health than comparison groups and the general population [1,2]. Spouses may be affected because the illness may require informal caregiving, including assistance with activities of daily living (ADLs; such as toileting, dressing), instrumental activities of daily living (IADLs; such as shopping), and taking over responsibilities that the patient can no longer perform (such as cleaning, cooking). These caregiving responsibilities may interfere with spouses' abilities to perform other roles, resulting in role strains.Role strains, experienced daily by most individuals, are defined as the difficulties felt by individuals who have multiple roles with accompanying obligations [3]. For caregivers, the additional responsibility of helping a patient with a health condition may divert much needed resources from the other roles currently fulfilled by the individual, causing role strain. Roles typically examined for strain include work, domestic environment, sexual relations, family relations, and social relations. Of the employed caregiving husbands in a national study of frail elderly, 32% reported working fewer hours, 28% indicated they rearranged their schedule, and 24% took time off without pay because of their wives' illness [4]. In the domestic environment, husbands report an increase in the amount of time spent on household chores as a direct result of their wives' illness or disability [5]. A chronic illness may affect the couple's sexual relations as well. For example, patients with a rheumatic disease listed pain or weakness, fatigue, and lack of interest as the top *Address correspondence to this author at the IUPUI, Department of P...

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Section: Discussionsupporting

confidence: 88%

mentioning

confidence: 99%

mentioning

confidence: 99%

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Role Strains and Mood in Husbands of Women with Fibromyalgia Syndrome: A Test of the Stress Process Model

Bigatti¹,

Lydon²,

Brothers³

2008

TOFAMSJ

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“…Further bias may be present in this urban sample, as their access to both specialist palliativecare services and social support networks may differ from other populations. Both of these factors are shown to enhance carers' satisfaction and psychological health [5] and their coping [24] respectively. Finally, caution must be exercised when interpreting correlations between variables in cross-sectional data, as causal relationships cannot be confirmed.…”

Section: Discussionmentioning

confidence: 99%

The relationship between patient characteristics and carer psychological status in home palliative cancer care

Harding

Higginson

Donaldson

2003

Supportive Care in Cancer

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Adequate provision of patient psychological interventions and effective pain education and control are needed in order to improve carers' psychological health. Patient characteristics are associated with apparently opposing forms of carers' coping (i.e. both avoidance and engagement), demonstrating the importance of interventions addressing a range of coping responses. Further research is needed to understand why carers employ problem-focused coping in response to symptoms but not to pain. Evidence-based interventions for informal carers are urgently needed but must be delivered in the context of optimal patient pain and symptom control.

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“…However, mothers of children with ASD are often deprived of possible health benefits from leisure participation. Various scholars have suggested that mother caregivers who have children with ASD have limited opportunity to pursue their personal leisure interests or engage in leisure and social activities compared to parents who have children without disabilities (Mugno, Ruta, D’Arrigo, & Mazzone, 2007; Rivers & Stoneman, 2003; Wilson, Moore, Rubin, & Bartels, 1990; Weinblatt & Navon, 1995). Furthermore, the prevalence of social stigma towards persons with disabilities in the general public and the lack of social support for parents of children with disabilities often exacerbate limitations to their leisure participation and discourage mothers of children with ASD from getting involved in daily leisure activities without their children (Corman, 2007; Norton & Drew, 1994).…”

Section: Introductionmentioning

confidence: 99%

Listening to the screaming whisper: a voice of mother caregivers of children with autistic spectrum disorder (ASD)

Kim

Voight

et al. 2018

International Journal of Qualitative Studies on Health and Well

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Purpose:This is a gap in knowledge related to leisure behaviours among mothers who have children with autistic spectrum disorder (ASD). This study intended to understand leisure behaviours associated with leisure constraints among these mother caregivers. Method: Using a series of semi- structured interviews, a total of 12 participants engaged in this study. Results: Our findings consisted of two sections: (1) leisure negotiation and (2) leisure constraints which are (a) a lack of time for themselves, (b) constant attention, and (c) difficulty in finding a helper. Conclusions: This study found that participants modified their leisure patterns as they sought to provide more recreational opportunities for their children. It suggests that participants negotiated their leisure choices and developed family adaptability related to family leisure in order to suit the desires and needs of their child with ASD.

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Informal Caregivers of the Chronically Ill and Their Social Support: A Pilot Study

Cited by 21 publications

References 0 publications

Role Strains and Mood in Husbands of Women with Fibromyalgia Syndrome: A Test of the Stress Process Model

Role Strains and Mood in Husbands of Women with Fibromyalgia Syndrome: A Test of the Stress Process Model

The relationship between patient characteristics and carer psychological status in home palliative cancer care

Listening to the screaming whisper: a voice of mother caregivers of children with autistic spectrum disorder (ASD)

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